Loading ...
Sorry, an error occurred while loading the content.

New Member

Expand Messages
  • micy1974
    Hello, I am a new at this. but thought I would give it a shot. I am a mother 2 yes 2 Angels. I have twins who will be 8 in Mar. They both have Angelman
    Message 1 of 20 , Jan 27, 2005
    • 0 Attachment
      Hello, I am a new at this. but thought I would give it a shot. I am
      a mother 2 yes 2 Angels. I have twins who will be 8 in Mar. They both
      have Angelman syndrome. I found out about 3 yrs ago.. at the age of 2
      or so, they told me they had CP. They really are pretty good kids.
      They have so much love in their hearts. Always Smiling you know.
      Always willing to give you the BIGGEST hugs. I never joined a group
      because when I found out there was little info to be found about AS.
      So, now I guess I want to talk to others with Little Angels as well.
      Thanks
      Michelle, Indiana
    • Kathy Leonard
      Hi Michelle, Welcome to the group! It s good you are seeking out information. Support from other families really helps because you know you are not alone.
      Message 2 of 20 , Jan 28, 2005
      • 0 Attachment
        Hi Michelle,

        Welcome to the group! It's good you are seeking out information. Support from other families really helps because you know you are not alone. Also, the great thing about Angel parents is you can say anything, or ask anything, and we won't think anything,, because we have been there two.

        With two angels it may be a little different, only because most people have one.

        Since you are new to any group I guess my first question would be,, do you have any questions? Anything you do need advice on? Therapies? Speech, mobility?

        Since you gave an intro, i guess so you know something about me. My name is Kathy and i live in Michigan. I am married with 3 angels. The kids were diagnosed with AS about three years ago, Mandy is 13, Angie is 7 and Rocky is 3. I am also married to a man who must be one of the most patient people i know!

        It's great to hear from you and feel free to post again!
        Kathy





        Http://www.geocities.com/candlecrazy_1999/girlswebpage.html







        ---------------------------------
        Do you Yahoo!?
        Yahoo! Mail - Helps protect you from nasty viruses.

        [Non-text portions of this message have been removed]
      • Ann Watters
        Hello Michelle, I am so happy that there is a site like this where we can talk to other families with AS children since there is so little information out
        Message 3 of 20 , Jan 28, 2005
        • 0 Attachment
          Hello Michelle, I am so happy that there is a site like this where we can talk to other families with AS children since there is so little information out there. My son is only 5 and was diagnosed at the age of 8 months with AS. We were fortunate to have a lot of great people to work with him from early on. Even though we are just beginning our journey with him, we already know that a lot of what we have been told about AS children is not true. He continues to surprise us and his teachers. You are the first person that I have talked to since I am also new at this. Ann, Kansas

          micy1974 <micy1974@...> wrote:
          Hello, I am a new at this. but thought I would give it a shot. I am
          a mother 2 yes 2 Angels. I have twins who will be 8 in Mar. They both
          have Angelman syndrome. I found out about 3 yrs ago.. at the age of 2
          or so, they told me they had CP. They really are pretty good kids.
          They have so much love in their hearts. Always Smiling you know.
          Always willing to give you the BIGGEST hugs. I never joined a group
          because when I found out there was little info to be found about AS.
          So, now I guess I want to talk to others with Little Angels as well.
          Thanks
          Michelle, Indiana





          ---------------------------------
          Yahoo! Groups Links

          To visit your group on the web, go to:
          http://groups.yahoo.com/group/familiesofangelmansyndrome/

          To unsubscribe from this group, send an email to:
          familiesofangelmansyndrome-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



          __________________________________________________
          Do You Yahoo!?
          Tired of spam? Yahoo! Mail has the best spam protection around
          http://mail.yahoo.com

          [Non-text portions of this message have been removed]
        • r sonstegard
          Hello. My daughter, Alexandrianna, was diagnosed with Angelman syndrome when she was 2. She was originally thought to have Pradeur-Willi syndrome. She will be
          Message 4 of 20 , Jan 29, 2005
          • 0 Attachment
            Hello. My daughter, Alexandrianna, was diagnosed with Angelman syndrome when she was 2. She was originally thought to have Pradeur-Willi syndrome. She will be 4 on April 22. She is the youngest of 8 children--3 mine, 2 his, and then 3 ours. We live in Iowa. This isn't a very active group but wanted to say hello and welcome anyway.

            Becky

            micy1974 <micy1974@...> wrote:

            Hello, I am a new at this. but thought I would give it a shot. I am
            a mother 2 yes 2 Angels. I have twins who will be 8 in Mar. They both
            have Angelman syndrome. I found out about 3 yrs ago.. at the age of 2
            or so, they told me they had CP. They really are pretty good kids.
            They have so much love in their hearts. Always Smiling you know.
            Always willing to give you the BIGGEST hugs. I never joined a group
            because when I found out there was little info to be found about AS.
            So, now I guess I want to talk to others with Little Angels as well.
            Thanks
            Michelle, Indiana





            ---------------------------------
            Yahoo! Groups Links

            To visit your group on the web, go to:
            http://groups.yahoo.com/group/familiesofangelmansyndrome/

            To unsubscribe from this group, send an email to:
            familiesofangelmansyndrome-unsubscribe@yahoogroups.com

            Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.





            test'; ">
            __________________________________________________
            Do You Yahoo!?
            Tired of spam? Yahoo! Mail has the best spam protection around
            http://mail.yahoo.com

            [Non-text portions of this message have been removed]
          • kishap317
            Hi my name is Rakisha I live in Indianapolis. I have a 2 year old son with AS. Knowing this has been very hard for my husband and I this is our first child and
            Message 5 of 20 , Feb 18, 2005
            • 0 Attachment
              Hi my name is Rakisha I live in Indianapolis. I have a 2 year old
              son with AS. Knowing this has been very hard for my husband and I
              this is our first child and we are both very young ourselves. We are
              just looking for someone to talk to. Our son (Duane) has recently
              been put on depakote for his seizures. With this medication he has
              had more but very short seizures. He is also on Clonidine for
              sleeping. We have not heard of any families with AS where we live.
              Hopefully there is someone around us who knows how we feel.

              Thanks,

              Rakisha
            • tammy_olson2003
              Hi - This is my first chance to talk about all that has happend. This may get REAL LONG sorry and thank you for taking the time to read. I am Tammy. My angel
              Message 6 of 20 , Sep 30, 2005
              • 0 Attachment
                Hi -
                This is my first chance to talk about all that has happend. This may
                get REAL LONG sorry and thank you for taking the time to read.
                I am Tammy. My angel is my niece that my husband and I have custody
                of. She will be 4 on the 6th of October. We have had real good Dr.s
                and therapists. We go to therapy 2 - 4 days a week. Good insurance!!
                She was diagnosed in June of 02. I knew when I held her in the
                hospital that somthing was not right with her. She was not soft to
                hold like other childred are. She was wringing her hands all the
                time and her eyes would go off and she would leave mentally. She was
                hospitalized twice before she was 3 months old. Her mom (my sister)
                told the Dr that she would not eat and kept vomitting it back up so
                she quit feeding her.She had been given goats milk and it was not
                suggested by the dr. Reason #1 that we have her. While in the
                hospital she gained weight and ate normal formula. She even was
                alert more but would not bond with her mom. I was working at the
                time so I took time off to take care of her in the hospital. Yes her
                mom and dad were also there but did not even attempt to care for
                her. They chose to sleep or play vidoe games while others took care
                of her. Reason #2. So to shorten this up a bit she is a beautiful
                little girl. She has the blonde hair and the blue eyes. She looks
                like the typical AS child and has all the energy of one. She started
                walking on the 31st of Dec last year. The same week she finally got
                her walker. She no longer will even use it which is good. She will
                say a few words and use them correctly. She is working with the PECS
                system, sign language as well as augmentative. Yes she is a very
                bright and busy girl. I left my job when we got custody of her since
                we were committed to her. Our goals were to bring her to the highest
                functioning AS we could. Her genetisist has told us not to bring her
                back in for 2 years. She could not believe how well she was doing.
                This dr said that she was a very high functioning AS child. We were
                sooo proud of her. She is the happiest and the most giving kid. I
                really enjoy her. She still sees her parents once a week and they
                are divorced so this is stressful for her but we do the brushings ,
                the weighted blankets , the music , the rotation with her so she
                calms down when she sees me. She enjoys most of her therapys. I have
                looked forward to them as well since she will do something new at
                least once a week for us. She has found a little friend in one of
                her sessions and we all look forward to watching her actually play
                with him. We are laughing and smiling soo much that our sides
                andfaces hurt when we leave. OH her name is Britt. Yes she has
                seizures as well. She is currently taking topomax. This has been the
                only one that she has been on and is working well for her. Thank you
                for the time with this and hope to get back on with questions that I
                have.

                Tammy - Britt's Auntie Momma
              • lborraccio
                Good Morning, My name is Lori Morris, my family and I live in Troy, MI. Rachel is 3- years-old, she does not crawl, stand alone, walk or talk. She is still
                Message 7 of 20 , Oct 10, 2006
                • 0 Attachment
                  Good Morning,

                  My name is Lori Morris, my family and I live in Troy, MI. Rachel is 3-
                  years-old, she does not crawl, stand alone, walk or talk. She is still
                  spoon fed, drinks from a bottle, wears diapers and sleeps in a crib.
                  She suffers from brain seizures. We've done genetic testing which shows
                  there is no medical explanation for her developmental problems. She
                  attends school year round now at a special needs school, Bovenschen in
                  Warren, MI.

                  Dr. Harry Chugani, her neurologist, would bet his career that Rachel is
                  an Angleman child. However, the genetic testing is negative for AS. We
                  feel we need to find some support group to help deal with her
                  situation. Since he is so strongly focused on AS, we thought we would
                  head that direction.
                • Rob and Nadia Vankosky
                  Hi there, Our son Mason is 2 1/2 and is deletion positive. Do you have access to an early intervention program of any sort? Occupational therapy? Physical
                  Message 8 of 20 , Oct 11, 2006
                  • 0 Attachment
                    Hi there,

                    Our son Mason is 2 1/2 and is deletion positive. Do you have access to an
                    early intervention program of any sort? Occupational therapy? Physical
                    therapy? Speech language? A support system of any kind will be your biggest
                    help. As soon as we got these services in place, Mason took off. We live
                    in Lloydminster, Alberta, Canada, so our services might be different than
                    yours. Mason has been having seizures for about the past 5 months and is
                    finally starting to get them under control. Before his seizures started he
                    was crawling, pulling himself up, sitting, and crawling up stairs. After his
                    seizures started he slid back almost a year, to the point where he was just
                    laying there. We're starting to clear out of the fog and he's back to
                    sitting and crawling. One step at a time.

                    Secondly, how do you feel about your daughter's potential diagnosis?

                    Nadia
                    >From: "lborraccio" <lp33@...>
                    >Reply-To: familiesofangelmansyndrome@yahoogroups.com
                    >To: familiesofangelmansyndrome@yahoogroups.com
                    >Subject: [Families of Angelman Syndrome] New Member
                    >Date: Tue, 10 Oct 2006 13:05:22 -0000
                    >
                    >Good Morning,
                    >
                    >My name is Lori Morris, my family and I live in Troy, MI. Rachel is 3-
                    >years-old, she does not crawl, stand alone, walk or talk. She is still
                    >spoon fed, drinks from a bottle, wears diapers and sleeps in a crib.
                    >She suffers from brain seizures. We've done genetic testing which shows
                    >there is no medical explanation for her developmental problems. She
                    >attends school year round now at a special needs school, Bovenschen in
                    >Warren, MI.
                    >
                    >Dr. Harry Chugani, her neurologist, would bet his career that Rachel is
                    >an Angleman child. However, the genetic testing is negative for AS. We
                    >feel we need to find some support group to help deal with her
                    >situation. Since he is so strongly focused on AS, we thought we would
                    >head that direction.
                    >
                    >
                    >
                    >
                    >

                    _________________________________________________________________
                    Ready for the world's first international mobile film festival celebrating
                    the creative potential of today's youth? Check out Mobile Jam Fest for your
                    a chance to WIN $10,000! www.mobilejamfest.com
                  • Lori Morris
                    Yes, we have been doing therapy for 2 years. Rachel started the school system s program this past June. We still have a PT that comes to our home twice a week.
                    Message 9 of 20 , Oct 12, 2006
                    • 0 Attachment
                      Yes, we have been doing therapy for 2 years. Rachel started the school
                      system's program this past June. We still have a PT that comes to our home
                      twice a week. She has improved, but slightly in 2 years. We give her seizure
                      meds as well. The diagnosis is confusing since her blood work shows no signs
                      of AS. However, our neurologist has be diagnosing AS for years and said not
                      all kids show up in blood tests. We pray allot!! Are current support group
                      is our friends and family. But I decided to start expanding that to families
                      dealing with AS. It's the closest thing we have to go by as a guideline.
                      Thanks..Lori



                      _____

                      From: familiesofangelmansyndrome@yahoogroups.com
                      [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Rob and
                      Nadia Vankosky
                      Sent: Thursday, October 12, 2006 12:18 AM
                      To: familiesofangelmansyndrome@yahoogroups.com; cstults@...
                      Subject: RE: [Families of Angelman Syndrome] New Member



                      Hi there,

                      Our son Mason is 2 1/2 and is deletion positive. Do you have access to an
                      early intervention program of any sort? Occupational therapy? Physical
                      therapy? Speech language? A support system of any kind will be your biggest
                      help. As soon as we got these services in place, Mason took off. We live
                      in Lloydminster, Alberta, Canada, so our services might be different than
                      yours. Mason has been having seizures for about the past 5 months and is
                      finally starting to get them under control. Before his seizures started he
                      was crawling, pulling himself up, sitting, and crawling up stairs. After his

                      seizures started he slid back almost a year, to the point where he was just
                      laying there. We're starting to clear out of the fog and he's back to
                      sitting and crawling. One step at a time.

                      Secondly, how do you feel about your daughter's potential diagnosis?

                      Nadia
                      >From: "lborraccio" <lp33@wowway. <mailto:lp33%40wowway.com> com>
                      >Reply-To: familiesofangelmans
                      <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                      yndrome@yahoogroups.com
                      >To: familiesofangelmans
                      <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                      yndrome@yahoogroups.com
                      >Subject: [Families of Angelman Syndrome] New Member
                      >Date: Tue, 10 Oct 2006 13:05:22 -0000
                      >
                      >Good Morning,
                      >
                      >My name is Lori Morris, my family and I live in Troy, MI. Rachel is 3-
                      >years-old, she does not crawl, stand alone, walk or talk. She is still
                      >spoon fed, drinks from a bottle, wears diapers and sleeps in a crib.
                      >She suffers from brain seizures. We've done genetic testing which shows
                      >there is no medical explanation for her developmental problems. She
                      >attends school year round now at a special needs school, Bovenschen in
                      >Warren, MI.
                      >
                      >Dr. Harry Chugani, her neurologist, would bet his career that Rachel is
                      >an Angleman child. However, the genetic testing is negative for AS. We
                      >feel we need to find some support group to help deal with her
                      >situation. Since he is so strongly focused on AS, we thought we would
                      >head that direction.
                      >
                      >
                      >
                      >
                      >

                      __________________________________________________________
                      Ready for the world's first international mobile film festival celebrating
                      the creative potential of today's youth? Check out Mobile Jam Fest for your
                      a chance to WIN $10,000! www.mobilejamfest.com





                      [Non-text portions of this message have been removed]
                    • Mother Saguaro
                      Hi Lori, My son tested negative for AS four years ago. He had the test that tests for a deletion of chromosome 15. Well he has two 15s so that test came back
                      Message 10 of 20 , Oct 12, 2006
                      • 0 Attachment
                        Hi Lori,

                        My son tested negative for AS four years ago. He had the test that tests for a deletion of chromosome 15. Well he has two 15s so that test came back negative. This summer he had another test that looks for the other genetic abnormalities that cause AS. Both of his 15s are from his father which means he has AS. Has you daughter had all of the tests availible? I believe the test that Ian had was a methylation test.

                        Just thought I would toss that in there. Welcome!

                        Amy
                        ----- Original Message -----
                        From: Lori Morris
                        To: familiesofangelmansyndrome@yahoogroups.com
                        Sent: Thursday, October 12, 2006 6:02 AM
                        Subject: RE: [Families of Angelman Syndrome] New Member


                        Yes, we have been doing therapy for 2 years. Rachel started the school
                        system's program this past June. We still have a PT that comes to our home
                        twice a week. She has improved, but slightly in 2 years. We give her seizure
                        meds as well. The diagnosis is confusing since her blood work shows no signs
                        of AS. However, our neurologist has be diagnosing AS for years and said not
                        all kids show up in blood tests. We pray allot!! Are current support group
                        is our friends and family. But I decided to start expanding that to families
                        dealing with AS. It's the closest thing we have to go by as a guideline.
                        Thanks..Lori

                        _____

                        From: familiesofangelmansyndrome@yahoogroups.com
                        [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Rob and
                        Nadia Vankosky
                        Sent: Thursday, October 12, 2006 12:18 AM
                        To: familiesofangelmansyndrome@yahoogroups.com; cstults@...
                        Subject: RE: [Families of Angelman Syndrome] New Member

                        Hi there,

                        Our son Mason is 2 1/2 and is deletion positive. Do you have access to an
                        early intervention program of any sort? Occupational therapy? Physical
                        therapy? Speech language? A support system of any kind will be your biggest
                        help. As soon as we got these services in place, Mason took off. We live
                        in Lloydminster, Alberta, Canada, so our services might be different than
                        yours. Mason has been having seizures for about the past 5 months and is
                        finally starting to get them under control. Before his seizures started he
                        was crawling, pulling himself up, sitting, and crawling up stairs. After his

                        seizures started he slid back almost a year, to the point where he was just
                        laying there. We're starting to clear out of the fog and he's back to
                        sitting and crawling. One step at a time.

                        Secondly, how do you feel about your daughter's potential diagnosis?

                        Nadia
                        >From: "lborraccio" <lp33@wowway. <mailto:lp33%40wowway.com> com>
                        >Reply-To: familiesofangelmans
                        <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                        yndrome@yahoogroups.com
                        >To: familiesofangelmans
                        <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                        yndrome@yahoogroups.com
                        >Subject: [Families of Angelman Syndrome] New Member
                        >Date: Tue, 10 Oct 2006 13:05:22 -0000
                        >
                        >Good Morning,
                        >
                        >My name is Lori Morris, my family and I live in Troy, MI. Rachel is 3-
                        >years-old, she does not crawl, stand alone, walk or talk. She is still
                        >spoon fed, drinks from a bottle, wears diapers and sleeps in a crib.
                        >She suffers from brain seizures. We've done genetic testing which shows
                        >there is no medical explanation for her developmental problems. She
                        >attends school year round now at a special needs school, Bovenschen in
                        >Warren, MI.
                        >
                        >Dr. Harry Chugani, her neurologist, would bet his career that Rachel is
                        >an Angleman child. However, the genetic testing is negative for AS. We
                        >feel we need to find some support group to help deal with her
                        >situation. Since he is so strongly focused on AS, we thought we would
                        >head that direction.
                        >
                        >
                        >
                        >
                        >

                        __________________________________________________________
                        Ready for the world's first international mobile film festival celebrating
                        the creative potential of today's youth? Check out Mobile Jam Fest for your
                        a chance to WIN $10,000! www.mobilejamfest.com

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





                        [Non-text portions of this message have been removed]
                      • Robbie Montgomery
                        Hi, The same thing happened to us with Sawyer. She had two blood tests that came back negative but then we saw a geneticist and they found she had two 15s from
                        Message 11 of 20 , Oct 12, 2006
                        • 0 Attachment
                          Hi,

                          The same thing happened to us with Sawyer. She had two blood tests that
                          came back negative but then we saw a geneticist and they found she had two
                          15s from her daddy. ( She has always liked him a lot and we know why now)
                          They took blood from both Roy and I to determine this. I
                          hope it helps. I believe the condition is called Uniparental Disomy. From
                          what I understand there are 4 different ways for Angleman Syndrome to
                          manifest. So, there may be a test that they haven't done yet.

                          It has helped me greatly to listen/read about other families with AS too.
                          Right now I am fighting about PT at her school. PT co-treats with APE for
                          20 minutes on C days. This means she gets physical therapy in a group once
                          or twice a week depending on the special rotation schedule. I am
                          frustrated because she has only had PT twice in two months from the
                          school. Sawyer isn't able to attend all day yet because she just gets sooo
                          exhausted and still requires a 2 -3 hour nap. This summer we got PT
                          through the hospital and I have kept it going because she hasn't gotten
                          what she needs at school yet. I hate compromising when it comes to her
                          services. I feel like I am not doing for her what she needs/deserves.

                          Take care,

                          Robbie, mom to Sawyer, female age 5 Uniparental Disomy
                        • Lori Morris
                          We are blessed, the school district we are in is amazing for special needs children. She gets 2-one-on-one sessions a week at the school and then we have
                          Message 12 of 20 , Oct 13, 2006
                          • 0 Attachment
                            We are blessed, the school district we are in is amazing for special needs
                            children. She gets 2-one-on-one sessions a week at the school and then we
                            have Children's Special Health Care through Medicaid, that covers the home
                            visits for Rachel's PT. that lady is amazing.



                            We will try the genetic tests again next year when she is 4-year-old.



                            Thanks



                            Lori



                            _____

                            From: familiesofangelmansyndrome@yahoogroups.com
                            [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Robbie
                            Montgomery
                            Sent: Thursday, October 12, 2006 1:47 PM
                            To: familiesofangelmansyndrome@yahoogroups.com
                            Cc: familiesofangelmansyndrome@yahoogroups.com
                            Subject: Re: [Families of Angelman Syndrome] New Member



                            Hi,

                            The same thing happened to us with Sawyer. She had two blood tests that
                            came back negative but then we saw a geneticist and they found she had two
                            15s from her daddy. ( She has always liked him a lot and we know why now)
                            They took blood from both Roy and I to determine this. I
                            hope it helps. I believe the condition is called Uniparental Disomy. From
                            what I understand there are 4 different ways for Angleman Syndrome to
                            manifest. So, there may be a test that they haven't done yet.

                            It has helped me greatly to listen/read about other families with AS too.
                            Right now I am fighting about PT at her school. PT co-treats with APE for
                            20 minutes on C days. This means she gets physical therapy in a group once
                            or twice a week depending on the special rotation schedule. I am
                            frustrated because she has only had PT twice in two months from the
                            school. Sawyer isn't able to attend all day yet because she just gets sooo
                            exhausted and still requires a 2 -3 hour nap. This summer we got PT
                            through the hospital and I have kept it going because she hasn't gotten
                            what she needs at school yet. I hate compromising when it comes to her
                            services. I feel like I am not doing for her what she needs/deserves.

                            Take care,

                            Robbie, mom to Sawyer, female age 5 Uniparental Disomy





                            [Non-text portions of this message have been removed]
                          • Lori Morris
                            So, far the basic blood work. Which came back negative, the genetic doctor wants to wait until she is 4 to try again. That s next year. Our neurologist is
                            Message 13 of 20 , Oct 13, 2006
                            • 0 Attachment
                              So, far the basic blood work. Which came back negative, the genetic doctor
                              wants to wait until she is 4 to try again. That's next year.

                              Our neurologist is certain. He has been dealing with AS a good portion of
                              his career.

                              Thanks,

                              lori



                              _____

                              From: familiesofangelmansyndrome@yahoogroups.com
                              [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Mother
                              Saguaro
                              Sent: Thursday, October 12, 2006 12:20 PM
                              To: familiesofangelmansyndrome@yahoogroups.com
                              Subject: Re: [Families of Angelman Syndrome] New Member



                              Hi Lori,

                              My son tested negative for AS four years ago. He had the test that tests for
                              a deletion of chromosome 15. Well he has two 15s so that test came back
                              negative. This summer he had another test that looks for the other genetic
                              abnormalities that cause AS. Both of his 15s are from his father which means
                              he has AS. Has you daughter had all of the tests availible? I believe the
                              test that Ian had was a methylation test.

                              Just thought I would toss that in there. Welcome!

                              Amy
                              ----- Original Message -----
                              From: Lori Morris
                              To: familiesofangelmans
                              <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                              yndrome@yahoogroups.com
                              Sent: Thursday, October 12, 2006 6:02 AM
                              Subject: RE: [Families of Angelman Syndrome] New Member

                              Yes, we have been doing therapy for 2 years. Rachel started the school
                              system's program this past June. We still have a PT that comes to our home
                              twice a week. She has improved, but slightly in 2 years. We give her seizure
                              meds as well. The diagnosis is confusing since her blood work shows no signs
                              of AS. However, our neurologist has be diagnosing AS for years and said not
                              all kids show up in blood tests. We pray allot!! Are current support group
                              is our friends and family. But I decided to start expanding that to families
                              dealing with AS. It's the closest thing we have to go by as a guideline.
                              Thanks..Lori

                              _____

                              From: familiesofangelmans
                              <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                              yndrome@yahoogroups.com
                              [mailto:familiesofangelmans
                              <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                              yndrome@yahoogroups.com] On Behalf Of Rob and
                              Nadia Vankosky
                              Sent: Thursday, October 12, 2006 12:18 AM
                              To: familiesofangelmans
                              <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                              yndrome@yahoogroups.com; cstults@ralcomm. <mailto:cstults%40ralcomm.net> net
                              Subject: RE: [Families of Angelman Syndrome] New Member

                              Hi there,

                              Our son Mason is 2 1/2 and is deletion positive. Do you have access to an
                              early intervention program of any sort? Occupational therapy? Physical
                              therapy? Speech language? A support system of any kind will be your biggest
                              help. As soon as we got these services in place, Mason took off. We live
                              in Lloydminster, Alberta, Canada, so our services might be different than
                              yours. Mason has been having seizures for about the past 5 months and is
                              finally starting to get them under control. Before his seizures started he
                              was crawling, pulling himself up, sitting, and crawling up stairs. After his

                              seizures started he slid back almost a year, to the point where he was just
                              laying there. We're starting to clear out of the fog and he's back to
                              sitting and crawling. One step at a time.

                              Secondly, how do you feel about your daughter's potential diagnosis?

                              Nadia
                              >From: "lborraccio" <lp33@wowway. <mailto:lp33%40wowway.com> com>
                              >Reply-To: familiesofangelmans
                              <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                              yndrome@yahoogroups <mailto:yndrome%40yahoogroups.com> .com
                              >To: familiesofangelmans
                              <mailto:familiesofangelmansyndrome%40yahoogroups.com>
                              yndrome@yahoogroups <mailto:yndrome%40yahoogroups.com> .com
                              >Subject: [Families of Angelman Syndrome] New Member
                              >Date: Tue, 10 Oct 2006 13:05:22 -0000
                              >
                              >Good Morning,
                              >
                              >My name is Lori Morris, my family and I live in Troy, MI. Rachel is 3-
                              >years-old, she does not crawl, stand alone, walk or talk. She is still
                              >spoon fed, drinks from a bottle, wears diapers and sleeps in a crib.
                              >She suffers from brain seizures. We've done genetic testing which shows
                              >there is no medical explanation for her developmental problems. She
                              >attends school year round now at a special needs school, Bovenschen in
                              >Warren, MI.
                              >
                              >Dr. Harry Chugani, her neurologist, would bet his career that Rachel is
                              >an Angleman child. However, the genetic testing is negative for AS. We
                              >feel we need to find some support group to help deal with her
                              >situation. Since he is so strongly focused on AS, we thought we would
                              >head that direction.
                              >
                              >
                              >
                              >
                              >

                              __________________________________________________________
                              Ready for the world's first international mobile film festival celebrating
                              the creative potential of today's youth? Check out Mobile Jam Fest for your
                              a chance to WIN $10,000! www.mobilejamfest.com

                              [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]
                            • heather
                              Just wondering if any of you could offer advice. I believe my 15 month old neice may have Angelman Syndrome. We initially thought she may have Rett s
                              Message 14 of 20 , Oct 29, 2006
                              • 0 Attachment
                                Just wondering if any of you could offer advice. I believe my 15
                                month old neice may have Angelman Syndrome. We initially thought she
                                may have Rett's syndrome but doctors believe it could be Angelmans.
                                She has not yet been tested for either. She has been developmentally
                                behind since about 6 months. She is sitting up (since 10 mo) and even
                                pulling up now. She is not yet speaking, or really making any sounds
                                at all. Every once in a while she will make some sounds but not
                                often, mainly just laughter if she does make noise. She has not had
                                any seizure activity... but when she wakes sometimes she has spells of
                                shaking. She also has had episodes of gasping for air. She has very
                                light hair, skin and eyes. She laughs and bounces all the time. Is
                                very affectionate. She is very shaky when she is trying to accomplish
                                a task. other symptoms include... strong fascination w/ water,
                                unparallel eyes, very small can't seem to gain weight, eats all the
                                time, reflux problems, microcephaly, feeding difficulties, protruding
                                tongue much of the time, little sleep required. Please let me know if
                                this sounds similar to your experience. Thank You!!
                              • Wells Nicole
                                That all sounds like my Brandon. He did not sit up as early as that or try to pull up but all of the other stuff sounds like him. If they have not already
                                Message 15 of 20 , Oct 30, 2006
                                • 0 Attachment
                                  That all sounds like my Brandon. He did not sit up as early as that or try to pull up but all of the other stuff sounds like him. If they have not already they may want to have an EEG done. Brandon would shake when he woke up and gasp for air when he was sleeping and we did not think it was anything but then at the age of 3 the bus driver saw him do it and told me that was a seizure. We took him to the doctor and they confirmed it was in fact a seizure. We felt terrible that this had been going on for months but we had NO knowledge of seizures.

                                  Hope everything works out for you.

                                  Nicole mother of Brandon age 5

                                  heather <heatherseabourn@...> wrote: Just wondering if any of you could offer advice. I believe my 15
                                  month old neice may have Angelman Syndrome. We initially thought she
                                  may have Rett's syndrome but doctors believe it could be Angelmans.
                                  She has not yet been tested for either. She has been developmentally
                                  behind since about 6 months. She is sitting up (since 10 mo) and even
                                  pulling up now. She is not yet speaking, or really making any sounds
                                  at all. Every once in a while she will make some sounds but not
                                  often, mainly just laughter if she does make noise. She has not had
                                  any seizure activity... but when she wakes sometimes she has spells of
                                  shaking. She also has had episodes of gasping for air. She has very
                                  light hair, skin and eyes. She laughs and bounces all the time. Is
                                  very affectionate. She is very shaky when she is trying to accomplish
                                  a task. other symptoms include... strong fascination w/ water,
                                  unparallel eyes, very small can't seem to gain weight, eats all the
                                  time, reflux problems, microcephaly, feeding difficulties, protruding
                                  tongue much of the time, little sleep required. Please let me know if
                                  this sounds similar to your experience. Thank You!!






                                  ---------------------------------
                                  Get your email and see which of your friends are online - Right on the new Yahoo.com

                                  [Non-text portions of this message have been removed]
                                • charlotte987794
                                  Hello everyone, I am a mum to Jude 6 years old and isabelle 2 and a half who was diagnosed during the middle of last year. Up to now i have been coping well
                                  Message 16 of 20 , Feb 5, 2007
                                  • 0 Attachment
                                    Hello everyone,
                                    I am a mum to Jude 6 years old and isabelle 2 and a half who was
                                    diagnosed during the middle of last year. Up to now i have been coping
                                    well dealing with ups and downs of an angel child, but lately i am
                                    feeling really emotional and thought it would be good to chat to other
                                    parents who understand.
                                  • Teri Fronk
                                    Hi, I know how hard it can be to deal with the emotions of being mom to an Angel child. I hope we can help you with what you need! Teri Fronk ... From:
                                    Message 17 of 20 , Feb 5, 2007
                                    • 0 Attachment
                                      Hi,

                                      I know how hard it can be to deal with the emotions of being mom to an Angel child. I hope we can help you with what you need!

                                      Teri Fronk

                                      ----- Original Message ----
                                      From: charlotte987794 <charlottelambert@...>
                                      To: familiesofangelmansyndrome@yahoogroups.com
                                      Sent: Monday, February 5, 2007 3:29:52 PM
                                      Subject: [Families of Angelman Syndrome] New Member













                                      Hello everyone,

                                      I am a mum to Jude 6 years old and isabelle 2 and a half who was

                                      diagnosed during the middle of last year. Up to now i have been coping

                                      well dealing with ups and downs of an angel child, but lately i am

                                      feeling really emotional and thought it would be good to chat to other

                                      parents who understand.














                                      <!--

                                      #ygrp-mlmsg {font-size:13px;font-family:arial,helvetica,clean,sans-serif;}
                                      #ygrp-mlmsg table {font-size:inherit;font:100%;}
                                      #ygrp-mlmsg select, input, textarea {font:99% arial,helvetica,clean,sans-serif;}
                                      #ygrp-mlmsg pre, code {font:115% monospace;}
                                      #ygrp-mlmsg * {line-height:1.22em;}
                                      #ygrp-text{
                                      font-family:Georgia;
                                      }
                                      #ygrp-text p{
                                      margin:0 0 1em 0;
                                      }
                                      #ygrp-tpmsgs{
                                      font-family:Arial;
                                      clear:both;
                                      }
                                      #ygrp-vitnav{
                                      padding-top:10px;
                                      font-family:Verdana;
                                      font-size:77%;
                                      margin:0;
                                      }
                                      #ygrp-vitnav a{
                                      padding:0 1px;
                                      }
                                      #ygrp-actbar{
                                      clear:both;
                                      margin:25px 0;
                                      white-space:nowrap;
                                      color:#666;
                                      text-align:right;
                                      }
                                      #ygrp-actbar .left{
                                      float:left;
                                      white-space:nowrap;
                                      }
                                      .bld{font-weight:bold;}
                                      #ygrp-grft{
                                      font-family:Verdana;
                                      font-size:77%;
                                      padding:15px 0;
                                      }
                                      #ygrp-ft{
                                      font-family:verdana;
                                      font-size:77%;
                                      border-top:1px solid #666;
                                      padding:5px 0;
                                      }
                                      #ygrp-mlmsg #logo{
                                      padding-bottom:10px;
                                      }

                                      #ygrp-vital{
                                      background-color:#e0ecee;
                                      margin-bottom:20px;
                                      padding:2px 0 8px 8px;
                                      }
                                      #ygrp-vital #vithd{
                                      font-size:77%;
                                      font-family:Verdana;
                                      font-weight:bold;
                                      color:#333;
                                      text-transform:uppercase;
                                      }
                                      #ygrp-vital ul{
                                      padding:0;
                                      margin:2px 0;
                                      }
                                      #ygrp-vital ul li{
                                      list-style-type:none;
                                      clear:both;
                                      border:1px solid #e0ecee;
                                      }
                                      #ygrp-vital ul li .ct{
                                      font-weight:bold;
                                      color:#ff7900;
                                      float:right;
                                      width:2em;
                                      text-align:right;
                                      padding-right:.5em;
                                      }
                                      #ygrp-vital ul li .cat{
                                      font-weight:bold;
                                      }
                                      #ygrp-vital a {
                                      text-decoration:none;
                                      }

                                      #ygrp-vital a:hover{
                                      text-decoration:underline;
                                      }

                                      #ygrp-sponsor #hd{
                                      color:#999;
                                      font-size:77%;
                                      }
                                      #ygrp-sponsor #ov{
                                      padding:6px 13px;
                                      background-color:#e0ecee;
                                      margin-bottom:20px;
                                      }
                                      #ygrp-sponsor #ov ul{
                                      padding:0 0 0 8px;
                                      margin:0;
                                      }
                                      #ygrp-sponsor #ov li{
                                      list-style-type:square;
                                      padding:6px 0;
                                      font-size:77%;
                                      }
                                      #ygrp-sponsor #ov li a{
                                      text-decoration:none;
                                      font-size:130%;
                                      }
                                      #ygrp-sponsor #nc {
                                      background-color:#eee;
                                      margin-bottom:20px;
                                      padding:0 8px;
                                      }
                                      #ygrp-sponsor .ad{
                                      padding:8px 0;
                                      }
                                      #ygrp-sponsor .ad #hd1{
                                      font-family:Arial;
                                      font-weight:bold;
                                      color:#628c2a;
                                      font-size:100%;
                                      line-height:122%;
                                      }
                                      #ygrp-sponsor .ad a{
                                      text-decoration:none;
                                      }
                                      #ygrp-sponsor .ad a:hover{
                                      text-decoration:underline;
                                      }
                                      #ygrp-sponsor .ad p{
                                      margin:0;
                                      }
                                      o {font-size:0;}
                                      .MsoNormal {
                                      margin:0 0 0 0;
                                      }
                                      #ygrp-text tt{
                                      font-size:120%;
                                      }
                                      blockquote{margin:0 0 0 4px;}
                                      .replbq {margin:4;}
                                      -->









                                      ____________________________________________________________________________________
                                      Never miss an email again!
                                      Yahoo! Toolbar alerts you the instant new Mail arrives.
                                      http://tools.search.yahoo.com/toolbar/features/mail/

                                      [Non-text portions of this message have been removed]
                                    • SUSAN WINFREY
                                      Hello Charlotte, We ve all been where you are and it really does help to talk to someone about it. My son turned 2 in December and would be glad to help you.
                                      Message 18 of 20 , Feb 5, 2007
                                      • 0 Attachment
                                        Hello Charlotte,
                                        We've all been where you are and it really does help to talk to someone about it. My son turned 2 in December and would be glad to help you. I have good and bad days myself, if there are any specifics I can help with let me know. Hang in there. Susan

                                        charlotte987794 <charlottelambert@...> wrote:
                                        Hello everyone,
                                        I am a mum to Jude 6 years old and isabelle 2 and a half who was
                                        diagnosed during the middle of last year. Up to now i have been coping
                                        well dealing with ups and downs of an angel child, but lately i am
                                        feeling really emotional and thought it would be good to chat to other
                                        parents who understand.






                                        [Non-text portions of this message have been removed]
                                      • momanddad28
                                        ... coping ... other ... Welcome, My name is Jean and our angel is Robert, 18 years old this month. One thing you can count on here is support. Our family has
                                        Message 19 of 20 , Feb 5, 2007
                                        • 0 Attachment
                                          --- In familiesofangelmansyndrome@yahoogroups.com, "charlotte987794"
                                          <charlottelambert@...> wrote:
                                          >
                                          > Hello everyone,
                                          > I am a mum to Jude 6 years old and isabelle 2 and a half who was
                                          > diagnosed during the middle of last year. Up to now i have been
                                          coping
                                          > well dealing with ups and downs of an angel child, but lately i am
                                          > feeling really emotional and thought it would be good to chat to
                                          other
                                          > parents who understand.
                                          >
                                          Welcome,
                                          My name is Jean and our angel is Robert, 18 years old this month. One
                                          thing you can count on here is support. Our family has had every
                                          emotion that can possibly go along with having an angel. We are in a
                                          good place right now, but can certainly remember times when it is so
                                          overwhelming you can't believe that anyone else could possibly
                                          understand, be assured, you are not alone! Emotion is actually a good
                                          thing, because when I am feeling really down, and don't think I can do
                                          this another minute, Robert smiles (you know the smile) and all is
                                          right with the world again.God Bless and keep the faith!
                                          Jean
                                        • airheads6@aol.com
                                          Welcome Jude! huggggggggs, you will find great support and information here! Its normal to have ups and downs I believe, it can at times be so overwhelming. My
                                          Message 20 of 20 , Feb 6, 2007
                                          • 0 Attachment
                                            Welcome Jude! huggggggggs, you will find great support and information here!
                                            Its normal to have ups and downs I believe, it can at times be so
                                            overwhelming. My four yr old son was diagnosed last June, so it has not been a year for us
                                            either, and I have my times, believe me! I tend to worry alot as it is and
                                            now , more then ever. What I did notice though on the postive side, that no
                                            matter what mood I am in, I can always count on my angel for that irresitable
                                            smile and laugh and never ending hugs, and for that moment at least, I can deal
                                            with anything :)
                                            Please feel free to email anytime !! airheads6@..., Sandi


                                            [Non-text portions of this message have been removed]
                                          Your message has been successfully submitted and would be delivered to recipients shortly.