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  • lxdimd1
    I have tried to get information of any kind.I also have tried to get the family packet from the ahckids website and have not received anything.Is there
    Message 1 of 23 , Aug 5, 2008
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      I have tried to get information of any kind.I also have tried to get
      the family packet from the ahckids website and have not received
      anything.Is there anywhere else I can get information???Please someone
      point me in the right direction.
    • paigeashworth@yahoo.com
      I have also tried to get information. Let me know if you are successful. Sent via BlackBerry by AT&T ... From: lxdimd1 Date: Tue, 05 Aug
      Message 2 of 23 , Aug 5, 2008
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        I have also tried to get information. Let me know if you are successful.
        Sent via BlackBerry by AT&T

        -----Original Message-----
        From: "lxdimd1" <lxdimd1@...>

        Date: Tue, 05 Aug 2008 17:56:12
        To: <afha@yahoogroups.com>
        Subject: [ahc] getting information


        I have tried to get information of any kind.I also have tried to get
        the family packet from the ahckids website and have not received
        anything.Is there anywhere else I can get information???Please someone
        point me in the right direction.




        [Non-text portions of this message have been removed]
      • kcventi
        I am not sure if you are talking about looking for information on the Chicago meeting but usually what happens after a meeting is Lynn Egan and her husband
        Message 3 of 23 , Aug 5, 2008
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          I am not sure if you are talking about looking for information on the Chicago meeting but usually what happens after a meeting is Lynn Egan and her husband Mark who tape the meeting, have to transfer it to cd. Then she'll email the group to ask if anyone wants her to send a copy (with small fee to cover shipping). It does take a little time to get the download done but they are very quick.

          If this is what you are looking for, you may want to email lynn and her email is on www.ahckids.org

          As for info on clinical trial, I think we are waiting but you could try emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps

          Karen



          paigeashworth@... wrote:
          I have also tried to get information. Let me know if you are successful.
          Sent via BlackBerry by AT&T

          -----Original Message-----
          From: "lxdimd1" <lxdimd1@...>

          Date: Tue, 05 Aug 2008 17:56:12
          To: <afha@yahoogroups.com>
          Subject: [ahc] getting information


          I have tried to get information of any kind.I also have tried to get
          the family packet from the ahckids website and have not received
          anything.Is there anywhere else I can get information???Please someone
          point me in the right direction.



          [Non-text portions of this message have been removed]






          [Non-text portions of this message have been removed]
        • paigeashworth@yahoo.com
          I would like information on clinical triail. Me son just turned for an dsince may his episodes have icreased. They put him on a new medicine saturday that is a
          Message 4 of 23 , Aug 5, 2008
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            I would like information on clinical triail. Me son just turned for an dsince may his episodes have icreased. They put him on a new medicine saturday that is a calcium channel blocker.
            Sent via BlackBerry by AT&T

            -----Original Message-----
            From: kcventi <kcventi@...>

            Date: Tue, 5 Aug 2008 12:18:05
            To: <afha@yahoogroups.com>
            Subject: Re: [ahc] getting information


            I am not sure if you are talking about looking for information on the Chicago meeting but usually what happens after a meeting is Lynn Egan and her husband Mark who tape the meeting, have to transfer it to cd. Then she'll email the group to ask if anyone wants her to send a copy (with small fee to cover shipping). It does take a little time to get the download done but they are very quick.

            If this is what you are looking for, you may want to email lynn and her email is on www.ahckids.org

            As for info on clinical trial, I think we are waiting but you could try emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps

            Karen



            paigeashworth@... wrote:
            I have also tried to get information. Let me know if you are successful.
            Sent via BlackBerry by AT&T

            -----Original Message-----
            From: "lxdimd1" <lxdimd1@...>

            Date: Tue, 05 Aug 2008 17:56:12
            To: <afha@yahoogroups.com>
            Subject: [ahc] getting information


            I have tried to get information of any kind.I also have tried to get
            the family packet from the ahckids website and have not received
            anything.Is there anywhere else I can get information???Please someone
            point me in the right direction.



            [Non-text portions of this message have been removed]






            [Non-text portions of this message have been removed]




            [Non-text portions of this message have been removed]
          • Tina
            Jaci is on a calcium channel blocker called Sular. This does not prevent her from having episodes but it does help her pull out of the quicker, they don t
            Message 5 of 23 , Aug 5, 2008
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              Jaci is on a calcium channel blocker called Sular. This does not prevent her from having episodes but it does help her pull out of the quicker, they don' t seeem to last as long. Does anyone have issues with oppositional difiance disorder with thier child?



              ----- Original Message ----
              From: "paigeashworth@..." <paigeashworth@...>
              To: afha@yahoogroups.com
              Sent: Tuesday, August 5, 2008 3:20:03 PM
              Subject: Re: [ahc] getting information


              I would like information on clinical triail. Me son just turned for an dsince may his episodes have icreased. They put him on a new medicine saturday that is a calcium channel blocker.
              Sent via BlackBerry by AT&T

              -----Original Message-----
              From: kcventi <kcventi@verizon. net>

              Date: Tue, 5 Aug 2008 12:18:05
              To: <afha@yahoogroups. com>
              Subject: Re: [ahc] getting information


              I am not sure if you are talking about looking for information on the Chicago meeting but usually what happens after a meeting is Lynn Egan and her husband Mark who tape the meeting, have to transfer it to cd. Then she'll email the group to ask if anyone wants her to send a copy (with small fee to cover shipping). It does take a little time to get the download done but they are very quick.

              If this is what you are looking for, you may want to email lynn and her email is on www.ahckids. org

              As for info on clinical trial, I think we are waiting but you could try emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps

              Karen



              paigeashworth@ yahoo.com wrote:
              I have also tried to get information. Let me know if you are successful.
              Sent via BlackBerry by AT&T

              -----Original Message-----
              From: "lxdimd1" <lxdimd1@yahoo. com>

              Date: Tue, 05 Aug 2008 17:56:12
              To: <afha@yahoogroups. com>
              Subject: [ahc] getting information


              I have tried to get information of any kind.I also have tried to get
              the family packet from the ahckids website and have not received
              anything.Is there anywhere else I can get information? ??Please someone
              point me in the right direction.



              [Non-text portions of this message have been removed]






              [Non-text portions of this message have been removed]



              [Non-text portions of this message have been removed]






              [Non-text portions of this message have been removed]
            • paigeashworth@yahoo.com
              The channel blocker my son is on is called nifedipine. He also takes diamox and biotin. Up to this point my son has not lost any cognitive or communication
              Message 6 of 23 , Aug 5, 2008
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                The channel blocker my son is on is called nifedipine. He also takes diamox and biotin. Up to this point my son has not lost any cognitive or communication skills but with the episodes increasing I am very worried about this. He can't tolerate the sun at all and I am having problems with schools accomidating his needs.
                Sent via BlackBerry by AT&T

                -----Original Message-----
                From: Tina <mycrew5@...>

                Date: Tue, 5 Aug 2008 15:54:32
                To: <afha@yahoogroups.com>
                Subject: Re: [ahc] getting information


                Jaci is on a calcium channel blocker called Sular. This does not prevent her from having episodes but it does help her pull out of the quicker, they don' t seeem to last as long. Does anyone have issues with oppositional difiance disorder with thier child?



                ----- Original Message ----
                From: "paigeashworth@..." <paigeashworth@...>
                To: afha@yahoogroups.com
                Sent: Tuesday, August 5, 2008 3:20:03 PM
                Subject: Re: [ahc] getting information


                I would like information on clinical triail. Me son just turned for an dsince may his episodes have icreased. They put him on a new medicine saturday that is a calcium channel blocker.
                Sent via BlackBerry by AT&T

                -----Original Message-----
                From: kcventi <kcventi@verizon. net>

                Date: Tue, 5 Aug 2008 12:18:05
                To: <afha@yahoogroups. com>
                Subject: Re: [ahc] getting information


                I am not sure if you are talking about looking for information on the Chicago meeting but usually what happens after a meeting is Lynn Egan and her husband Mark who tape the meeting, have to transfer it to cd. Then she'll email the group to ask if anyone wants her to send a copy (with small fee to cover shipping). It does take a little time to get the download done but they are very quick.

                If this is what you are looking for, you may want to email lynn and her email is on www.ahckids. org

                As for info on clinical trial, I think we are waiting but you could try emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps

                Karen



                paigeashworth@ yahoo.com wrote:
                I have also tried to get information. Let me know if you are successful.
                Sent via BlackBerry by AT&T

                -----Original Message-----
                From: "lxdimd1" <lxdimd1@yahoo. com>

                Date: Tue, 05 Aug 2008 17:56:12
                To: <afha@yahoogroups. com>
                Subject: [ahc] getting information


                I have tried to get information of any kind.I also have tried to get
                the family packet from the ahckids website and have not received
                anything.Is there anywhere else I can get information? ??Please someone
                point me in the right direction.



                [Non-text portions of this message have been removed]






                [Non-text portions of this message have been removed]



                [Non-text portions of this message have been removed]






                [Non-text portions of this message have been removed]




                [Non-text portions of this message have been removed]
              • Tina
                The school has to accomidate all his needs, don t let them make you feel like you are requesting terrible stuff, they will do it, you just have to push a
                Message 7 of 23 , Aug 5, 2008
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                  The school has to accomidate all his needs, don' t let them make you feel like you are requesting terrible stuff, they will do it, you just have to push a little hard sometimes. Like i have said before Jaci is 28 and she is VERY communative and ok with the cognitive and she has gone thru her share of episodes, maybe your son will be the same as he grows older.



                  ----- Original Message ----
                  From: "paigeashworth@..." <paigeashworth@...>
                  To: afha@yahoogroups.com
                  Sent: Tuesday, August 5, 2008 7:06:24 PM
                  Subject: Re: [ahc] getting information


                  The channel blocker my son is on is called nifedipine. He also takes diamox and biotin. Up to this point my son has not lost any cognitive or communication skills but with the episodes increasing I am very worried about this. He can't tolerate the sun at all and I am having problems with schools accomidating his needs.
                  Sent via BlackBerry by AT&T

                  -----Original Message-----
                  From: Tina <mycrew5@yahoo. com>

                  Date: Tue, 5 Aug 2008 15:54:32
                  To: <afha@yahoogroups. com>
                  Subject: Re: [ahc] getting information


                  Jaci is on a calcium channel blocker called Sular. This does not prevent her from having episodes but it does help her pull out of the quicker, they don' t seeem to last as long. Does anyone have issues with oppositional difiance disorder with thier child?



                  ----- Original Message ----
                  From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                  To: afha@yahoogroups. com
                  Sent: Tuesday, August 5, 2008 3:20:03 PM
                  Subject: Re: [ahc] getting information


                  I would like information on clinical triail. Me son just turned for an dsince may his episodes have icreased. They put him on a new medicine saturday that is a calcium channel blocker.
                  Sent via BlackBerry by AT&T

                  -----Original Message-----
                  From: kcventi <kcventi@verizon. net>

                  Date: Tue, 5 Aug 2008 12:18:05
                  To: <afha@yahoogroups. com>
                  Subject: Re: [ahc] getting information


                  I am not sure if you are talking about looking for information on the Chicago meeting but usually what happens after a meeting is Lynn Egan and her husband Mark who tape the meeting, have to transfer it to cd. Then she'll email the group to ask if anyone wants her to send a copy (with small fee to cover shipping). It does take a little time to get the download done but they are very quick.

                  If this is what you are looking for, you may want to email lynn and her email is on www.ahckids. org

                  As for info on clinical trial, I think we are waiting but you could try emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps

                  Karen



                  paigeashworth@ yahoo.com wrote:
                  I have also tried to get information. Let me know if you are successful.
                  Sent via BlackBerry by AT&T

                  -----Original Message-----
                  From: "lxdimd1" <lxdimd1@yahoo. com>

                  Date: Tue, 05 Aug 2008 17:56:12
                  To: <afha@yahoogroups. com>
                  Subject: [ahc] getting information


                  I have tried to get information of any kind.I also have tried to get
                  the family packet from the ahckids website and have not received
                  anything.Is there anywhere else I can get information? ??Please someone
                  point me in the right direction.



                  [Non-text portions of this message have been removed]






                  [Non-text portions of this message have been removed]



                  [Non-text portions of this message have been removed]






                  [Non-text portions of this message have been removed]



                  [Non-text portions of this message have been removed]






                  [Non-text portions of this message have been removed]
                • paigeashworth@yahoo.com
                  Do you know anything about the regression. Like at the age of 4 could he Still regress were he loses his skills. He is very smart and I think that is why I am
                  Message 8 of 23 , Aug 5, 2008
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                    Do you know anything about the regression. Like at the age of 4 could he Still regress were he loses his skills. He is very smart and I think that is why I am having problems with the schools. They were putting him in time out because he refused to participate in art when I had told them numerous times his has fine and gross motor delays And they look at me like I am a paranoid mother.
                    Sent via BlackBerry by AT&T

                    -----Original Message-----
                    From: Tina <mycrew5@...>

                    Date: Tue, 5 Aug 2008 16:18:21
                    To: <afha@yahoogroups.com>
                    Subject: Re: [ahc] getting information


                    The school has to accomidate all his needs, don' t let them make you feel like you are requesting terrible stuff, they will do it, you just have to push a little hard sometimes. Like i have said before Jaci is 28 and she is VERY communative and ok with the cognitive and she has gone thru her share of episodes, maybe your son will be the same as he grows older.



                    ----- Original Message ----
                    From: "paigeashworth@..." <paigeashworth@...>
                    To: afha@yahoogroups.com
                    Sent: Tuesday, August 5, 2008 7:06:24 PM
                    Subject: Re: [ahc] getting information


                    The channel blocker my son is on is called nifedipine. He also takes diamox and biotin. Up to this point my son has not lost any cognitive or communication skills but with the episodes increasing I am very worried about this. He can't tolerate the sun at all and I am having problems with schools accomidating his needs.
                    Sent via BlackBerry by AT&T

                    -----Original Message-----
                    From: Tina <mycrew5@yahoo. com>

                    Date: Tue, 5 Aug 2008 15:54:32
                    To: <afha@yahoogroups. com>
                    Subject: Re: [ahc] getting information


                    Jaci is on a calcium channel blocker called Sular. This does not prevent her from having episodes but it does help her pull out of the quicker, they don' t seeem to last as long. Does anyone have issues with oppositional difiance disorder with thier child?



                    ----- Original Message ----
                    From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                    To: afha@yahoogroups. com
                    Sent: Tuesday, August 5, 2008 3:20:03 PM
                    Subject: Re: [ahc] getting information


                    I would like information on clinical triail. Me son just turned for an dsince may his episodes have icreased. They put him on a new medicine saturday that is a calcium channel blocker.
                    Sent via BlackBerry by AT&T

                    -----Original Message-----
                    From: kcventi <kcventi@verizon. net>

                    Date: Tue, 5 Aug 2008 12:18:05
                    To: <afha@yahoogroups. com>
                    Subject: Re: [ahc] getting information


                    I am not sure if you are talking about looking for information on the Chicago meeting but usually what happens after a meeting is Lynn Egan and her husband Mark who tape the meeting, have to transfer it to cd. Then she'll email the group to ask if anyone wants her to send a copy (with small fee to cover shipping). It does take a little time to get the download done but they are very quick.

                    If this is what you are looking for, you may want to email lynn and her email is on www.ahckids. org

                    As for info on clinical trial, I think we are waiting but you could try emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps

                    Karen



                    paigeashworth@ yahoo.com wrote:
                    I have also tried to get information. Let me know if you are successful.
                    Sent via BlackBerry by AT&T

                    -----Original Message-----
                    From: "lxdimd1" <lxdimd1@yahoo. com>

                    Date: Tue, 05 Aug 2008 17:56:12
                    To: <afha@yahoogroups. com>
                    Subject: [ahc] getting information


                    I have tried to get information of any kind.I also have tried to get
                    the family packet from the ahckids website and have not received
                    anything.Is there anywhere else I can get information? ??Please someone
                    point me in the right direction.



                    [Non-text portions of this message have been removed]






                    [Non-text portions of this message have been removed]



                    [Non-text portions of this message have been removed]






                    [Non-text portions of this message have been removed]



                    [Non-text portions of this message have been removed]






                    [Non-text portions of this message have been removed]




                    [Non-text portions of this message have been removed]
                  • Tina
                    I don t know much about the regression ........I have seen Jaci lose the knowledge/ability to do something and have to reteach her. I do not know why she
                    Message 9 of 23 , Aug 5, 2008
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                      I don't know much about the regression
                      ........I have seen Jaci lose the knowledge/ability to do something and have to reteach her. I do not know why she knows something then one day she doesn't know it. If that is regression or not I am not to sure. There needs to be a happy middle for teacher/child/parent. If he can't do what the other kids are doing during art, then they need to put him with a one on one to help him with it, or they can find another activity that is going on in another classroom say like music where he can particiapate with the kids from the other class for "art time". It is hard on the teachers if the other kids see your son not doing art because he doesn't want to or cause he can't, the kids pick up on this and want to follow the lets not do this routine. Instead of saying "he can't do art, don't make him do it..........go in with the ok guys he has trouble with art is there another activity that he can do while the kids are doing art that doesn't take away from
                      anyone. This might help. Having a solution to the problem helps the teachers alot, and they will more than likely take the solution a lot better. He is 4 right, does he not like doing anyting with art......clay, play doh, crayons, writing, cutting anything that he could do while the others are doing there thing. Also is there not a child that is faster than all the other kids that when that child gets done wit the project he could help your son, or even help your son during the whole project. Is there not any teacher assistants that could be right there with your son, but yet help others to. One thing we don't ever want to do is make the teachers feel like they are babysitters for our special needs children, and alot of us do that. If we chose to mainstream our children, we need to help with overcoming the obsticles with them that our children face.



                      ----- Original Message ----
                      From: "paigeashworth@..." <paigeashworth@...>
                      To: afha@yahoogroups.com
                      Sent: Tuesday, August 5, 2008 7:27:59 PM
                      Subject: Re: [ahc] getting information


                      Do you know anything about the regression. Like at the age of 4 could he Still regress were he loses his skills. He is very smart and I think that is why I am having problems with the schools. They were putting him in time out because he refused to participate in art when I had told them numerous times his has fine and gross motor delays And they look at me like I am a paranoid mother.
                      Sent via BlackBerry by AT&T

                      -----Original Message-----
                      From: Tina <mycrew5@yahoo. com>

                      Date: Tue, 5 Aug 2008 16:18:21
                      To: <afha@yahoogroups. com>
                      Subject: Re: [ahc] getting information


                      The school has to accomidate all his needs, don' t let them make you feel like you are requesting terrible stuff, they will do it, you just have to push a little hard sometimes. Like i have said before Jaci is 28 and she is VERY communative and ok with the cognitive and she has gone thru her share of episodes, maybe your son will be the same as he grows older.



                      ----- Original Message ----
                      From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                      To: afha@yahoogroups. com
                      Sent: Tuesday, August 5, 2008 7:06:24 PM
                      Subject: Re: [ahc] getting information


                      The channel blocker my son is on is called nifedipine. He also takes diamox and biotin. Up to this point my son has not lost any cognitive or communication skills but with the episodes increasing I am very worried about this. He can't tolerate the sun at all and I am having problems with schools accomidating his needs.
                      Sent via BlackBerry by AT&T

                      -----Original Message-----
                      From: Tina <mycrew5@yahoo. com>

                      Date: Tue, 5 Aug 2008 15:54:32
                      To: <afha@yahoogroups. com>
                      Subject: Re: [ahc] getting information


                      Jaci is on a calcium channel blocker called Sular. This does not prevent her from having episodes but it does help her pull out of the quicker, they don' t seeem to last as long. Does anyone have issues with oppositional difiance disorder with thier child?



                      ----- Original Message ----
                      From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                      To: afha@yahoogroups. com
                      Sent: Tuesday, August 5, 2008 3:20:03 PM
                      Subject: Re: [ahc] getting information


                      I would like information on clinical triail. Me son just turned for an dsince may his episodes have icreased. They put him on a new medicine saturday that is a calcium channel blocker.
                      Sent via BlackBerry by AT&T

                      -----Original Message-----
                      From: kcventi <kcventi@verizon. net>

                      Date: Tue, 5 Aug 2008 12:18:05
                      To: <afha@yahoogroups. com>
                      Subject: Re: [ahc] getting information


                      I am not sure if you are talking about looking for information on the Chicago meeting but usually what happens after a meeting is Lynn Egan and her husband Mark who tape the meeting, have to transfer it to cd. Then she'll email the group to ask if anyone wants her to send a copy (with small fee to cover shipping). It does take a little time to get the download done but they are very quick.

                      If this is what you are looking for, you may want to email lynn and her email is on www.ahckids. org

                      As for info on clinical trial, I think we are waiting but you could try emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps

                      Karen



                      paigeashworth@ yahoo.com wrote:
                      I have also tried to get information. Let me know if you are successful.
                      Sent via BlackBerry by AT&T

                      -----Original Message-----
                      From: "lxdimd1" <lxdimd1@yahoo. com>

                      Date: Tue, 05 Aug 2008 17:56:12
                      To: <afha@yahoogroups. com>
                      Subject: [ahc] getting information


                      I have tried to get information of any kind.I also have tried to get
                      the family packet from the ahckids website and have not received
                      anything.Is there anywhere else I can get information? ??Please someone
                      point me in the right direction.



                      [Non-text portions of this message have been removed]






                      [Non-text portions of this message have been removed]



                      [Non-text portions of this message have been removed]






                      [Non-text portions of this message have been removed]



                      [Non-text portions of this message have been removed]






                      [Non-text portions of this message have been removed]



                      [Non-text portions of this message have been removed]






                      [Non-text portions of this message have been removed]
                    • kcventi
                      You are not a paranoid mother. I think alot of us have felt the pressure of advocating for our children with schools and doctors when their condition changes
                      Message 10 of 23 , Aug 6, 2008
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                        You are not a paranoid mother. I think alot of us have felt the pressure of advocating for our children with schools and doctors when their condition changes so much to everyday stimuli. It is hard for everyone.

                        If you feel you need more info on your child's abilities and disabilities, get an outside neuropsyche evaluation. Look for a neuropsychologist that is highly recommended in your area and has worked with children with complex med conditions or is possibly linked to a specialty service like neurology/epilepsy or metobolic or movement disorders depts. Often your local PAC (parent action comittee set up by parents of sped ed kids) can supply list of neuropyschologist in area.

                        This eval should assess your child's skills and learning style so you can have unbiased info to work with your school and pull together and IEP for services, perhaps care plan if needed, speech, therapies and academic supports. A great website for info about your child's school rights is www.wrightslaw.com.

                        Our daughter continued and still continues to progress. Her motor is affected but we find it is more inhibited by the seizures she exper with exertion than her abilities. She can climb and run, cut and color but only for short times before she tremors. Her learning has really picked up with the right 1 on 1 reading and math supports. She couldn't keep up in in groups until basic skills acquired. Start early if possible! Also we have found over time that she is learning with intense support but her rate of growth is slower than peers and this becomes more evident as she ages.

                        We have experiences alot of issues with her needed accomodations of sleep mid day, air conditioning and no old flickering flourescent lighting. So as you can imagine, the schools have a lot to meet and it's not easy for anyone. Unfortunately ours decided to say no and send her home at lunch and give one hour of home tutoring. This is not fair and she wants to be w/friends but needs to sleep mid day to make it through day without worsening her health.

                        You just have to push to get what your child needs to progress to the best of his potential. It's hard and exasperating with everything else on your plate. That's why this group is so helpful.

                        Keep in touch and let us know how things go.

                        Karen


                        paigeashworth@... wrote:
                        Do you know anything about the regression. Like at the age of 4 could he Still regress were he loses his skills. He is very smart and I think that is why I am having problems with the schools. They were putting him in time out because he refused to participate in art when I had told them numerous times his has fine and gross motor delays And they look at me like I am a paranoid mother.
                        Sent via BlackBerry by AT&T

                        -----Original Message-----
                        From: Tina <mycrew5@...>

                        Date: Tue, 5 Aug 2008 16:18:21
                        To: <afha@yahoogroups.com>
                        Subject: Re: [ahc] getting information


                        The school has to accomidate all his needs, don' t let them make you feel like you are requesting terrible stuff, they will do it, you just have to push a little hard sometimes. Like i have said before Jaci is 28 and she is VERY communative and ok with the cognitive and she has gone thru her share of episodes, maybe your son will be the same as he grows older.



                        ----- Original Message ----
                        From: "paigeashworth@..." <paigeashworth@...>
                        To: afha@yahoogroups.com
                        Sent: Tuesday, August 5, 2008 7:06:24 PM
                        Subject: Re: [ahc] getting information


                        The channel blocker my son is on is called nifedipine. He also takes diamox and biotin. Up to this point my son has not lost any cognitive or communication skills but with the episodes increasing I am very worried about this. He can't tolerate the sun at all and I am having problems with schools accomidating his needs.
                        Sent via BlackBerry by AT&T

                        -----Original Message-----
                        From: Tina <mycrew5@yahoo. com>

                        Date: Tue, 5 Aug 2008 15:54:32
                        To: <afha@yahoogroups. com>
                        Subject: Re: [ahc] getting information


                        Jaci is on a calcium channel blocker called Sular. This does not prevent her from having episodes but it does help her pull out of the quicker, they don' t seeem to last as long. Does anyone have issues with oppositional difiance disorder with thier child?



                        ----- Original Message ----
                        From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                        To: afha@yahoogroups. com
                        Sent: Tuesday, August 5, 2008 3:20:03 PM
                        Subject: Re: [ahc] getting information


                        I would like information on clinical triail. Me son just turned for an dsince may his episodes have icreased. They put him on a new medicine saturday that is a calcium channel blocker.
                        Sent via BlackBerry by AT&T

                        -----Original Message-----
                        From: kcventi <kcventi@verizon. net>

                        Date: Tue, 5 Aug 2008 12:18:05
                        To: <afha@yahoogroups. com>
                        Subject: Re: [ahc] getting information


                        I am not sure if you are talking about looking for information on the Chicago meeting but usually what happens after a meeting is Lynn Egan and her husband Mark who tape the meeting, have to transfer it to cd. Then she'll email the group to ask if anyone wants her to send a copy (with small fee to cover shipping). It does take a little time to get the download done but they are very quick.

                        If this is what you are looking for, you may want to email lynn and her email is on www.ahckids. org

                        As for info on clinical trial, I think we are waiting but you could try emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps

                        Karen



                        paigeashworth@ yahoo.com wrote:
                        I have also tried to get information. Let me know if you are successful.
                        Sent via BlackBerry by AT&T

                        -----Original Message-----
                        From: "lxdimd1" <lxdimd1@yahoo. com>

                        Date: Tue, 05 Aug 2008 17:56:12
                        To: <afha@yahoogroups. com>
                        Subject: [ahc] getting information


                        I have tried to get information of any kind.I also have tried to get
                        the family packet from the ahckids website and have not received
                        anything.Is there anywhere else I can get information? ??Please someone
                        point me in the right direction.



                        [Non-text portions of this message have been removed]






                        [Non-text portions of this message have been removed]



                        [Non-text portions of this message have been removed]






                        [Non-text portions of this message have been removed]



                        [Non-text portions of this message have been removed]






                        [Non-text portions of this message have been removed]



                        [Non-text portions of this message have been removed]






                        [Non-text portions of this message have been removed]
                      • renny01@verizon.net
                        ... Does anyone have experience with giving valium during an AHC episode. Alecs episodes have gotten much worse and the Doctor has given us valium. Does
                        Message 11 of 23 , Aug 7, 2008
                        View Source
                        • 0 Attachment
                          >From: kcventi <kcventi@...>
                          >Date: 2008/08/06 Wed AM 07:34:00 CDT
                          >To: afha@yahoogroups.com
                          >Subject: Re: [ahc] getting information
                          Does anyone have experience with giving valium during an AHC episode. Alecs
                          episodes have gotten much worse and the Doctor has given us valium. Does
                          anyone know how long they should be in episode to give the valium. We don't
                          want to drug him if the episode isn't going to progress but we don't want it
                          to get to the point of no return before we give it. And do your children
                          respond to the treatment? Alec is 10 now and requires suction and o2 during
                          episodes. He also vomits and has major involentary muscle movements(bouncing
                          2 ft in the air for hrs and hrs at a time) This leaves him with full body
                          paralysis and then tired for days after. He is on 25 mg of flunarizine.
                          Thanks for any advice you can give us.
                          Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                          >
                          >You are not a paranoid mother. I think alot of us have felt the pressure of
                          advocating for our children with schools and doctors when their condition
                          changes so much to everyday stimuli. It is hard for everyone.
                          >
                          > If you feel you need more info on your child's abilities and disabilities,
                          get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                          highly recommended in your area and has worked with children with complex med
                          conditions or is possibly linked to a specialty service like
                          neurology/epilepsy or metobolic or movement disorders depts. Often your local
                          PAC (parent action comittee set up by parents of sped ed kids) can supply list
                          of neuropyschologist in area.
                          >
                          > This eval should assess your child's skills and learning style so you can
                          have unbiased info to work with your school and pull together and IEP for
                          services, perhaps care plan if needed, speech, therapies and academic
                          supports. A great website for info about your child's school rights is
                          www.wrightslaw.com.
                          >
                          > Our daughter continued and still continues to progress. Her motor is
                          affected but we find it is more inhibited by the seizures she exper with
                          exertion than her abilities. She can climb and run, cut and color but only
                          for short times before she tremors. Her learning has really picked up with
                          the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                          until basic skills acquired. Start early if possible! Also we have found
                          over time that she is learning with intense support but her rate of growth is
                          slower than peers and this becomes more evident as she ages.
                          >
                          >We have experiences alot of issues with her needed accomodations of sleep mid
                          day, air conditioning and no old flickering flourescent lighting. So as you
                          can imagine, the schools have a lot to meet and it's not easy for anyone.
                          Unfortunately ours decided to say no and send her home at lunch and give one
                          hour of home tutoring. This is not fair and she wants to be w/friends but
                          needs to sleep mid day to make it through day without worsening her health.
                          >
                          > You just have to push to get what your child needs to progress to the best
                          of his potential. It's hard and exasperating with everything else on your
                          plate. That's why this group is so helpful.
                          >
                          > Keep in touch and let us know how things go.
                          >
                          > Karen
                          >
                          >
                          >paigeashworth@... wrote:
                          > Do you know anything about the regression. Like at the age of 4
                          could he Still regress were he loses his skills. He is very smart and I think
                          that is why I am having problems with the schools. They were putting him in
                          time out because he refused to participate in art when I had told them
                          numerous times his has fine and gross motor delays And they look at me like I
                          am a paranoid mother.
                          >Sent via BlackBerry by AT&T
                          >
                          >-----Original Message-----
                          >From: Tina <mycrew5@...>
                          >
                          >Date: Tue, 5 Aug 2008 16:18:21
                          >To: <afha@yahoogroups.com>
                          >Subject: Re: [ahc] getting information
                          >
                          >The school has to accomidate all his needs, don' t let them make you feel
                          like you are requesting terrible stuff, they will do it, you just have to push
                          a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                          communative and ok with the cognitive and she has gone thru her share of
                          episodes, maybe your son will be the same as he grows older.
                          >
                          >----- Original Message ----
                          >From: "paigeashworth@..." <paigeashworth@...>
                          >To: afha@yahoogroups.com
                          >Sent: Tuesday, August 5, 2008 7:06:24 PM
                          >Subject: Re: [ahc] getting information
                          >
                          >The channel blocker my son is on is called nifedipine. He also takes diamox
                          and biotin. Up to this point my son has not lost any cognitive or
                          communication skills but with the episodes increasing I am very worried about
                          this. He can't tolerate the sun at all and I am having problems with schools
                          accomidating his needs.
                          >Sent via BlackBerry by AT&T
                          >
                          >-----Original Message-----
                          >From: Tina <mycrew5@yahoo. com>
                          >
                          >Date: Tue, 5 Aug 2008 15:54:32
                          >To: <afha@yahoogroups. com>
                          >Subject: Re: [ahc] getting information
                          >
                          >Jaci is on a calcium channel blocker called Sular. This does not prevent her
                          from having episodes but it does help her pull out of the quicker, they don' t
                          seeem to last as long. Does anyone have issues with oppositional difiance
                          disorder with thier child?
                          >
                          >----- Original Message ----
                          >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                          >To: afha@yahoogroups. com
                          >Sent: Tuesday, August 5, 2008 3:20:03 PM
                          >Subject: Re: [ahc] getting information
                          >
                          >I would like information on clinical triail. Me son just turned for an dsince
                          may his episodes have icreased. They put him on a new medicine saturday that
                          is a calcium channel blocker.
                          >Sent via BlackBerry by AT&T
                          >
                          >-----Original Message-----
                          >From: kcventi <kcventi@verizon. net>
                          >
                          >Date: Tue, 5 Aug 2008 12:18:05
                          >To: <afha@yahoogroups. com>
                          >Subject: Re: [ahc] getting information
                          >
                          >I am not sure if you are talking about looking for information on the Chicago
                          meeting but usually what happens after a meeting is Lynn Egan and her husband
                          Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                          group to ask if anyone wants her to send a copy (with small fee to cover
                          shipping). It does take a little time to get the download done but they are
                          very quick.
                          >
                          >If this is what you are looking for, you may want to email lynn and her email
                          is on www.ahckids. org
                          >
                          >As for info on clinical trial, I think we are waiting but you could try
                          emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                          >
                          >Karen
                          >
                          >paigeashworth@ yahoo.com wrote:
                          >I have also tried to get information. Let me know if you are successful.
                          >Sent via BlackBerry by AT&T
                          >
                          >-----Original Message-----
                          >From: "lxdimd1" <lxdimd1@yahoo. com>
                          >
                          >Date: Tue, 05 Aug 2008 17:56:12
                          >To: <afha@yahoogroups. com>
                          >Subject: [ahc] getting information
                          >
                          >I have tried to get information of any kind.I also have tried to get
                          >the family packet from the ahckids website and have not received
                          >anything.Is there anywhere else I can get information? ??Please someone
                          >point me in the right direction.
                          >
                          >[Non-text portions of this message have been removed]
                          >
                          >[Non-text portions of this message have been removed]
                          >
                          >[Non-text portions of this message have been removed]
                          >
                          >[Non-text portions of this message have been removed]
                          >
                          >[Non-text portions of this message have been removed]
                          >
                          >[Non-text portions of this message have been removed]
                          >
                          >[Non-text portions of this message have been removed]
                          >
                          >[Non-text portions of this message have been removed]
                          >
                          >
                        • Tina
                          Jaci is on Valium during an episode, I give it to her when she is weak, it seems to help her. I don t know what else to tell u/ ... From:
                          Message 12 of 23 , Aug 7, 2008
                          View Source
                          • 0 Attachment
                            Jaci is on Valium during an episode, I give it to her when she is weak, it seems to help her. I don't know what else to tell u/



                            ----- Original Message ----
                            From: "renny01@..." <renny01@...>
                            To: afha@yahoogroups.com
                            Sent: Thursday, August 7, 2008 6:15:41 PM
                            Subject: Re: Re: [ahc] getting information


                            >From: kcventi <kcventi@verizon. net>
                            >Date: 2008/08/06 Wed AM 07:34:00 CDT
                            >To: afha@yahoogroups. com
                            >Subject: Re: [ahc] getting information
                            Does anyone have experience with giving valium during an AHC episode. Alecs
                            episodes have gotten much worse and the Doctor has given us valium. Does
                            anyone know how long they should be in episode to give the valium. We don't
                            want to drug him if the episode isn't going to progress but we don't want it
                            to get to the point of no return before we give it. And do your children
                            respond to the treatment? Alec is 10 now and requires suction and o2 during
                            episodes. He also vomits and has major involentary muscle movements(bouncing
                            2 ft in the air for hrs and hrs at a time) This leaves him with full body
                            paralysis and then tired for days after. He is on 25 mg of flunarizine.
                            Thanks for any advice you can give us.
                            Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                            >
                            >You are not a paranoid mother. I think alot of us have felt the pressure of
                            advocating for our children with schools and doctors when their condition
                            changes so much to everyday stimuli. It is hard for everyone.
                            >
                            > If you feel you need more info on your child's abilities and disabilities,
                            get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                            highly recommended in your area and has worked with children with complex med
                            conditions or is possibly linked to a specialty service like
                            neurology/epilepsy or metobolic or movement disorders depts. Often your local
                            PAC (parent action comittee set up by parents of sped ed kids) can supply list
                            of neuropyschologist in area.
                            >
                            > This eval should assess your child's skills and learning style so you can
                            have unbiased info to work with your school and pull together and IEP for
                            services, perhaps care plan if needed, speech, therapies and academic
                            supports. A great website for info about your child's school rights is
                            www.wrightslaw. com.
                            >
                            > Our daughter continued and still continues to progress. Her motor is
                            affected but we find it is more inhibited by the seizures she exper with
                            exertion than her abilities. She can climb and run, cut and color but only
                            for short times before she tremors. Her learning has really picked up with
                            the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                            until basic skills acquired. Start early if possible! Also we have found
                            over time that she is learning with intense support but her rate of growth is
                            slower than peers and this becomes more evident as she ages.
                            >
                            >We have experiences alot of issues with her needed accomodations of sleep mid
                            day, air conditioning and no old flickering flourescent lighting. So as you
                            can imagine, the schools have a lot to meet and it's not easy for anyone.
                            Unfortunately ours decided to say no and send her home at lunch and give one
                            hour of home tutoring. This is not fair and she wants to be w/friends but
                            needs to sleep mid day to make it through day without worsening her health.
                            >
                            > You just have to push to get what your child needs to progress to the best
                            of his potential. It's hard and exasperating with everything else on your
                            plate. That's why this group is so helpful.
                            >
                            > Keep in touch and let us know how things go.
                            >
                            > Karen
                            >
                            >
                            >paigeashworth@ yahoo.com wrote:
                            > Do you know anything about the regression. Like at the age of 4
                            could he Still regress were he loses his skills. He is very smart and I think
                            that is why I am having problems with the schools. They were putting him in
                            time out because he refused to participate in art when I had told them
                            numerous times his has fine and gross motor delays And they look at me like I
                            am a paranoid mother.
                            >Sent via BlackBerry by AT&T
                            >
                            >-----Original Message-----
                            >From: Tina <mycrew5@yahoo. com>
                            >
                            >Date: Tue, 5 Aug 2008 16:18:21
                            >To: <afha@yahoogroups. com>
                            >Subject: Re: [ahc] getting information
                            >
                            >The school has to accomidate all his needs, don' t let them make you feel
                            like you are requesting terrible stuff, they will do it, you just have to push
                            a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                            communative and ok with the cognitive and she has gone thru her share of
                            episodes, maybe your son will be the same as he grows older.
                            >
                            >----- Original Message ----
                            >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                            >To: afha@yahoogroups. com
                            >Sent: Tuesday, August 5, 2008 7:06:24 PM
                            >Subject: Re: [ahc] getting information
                            >
                            >The channel blocker my son is on is called nifedipine. He also takes diamox
                            and biotin. Up to this point my son has not lost any cognitive or
                            communication skills but with the episodes increasing I am very worried about
                            this. He can't tolerate the sun at all and I am having problems with schools
                            accomidating his needs.
                            >Sent via BlackBerry by AT&T
                            >
                            >-----Original Message-----
                            >From: Tina <mycrew5@yahoo. com>
                            >
                            >Date: Tue, 5 Aug 2008 15:54:32
                            >To: <afha@yahoogroups. com>
                            >Subject: Re: [ahc] getting information
                            >
                            >Jaci is on a calcium channel blocker called Sular. This does not prevent her
                            from having episodes but it does help her pull out of the quicker, they don' t
                            seeem to last as long. Does anyone have issues with oppositional difiance
                            disorder with thier child?
                            >
                            >----- Original Message ----
                            >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                            >To: afha@yahoogroups. com
                            >Sent: Tuesday, August 5, 2008 3:20:03 PM
                            >Subject: Re: [ahc] getting information
                            >
                            >I would like information on clinical triail. Me son just turned for an dsince
                            may his episodes have icreased. They put him on a new medicine saturday that
                            is a calcium channel blocker.
                            >Sent via BlackBerry by AT&T
                            >
                            >-----Original Message-----
                            >From: kcventi <kcventi@verizon. net>
                            >
                            >Date: Tue, 5 Aug 2008 12:18:05
                            >To: <afha@yahoogroups. com>
                            >Subject: Re: [ahc] getting information
                            >
                            >I am not sure if you are talking about looking for information on the Chicago
                            meeting but usually what happens after a meeting is Lynn Egan and her husband
                            Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                            group to ask if anyone wants her to send a copy (with small fee to cover
                            shipping). It does take a little time to get the download done but they are
                            very quick.
                            >
                            >If this is what you are looking for, you may want to email lynn and her email
                            is on www.ahckids. org
                            >
                            >As for info on clinical trial, I think we are waiting but you could try
                            emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                            >
                            >Karen
                            >
                            >paigeashworth@ yahoo.com wrote:
                            >I have also tried to get information. Let me know if you are successful.
                            >Sent via BlackBerry by AT&T
                            >
                            >-----Original Message-----
                            >From: "lxdimd1" <lxdimd1@yahoo. com>
                            >
                            >Date: Tue, 05 Aug 2008 17:56:12
                            >To: <afha@yahoogroups. com>
                            >Subject: [ahc] getting information
                            >
                            >I have tried to get information of any kind.I also have tried to get
                            >the family packet from the ahckids website and have not received
                            >anything.Is there anywhere else I can get information? ??Please someone
                            >point me in the right direction.
                            >
                            >[Non-text portions of this message have been removed]
                            >
                            >[Non-text portions of this message have been removed]
                            >
                            >[Non-text portions of this message have been removed]
                            >
                            >[Non-text portions of this message have been removed]
                            >
                            >[Non-text portions of this message have been removed]
                            >
                            >[Non-text portions of this message have been removed]
                            >
                            >[Non-text portions of this message have been removed]
                            >
                            >[Non-text portions of this message have been removed]
                            >
                            >






                            [Non-text portions of this message have been removed]
                          • merido@comcast.net
                            I posted about Valium the other day...I give Jake, age 16, 1mg to 1 1/2 mg of Valium when he gets bad dystonia or a quadriplegic episode that looks like its
                            Message 13 of 23 , Aug 7, 2008
                            View Source
                            • 0 Attachment
                              I posted about Valium the other day...I give Jake, age 16, 1mg to 1 1/2 mg of Valium when he gets bad dystonia or a quadriplegic episode that looks like its going to last awhile (I can tell by looking at him if he needs it) It is a liquid syrup made by a special pharmacist. It's a tiny amount of liquid, he doesn't even have to swallow it. I squirt it into his mouth. If in twenty minutes he is no better, I give another 1 mg. This has changed our lives...every holiday and birthday Jake has spent on the couch, unable to participate, until we started this. It does not make him sleep, but honest to goodness, one second he's down and the next he says "I'm all better now" and gets up and runs around. The rectal valium is, I believe, 10 mg. so this is a lot smaller dose, but is very effective. He is not sedated at all. Jake's neuro knows I am a nurse and that I feel very comfortable with this. I can even give it to him before an event, such as fireworks, that I know will cause an
                              episode. I use it on average about once a week.
                              If you have any questions, please feel free to ask...
                              Becky

                              -------------- Original message --------------
                              From: <renny01@...>

                              > >From: kcventi
                              > >Date: 2008/08/06 Wed AM 07:34:00 CDT
                              > >To: afha@yahoogroups.com
                              > >Subject: Re: [ahc] getting information
                              > Does anyone have experience with giving valium during an AHC episode. Alecs
                              > episodes have gotten much worse and the Doctor has given us valium. Does
                              > anyone know how long they should be in episode to give the valium. We don't
                              > want to drug him if the episode isn't going to progress but we don't want it
                              > to get to the point of no return before we give it. And do your children
                              > respond to the treatment? Alec is 10 now and requires suction and o2 during
                              > episodes. He also vomits and has major involentary muscle movements(bouncing
                              > 2 ft in the air for hrs and hrs at a time) This leaves him with full body
                              > paralysis and then tired for days after. He is on 25 mg of flunarizine.
                              > Thanks for any advice you can give us.
                              > Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                              > >
                              > >You are not a paranoid mother. I think alot of us have felt the pressure of
                              > advocating for our children with schools and doctors when their condition
                              > changes so much to everyday stimuli. It is hard for everyone.
                              > >
                              > > If you feel you need more info on your child's abilities and disabilities,
                              > get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                              > highly recommended in your area and has worked with children with complex med
                              > conditions or is possibly linked to a specialty service like
                              > neurology/epilepsy or metobolic or movement disorders depts. Often your local
                              > PAC (parent action comittee set up by parents of sped ed kids) can supply list
                              > of neuropyschologist in area.
                              > >
                              > > This eval should assess your child's skills and learning style so you can
                              > have unbiased info to work with your school and pull together and IEP for
                              > services, perhaps care plan if needed, speech, therapies and academic
                              > supports. A great website for info about your child's school rights is
                              > www.wrightslaw.com.
                              > >
                              > > Our daughter continued and still continues to progress. Her motor is
                              > affected but we find it is more inhibited by the seizures she exper with
                              > exertion than her abilities. She can climb and run, cut and color but only
                              > for short times before she tremors. Her learning has really picked up with
                              > the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                              > until basic skills acquired. Start early if possible! Also we have found
                              > over time that she is learning with intense support but her rate of growth is
                              > slower than peers and this becomes more evident as she ages.
                              > >
                              > >We have experiences alot of issues with her needed accomodations of sleep mid
                              > day, air conditioning and no old flickering flourescent lighting. So as you
                              > can imagine, the schools have a lot to meet and it's not easy for anyone.
                              > Unfortunately ours decided to say no and send her home at lunch and give one
                              > hour of home tutoring. This is not fair and she wants to be w/friends but
                              > needs to sleep mid day to make it through day without worsening her health.
                              > >
                              > > You just have to push to get what your child needs to progress to the best
                              > of his potential. It's hard and exasperating with everything else on your
                              > plate. That's why this group is so helpful.
                              > >
                              > > Keep in touch and let us know how things go.
                              > >
                              > > Karen
                              > >
                              > >
                              > >paigeashworth@... wrote:
                              > > Do you know anything about the regression. Like at the age of 4
                              > could he Still regress were he loses his skills. He is very smart and I think
                              > that is why I am having problems with the schools. They were putting him in
                              > time out because he refused to participate in art when I had told them
                              > numerous times his has fine and gross motor delays And they look at me like I
                              > am a paranoid mother.
                              > >Sent via BlackBerry by AT&T
                              > >
                              > >-----Original Message-----
                              > >From: Tina
                              > >
                              > >Date: Tue, 5 Aug 2008 16:18:21
                              > >To:
                              > >Subject: Re: [ahc] getting information
                              > >
                              > >The school has to accomidate all his needs, don' t let them make you feel
                              > like you are requesting terrible stuff, they will do it, you just have to push
                              > a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                              > communative and ok with the cognitive and she has gone thru her share of
                              > episodes, maybe your son will be the same as he grows older.
                              > >
                              > >----- Original Message ----
                              > >From: "paigeashworth@..."
                              > >To: afha@yahoogroups.com
                              > >Sent: Tuesday, August 5, 2008 7:06:24 PM
                              > >Subject: Re: [ahc] getting information
                              > >
                              > >The channel blocker my son is on is called nifedipine. He also takes diamox
                              > and biotin. Up to this point my son has not lost any cognitive or
                              > communication skills but with the episodes increasing I am very worried about
                              > this. He can't tolerate the sun at all and I am having problems with schools
                              > accomidating his needs.
                              > >Sent via BlackBerry by AT&T
                              > >
                              > >-----Original Message-----
                              > >From: Tina
                              > >
                              > >Date: Tue, 5 Aug 2008 15:54:32
                              > >To:
                              > >Subject: Re: [ahc] getting information
                              > >
                              > >Jaci is on a calcium channel blocker called Sular. This does not prevent her
                              > from having episodes but it does help her pull out of the quicker, they don' t
                              > seeem to last as long. Does anyone have issues with oppositional difiance
                              > disorder with thier child?
                              > >
                              > >----- Original Message ----
                              > >From: "paigeashworth@ yahoo.com"
                              > >To: afha@yahoogroups. com
                              > >Sent: Tuesday, August 5, 2008 3:20:03 PM
                              > >Subject: Re: [ahc] getting information
                              > >
                              > >I would like information on clinical triail. Me son just turned for an dsince
                              > may his episodes have icreased. They put him on a new medicine saturday that
                              > is a calcium channel blocker.
                              > >Sent via BlackBerry by AT&T
                              > >
                              > >-----Original Message-----
                              > >From: kcventi
                              > >
                              > >Date: Tue, 5 Aug 2008 12:18:05
                              > >To:
                              > >Subject: Re: [ahc] getting information
                              > >
                              > >I am not sure if you are talking about looking for information on the Chicago
                              > meeting but usually what happens after a meeting is Lynn Egan and her husband
                              > Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                              > group to ask if anyone wants her to send a copy (with small fee to cover
                              > shipping). It does take a little time to get the download done but they are
                              > very quick.
                              > >
                              > >If this is what you are looking for, you may want to email lynn and her email
                              > is on www.ahckids. org
                              > >
                              > >As for info on clinical trial, I think we are waiting but you could try
                              > emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                              > >
                              > >Karen
                              > >
                              > >paigeashworth@ yahoo.com wrote:
                              > >I have also tried to get information. Let me know if you are successful.
                              > >Sent via BlackBerry by AT&T
                              > >
                              > >-----Original Message-----
                              > >From: "lxdimd1"
                              > >
                              > >Date: Tue, 05 Aug 2008 17:56:12
                              > >To:
                              > >Subject: [ahc] getting information
                              > >
                              > >I have tried to get information of any kind.I also have tried to get
                              > >the family packet from the ahckids website and have not received
                              > >anything.Is there anywhere else I can get information? ??Please someone
                              > >point me in the right direction.
                              > >
                              > >[Non-text portions of this message have been removed]
                              > >
                              > >[Non-text portions of this message have been removed]
                              > >
                              > >[Non-text portions of this message have been removed]
                              > >
                              > >[Non-text portions of this message have been removed]
                              > >
                              > >[Non-text portions of this message have been removed]
                              > >
                              > >[Non-text portions of this message have been removed]
                              > >
                              > >[Non-text portions of this message have been removed]
                              > >
                              > >[Non-text portions of this message have been removed]
                              > >
                              > >
                              >
                              >
                              >
                              > ------------------------------------
                              >
                              > Send a mail to the AHC community :
                              > Send a mail : afha@yahoogroups.com
                              > Subscribe : afha-subscribe@yahoogroups.com
                              > unsubscribe : afha-unsubscribe@yahoogroups.com
                              > Owner of the list : afha-owner@yahoogroups.com
                              >
                              > Link to the URL :
                              > http://groups.yahoo.com/group/afha
                              > AHC Website :
                              > http://www.afha.orgYahoo! Groups Links
                              >
                              >
                              >

                              [Non-text portions of this message have been removed]
                            • kcventi
                              Hi Kelly and Brad Sorry to hear Alec is having such a hard time. Are you talking about oral valium or diastat for use with attacks? Oral valium always took
                              Message 14 of 23 , Aug 7, 2008
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                                Hi Kelly and Brad

                                Sorry to hear Alec is having such a hard time. Are you talking about oral valium or diastat for use with attacks?

                                Oral valium always took longer to work for Addie and left her hyper and trying to walk and run while eyes deviating and leg weak.

                                We use diastat for her seizures ( and some maybe AHC we mistake for seizure- who knows) but the quicker we stop it the less chance it has of continiuing on and not responding to more meds. I don't know exactly how much risk there is from the valium but I don't think it is alot. On the other hand, if his O2 is compromised or he aspirates, then there are real risks to his health.

                                Have you been able to rule out seizure during these events? You may be able to call Dr Swoboda and get an idea of treatment and if others are experiencing this. How does he respond to the valium? It can surpress breathing depending upon dosage and his health but Addie has always done well with the 10mg diastat. Anything more needed, and we go to the hospital.

                                Please call me if I can answer any questions about diastat.

                                Take care,

                                Karen

                                renny01@... wrote:
                                >From: kcventi <kcventi@...>
                                >Date: 2008/08/06 Wed AM 07:34:00 CDT
                                >To: afha@yahoogroups.com
                                >Subject: Re: [ahc] getting information
                                Does anyone have experience with giving valium during an AHC episode. Alecs
                                episodes have gotten much worse and the Doctor has given us valium. Does
                                anyone know how long they should be in episode to give the valium. We don't
                                want to drug him if the episode isn't going to progress but we don't want it
                                to get to the point of no return before we give it. And do your children
                                respond to the treatment? Alec is 10 now and requires suction and o2 during
                                episodes. He also vomits and has major involentary muscle movements(bouncing
                                2 ft in the air for hrs and hrs at a time) This leaves him with full body
                                paralysis and then tired for days after. He is on 25 mg of flunarizine.
                                Thanks for any advice you can give us.
                                Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                >
                                >You are not a paranoid mother. I think alot of us have felt the pressure of
                                advocating for our children with schools and doctors when their condition
                                changes so much to everyday stimuli. It is hard for everyone.
                                >
                                > If you feel you need more info on your child's abilities and disabilities,
                                get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                                highly recommended in your area and has worked with children with complex med
                                conditions or is possibly linked to a specialty service like
                                neurology/epilepsy or metobolic or movement disorders depts. Often your local
                                PAC (parent action comittee set up by parents of sped ed kids) can supply list
                                of neuropyschologist in area.
                                >
                                > This eval should assess your child's skills and learning style so you can
                                have unbiased info to work with your school and pull together and IEP for
                                services, perhaps care plan if needed, speech, therapies and academic
                                supports. A great website for info about your child's school rights is
                                www.wrightslaw.com.
                                >
                                > Our daughter continued and still continues to progress. Her motor is
                                affected but we find it is more inhibited by the seizures she exper with
                                exertion than her abilities. She can climb and run, cut and color but only
                                for short times before she tremors. Her learning has really picked up with
                                the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                                until basic skills acquired. Start early if possible! Also we have found
                                over time that she is learning with intense support but her rate of growth is
                                slower than peers and this becomes more evident as she ages.
                                >
                                >We have experiences alot of issues with her needed accomodations of sleep mid
                                day, air conditioning and no old flickering flourescent lighting. So as you
                                can imagine, the schools have a lot to meet and it's not easy for anyone.
                                Unfortunately ours decided to say no and send her home at lunch and give one
                                hour of home tutoring. This is not fair and she wants to be w/friends but
                                needs to sleep mid day to make it through day without worsening her health.
                                >
                                > You just have to push to get what your child needs to progress to the best
                                of his potential. It's hard and exasperating with everything else on your
                                plate. That's why this group is so helpful.
                                >
                                > Keep in touch and let us know how things go.
                                >
                                > Karen
                                >
                                >
                                >paigeashworth@... wrote:
                                > Do you know anything about the regression. Like at the age of 4
                                could he Still regress were he loses his skills. He is very smart and I think
                                that is why I am having problems with the schools. They were putting him in
                                time out because he refused to participate in art when I had told them
                                numerous times his has fine and gross motor delays And they look at me like I
                                am a paranoid mother.
                                >Sent via BlackBerry by AT&T
                                >
                                >-----Original Message-----
                                >From: Tina <mycrew5@...>
                                >
                                >Date: Tue, 5 Aug 2008 16:18:21
                                >To: <afha@yahoogroups.com>
                                >Subject: Re: [ahc] getting information
                                >
                                >The school has to accomidate all his needs, don' t let them make you feel
                                like you are requesting terrible stuff, they will do it, you just have to push
                                a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                                communative and ok with the cognitive and she has gone thru her share of
                                episodes, maybe your son will be the same as he grows older.
                                >
                                >----- Original Message ----
                                >From: "paigeashworth@..." <paigeashworth@...>
                                >To: afha@yahoogroups.com
                                >Sent: Tuesday, August 5, 2008 7:06:24 PM
                                >Subject: Re: [ahc] getting information
                                >
                                >The channel blocker my son is on is called nifedipine. He also takes diamox
                                and biotin. Up to this point my son has not lost any cognitive or
                                communication skills but with the episodes increasing I am very worried about
                                this. He can't tolerate the sun at all and I am having problems with schools
                                accomidating his needs.
                                >Sent via BlackBerry by AT&T
                                >
                                >-----Original Message-----
                                >From: Tina <mycrew5@yahoo. com>
                                >
                                >Date: Tue, 5 Aug 2008 15:54:32
                                >To: <afha@yahoogroups. com>
                                >Subject: Re: [ahc] getting information
                                >
                                >Jaci is on a calcium channel blocker called Sular. This does not prevent her
                                from having episodes but it does help her pull out of the quicker, they don' t
                                seeem to last as long. Does anyone have issues with oppositional difiance
                                disorder with thier child?
                                >
                                >----- Original Message ----
                                >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                >To: afha@yahoogroups. com
                                >Sent: Tuesday, August 5, 2008 3:20:03 PM
                                >Subject: Re: [ahc] getting information
                                >
                                >I would like information on clinical triail. Me son just turned for an dsince
                                may his episodes have icreased. They put him on a new medicine saturday that
                                is a calcium channel blocker.
                                >Sent via BlackBerry by AT&T
                                >
                                >-----Original Message-----
                                >From: kcventi <kcventi@verizon. net>
                                >
                                >Date: Tue, 5 Aug 2008 12:18:05
                                >To: <afha@yahoogroups. com>
                                >Subject: Re: [ahc] getting information
                                >
                                >I am not sure if you are talking about looking for information on the Chicago
                                meeting but usually what happens after a meeting is Lynn Egan and her husband
                                Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                                group to ask if anyone wants her to send a copy (with small fee to cover
                                shipping). It does take a little time to get the download done but they are
                                very quick.
                                >
                                >If this is what you are looking for, you may want to email lynn and her email
                                is on www.ahckids. org
                                >
                                >As for info on clinical trial, I think we are waiting but you could try
                                emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                >
                                >Karen
                                >
                                >paigeashworth@ yahoo.com wrote:
                                >I have also tried to get information. Let me know if you are successful.
                                >Sent via BlackBerry by AT&T
                                >
                                >-----Original Message-----
                                >From: "lxdimd1" <lxdimd1@yahoo. com>
                                >
                                >Date: Tue, 05 Aug 2008 17:56:12
                                >To: <afha@yahoogroups. com>
                                >Subject: [ahc] getting information
                                >
                                >I have tried to get information of any kind.I also have tried to get
                                >the family packet from the ahckids website and have not received
                                >anything.Is there anywhere else I can get information? ??Please someone
                                >point me in the right direction.
                                >
                                >[Non-text portions of this message have been removed]
                                >
                                >[Non-text portions of this message have been removed]
                                >
                                >[Non-text portions of this message have been removed]
                                >
                                >[Non-text portions of this message have been removed]
                                >
                                >[Non-text portions of this message have been removed]
                                >
                                >[Non-text portions of this message have been removed]
                                >
                                >[Non-text portions of this message have been removed]
                                >
                                >[Non-text portions of this message have been removed]
                                >
                                >






                                [Non-text portions of this message have been removed]
                              • Jennifer
                                What type of valium? I had asked a while ago about oral valium and it seems everyone that responded is using only the rectal valium. How much did you doctor
                                Message 15 of 23 , Aug 7, 2008
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                                  What type of valium?
                                  I had asked a while ago about oral valium and it seems everyone that responded is using only the rectal valium.

                                  How much did you doctor recommend to give Alec and what does he weigh?
                                  Thanks.

                                  Take care,
                                  Jennifer (mom to Alaina, 4/7/00)
                                  jejeaja@...
                                  ----- Original Message -----
                                  From: renny01@...
                                  To: afha@yahoogroups.com
                                  Sent: Thursday, August 07, 2008 5:15 PM
                                  Subject: Re: Re: [ahc] getting information


                                  >From: kcventi <kcventi@...>
                                  >Date: 2008/08/06 Wed AM 07:34:00 CDT
                                  >To: afha@yahoogroups.com
                                  >Subject: Re: [ahc] getting information
                                  Does anyone have experience with giving valium during an AHC episode. Alecs
                                  episodes have gotten much worse and the Doctor has given us valium. Does
                                  anyone know how long they should be in episode to give the valium. We don't
                                  want to drug him if the episode isn't going to progress but we don't want it
                                  to get to the point of no return before we give it. And do your children
                                  respond to the treatment? Alec is 10 now and requires suction and o2 during
                                  episodes. He also vomits and has major involentary muscle movements(bouncing
                                  2 ft in the air for hrs and hrs at a time) This leaves him with full body
                                  paralysis and then tired for days after. He is on 25 mg of flunarizine.
                                  Thanks for any advice you can give us.
                                  Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                  >
                                  >You are not a paranoid mother. I think alot of us have felt the pressure of
                                  advocating for our children with schools and doctors when their condition
                                  changes so much to everyday stimuli. It is hard for everyone.
                                  >
                                  > If you feel you need more info on your child's abilities and disabilities,
                                  get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                                  highly recommended in your area and has worked with children with complex med
                                  conditions or is possibly linked to a specialty service like
                                  neurology/epilepsy or metobolic or movement disorders depts. Often your local
                                  PAC (parent action comittee set up by parents of sped ed kids) can supply list
                                  of neuropyschologist in area.
                                  >
                                  > This eval should assess your child's skills and learning style so you can
                                  have unbiased info to work with your school and pull together and IEP for
                                  services, perhaps care plan if needed, speech, therapies and academic
                                  supports. A great website for info about your child's school rights is
                                  www.wrightslaw.com.
                                  >
                                  > Our daughter continued and still continues to progress. Her motor is
                                  affected but we find it is more inhibited by the seizures she exper with
                                  exertion than her abilities. She can climb and run, cut and color but only
                                  for short times before she tremors. Her learning has really picked up with
                                  the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                                  until basic skills acquired. Start early if possible! Also we have found
                                  over time that she is learning with intense support but her rate of growth is
                                  slower than peers and this becomes more evident as she ages.
                                  >
                                  >We have experiences alot of issues with her needed accomodations of sleep mid
                                  day, air conditioning and no old flickering flourescent lighting. So as you
                                  can imagine, the schools have a lot to meet and it's not easy for anyone.
                                  Unfortunately ours decided to say no and send her home at lunch and give one
                                  hour of home tutoring. This is not fair and she wants to be w/friends but
                                  needs to sleep mid day to make it through day without worsening her health.
                                  >
                                  > You just have to push to get what your child needs to progress to the best
                                  of his potential. It's hard and exasperating with everything else on your
                                  plate. That's why this group is so helpful.
                                  >
                                  > Keep in touch and let us know how things go.
                                  >
                                  > Karen
                                  >
                                  >
                                  >paigeashworth@... wrote:
                                  > Do you know anything about the regression. Like at the age of 4
                                  could he Still regress were he loses his skills. He is very smart and I think
                                  that is why I am having problems with the schools. They were putting him in
                                  time out because he refused to participate in art when I had told them
                                  numerous times his has fine and gross motor delays And they look at me like I
                                  am a paranoid mother.
                                  >Sent via BlackBerry by AT&T
                                  >
                                  >-----Original Message-----
                                  >From: Tina <mycrew5@...>
                                  >
                                  >Date: Tue, 5 Aug 2008 16:18:21
                                  >To: <afha@yahoogroups.com>
                                  >Subject: Re: [ahc] getting information
                                  >
                                  >The school has to accomidate all his needs, don' t let them make you feel
                                  like you are requesting terrible stuff, they will do it, you just have to push
                                  a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                                  communative and ok with the cognitive and she has gone thru her share of
                                  episodes, maybe your son will be the same as he grows older.
                                  >
                                  >----- Original Message ----
                                  >From: "paigeashworth@..." <paigeashworth@...>
                                  >To: afha@yahoogroups.com
                                  >Sent: Tuesday, August 5, 2008 7:06:24 PM
                                  >Subject: Re: [ahc] getting information
                                  >
                                  >The channel blocker my son is on is called nifedipine. He also takes diamox
                                  and biotin. Up to this point my son has not lost any cognitive or
                                  communication skills but with the episodes increasing I am very worried about
                                  this. He can't tolerate the sun at all and I am having problems with schools
                                  accomidating his needs.
                                  >Sent via BlackBerry by AT&T
                                  >
                                  >-----Original Message-----
                                  >From: Tina <mycrew5@yahoo. com>
                                  >
                                  >Date: Tue, 5 Aug 2008 15:54:32
                                  >To: <afha@yahoogroups. com>
                                  >Subject: Re: [ahc] getting information
                                  >
                                  >Jaci is on a calcium channel blocker called Sular. This does not prevent her
                                  from having episodes but it does help her pull out of the quicker, they don' t
                                  seeem to last as long. Does anyone have issues with oppositional difiance
                                  disorder with thier child?
                                  >
                                  >----- Original Message ----
                                  >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                  >To: afha@yahoogroups. com
                                  >Sent: Tuesday, August 5, 2008 3:20:03 PM
                                  >Subject: Re: [ahc] getting information
                                  >
                                  >I would like information on clinical triail. Me son just turned for an dsince
                                  may his episodes have icreased. They put him on a new medicine saturday that
                                  is a calcium channel blocker.
                                  >Sent via BlackBerry by AT&T
                                  >
                                  >-----Original Message-----
                                  >From: kcventi <kcventi@verizon. net>
                                  >
                                  >Date: Tue, 5 Aug 2008 12:18:05
                                  >To: <afha@yahoogroups. com>
                                  >Subject: Re: [ahc] getting information
                                  >
                                  >I am not sure if you are talking about looking for information on the Chicago
                                  meeting but usually what happens after a meeting is Lynn Egan and her husband
                                  Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                                  group to ask if anyone wants her to send a copy (with small fee to cover
                                  shipping). It does take a little time to get the download done but they are
                                  very quick.
                                  >
                                  >If this is what you are looking for, you may want to email lynn and her email
                                  is on www.ahckids. org
                                  >
                                  >As for info on clinical trial, I think we are waiting but you could try
                                  emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                  >
                                  >Karen
                                  >
                                  >paigeashworth@ yahoo.com wrote:
                                  >I have also tried to get information. Let me know if you are successful.
                                  >Sent via BlackBerry by AT&T
                                  >
                                  >-----Original Message-----
                                  >From: "lxdimd1" <lxdimd1@yahoo. com>
                                  >
                                  >Date: Tue, 05 Aug 2008 17:56:12
                                  >To: <afha@yahoogroups. com>
                                  >Subject: [ahc] getting information
                                  >
                                  >I have tried to get information of any kind.I also have tried to get
                                  >the family packet from the ahckids website and have not received
                                  >anything.Is there anywhere else I can get information? ??Please someone
                                  >point me in the right direction.
                                  >
                                  >[Non-text portions of this message have been removed]
                                  >
                                  >[Non-text portions of this message have been removed]
                                  >
                                  >[Non-text portions of this message have been removed]
                                  >
                                  >[Non-text portions of this message have been removed]
                                  >
                                  >[Non-text portions of this message have been removed]
                                  >
                                  >[Non-text portions of this message have been removed]
                                  >
                                  >[Non-text portions of this message have been removed]
                                  >
                                  >[Non-text portions of this message have been removed]
                                  >
                                  >





                                  [Non-text portions of this message have been removed]
                                • Jennifer
                                  Oral valium? What is the dosage and the weight of your daughter? Take care, Jennifer (mom to Alaina, 4/7/00) jejeaja@kc.rr.com ... From: Tina To:
                                  Message 16 of 23 , Aug 7, 2008
                                  View Source
                                  • 0 Attachment
                                    Oral valium?
                                    What is the dosage and the weight of your daughter?

                                    Take care,
                                    Jennifer (mom to Alaina, 4/7/00)
                                    jejeaja@...
                                    ----- Original Message -----
                                    From: Tina
                                    To: afha@yahoogroups.com
                                    Sent: Thursday, August 07, 2008 5:27 PM
                                    Subject: Re: Re: [ahc] getting information


                                    Jaci is on Valium during an episode, I give it to her when she is weak, it seems to help her. I don't know what else to tell u/

                                    ----- Original Message ----
                                    From: "renny01@..." <renny01@...>
                                    To: afha@yahoogroups.com
                                    Sent: Thursday, August 7, 2008 6:15:41 PM
                                    Subject: Re: Re: [ahc] getting information

                                    >From: kcventi <kcventi@verizon. net>
                                    >Date: 2008/08/06 Wed AM 07:34:00 CDT
                                    >To: afha@yahoogroups. com
                                    >Subject: Re: [ahc] getting information
                                    Does anyone have experience with giving valium during an AHC episode. Alecs
                                    episodes have gotten much worse and the Doctor has given us valium. Does
                                    anyone know how long they should be in episode to give the valium. We don't
                                    want to drug him if the episode isn't going to progress but we don't want it
                                    to get to the point of no return before we give it. And do your children
                                    respond to the treatment? Alec is 10 now and requires suction and o2 during
                                    episodes. He also vomits and has major involentary muscle movements(bouncing
                                    2 ft in the air for hrs and hrs at a time) This leaves him with full body
                                    paralysis and then tired for days after. He is on 25 mg of flunarizine.
                                    Thanks for any advice you can give us.
                                    Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                    >
                                    >You are not a paranoid mother. I think alot of us have felt the pressure of
                                    advocating for our children with schools and doctors when their condition
                                    changes so much to everyday stimuli. It is hard for everyone.
                                    >
                                    > If you feel you need more info on your child's abilities and disabilities,
                                    get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                                    highly recommended in your area and has worked with children with complex med
                                    conditions or is possibly linked to a specialty service like
                                    neurology/epilepsy or metobolic or movement disorders depts. Often your local
                                    PAC (parent action comittee set up by parents of sped ed kids) can supply list
                                    of neuropyschologist in area.
                                    >
                                    > This eval should assess your child's skills and learning style so you can
                                    have unbiased info to work with your school and pull together and IEP for
                                    services, perhaps care plan if needed, speech, therapies and academic
                                    supports. A great website for info about your child's school rights is
                                    www.wrightslaw. com.
                                    >
                                    > Our daughter continued and still continues to progress. Her motor is
                                    affected but we find it is more inhibited by the seizures she exper with
                                    exertion than her abilities. She can climb and run, cut and color but only
                                    for short times before she tremors. Her learning has really picked up with
                                    the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                                    until basic skills acquired. Start early if possible! Also we have found
                                    over time that she is learning with intense support but her rate of growth is
                                    slower than peers and this becomes more evident as she ages.
                                    >
                                    >We have experiences alot of issues with her needed accomodations of sleep mid
                                    day, air conditioning and no old flickering flourescent lighting. So as you
                                    can imagine, the schools have a lot to meet and it's not easy for anyone.
                                    Unfortunately ours decided to say no and send her home at lunch and give one
                                    hour of home tutoring. This is not fair and she wants to be w/friends but
                                    needs to sleep mid day to make it through day without worsening her health.
                                    >
                                    > You just have to push to get what your child needs to progress to the best
                                    of his potential. It's hard and exasperating with everything else on your
                                    plate. That's why this group is so helpful.
                                    >
                                    > Keep in touch and let us know how things go.
                                    >
                                    > Karen
                                    >
                                    >
                                    >paigeashworth@ yahoo.com wrote:
                                    > Do you know anything about the regression. Like at the age of 4
                                    could he Still regress were he loses his skills. He is very smart and I think
                                    that is why I am having problems with the schools. They were putting him in
                                    time out because he refused to participate in art when I had told them
                                    numerous times his has fine and gross motor delays And they look at me like I
                                    am a paranoid mother.
                                    >Sent via BlackBerry by AT&T
                                    >
                                    >-----Original Message-----
                                    >From: Tina <mycrew5@yahoo. com>
                                    >
                                    >Date: Tue, 5 Aug 2008 16:18:21
                                    >To: <afha@yahoogroups. com>
                                    >Subject: Re: [ahc] getting information
                                    >
                                    >The school has to accomidate all his needs, don' t let them make you feel
                                    like you are requesting terrible stuff, they will do it, you just have to push
                                    a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                                    communative and ok with the cognitive and she has gone thru her share of
                                    episodes, maybe your son will be the same as he grows older.
                                    >
                                    >----- Original Message ----
                                    >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                    >To: afha@yahoogroups. com
                                    >Sent: Tuesday, August 5, 2008 7:06:24 PM
                                    >Subject: Re: [ahc] getting information
                                    >
                                    >The channel blocker my son is on is called nifedipine. He also takes diamox
                                    and biotin. Up to this point my son has not lost any cognitive or
                                    communication skills but with the episodes increasing I am very worried about
                                    this. He can't tolerate the sun at all and I am having problems with schools
                                    accomidating his needs.
                                    >Sent via BlackBerry by AT&T
                                    >
                                    >-----Original Message-----
                                    >From: Tina <mycrew5@yahoo. com>
                                    >
                                    >Date: Tue, 5 Aug 2008 15:54:32
                                    >To: <afha@yahoogroups. com>
                                    >Subject: Re: [ahc] getting information
                                    >
                                    >Jaci is on a calcium channel blocker called Sular. This does not prevent her
                                    from having episodes but it does help her pull out of the quicker, they don' t
                                    seeem to last as long. Does anyone have issues with oppositional difiance
                                    disorder with thier child?
                                    >
                                    >----- Original Message ----
                                    >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                    >To: afha@yahoogroups. com
                                    >Sent: Tuesday, August 5, 2008 3:20:03 PM
                                    >Subject: Re: [ahc] getting information
                                    >
                                    >I would like information on clinical triail. Me son just turned for an dsince
                                    may his episodes have icreased. They put him on a new medicine saturday that
                                    is a calcium channel blocker.
                                    >Sent via BlackBerry by AT&T
                                    >
                                    >-----Original Message-----
                                    >From: kcventi <kcventi@verizon. net>
                                    >
                                    >Date: Tue, 5 Aug 2008 12:18:05
                                    >To: <afha@yahoogroups. com>
                                    >Subject: Re: [ahc] getting information
                                    >
                                    >I am not sure if you are talking about looking for information on the Chicago
                                    meeting but usually what happens after a meeting is Lynn Egan and her husband
                                    Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                                    group to ask if anyone wants her to send a copy (with small fee to cover
                                    shipping). It does take a little time to get the download done but they are
                                    very quick.
                                    >
                                    >If this is what you are looking for, you may want to email lynn and her email
                                    is on www.ahckids. org
                                    >
                                    >As for info on clinical trial, I think we are waiting but you could try
                                    emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                    >
                                    >Karen
                                    >
                                    >paigeashworth@ yahoo.com wrote:
                                    >I have also tried to get information. Let me know if you are successful.
                                    >Sent via BlackBerry by AT&T
                                    >
                                    >-----Original Message-----
                                    >From: "lxdimd1" <lxdimd1@yahoo. com>
                                    >
                                    >Date: Tue, 05 Aug 2008 17:56:12
                                    >To: <afha@yahoogroups. com>
                                    >Subject: [ahc] getting information
                                    >
                                    >I have tried to get information of any kind.I also have tried to get
                                    >the family packet from the ahckids website and have not received
                                    >anything.Is there anywhere else I can get information? ??Please someone
                                    >point me in the right direction.
                                    >
                                    >[Non-text portions of this message have been removed]
                                    >
                                    >[Non-text portions of this message have been removed]
                                    >
                                    >[Non-text portions of this message have been removed]
                                    >
                                    >[Non-text portions of this message have been removed]
                                    >
                                    >[Non-text portions of this message have been removed]
                                    >
                                    >[Non-text portions of this message have been removed]
                                    >
                                    >[Non-text portions of this message have been removed]
                                    >
                                    >[Non-text portions of this message have been removed]
                                    >
                                    >

                                    [Non-text portions of this message have been removed]





                                    [Non-text portions of this message have been removed]
                                  • David
                                    We have given our son Kyle (now 17) valium to help ease the most severe episodes. Most of the time he does fairly well in handling the hemiplegia but
                                    Message 17 of 23 , Aug 7, 2008
                                    View Source
                                    • 0 Attachment
                                      We have given our son Kyle (now 17) valium to help ease the most severe
                                      episodes. Most of the time he does fairly well in handling the hemiplegia but
                                      occasionally has the full body episodes and the valium does help ease the attack
                                      but will not make it quit. I think that it just helps his body relax a little
                                      and we can tell that it enables him to be a little more comfortable. As far as
                                      when to give it, that is just a judgment call for you based on your experience
                                      and how quickly you child responds. We keep it with us all the time (my wife's
                                      purse) when we go on trips, amusement parks, etc and will give it to him when he
                                      begins to or we can tell he is going to have a severe episode.


                                      David and DeAnne, Kyle 17


                                      _____

                                      From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of
                                      renny01@...
                                      Sent: Thursday, August 07, 2008 5:16 PM
                                      To: afha@yahoogroups.com
                                      Subject: Re: Re: [ahc] getting information



                                      >From: kcventi <kcventi@verizon. <mailto:kcventi%40verizon.net> net>
                                      >Date: 2008/08/06 Wed AM 07:34:00 CDT
                                      >To: afha@yahoogroups. <mailto:afha%40yahoogroups.com> com
                                      >Subject: Re: [ahc] getting information
                                      Does anyone have experience with giving valium during an AHC episode. Alecs
                                      episodes have gotten much worse and the Doctor has given us valium. Does
                                      anyone know how long they should be in episode to give the valium. We don't
                                      want to drug him if the episode isn't going to progress but we don't want it
                                      to get to the point of no return before we give it. And do your children
                                      respond to the treatment? Alec is 10 now and requires suction and o2 during
                                      episodes. He also vomits and has major involentary muscle movements(bouncing
                                      2 ft in the air for hrs and hrs at a time) This leaves him with full body
                                      paralysis and then tired for days after. He is on 25 mg of flunarizine.
                                      Thanks for any advice you can give us.
                                      Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                      >
                                      >You are not a paranoid mother. I think alot of us have felt the pressure of
                                      advocating for our children with schools and doctors when their condition
                                      changes so much to everyday stimuli. It is hard for everyone.
                                      >
                                      > If you feel you need more info on your child's abilities and disabilities,
                                      get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                                      highly recommended in your area and has worked with children with complex med
                                      conditions or is possibly linked to a specialty service like
                                      neurology/epilepsy or metobolic or movement disorders depts. Often your local
                                      PAC (parent action comittee set up by parents of sped ed kids) can supply list
                                      of neuropyschologist in area.
                                      >
                                      > This eval should assess your child's skills and learning style so you can
                                      have unbiased info to work with your school and pull together and IEP for
                                      services, perhaps care plan if needed, speech, therapies and academic
                                      supports. A great website for info about your child's school rights is
                                      www.wrightslaw.com.
                                      >
                                      > Our daughter continued and still continues to progress. Her motor is
                                      affected but we find it is more inhibited by the seizures she exper with
                                      exertion than her abilities. She can climb and run, cut and color but only
                                      for short times before she tremors. Her learning has really picked up with
                                      the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                                      until basic skills acquired. Start early if possible! Also we have found
                                      over time that she is learning with intense support but her rate of growth is
                                      slower than peers and this becomes more evident as she ages.
                                      >
                                      >We have experiences alot of issues with her needed accomodations of sleep mid
                                      day, air conditioning and no old flickering flourescent lighting. So as you
                                      can imagine, the schools have a lot to meet and it's not easy for anyone.
                                      Unfortunately ours decided to say no and send her home at lunch and give one
                                      hour of home tutoring. This is not fair and she wants to be w/friends but
                                      needs to sleep mid day to make it through day without worsening her health.
                                      >
                                      > You just have to push to get what your child needs to progress to the best
                                      of his potential. It's hard and exasperating with everything else on your
                                      plate. That's why this group is so helpful.
                                      >
                                      > Keep in touch and let us know how things go.
                                      >
                                      > Karen
                                      >
                                      >
                                      >paigeashworth@ <mailto:paigeashworth%40yahoo.com> yahoo.com wrote:
                                      > Do you know anything about the regression. Like at the age of 4
                                      could he Still regress were he loses his skills. He is very smart and I think
                                      that is why I am having problems with the schools. They were putting him in
                                      time out because he refused to participate in art when I had told them
                                      numerous times his has fine and gross motor delays And they look at me like I
                                      am a paranoid mother.
                                      >Sent via BlackBerry by AT&T
                                      >
                                      >-----Original Message-----
                                      >From: Tina <mycrew5@yahoo. <mailto:mycrew5%40yahoo.com> com>
                                      >
                                      >Date: Tue, 5 Aug 2008 16:18:21
                                      >To: <afha@yahoogroups. <mailto:afha%40yahoogroups.com> com>
                                      >Subject: Re: [ahc] getting information
                                      >
                                      >The school has to accomidate all his needs, don' t let them make you feel
                                      like you are requesting terrible stuff, they will do it, you just have to push
                                      a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                                      communative and ok with the cognitive and she has gone thru her share of
                                      episodes, maybe your son will be the same as he grows older.
                                      >
                                      >----- Original Message ----
                                      >From: "paigeashworth@ <mailto:paigeashworth%40yahoo.com> yahoo.com"
                                      <paigeashworth@ <mailto:paigeashworth%40yahoo.com> yahoo.com>
                                      >To: afha@yahoogroups. <mailto:afha%40yahoogroups.com> com
                                      >Sent: Tuesday, August 5, 2008 7:06:24 PM
                                      >Subject: Re: [ahc] getting information
                                      >
                                      >The channel blocker my son is on is called nifedipine. He also takes diamox
                                      and biotin. Up to this point my son has not lost any cognitive or
                                      communication skills but with the episodes increasing I am very worried about
                                      this. He can't tolerate the sun at all and I am having problems with schools
                                      accomidating his needs.
                                      >Sent via BlackBerry by AT&T
                                      >
                                      >-----Original Message-----
                                      >From: Tina <mycrew5@yahoo. com>
                                      >
                                      >Date: Tue, 5 Aug 2008 15:54:32
                                      >To: <afha@yahoogroups. com>
                                      >Subject: Re: [ahc] getting information
                                      >
                                      >Jaci is on a calcium channel blocker called Sular. This does not prevent her
                                      from having episodes but it does help her pull out of the quicker, they don' t
                                      seeem to last as long. Does anyone have issues with oppositional difiance
                                      disorder with thier child?
                                      >
                                      >----- Original Message ----
                                      >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                      >To: afha@yahoogroups. com
                                      >Sent: Tuesday, August 5, 2008 3:20:03 PM
                                      >Subject: Re: [ahc] getting information
                                      >
                                      >I would like information on clinical triail. Me son just turned for an dsince
                                      may his episodes have icreased. They put him on a new medicine saturday that
                                      is a calcium channel blocker.
                                      >Sent via BlackBerry by AT&T
                                      >
                                      >-----Original Message-----
                                      >From: kcventi <kcventi@verizon. net>
                                      >
                                      >Date: Tue, 5 Aug 2008 12:18:05
                                      >To: <afha@yahoogroups. com>
                                      >Subject: Re: [ahc] getting information
                                      >
                                      >I am not sure if you are talking about looking for information on the Chicago
                                      meeting but usually what happens after a meeting is Lynn Egan and her husband
                                      Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                                      group to ask if anyone wants her to send a copy (with small fee to cover
                                      shipping). It does take a little time to get the download done but they are
                                      very quick.
                                      >
                                      >If this is what you are looking for, you may want to email lynn and her email
                                      is on www.ahckids. org
                                      >
                                      >As for info on clinical trial, I think we are waiting but you could try
                                      emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                      >
                                      >Karen
                                      >
                                      >paigeashworth@ yahoo.com wrote:
                                      >I have also tried to get information. Let me know if you are successful.
                                      >Sent via BlackBerry by AT&T
                                      >
                                      >-----Original Message-----
                                      >From: "lxdimd1" <lxdimd1@yahoo. com>
                                      >
                                      >Date: Tue, 05 Aug 2008 17:56:12
                                      >To: <afha@yahoogroups. com>
                                      >Subject: [ahc] getting information
                                      >
                                      >I have tried to get information of any kind.I also have tried to get
                                      >the family packet from the ahckids website and have not received
                                      >anything.Is there anywhere else I can get information? ??Please someone
                                      >point me in the right direction.
                                      >
                                      >[Non-text portions of this message have been removed]
                                      >
                                      >[Non-text portions of this message have been removed]
                                      >
                                      >[Non-text portions of this message have been removed]
                                      >
                                      >[Non-text portions of this message have been removed]
                                      >
                                      >[Non-text portions of this message have been removed]
                                      >
                                      >[Non-text portions of this message have been removed]
                                      >
                                      >[Non-text portions of this message have been removed]
                                      >
                                      >[Non-text portions of this message have been removed]
                                      >
                                      >







                                      [Non-text portions of this message have been removed]
                                    • kluting1
                                      Kelly, I will post the dose we use as well and you can figure out what works best for you. We give Trevor now 2 mg of oral valium if he clusters meaning
                                      Message 18 of 23 , Aug 7, 2008
                                      View Source
                                      • 0 Attachment
                                        Kelly, I will post the dose we use as well and you can figure out
                                        what works best for you. We give Trevor now 2 mg of oral valium if
                                        he "clusters" meaning more then one episode especially if it starts
                                        early in the day before noon. This works AWESOME for us if you
                                        catch it early. We only see side effects of behavior usually the
                                        day after. He gets much better after the valium and is back to
                                        happy and ready to go. He is more "outgoing" with meds on board so
                                        you have to watch him as he will go and go. We see NO respiratory
                                        depression with this low dose, it is a tablet that I mix in yogurt
                                        when he is able to swallow okay. You can see resp. depression with
                                        valium but most of these kids are on multiple meds and I see many of
                                        them on much higher doses especially when given rectally. We only
                                        use rectal diastat for seizures however we used it for clusters of
                                        episodes when he was much younger, we gave 2.5 mg of diastat since
                                        I couldn't get tablets down him easily plus we didn't know how well
                                        the oral would work at that time. I started the oral valium dose at
                                        1 mg then went to 1.5 and now 2mg Trevor is 9 y/o and weighs 47lbs.
                                        Maybe just look at the other posts and see what seems to work best
                                        overall for the majority of the kids. Sorry to hear things are bad
                                        for you we certainly all understand how bad it can get. We just did
                                        an ambulance ride and 3 days in the ICU with Trevor when he got a
                                        severe virus and spiked huge temps had a seizure, he still is
                                        recovering from all of it and we are two weeks out today. Please
                                        feel free to call me anytime if you want to chat 907-747-8379
                                        Pacific Time.

                                        Karen and Trevor




                                        --- In afha@yahoogroups.com, <renny01@...> wrote:

                                        >
                                        > >From: kcventi <kcventi@...>
                                        > >Date: 2008/08/06 Wed AM 07:34:00 CDT
                                        > >To: afha@yahoogroups.com
                                        > >Subject: Re: [ahc] getting information
                                        > Does anyone have experience with giving valium during an AHC
                                        episode. Alecs
                                        > episodes have gotten much worse and the Doctor has given us
                                        valium. Does
                                        > anyone know how long they should be in episode to give the
                                        valium. We don't
                                        > want to drug him if the episode isn't going to progress but we
                                        don't want it
                                        > to get to the point of no return before we give it. And do your
                                        children
                                        > respond to the treatment? Alec is 10 now and requires suction and
                                        o2 during
                                        > episodes. He also vomits and has major involentary muscle
                                        movements(bouncing
                                        > 2 ft in the air for hrs and hrs at a time) This leaves him with
                                        full body
                                        > paralysis and then tired for days after. He is on 25 mg of
                                        flunarizine.
                                        > Thanks for any advice you can give us.
                                        > Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                        > >
                                        > >You are not a paranoid mother. I think alot of us have felt the
                                        pressure of
                                        > advocating for our children with schools and doctors when their
                                        condition
                                        > changes so much to everyday stimuli. It is hard for everyone.
                                        > >
                                        > > If you feel you need more info on your child's abilities and
                                        disabilities,
                                        > get an outside neuropsyche evaluation. Look for a
                                        neuropsychologist that is
                                        > highly recommended in your area and has worked with children with
                                        complex med
                                        > conditions or is possibly linked to a specialty service like
                                        > neurology/epilepsy or metobolic or movement disorders depts. Often
                                        your local
                                        > PAC (parent action comittee set up by parents of sped ed kids) can
                                        supply list
                                        > of neuropyschologist in area.
                                        > >
                                        > > This eval should assess your child's skills and learning style
                                        so you can
                                        > have unbiased info to work with your school and pull together and
                                        IEP for
                                        > services, perhaps care plan if needed, speech, therapies and
                                        academic
                                        > supports. A great website for info about your child's school
                                        rights is
                                        > www.wrightslaw.com.
                                        > >
                                        > > Our daughter continued and still continues to progress. Her
                                        motor is
                                        > affected but we find it is more inhibited by the seizures she
                                        exper with
                                        > exertion than her abilities. She can climb and run, cut and color
                                        but only
                                        > for short times before she tremors. Her learning has really
                                        picked up with
                                        > the right 1 on 1 reading and math supports. She couldn't keep up
                                        in in groups
                                        > until basic skills acquired. Start early if possible! Also we
                                        have found
                                        > over time that she is learning with intense support but her rate
                                        of growth is
                                        > slower than peers and this becomes more evident as she ages.
                                        > >
                                        > >We have experiences alot of issues with her needed accomodations
                                        of sleep mid
                                        > day, air conditioning and no old flickering flourescent lighting.
                                        So as you
                                        > can imagine, the schools have a lot to meet and it's not easy for
                                        anyone.
                                        > Unfortunately ours decided to say no and send her home at lunch
                                        and give one
                                        > hour of home tutoring. This is not fair and she wants to be
                                        w/friends but
                                        > needs to sleep mid day to make it through day without worsening
                                        her health.
                                        > >
                                        > > You just have to push to get what your child needs to progress
                                        to the best
                                        > of his potential. It's hard and exasperating with everything else
                                        on your
                                        > plate. That's why this group is so helpful.
                                        > >
                                        > > Keep in touch and let us know how things go.
                                        > >
                                        > > Karen
                                        > >
                                        > >
                                        > >paigeashworth@... wrote:
                                        > > Do you know anything about the regression. Like at the
                                        age of 4
                                        > could he Still regress were he loses his skills. He is very smart
                                        and I think
                                        > that is why I am having problems with the schools. They were
                                        putting him in
                                        > time out because he refused to participate in art when I had told
                                        them
                                        > numerous times his has fine and gross motor delays And they look
                                        at me like I
                                        > am a paranoid mother.
                                        > >Sent via BlackBerry by AT&T
                                        > >
                                        > >-----Original Message-----
                                        > >From: Tina <mycrew5@...>
                                        > >
                                        > >Date: Tue, 5 Aug 2008 16:18:21
                                        > >To: <afha@yahoogroups.com>
                                        > >Subject: Re: [ahc] getting information
                                        > >
                                        > >The school has to accomidate all his needs, don' t let them make
                                        you feel
                                        > like you are requesting terrible stuff, they will do it, you just
                                        have to push
                                        > a little hard sometimes. Like i have said before Jaci is 28 and
                                        she is VERY
                                        > communative and ok with the cognitive and she has gone thru her
                                        share of
                                        > episodes, maybe your son will be the same as he grows older.
                                        > >
                                        > >----- Original Message ----
                                        > >From: "paigeashworth@..." <paigeashworth@...>
                                        > >To: afha@yahoogroups.com
                                        > >Sent: Tuesday, August 5, 2008 7:06:24 PM
                                        > >Subject: Re: [ahc] getting information
                                        > >
                                        > >The channel blocker my son is on is called nifedipine. He also
                                        takes diamox
                                        > and biotin. Up to this point my son has not lost any cognitive or
                                        > communication skills but with the episodes increasing I am very
                                        worried about
                                        > this. He can't tolerate the sun at all and I am having problems
                                        with schools
                                        > accomidating his needs.
                                        > >Sent via BlackBerry by AT&T
                                        > >
                                        > >-----Original Message-----
                                        > >From: Tina <mycrew5@yahoo. com>
                                        > >
                                        > >Date: Tue, 5 Aug 2008 15:54:32
                                        > >To: <afha@yahoogroups. com>
                                        > >Subject: Re: [ahc] getting information
                                        > >
                                        > >Jaci is on a calcium channel blocker called Sular. This does not
                                        prevent her
                                        > from having episodes but it does help her pull out of the quicker,
                                        they don' t
                                        > seeem to last as long. Does anyone have issues with oppositional
                                        difiance
                                        > disorder with thier child?
                                        > >
                                        > >----- Original Message ----
                                        > >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                        > >To: afha@yahoogroups. com
                                        > >Sent: Tuesday, August 5, 2008 3:20:03 PM
                                        > >Subject: Re: [ahc] getting information
                                        > >
                                        > >I would like information on clinical triail. Me son just turned
                                        for an dsince
                                        > may his episodes have icreased. They put him on a new medicine
                                        saturday that
                                        > is a calcium channel blocker.
                                        > >Sent via BlackBerry by AT&T
                                        > >
                                        > >-----Original Message-----
                                        > >From: kcventi <kcventi@verizon. net>
                                        > >
                                        > >Date: Tue, 5 Aug 2008 12:18:05
                                        > >To: <afha@yahoogroups. com>
                                        > >Subject: Re: [ahc] getting information
                                        > >
                                        > >I am not sure if you are talking about looking for information on
                                        the Chicago
                                        > meeting but usually what happens after a meeting is Lynn Egan and
                                        her husband
                                        > Mark who tape the meeting, have to transfer it to cd. Then she'll
                                        email the
                                        > group to ask if anyone wants her to send a copy (with small fee to
                                        cover
                                        > shipping). It does take a little time to get the download done but
                                        they are
                                        > very quick.
                                        > >
                                        > >If this is what you are looking for, you may want to email lynn
                                        and her email
                                        > is on www.ahckids. org
                                        > >
                                        > >As for info on clinical trial, I think we are waiting but you
                                        could try
                                        > emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                        > >
                                        > >Karen
                                        > >
                                        > >paigeashworth@ yahoo.com wrote:
                                        > >I have also tried to get information. Let me know if you are
                                        successful.
                                        > >Sent via BlackBerry by AT&T
                                        > >
                                        > >-----Original Message-----
                                        > >From: "lxdimd1" <lxdimd1@yahoo. com>
                                        > >
                                        > >Date: Tue, 05 Aug 2008 17:56:12
                                        > >To: <afha@yahoogroups. com>
                                        > >Subject: [ahc] getting information
                                        > >
                                        > >I have tried to get information of any kind.I also have tried to
                                        get
                                        > >the family packet from the ahckids website and have not received
                                        > >anything.Is there anywhere else I can get information? ??Please
                                        someone
                                        > >point me in the right direction.
                                        > >
                                        > >[Non-text portions of this message have been removed]
                                        > >
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                                      • renny01@verizon.net
                                        ... Our neuroligist did not want to give alec anything stating that nothing would help with an episode. We finally talked him into the valium and we are
                                        Message 19 of 23 , Aug 8, 2008
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                                        • 0 Attachment
                                          >From: kcventi <kcventi@...>
                                          >Date: 2008/08/07 Thu PM 08:35:04 CDT
                                          >To: afha@yahoogroups.com
                                          >Subject: Re: Re: [ahc] getting information
                                          Our neuroligist did not want to give alec anything stating that nothing would
                                          help with an episode. We finally talked him into the valium and we are
                                          waiting for the perscription via mail. If for nothing else we too are looking
                                          to at least keep alec comfortable during the attack which appears to be very
                                          painful. The dose is 5 mg and it is oral. I think I can change that if need
                                          be. Alec weighs 100 lbs.
                                          He was worked up last week with ambulatory eeg and it shows no evidence of
                                          seizure. We are very concerned for his safety during these episodes. He is
                                          bouncing off the bed even though we have bed rails and grown ups trying to
                                          stop him. Any suggestions as this seems to be a daily event.
                                          Kelly mom to alec
                                          >
                                          >Hi Kelly and Brad
                                          >
                                          > Sorry to hear Alec is having such a hard time. Are you talking about oral
                                          valium or diastat for use with attacks?
                                          >
                                          > Oral valium always took longer to work for Addie and left her hyper and
                                          trying to walk and run while eyes deviating and leg weak.
                                          >
                                          > We use diastat for her seizures ( and some maybe AHC we mistake for
                                          seizure- who knows) but the quicker we stop it the less chance it has of
                                          continiuing on and not responding to more meds. I don't know exactly how much
                                          risk there is from the valium but I don't think it is alot. On the other
                                          hand, if his O2 is compromised or he aspirates, then there are real risks to
                                          his health.
                                          >
                                          > Have you been able to rule out seizure during these events? You may be
                                          able to call Dr Swoboda and get an idea of treatment and if others are
                                          experiencing this. How does he respond to the valium? It can surpress
                                          breathing depending upon dosage and his health but Addie has always done well
                                          with the 10mg diastat. Anything more needed, and we go to the hospital.
                                          >
                                          > Please call me if I can answer any questions about diastat.
                                          >
                                          > Take care,
                                          >
                                          > Karen
                                          >
                                          >renny01@... wrote:
                                          > >From: kcventi <kcventi@...>
                                          >>Date: 2008/08/06 Wed AM 07:34:00 CDT
                                          >>To: afha@yahoogroups.com
                                          >>Subject: Re: [ahc] getting information
                                          >Does anyone have experience with giving valium during an AHC episode. Alecs
                                          >episodes have gotten much worse and the Doctor has given us valium. Does
                                          >anyone know how long they should be in episode to give the valium. We don't
                                          >want to drug him if the episode isn't going to progress but we don't want it
                                          >to get to the point of no return before we give it. And do your children
                                          >respond to the treatment? Alec is 10 now and requires suction and o2 during
                                          >episodes. He also vomits and has major involentary muscle movements(bouncing
                                          >2 ft in the air for hrs and hrs at a time) This leaves him with full body
                                          >paralysis and then tired for days after. He is on 25 mg of flunarizine.
                                          >Thanks for any advice you can give us.
                                          >Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                          >>
                                          >>You are not a paranoid mother. I think alot of us have felt the pressure of
                                          >advocating for our children with schools and doctors when their condition
                                          >changes so much to everyday stimuli. It is hard for everyone.
                                          >>
                                          >> If you feel you need more info on your child's abilities and disabilities,
                                          >get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                                          >highly recommended in your area and has worked with children with complex med
                                          >conditions or is possibly linked to a specialty service like
                                          >neurology/epilepsy or metobolic or movement disorders depts. Often your local
                                          >PAC (parent action comittee set up by parents of sped ed kids) can supply
                                          list
                                          >of neuropyschologist in area.
                                          >>
                                          >> This eval should assess your child's skills and learning style so you can
                                          >have unbiased info to work with your school and pull together and IEP for
                                          >services, perhaps care plan if needed, speech, therapies and academic
                                          >supports. A great website for info about your child's school rights is
                                          >www.wrightslaw.com.
                                          >>
                                          >> Our daughter continued and still continues to progress. Her motor is
                                          >affected but we find it is more inhibited by the seizures she exper with
                                          >exertion than her abilities. She can climb and run, cut and color but only
                                          >for short times before she tremors. Her learning has really picked up with
                                          >the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                                          >until basic skills acquired. Start early if possible! Also we have found
                                          >over time that she is learning with intense support but her rate of growth is
                                          >slower than peers and this becomes more evident as she ages.
                                          >>
                                          >>We have experiences alot of issues with her needed accomodations of sleep
                                          mid
                                          >day, air conditioning and no old flickering flourescent lighting. So as you
                                          >can imagine, the schools have a lot to meet and it's not easy for anyone.
                                          >Unfortunately ours decided to say no and send her home at lunch and give one
                                          >hour of home tutoring. This is not fair and she wants to be w/friends but
                                          >needs to sleep mid day to make it through day without worsening her health.
                                          >>
                                          >> You just have to push to get what your child needs to progress to the best
                                          >of his potential. It's hard and exasperating with everything else on your
                                          >plate. That's why this group is so helpful.
                                          >>
                                          >> Keep in touch and let us know how things go.
                                          >>
                                          >> Karen
                                          >>
                                          >>
                                          >>paigeashworth@... wrote:
                                          >> Do you know anything about the regression. Like at the age of 4
                                          >could he Still regress were he loses his skills. He is very smart and I think
                                          >that is why I am having problems with the schools. They were putting him in
                                          >time out because he refused to participate in art when I had told them
                                          >numerous times his has fine and gross motor delays And they look at me like I
                                          >am a paranoid mother.
                                          >>Sent via BlackBerry by AT&T
                                          >>
                                          >>-----Original Message-----
                                          >>From: Tina <mycrew5@...>
                                          >>
                                          >>Date: Tue, 5 Aug 2008 16:18:21
                                          >>To: <afha@yahoogroups.com>
                                          >>Subject: Re: [ahc] getting information
                                          >>
                                          >>The school has to accomidate all his needs, don' t let them make you feel
                                          >like you are requesting terrible stuff, they will do it, you just have to
                                          push
                                          >a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                                          >communative and ok with the cognitive and she has gone thru her share of
                                          >episodes, maybe your son will be the same as he grows older.
                                          >>
                                          >>----- Original Message ----
                                          >>From: "paigeashworth@..." <paigeashworth@...>
                                          >>To: afha@yahoogroups.com
                                          >>Sent: Tuesday, August 5, 2008 7:06:24 PM
                                          >>Subject: Re: [ahc] getting information
                                          >>
                                          >>The channel blocker my son is on is called nifedipine. He also takes diamox
                                          >and biotin. Up to this point my son has not lost any cognitive or
                                          >communication skills but with the episodes increasing I am very worried about
                                          >this. He can't tolerate the sun at all and I am having problems with schools
                                          >accomidating his needs.
                                          >>Sent via BlackBerry by AT&T
                                          >>
                                          >>-----Original Message-----
                                          >>From: Tina <mycrew5@yahoo. com>
                                          >>
                                          >>Date: Tue, 5 Aug 2008 15:54:32
                                          >>To: <afha@yahoogroups. com>
                                          >>Subject: Re: [ahc] getting information
                                          >>
                                          >>Jaci is on a calcium channel blocker called Sular. This does not prevent her
                                          >from having episodes but it does help her pull out of the quicker, they don'
                                          t
                                          >seeem to last as long. Does anyone have issues with oppositional difiance
                                          >disorder with thier child?
                                          >>
                                          >>----- Original Message ----
                                          >>From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                          >>To: afha@yahoogroups. com
                                          >>Sent: Tuesday, August 5, 2008 3:20:03 PM
                                          >>Subject: Re: [ahc] getting information
                                          >>
                                          >>I would like information on clinical triail. Me son just turned for an
                                          dsince
                                          >may his episodes have icreased. They put him on a new medicine saturday that
                                          >is a calcium channel blocker.
                                          >>Sent via BlackBerry by AT&T
                                          >>
                                          >>-----Original Message-----
                                          >>From: kcventi <kcventi@verizon. net>
                                          >>
                                          >>Date: Tue, 5 Aug 2008 12:18:05
                                          >>To: <afha@yahoogroups. com>
                                          >>Subject: Re: [ahc] getting information
                                          >>
                                          >>I am not sure if you are talking about looking for information on the
                                          Chicago
                                          >meeting but usually what happens after a meeting is Lynn Egan and her husband
                                          >Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                                          >group to ask if anyone wants her to send a copy (with small fee to cover
                                          >shipping). It does take a little time to get the download done but they are
                                          >very quick.
                                          >>
                                          >>If this is what you are looking for, you may want to email lynn and her
                                          email
                                          >is on www.ahckids. org
                                          >>
                                          >>As for info on clinical trial, I think we are waiting but you could try
                                          >emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                          >>
                                          >>Karen
                                          >>
                                          >>paigeashworth@ yahoo.com wrote:
                                          >>I have also tried to get information. Let me know if you are successful.
                                          >>Sent via BlackBerry by AT&T
                                          >>
                                          >>-----Original Message-----
                                          >>From: "lxdimd1" <lxdimd1@yahoo. com>
                                          >>
                                          >>Date: Tue, 05 Aug 2008 17:56:12
                                          >>To: <afha@yahoogroups. com>
                                          >>Subject: [ahc] getting information
                                          >>
                                          >>I have tried to get information of any kind.I also have tried to get
                                          >>the family packet from the ahckids website and have not received
                                          >>anything.Is there anywhere else I can get information? ??Please someone
                                          >>point me in the right direction.
                                          >>
                                          >>[Non-text portions of this message have been removed]
                                          >>
                                          >>[Non-text portions of this message have been removed]
                                          >>
                                          >>[Non-text portions of this message have been removed]
                                          >>
                                          >>[Non-text portions of this message have been removed]
                                          >>
                                          >>[Non-text portions of this message have been removed]
                                          >>
                                          >>[Non-text portions of this message have been removed]
                                          >>
                                          >>[Non-text portions of this message have been removed]
                                          >>
                                          >>[Non-text portions of this message have been removed]
                                          >>
                                          >>
                                          >
                                          >[Non-text portions of this message have been removed]
                                          >
                                          >
                                        • kcventi
                                          I don t know if you have to wait long for script to arrive but we got liquid valium for Addie at CVS. I don t think ours was flavored though. There is also a
                                          Message 20 of 23 , Aug 8, 2008
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                                            I don't know if you have to wait long for script to arrive but we got liquid valium for Addie at CVS. I don't think ours was flavored though. There is also a pharm in West Acton Center that I think will flavor meds so they are more palatable. We only used our val x1 yr to go to July 4th family picnic but lake and it helped Addie stay there for about 2 hrs before having to leave.

                                            At the mtg, it sounded like alot of people are using valium or xanax or something to help with episodes, either while happening or to help prevent them.

                                            Also Dr Katchen's discussion centered around meds that will help calm this potential overexcitement of cells like benzodiazapiens do (valium like drugs) and those that help stop overflow of calcium into cells during bursting (like flunarazine a calcium channel blocker).

                                            Try calling Dr Swoboda's office and see if they recommend anything as well.

                                            K
                                            renny01@... wrote:
                                            >From: kcventi <kcventi@...>
                                            >Date: 2008/08/07 Thu PM 08:35:04 CDT
                                            >To: afha@yahoogroups.com
                                            >Subject: Re: Re: [ahc] getting information
                                            Our neuroligist did not want to give alec anything stating that nothing would
                                            help with an episode. We finally talked him into the valium and we are
                                            waiting for the perscription via mail. If for nothing else we too are looking
                                            to at least keep alec comfortable during the attack which appears to be very
                                            painful. The dose is 5 mg and it is oral. I think I can change that if need
                                            be. Alec weighs 100 lbs.
                                            He was worked up last week with ambulatory eeg and it shows no evidence of
                                            seizure. We are very concerned for his safety during these episodes. He is
                                            bouncing off the bed even though we have bed rails and grown ups trying to
                                            stop him. Any suggestions as this seems to be a daily event.
                                            Kelly mom to alec
                                            >
                                            >Hi Kelly and Brad
                                            >
                                            > Sorry to hear Alec is having such a hard time. Are you talking about oral
                                            valium or diastat for use with attacks?
                                            >
                                            > Oral valium always took longer to work for Addie and left her hyper and
                                            trying to walk and run while eyes deviating and leg weak.
                                            >
                                            > We use diastat for her seizures ( and some maybe AHC we mistake for
                                            seizure- who knows) but the quicker we stop it the less chance it has of
                                            continiuing on and not responding to more meds. I don't know exactly how much
                                            risk there is from the valium but I don't think it is alot. On the other
                                            hand, if his O2 is compromised or he aspirates, then there are real risks to
                                            his health.
                                            >
                                            > Have you been able to rule out seizure during these events? You may be
                                            able to call Dr Swoboda and get an idea of treatment and if others are
                                            experiencing this. How does he respond to the valium? It can surpress
                                            breathing depending upon dosage and his health but Addie has always done well
                                            with the 10mg diastat. Anything more needed, and we go to the hospital.
                                            >
                                            > Please call me if I can answer any questions about diastat.
                                            >
                                            > Take care,
                                            >
                                            > Karen
                                            >
                                            >renny01@... wrote:
                                            > >From: kcventi <kcventi@...>
                                            >>Date: 2008/08/06 Wed AM 07:34:00 CDT
                                            >>To: afha@yahoogroups.com
                                            >>Subject: Re: [ahc] getting information
                                            >Does anyone have experience with giving valium during an AHC episode. Alecs
                                            >episodes have gotten much worse and the Doctor has given us valium. Does
                                            >anyone know how long they should be in episode to give the valium. We don't
                                            >want to drug him if the episode isn't going to progress but we don't want it
                                            >to get to the point of no return before we give it. And do your children
                                            >respond to the treatment? Alec is 10 now and requires suction and o2 during
                                            >episodes. He also vomits and has major involentary muscle movements(bouncing
                                            >2 ft in the air for hrs and hrs at a time) This leaves him with full body
                                            >paralysis and then tired for days after. He is on 25 mg of flunarizine.
                                            >Thanks for any advice you can give us.
                                            >Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                            >>
                                            >>You are not a paranoid mother. I think alot of us have felt the pressure of
                                            >advocating for our children with schools and doctors when their condition
                                            >changes so much to everyday stimuli. It is hard for everyone.
                                            >>
                                            >> If you feel you need more info on your child's abilities and disabilities,
                                            >get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                                            >highly recommended in your area and has worked with children with complex med
                                            >conditions or is possibly linked to a specialty service like
                                            >neurology/epilepsy or metobolic or movement disorders depts. Often your local
                                            >PAC (parent action comittee set up by parents of sped ed kids) can supply
                                            list
                                            >of neuropyschologist in area.
                                            >>
                                            >> This eval should assess your child's skills and learning style so you can
                                            >have unbiased info to work with your school and pull together and IEP for
                                            >services, perhaps care plan if needed, speech, therapies and academic
                                            >supports. A great website for info about your child's school rights is
                                            >www.wrightslaw.com.
                                            >>
                                            >> Our daughter continued and still continues to progress. Her motor is
                                            >affected but we find it is more inhibited by the seizures she exper with
                                            >exertion than her abilities. She can climb and run, cut and color but only
                                            >for short times before she tremors. Her learning has really picked up with
                                            >the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                                            >until basic skills acquired. Start early if possible! Also we have found
                                            >over time that she is learning with intense support but her rate of growth is
                                            >slower than peers and this becomes more evident as she ages.
                                            >>
                                            >>We have experiences alot of issues with her needed accomodations of sleep
                                            mid
                                            >day, air conditioning and no old flickering flourescent lighting. So as you
                                            >can imagine, the schools have a lot to meet and it's not easy for anyone.
                                            >Unfortunately ours decided to say no and send her home at lunch and give one
                                            >hour of home tutoring. This is not fair and she wants to be w/friends but
                                            >needs to sleep mid day to make it through day without worsening her health.
                                            >>
                                            >> You just have to push to get what your child needs to progress to the best
                                            >of his potential. It's hard and exasperating with everything else on your
                                            >plate. That's why this group is so helpful.
                                            >>
                                            >> Keep in touch and let us know how things go.
                                            >>
                                            >> Karen
                                            >>
                                            >>
                                            >>paigeashworth@... wrote:
                                            >> Do you know anything about the regression. Like at the age of 4
                                            >could he Still regress were he loses his skills. He is very smart and I think
                                            >that is why I am having problems with the schools. They were putting him in
                                            >time out because he refused to participate in art when I had told them
                                            >numerous times his has fine and gross motor delays And they look at me like I
                                            >am a paranoid mother.
                                            >>Sent via BlackBerry by AT&T
                                            >>
                                            >>-----Original Message-----
                                            >>From: Tina <mycrew5@...>
                                            >>
                                            >>Date: Tue, 5 Aug 2008 16:18:21
                                            >>To: <afha@yahoogroups.com>
                                            >>Subject: Re: [ahc] getting information
                                            >>
                                            >>The school has to accomidate all his needs, don' t let them make you feel
                                            >like you are requesting terrible stuff, they will do it, you just have to
                                            push
                                            >a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                                            >communative and ok with the cognitive and she has gone thru her share of
                                            >episodes, maybe your son will be the same as he grows older.
                                            >>
                                            >>----- Original Message ----
                                            >>From: "paigeashworth@..." <paigeashworth@...>
                                            >>To: afha@yahoogroups.com
                                            >>Sent: Tuesday, August 5, 2008 7:06:24 PM
                                            >>Subject: Re: [ahc] getting information
                                            >>
                                            >>The channel blocker my son is on is called nifedipine. He also takes diamox
                                            >and biotin. Up to this point my son has not lost any cognitive or
                                            >communication skills but with the episodes increasing I am very worried about
                                            >this. He can't tolerate the sun at all and I am having problems with schools
                                            >accomidating his needs.
                                            >>Sent via BlackBerry by AT&T
                                            >>
                                            >>-----Original Message-----
                                            >>From: Tina <mycrew5@yahoo. com>
                                            >>
                                            >>Date: Tue, 5 Aug 2008 15:54:32
                                            >>To: <afha@yahoogroups. com>
                                            >>Subject: Re: [ahc] getting information
                                            >>
                                            >>Jaci is on a calcium channel blocker called Sular. This does not prevent her
                                            >from having episodes but it does help her pull out of the quicker, they don'
                                            t
                                            >seeem to last as long. Does anyone have issues with oppositional difiance
                                            >disorder with thier child?
                                            >>
                                            >>----- Original Message ----
                                            >>From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                            >>To: afha@yahoogroups. com
                                            >>Sent: Tuesday, August 5, 2008 3:20:03 PM
                                            >>Subject: Re: [ahc] getting information
                                            >>
                                            >>I would like information on clinical triail. Me son just turned for an
                                            dsince
                                            >may his episodes have icreased. They put him on a new medicine saturday that
                                            >is a calcium channel blocker.
                                            >>Sent via BlackBerry by AT&T
                                            >>
                                            >>-----Original Message-----
                                            >>From: kcventi <kcventi@verizon. net>
                                            >>
                                            >>Date: Tue, 5 Aug 2008 12:18:05
                                            >>To: <afha@yahoogroups. com>
                                            >>Subject: Re: [ahc] getting information
                                            >>
                                            >>I am not sure if you are talking about looking for information on the
                                            Chicago
                                            >meeting but usually what happens after a meeting is Lynn Egan and her husband
                                            >Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                                            >group to ask if anyone wants her to send a copy (with small fee to cover
                                            >shipping). It does take a little time to get the download done but they are
                                            >very quick.
                                            >>
                                            >>If this is what you are looking for, you may want to email lynn and her
                                            email
                                            >is on www.ahckids. org
                                            >>
                                            >>As for info on clinical trial, I think we are waiting but you could try
                                            >emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                            >>
                                            >>Karen
                                            >>
                                            >>paigeashworth@ yahoo.com wrote:
                                            >>I have also tried to get information. Let me know if you are successful.
                                            >>Sent via BlackBerry by AT&T
                                            >>
                                            >>-----Original Message-----
                                            >>From: "lxdimd1" <lxdimd1@yahoo. com>
                                            >>
                                            >>Date: Tue, 05 Aug 2008 17:56:12
                                            >>To: <afha@yahoogroups. com>
                                            >>Subject: [ahc] getting information
                                            >>
                                            >>I have tried to get information of any kind.I also have tried to get
                                            >>the family packet from the ahckids website and have not received
                                            >>anything.Is there anywhere else I can get information? ??Please someone
                                            >>point me in the right direction.
                                            >>
                                            >>[Non-text portions of this message have been removed]
                                            >>
                                            >>[Non-text portions of this message have been removed]
                                            >>
                                            >>[Non-text portions of this message have been removed]
                                            >>
                                            >>[Non-text portions of this message have been removed]
                                            >>
                                            >>[Non-text portions of this message have been removed]
                                            >>
                                            >>[Non-text portions of this message have been removed]
                                            >>
                                            >>[Non-text portions of this message have been removed]
                                            >>
                                            >>[Non-text portions of this message have been removed]
                                            >>
                                            >>
                                            >
                                            >[Non-text portions of this message have been removed]
                                            >
                                            >






                                            [Non-text portions of this message have been removed]
                                          • Ms Karen Kluting
                                            Kelly,   you should be able to cut the tablets in half or quarters whatever you need,  I have found them very easy to cut or crush into yogurt or
                                            Message 21 of 23 , Aug 8, 2008
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                                              Kelly,   you should be able to cut the tablets in half or quarters whatever you need,  I have found them very easy to cut or crush into yogurt or whatever,  I would think about calling  someone else for help I have NEVER had a neurologist say don't try anything it won't work.  There are meds that can potentially help.  Trevor doesn't have the movements you are talking about regularly only this last one was very "violent" and the rectal valium stopped it after a few minutes.  It's so hard to go through this without support and I totally understand when you are in the middle of it the helpless feelings you get.  But there are Dr's to turn to so maybe it would help to make a few phone calls.  I tried emailing a few months ago when Trevor was really bad with headaches and it took quite awhile to get a response back but maybe that's changed.  I wish there was a" magic" answer for all of us and the episodes would just stop.
                                              Karen and Trevor

                                              --- On Fri, 8/8/08, renny01@... <renny01@...> wrote:

                                              From: renny01@... <renny01@...>
                                              Subject: Re: Re: Re: [ahc] getting information
                                              To: afha@yahoogroups.com
                                              Date: Friday, August 8, 2008, 4:31 AM






                                              >From: kcventi <kcventi@verizon. net>
                                              >Date: 2008/08/07 Thu PM 08:35:04 CDT
                                              >To: afha@yahoogroups. com
                                              >Subject: Re: Re: [ahc] getting information
                                              Our neuroligist did not want to give alec anything stating that nothing would
                                              help with an episode. We finally talked him into the valium and we are
                                              waiting for the perscription via mail. If for nothing else we too are looking
                                              to at least keep alec comfortable during the attack which appears to be very
                                              painful. The dose is 5 mg and it is oral. I think I can change that if need
                                              be. Alec weighs 100 lbs.
                                              He was worked up last week with ambulatory eeg and it shows no evidence of
                                              seizure. We are very concerned for his safety during these episodes. He is
                                              bouncing off the bed even though we have bed rails and grown ups trying to
                                              stop him. Any suggestions as this seems to be a daily event.
                                              Kelly mom to alec
                                              >
                                              >Hi Kelly and Brad
                                              >
                                              > Sorry to hear Alec is having such a hard time. Are you talking about oral
                                              valium or diastat for use with attacks?
                                              >
                                              > Oral valium always took longer to work for Addie and left her hyper and
                                              trying to walk and run while eyes deviating and leg weak.
                                              >
                                              > We use diastat for her seizures ( and some maybe AHC we mistake for
                                              seizure- who knows) but the quicker we stop it the less chance it has of
                                              continiuing on and not responding to more meds. I don't know exactly how much
                                              risk there is from the valium but I don't think it is alot. On the other
                                              hand, if his O2 is compromised or he aspirates, then there are real risks to
                                              his health.
                                              >
                                              > Have you been able to rule out seizure during these events? You may be
                                              able to call Dr Swoboda and get an idea of treatment and if others are
                                              experiencing this. How does he respond to the valium? It can surpress
                                              breathing depending upon dosage and his health but Addie has always done well
                                              with the 10mg diastat. Anything more needed, and we go to the hospital.
                                              >
                                              > Please call me if I can answer any questions about diastat.
                                              >
                                              > Take care,
                                              >
                                              > Karen
                                              >
                                              >renny01@verizon. net wrote:
                                              > >From: kcventi <kcventi@verizon. net>
                                              >>Date: 2008/08/06 Wed AM 07:34:00 CDT
                                              >>To: afha@yahoogroups. com
                                              >>Subject: Re: [ahc] getting information
                                              >Does anyone have experience with giving valium during an AHC episode. Alecs
                                              >episodes have gotten much worse and the Doctor has given us valium. Does
                                              >anyone know how long they should be in episode to give the valium. We don't
                                              >want to drug him if the episode isn't going to progress but we don't want it
                                              >to get to the point of no return before we give it. And do your children
                                              >respond to the treatment? Alec is 10 now and requires suction and o2 during
                                              >episodes. He also vomits and has major involentary muscle movements(bouncing
                                              >2 ft in the air for hrs and hrs at a time) This leaves him with full body
                                              >paralysis and then tired for days after. He is on 25 mg of flunarizine.
                                              >Thanks for any advice you can give us.
                                              >Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                              >>
                                              >>You are not a paranoid mother. I think alot of us have felt the pressure of
                                              >advocating for our children with schools and doctors when their condition
                                              >changes so much to everyday stimuli. It is hard for everyone.
                                              >>
                                              >> If you feel you need more info on your child's abilities and disabilities,
                                              >get an outside neuropsyche evaluation. Look for a neuropsychologist that is
                                              >highly recommended in your area and has worked with children with complex med
                                              >conditions or is possibly linked to a specialty service like
                                              >neurology/epilepsy or metobolic or movement disorders depts. Often your local
                                              >PAC (parent action comittee set up by parents of sped ed kids) can supply
                                              list
                                              >of neuropyschologist in area.
                                              >>
                                              >> This eval should assess your child's skills and learning style so you can
                                              >have unbiased info to work with your school and pull together and IEP for
                                              >services, perhaps care plan if needed, speech, therapies and academic
                                              >supports. A great website for info about your child's school rights is
                                              >www.wrightslaw. com.
                                              >>
                                              >> Our daughter continued and still continues to progress. Her motor is
                                              >affected but we find it is more inhibited by the seizures she exper with
                                              >exertion than her abilities. She can climb and run, cut and color but only
                                              >for short times before she tremors. Her learning has really picked up with
                                              >the right 1 on 1 reading and math supports. She couldn't keep up in in groups
                                              >until basic skills acquired. Start early if possible! Also we have found
                                              >over time that she is learning with intense support but her rate of growth is
                                              >slower than peers and this becomes more evident as she ages.
                                              >>
                                              >>We have experiences alot of issues with her needed accomodations of sleep
                                              mid
                                              >day, air conditioning and no old flickering flourescent lighting. So as you
                                              >can imagine, the schools have a lot to meet and it's not easy for anyone.
                                              >Unfortunately ours decided to say no and send her home at lunch and give one
                                              >hour of home tutoring. This is not fair and she wants to be w/friends but
                                              >needs to sleep mid day to make it through day without worsening her health.
                                              >>
                                              >> You just have to push to get what your child needs to progress to the best
                                              >of his potential. It's hard and exasperating with everything else on your
                                              >plate. That's why this group is so helpful.
                                              >>
                                              >> Keep in touch and let us know how things go.
                                              >>
                                              >> Karen
                                              >>
                                              >>
                                              >>paigeashworth@ yahoo.com wrote:
                                              >> Do you know anything about the regression. Like at the age of 4
                                              >could he Still regress were he loses his skills. He is very smart and I think
                                              >that is why I am having problems with the schools. They were putting him in
                                              >time out because he refused to participate in art when I had told them
                                              >numerous times his has fine and gross motor delays And they look at me like I
                                              >am a paranoid mother.
                                              >>Sent via BlackBerry by AT&T
                                              >>
                                              >>-----Original Message-----
                                              >>From: Tina <mycrew5@yahoo. com>
                                              >>
                                              >>Date: Tue, 5 Aug 2008 16:18:21
                                              >>To: <afha@yahoogroups. com>
                                              >>Subject: Re: [ahc] getting information
                                              >>
                                              >>The school has to accomidate all his needs, don' t let them make you feel
                                              >like you are requesting terrible stuff, they will do it, you just have to
                                              push
                                              >a little hard sometimes. Like i have said before Jaci is 28 and she is VERY
                                              >communative and ok with the cognitive and she has gone thru her share of
                                              >episodes, maybe your son will be the same as he grows older.
                                              >>
                                              >>----- Original Message ----
                                              >>From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                              >>To: afha@yahoogroups. com
                                              >>Sent: Tuesday, August 5, 2008 7:06:24 PM
                                              >>Subject: Re: [ahc] getting information
                                              >>
                                              >>The channel blocker my son is on is called nifedipine. He also takes diamox
                                              >and biotin. Up to this point my son has not lost any cognitive or
                                              >communication skills but with the episodes increasing I am very worried about
                                              >this. He can't tolerate the sun at all and I am having problems with schools
                                              >accomidating his needs.
                                              >>Sent via BlackBerry by AT&T
                                              >>
                                              >>-----Original Message-----
                                              >>From: Tina <mycrew5@yahoo. com>
                                              >>
                                              >>Date: Tue, 5 Aug 2008 15:54:32
                                              >>To: <afha@yahoogroups. com>
                                              >>Subject: Re: [ahc] getting information
                                              >>
                                              >>Jaci is on a calcium channel blocker called Sular. This does not prevent her
                                              >from having episodes but it does help her pull out of the quicker, they don'
                                              t
                                              >seeem to last as long. Does anyone have issues with oppositional difiance
                                              >disorder with thier child?
                                              >>
                                              >>----- Original Message ----
                                              >>From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                              >>To: afha@yahoogroups. com
                                              >>Sent: Tuesday, August 5, 2008 3:20:03 PM
                                              >>Subject: Re: [ahc] getting information
                                              >>
                                              >>I would like information on clinical triail. Me son just turned for an
                                              dsince
                                              >may his episodes have icreased. They put him on a new medicine saturday that
                                              >is a calcium channel blocker.
                                              >>Sent via BlackBerry by AT&T
                                              >>
                                              >>-----Original Message-----
                                              >>From: kcventi <kcventi@verizon. net>
                                              >>
                                              >>Date: Tue, 5 Aug 2008 12:18:05
                                              >>To: <afha@yahoogroups. com>
                                              >>Subject: Re: [ahc] getting information
                                              >>
                                              >>I am not sure if you are talking about looking for information on the
                                              Chicago
                                              >meeting but usually what happens after a meeting is Lynn Egan and her husband
                                              >Mark who tape the meeting, have to transfer it to cd. Then she'll email the
                                              >group to ask if anyone wants her to send a copy (with small fee to cover
                                              >shipping). It does take a little time to get the download done but they are
                                              >very quick.
                                              >>
                                              >>If this is what you are looking for, you may want to email lynn and her
                                              email
                                              >is on www.ahckids. org
                                              >>
                                              >>As for info on clinical trial, I think we are waiting but you could try
                                              >emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                              >>
                                              >>Karen
                                              >>
                                              >>paigeashworth@ yahoo.com wrote:
                                              >>I have also tried to get information. Let me know if you are successful.
                                              >>Sent via BlackBerry by AT&T
                                              >>
                                              >>-----Original Message-----
                                              >>From: "lxdimd1" <lxdimd1@yahoo. com>
                                              >>
                                              >>Date: Tue, 05 Aug 2008 17:56:12
                                              >>To: <afha@yahoogroups. com>
                                              >>Subject: [ahc] getting information
                                              >>
                                              >>I have tried to get information of any kind.I also have tried to get
                                              >>the family packet from the ahckids website and have not received
                                              >>anything.Is there anywhere else I can get information? ??Please someone
                                              >>point me in the right direction.
                                              >>
                                              >>[Non-text portions of this message have been removed]
                                              >>
                                              >>[Non-text portions of this message have been removed]
                                              >>
                                              >>[Non-text portions of this message have been removed]
                                              >>
                                              >>[Non-text portions of this message have been removed]
                                              >>
                                              >>[Non-text portions of this message have been removed]
                                              >>
                                              >>[Non-text portions of this message have been removed]
                                              >>
                                              >>[Non-text portions of this message have been removed]
                                              >>
                                              >>[Non-text portions of this message have been removed]
                                              >>
                                              >>
                                              >
                                              >[Non-text portions of this message have been removed]
                                              >
                                              >


















                                              [Non-text portions of this message have been removed]
                                            • pgpalmerino
                                              Kelly, Ian is 5 yrs old and about 40 pounds (on a good day). He gets 5mg of rectal valium called Diastat AcuDial (diazepam rectal gel) and it comes in 10mg
                                              Message 22 of 23 , Aug 8, 2008
                                              View Source
                                              • 0 Attachment
                                                Kelly,
                                                Ian is 5 yrs old and about 40 pounds (on a good day). He gets 5mg of
                                                rectal valium called Diastat AcuDial (diazepam rectal gel) and it
                                                comes in 10mg syringes which our pharmacist presets to 5mg. There are
                                                two in a package and we get it from Stop and Shop pharmacy. We give
                                                the diastat as soon as we see the paralysis and Ian is usually asleep
                                                in about 20 minutes (calmer in about 10). Before using diastat Ian's
                                                episodes lasted an average of 8 days, now they only last 5-6 hours.
                                                The episode ends within the first two hours and he sleeps the rest of
                                                the time, wakes up and he is good with no or only temporary loss.
                                                Diastat has definately helped Ian and I hope it will help Alec.
                                                As others have stated, Dr. Swoboda might have some ideas, her number
                                                (s) are:
                                                Phone 801.585.9717 to reach any of the coordinators
                                                Phone 801.585.1676 to reach Dr. Sandra Reyna, co-director
                                                I hope they can help.
                                                Our thoughts and prayers are with all of you.
                                                Best,
                                                Paula




                                                --- In afha@yahoogroups.com, <renny01@...> wrote:
                                                >
                                                > >From: kcventi <kcventi@...>
                                                > >Date: 2008/08/06 Wed AM 07:34:00 CDT
                                                > >To: afha@yahoogroups.com
                                                > >Subject: Re: [ahc] getting information
                                                > Does anyone have experience with giving valium during an AHC
                                                episode. Alecs
                                                > episodes have gotten much worse and the Doctor has given us
                                                valium. Does
                                                > anyone know how long they should be in episode to give the valium.
                                                We don't
                                                > want to drug him if the episode isn't going to progress but we
                                                don't want it
                                                > to get to the point of no return before we give it. And do your
                                                children
                                                > respond to the treatment? Alec is 10 now and requires suction and
                                                o2 during
                                                > episodes. He also vomits and has major involentary muscle movements
                                                (bouncing
                                                > 2 ft in the air for hrs and hrs at a time) This leaves him with
                                                full body
                                                > paralysis and then tired for days after. He is on 25 mg of
                                                flunarizine.
                                                > Thanks for any advice you can give us.
                                                > Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                                > >
                                                > >You are not a paranoid mother. I think alot of us have felt the
                                                pressure of
                                                > advocating for our children with schools and doctors when their
                                                condition
                                                > changes so much to everyday stimuli. It is hard for everyone.
                                                > >
                                                > > If you feel you need more info on your child's abilities and
                                                disabilities,
                                                > get an outside neuropsyche evaluation. Look for a
                                                neuropsychologist that is
                                                > highly recommended in your area and has worked with children with
                                                complex med
                                                > conditions or is possibly linked to a specialty service like
                                                > neurology/epilepsy or metobolic or movement disorders depts. Often
                                                your local
                                                > PAC (parent action comittee set up by parents of sped ed kids) can
                                                supply list
                                                > of neuropyschologist in area.
                                                > >
                                                > > This eval should assess your child's skills and learning style
                                                so you can
                                                > have unbiased info to work with your school and pull together and
                                                IEP for
                                                > services, perhaps care plan if needed, speech, therapies and
                                                academic
                                                > supports. A great website for info about your child's school
                                                rights is
                                                > www.wrightslaw.com.
                                                > >
                                                > > Our daughter continued and still continues to progress. Her
                                                motor is
                                                > affected but we find it is more inhibited by the seizures she exper
                                                with
                                                > exertion than her abilities. She can climb and run, cut and color
                                                but only
                                                > for short times before she tremors. Her learning has really picked
                                                up with
                                                > the right 1 on 1 reading and math supports. She couldn't keep up
                                                in in groups
                                                > until basic skills acquired. Start early if possible! Also we
                                                have found
                                                > over time that she is learning with intense support but her rate of
                                                growth is
                                                > slower than peers and this becomes more evident as she ages.
                                                > >
                                                > >We have experiences alot of issues with her needed accomodations
                                                of sleep mid
                                                > day, air conditioning and no old flickering flourescent lighting.
                                                So as you
                                                > can imagine, the schools have a lot to meet and it's not easy for
                                                anyone.
                                                > Unfortunately ours decided to say no and send her home at lunch and
                                                give one
                                                > hour of home tutoring. This is not fair and she wants to be
                                                w/friends but
                                                > needs to sleep mid day to make it through day without worsening her
                                                health.
                                                > >
                                                > > You just have to push to get what your child needs to progress
                                                to the best
                                                > of his potential. It's hard and exasperating with everything else
                                                on your
                                                > plate. That's why this group is so helpful.
                                                > >
                                                > > Keep in touch and let us know how things go.
                                                > >
                                                > > Karen
                                                > >
                                                > >
                                                > >paigeashworth@... wrote:
                                                > > Do you know anything about the regression. Like at the
                                                age of 4
                                                > could he Still regress were he loses his skills. He is very smart
                                                and I think
                                                > that is why I am having problems with the schools. They were
                                                putting him in
                                                > time out because he refused to participate in art when I had told
                                                them
                                                > numerous times his has fine and gross motor delays And they look at
                                                me like I
                                                > am a paranoid mother.
                                                > >Sent via BlackBerry by AT&T
                                                > >
                                                > >-----Original Message-----
                                                > >From: Tina <mycrew5@...>
                                                > >
                                                > >Date: Tue, 5 Aug 2008 16:18:21
                                                > >To: <afha@yahoogroups.com>
                                                > >Subject: Re: [ahc] getting information
                                                > >
                                                > >The school has to accomidate all his needs, don' t let them make
                                                you feel
                                                > like you are requesting terrible stuff, they will do it, you just
                                                have to push
                                                > a little hard sometimes. Like i have said before Jaci is 28 and she
                                                is VERY
                                                > communative and ok with the cognitive and she has gone thru her
                                                share of
                                                > episodes, maybe your son will be the same as he grows older.
                                                > >
                                                > >----- Original Message ----
                                                > >From: "paigeashworth@..." <paigeashworth@...>
                                                > >To: afha@yahoogroups.com
                                                > >Sent: Tuesday, August 5, 2008 7:06:24 PM
                                                > >Subject: Re: [ahc] getting information
                                                > >
                                                > >The channel blocker my son is on is called nifedipine. He also
                                                takes diamox
                                                > and biotin. Up to this point my son has not lost any cognitive or
                                                > communication skills but with the episodes increasing I am very
                                                worried about
                                                > this. He can't tolerate the sun at all and I am having problems
                                                with schools
                                                > accomidating his needs.
                                                > >Sent via BlackBerry by AT&T
                                                > >
                                                > >-----Original Message-----
                                                > >From: Tina <mycrew5@yahoo. com>
                                                > >
                                                > >Date: Tue, 5 Aug 2008 15:54:32
                                                > >To: <afha@yahoogroups. com>
                                                > >Subject: Re: [ahc] getting information
                                                > >
                                                > >Jaci is on a calcium channel blocker called Sular. This does not
                                                prevent her
                                                > from having episodes but it does help her pull out of the quicker,
                                                they don' t
                                                > seeem to last as long. Does anyone have issues with oppositional
                                                difiance
                                                > disorder with thier child?
                                                > >
                                                > >----- Original Message ----
                                                > >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                                > >To: afha@yahoogroups. com
                                                > >Sent: Tuesday, August 5, 2008 3:20:03 PM
                                                > >Subject: Re: [ahc] getting information
                                                > >
                                                > >I would like information on clinical triail. Me son just turned
                                                for an dsince
                                                > may his episodes have icreased. They put him on a new medicine
                                                saturday that
                                                > is a calcium channel blocker.
                                                > >Sent via BlackBerry by AT&T
                                                > >
                                                > >-----Original Message-----
                                                > >From: kcventi <kcventi@verizon. net>
                                                > >
                                                > >Date: Tue, 5 Aug 2008 12:18:05
                                                > >To: <afha@yahoogroups. com>
                                                > >Subject: Re: [ahc] getting information
                                                > >
                                                > >I am not sure if you are talking about looking for information on
                                                the Chicago
                                                > meeting but usually what happens after a meeting is Lynn Egan and
                                                her husband
                                                > Mark who tape the meeting, have to transfer it to cd. Then she'll
                                                email the
                                                > group to ask if anyone wants her to send a copy (with small fee to
                                                cover
                                                > shipping). It does take a little time to get the download done but
                                                they are
                                                > very quick.
                                                > >
                                                > >If this is what you are looking for, you may want to email lynn
                                                and her email
                                                > is on www.ahckids. org
                                                > >
                                                > >As for info on clinical trial, I think we are waiting but you
                                                could try
                                                > emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                                > >
                                                > >Karen
                                                > >
                                                > >paigeashworth@ yahoo.com wrote:
                                                > >I have also tried to get information. Let me know if you are
                                                successful.
                                                > >Sent via BlackBerry by AT&T
                                                > >
                                                > >-----Original Message-----
                                                > >From: "lxdimd1" <lxdimd1@yahoo. com>
                                                > >
                                                > >Date: Tue, 05 Aug 2008 17:56:12
                                                > >To: <afha@yahoogroups. com>
                                                > >Subject: [ahc] getting information
                                                > >
                                                > >I have tried to get information of any kind.I also have tried to
                                                get
                                                > >the family packet from the ahckids website and have not received
                                                > >anything.Is there anywhere else I can get information? ??Please
                                                someone
                                                > >point me in the right direction.
                                                > >
                                                > >[Non-text portions of this message have been removed]
                                                > >
                                                > >[Non-text portions of this message have been removed]
                                                > >
                                                > >[Non-text portions of this message have been removed]
                                                > >
                                                > >[Non-text portions of this message have been removed]
                                                > >
                                                > >[Non-text portions of this message have been removed]
                                                > >
                                                > >[Non-text portions of this message have been removed]
                                                > >
                                                > >[Non-text portions of this message have been removed]
                                                > >
                                                > >[Non-text portions of this message have been removed]
                                                > >
                                                > >
                                                >
                                              • brenda.dailey
                                                We have been using Lorazepam 0.5mg (also known as Ativan) one hour prior to an excitable event such as swimming, birthday parties and Christmas. Our
                                                Message 23 of 23 , Aug 8, 2008
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                                                • 0 Attachment
                                                  We have been using Lorazepam 0.5mg (also known as Ativan) one hour
                                                  prior to an excitable event such as swimming, birthday parties and
                                                  Christmas. Our daughter is 17 years old and she has been taking this as
                                                  needed since she was 2 years old. Lorazepam is also classified as a
                                                  benzodiazepine. While all kids respond to medications differently,
                                                  this works for her 100% of the time. We also use it after she has a
                                                  dystonic attack lasting longer than 30 minutes. It takes about 45
                                                  minutes to one hour and she gets relief and does not have another
                                                  occurance on that day. Lorazepam also comes in liquid form called
                                                  Lorazepam Intensol. This is placed in the cheek and is absorbed through
                                                  the cheek and works faster that the oral tablet. My daughters
                                                  neurologist only recommends that she take lorazepam "as needed" vs
                                                  daily. She feels that if she were to take it regularly, it may
                                                  eventually not help her and that she would need a higher dose. We have
                                                  not had to increase the dose and we have been using it for 15 years!
                                                  She takes 1-4 tablets per week. Without Lorazepam, she would not be
                                                  swimming, having birthday parties or opening her presents at Christmas.

                                                  Brenda (mother of Torrie-age 17)
                                                  --- In afha@yahoogroups.com, "pgpalmerino" <gpalmerino@...> wrote:
                                                  >
                                                  > Kelly,
                                                  > Ian is 5 yrs old and about 40 pounds (on a good day). He gets 5mg of
                                                  > rectal valium called Diastat AcuDial (diazepam rectal gel) and it
                                                  > comes in 10mg syringes which our pharmacist presets to 5mg. There are
                                                  > two in a package and we get it from Stop and Shop pharmacy. We give
                                                  > the diastat as soon as we see the paralysis and Ian is usually asleep
                                                  > in about 20 minutes (calmer in about 10). Before using diastat Ian's
                                                  > episodes lasted an average of 8 days, now they only last 5-6 hours.
                                                  > The episode ends within the first two hours and he sleeps the rest of
                                                  > the time, wakes up and he is good with no or only temporary loss.
                                                  > Diastat has definately helped Ian and I hope it will help Alec.
                                                  > As others have stated, Dr. Swoboda might have some ideas, her number
                                                  > (s) are:
                                                  > Phone 801.585.9717 to reach any of the coordinators
                                                  > Phone 801.585.1676 to reach Dr. Sandra Reyna, co-director
                                                  > I hope they can help.
                                                  > Our thoughts and prayers are with all of you.
                                                  > Best,
                                                  > Paula
                                                  >
                                                  >
                                                  >
                                                  >
                                                  > --- In afha@yahoogroups.com, renny01@ wrote:
                                                  > >
                                                  > > >From: kcventi kcventi@
                                                  > > >Date: 2008/08/06 Wed AM 07:34:00 CDT
                                                  > > >To: afha@yahoogroups.com
                                                  > > >Subject: Re: [ahc] getting information
                                                  > > Does anyone have experience with giving valium during an AHC
                                                  > episode. Alecs
                                                  > > episodes have gotten much worse and the Doctor has given us
                                                  > valium. Does
                                                  > > anyone know how long they should be in episode to give the valium.
                                                  > We don't
                                                  > > want to drug him if the episode isn't going to progress but we
                                                  > don't want it
                                                  > > to get to the point of no return before we give it. And do your
                                                  > children
                                                  > > respond to the treatment? Alec is 10 now and requires suction and
                                                  > o2 during
                                                  > > episodes. He also vomits and has major involentary muscle movements
                                                  > (bouncing
                                                  > > 2 ft in the air for hrs and hrs at a time) This leaves him with
                                                  > full body
                                                  > > paralysis and then tired for days after. He is on 25 mg of
                                                  > flunarizine.
                                                  > > Thanks for any advice you can give us.
                                                  > > Kelly and Brad parents to Alec 10 Max 8 and camryn 7.
                                                  > > >
                                                  > > >You are not a paranoid mother. I think alot of us have felt the
                                                  > pressure of
                                                  > > advocating for our children with schools and doctors when their
                                                  > condition
                                                  > > changes so much to everyday stimuli. It is hard for everyone.
                                                  > > >
                                                  > > > If you feel you need more info on your child's abilities and
                                                  > disabilities,
                                                  > > get an outside neuropsyche evaluation. Look for a
                                                  > neuropsychologist that is
                                                  > > highly recommended in your area and has worked with children with
                                                  > complex med
                                                  > > conditions or is possibly linked to a specialty service like
                                                  > > neurology/epilepsy or metobolic or movement disorders depts. Often
                                                  > your local
                                                  > > PAC (parent action comittee set up by parents of sped ed kids) can
                                                  > supply list
                                                  > > of neuropyschologist in area.
                                                  > > >
                                                  > > > This eval should assess your child's skills and learning style
                                                  > so you can
                                                  > > have unbiased info to work with your school and pull together and
                                                  > IEP for
                                                  > > services, perhaps care plan if needed, speech, therapies and
                                                  > academic
                                                  > > supports. A great website for info about your child's school
                                                  > rights is
                                                  > > www.wrightslaw.com.
                                                  > > >
                                                  > > > Our daughter continued and still continues to progress. Her
                                                  > motor is
                                                  > > affected but we find it is more inhibited by the seizures she exper
                                                  > with
                                                  > > exertion than her abilities. She can climb and run, cut and color
                                                  > but only
                                                  > > for short times before she tremors. Her learning has really picked
                                                  > up with
                                                  > > the right 1 on 1 reading and math supports. She couldn't keep up
                                                  > in in groups
                                                  > > until basic skills acquired. Start early if possible! Also we
                                                  > have found
                                                  > > over time that she is learning with intense support but her rate of
                                                  > growth is
                                                  > > slower than peers and this becomes more evident as she ages.
                                                  > > >
                                                  > > >We have experiences alot of issues with her needed accomodations
                                                  > of sleep mid
                                                  > > day, air conditioning and no old flickering flourescent lighting.
                                                  > So as you
                                                  > > can imagine, the schools have a lot to meet and it's not easy for
                                                  > anyone.
                                                  > > Unfortunately ours decided to say no and send her home at lunch and
                                                  > give one
                                                  > > hour of home tutoring. This is not fair and she wants to be
                                                  > w/friends but
                                                  > > needs to sleep mid day to make it through day without worsening her
                                                  > health.
                                                  > > >
                                                  > > > You just have to push to get what your child needs to progress
                                                  > to the best
                                                  > > of his potential. It's hard and exasperating with everything else
                                                  > on your
                                                  > > plate. That's why this group is so helpful.
                                                  > > >
                                                  > > > Keep in touch and let us know how things go.
                                                  > > >
                                                  > > > Karen
                                                  > > >
                                                  > > >
                                                  > > >paigeashworth@ wrote:
                                                  > > > Do you know anything about the regression. Like at the
                                                  > age of 4
                                                  > > could he Still regress were he loses his skills. He is very smart
                                                  > and I think
                                                  > > that is why I am having problems with the schools. They were
                                                  > putting him in
                                                  > > time out because he refused to participate in art when I had told
                                                  > them
                                                  > > numerous times his has fine and gross motor delays And they look at
                                                  > me like I
                                                  > > am a paranoid mother.
                                                  > > >Sent via BlackBerry by AT&T
                                                  > > >
                                                  > > >-----Original Message-----
                                                  > > >From: Tina mycrew5@
                                                  > > >
                                                  > > >Date: Tue, 5 Aug 2008 16:18:21
                                                  > > >To: afha@yahoogroups.com
                                                  > > >Subject: Re: [ahc] getting information
                                                  > > >
                                                  > > >The school has to accomidate all his needs, don' t let them make
                                                  > you feel
                                                  > > like you are requesting terrible stuff, they will do it, you just
                                                  > have to push
                                                  > > a little hard sometimes. Like i have said before Jaci is 28 and she
                                                  > is VERY
                                                  > > communative and ok with the cognitive and she has gone thru her
                                                  > share of
                                                  > > episodes, maybe your son will be the same as he grows older.
                                                  > > >
                                                  > > >----- Original Message ----
                                                  > > >From: "paigeashworth@" paigeashworth@
                                                  > > >To: afha@yahoogroups.com
                                                  > > >Sent: Tuesday, August 5, 2008 7:06:24 PM
                                                  > > >Subject: Re: [ahc] getting information
                                                  > > >
                                                  > > >The channel blocker my son is on is called nifedipine. He also
                                                  > takes diamox
                                                  > > and biotin. Up to this point my son has not lost any cognitive or
                                                  > > communication skills but with the episodes increasing I am very
                                                  > worried about
                                                  > > this. He can't tolerate the sun at all and I am having problems
                                                  > with schools
                                                  > > accomidating his needs.
                                                  > > >Sent via BlackBerry by AT&T
                                                  > > >
                                                  > > >-----Original Message-----
                                                  > > >From: Tina mycrew5@yahoo. com>
                                                  > > >
                                                  > > >Date: Tue, 5 Aug 2008 15:54:32
                                                  > > >To: afha@yahoogroups. com>
                                                  > > >Subject: Re: [ahc] getting information
                                                  > > >
                                                  > > >Jaci is on a calcium channel blocker called Sular. This does not
                                                  > prevent her
                                                  > > from having episodes but it does help her pull out of the quicker,
                                                  > they don' t
                                                  > > seeem to last as long. Does anyone have issues with oppositional
                                                  > difiance
                                                  > > disorder with thier child?
                                                  > > >
                                                  > > >----- Original Message ----
                                                  > > >From: "paigeashworth@ yahoo.com" <paigeashworth@ yahoo.com>
                                                  > > >To: afha@yahoogroups. com
                                                  > > >Sent: Tuesday, August 5, 2008 3:20:03 PM
                                                  > > >Subject: Re: [ahc] getting information
                                                  > > >
                                                  > > >I would like information on clinical triail. Me son just turned
                                                  > for an dsince
                                                  > > may his episodes have icreased. They put him on a new medicine
                                                  > saturday that
                                                  > > is a calcium channel blocker.
                                                  > > >Sent via BlackBerry by AT&T
                                                  > > >
                                                  > > >-----Original Message-----
                                                  > > >From: kcventi kcventi@verizon. net>
                                                  > > >
                                                  > > >Date: Tue, 5 Aug 2008 12:18:05
                                                  > > >To: afha@yahoogroups. com>
                                                  > > >Subject: Re: [ahc] getting information
                                                  > > >
                                                  > > >I am not sure if you are talking about looking for information on
                                                  > the Chicago
                                                  > > meeting but usually what happens after a meeting is Lynn Egan and
                                                  > her husband
                                                  > > Mark who tape the meeting, have to transfer it to cd. Then she'll
                                                  > email the
                                                  > > group to ask if anyone wants her to send a copy (with small fee to
                                                  > cover
                                                  > > shipping). It does take a little time to get the download done but
                                                  > they are
                                                  > > very quick.
                                                  > > >
                                                  > > >If this is what you are looking for, you may want to email lynn
                                                  > and her email
                                                  > > is on www.ahckids. org
                                                  > > >
                                                  > > >As for info on clinical trial, I think we are waiting but you
                                                  > could try
                                                  > > emailing Matt Sweney at U of Utah or Dr Swoboda. Hope this helps
                                                  > > >
                                                  > > >Karen
                                                  > > >
                                                  > > >paigeashworth@ yahoo.com wrote:
                                                  > > >I have also tried to get information. Let me know if you are
                                                  > successful.
                                                  > > >Sent via BlackBerry by AT&T
                                                  > > >
                                                  > > >-----Original Message-----
                                                  > > >From: "lxdimd1" lxdimd1@yahoo. com>
                                                  > > >
                                                  > > >Date: Tue, 05 Aug 2008 17:56:12
                                                  > > >To: afha@yahoogroups. com>
                                                  > > >Subject: [ahc] getting information
                                                  > > >
                                                  > > >I have tried to get information of any kind.I also have tried to
                                                  > get
                                                  > > >the family packet from the ahckids website and have not received
                                                  > > >anything.Is there anywhere else I can get information? ??Please
                                                  > someone
                                                  > > >point me in the right direction.
                                                  > > >
                                                  > > >[Non-text portions of this message have been removed]
                                                  > > >
                                                  > > >[Non-text portions of this message have been removed]
                                                  > > >
                                                  > > >[Non-text portions of this message have been removed]
                                                  > > >
                                                  > > >[Non-text portions of this message have been removed]
                                                  > > >
                                                  > > >[Non-text portions of this message have been removed]
                                                  > > >
                                                  > > >[Non-text portions of this message have been removed]
                                                  > > >
                                                  > > >[Non-text portions of this message have been removed]
                                                  > > >
                                                  > > >[Non-text portions of this message have been removed]
                                                  > > >
                                                  > > >
                                                  > >
                                                  >
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