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Re: [Families of Angelman Syndrome] monica carpio

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  • bobbie toole
    Monica Sorry it has taken so long to get back with you. I had all 5 grandkids over the weekend, so wasn t able to get to the computer, ages boy age 9, idential
    Message 1 of 10 , Feb 13, 2006
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      Monica

      Sorry it has taken so long to get back with you. I had all 5 grandkids over the weekend, so wasn't able to get to the computer, ages boy age 9, idential twin 5yr old girls and the 2 angles. Lots of work but love them all.

      It almost sounds like the lorezapm is at too high of a dose for Crystal. We have 10mg of valium that we can give either of the boys after they have their first seizure to help them to not have clusters of seizures. I think after we got it was when Kye started really slowing down on his seizures. Jase has, I think the type of seizures that Crystal has, and the valium has helped him alot. And we only use it at the first on set of seizures. The boys will usually sleep a couple of hours but never 2 days. I would check into getting off the lorezapm and getting something less harsh.

      As for my son he is doing good with the boys. He still hasn't found the new love of his life, but I also think he is too afraid of getting hurt again. Time will tell, I guess. I think he needs elected to Father of the year, as much as he has on his plate and still all the time he gives to the boys and how he plays with them. He even took time yesterday to take the boys to see his ex-wife's parents since it had been awhile since they had gotten to see their grandkids. Their Mom hasn't seen them in about a month now.

      I sure hope you can get Crystal's meds straightened out and can get the seizures under control or at least slowed down.

      Take care,
      Bobbie
      monica carpio <MONICACARPIO_3@...> wrote:
      Hi Bobbie,

      It's nice talking to you again,I hope all is going well, How is you son
      doing ,Boy I think he is a Angel himself being ale to handle the situation
      as good as he does,and not to mention yourself you are a great mother and
      grandmother for all the help you provide. It makes me ashamed for loosing
      my patience once in a while. You know I had never heard of Carbatrol Or
      Depakote Thanks so much am going to ask my Angel's genec.Dr about it maybe
      it would help Crystal some she on topamax,valproic acid and lorezapm you
      know she has what I call annoying seizures, Maycronic or something like
      that. She is just constintly jerking and the poor thing can't even sleep and
      when I give her the lorezapam she goes to sleep for about two days it was a
      concern till about three weeks ago when she got a G-tube placed, because she
      would just sleep and would not wake up to eat but now I just have to hook
      her up and I know she is getting all she needs It sucks but I have no other
      choice.

      Thanks for listening God Bless

      Monica


      >From: bobbie toole
      >Reply-To: familiesofangelmansyndrome@yahoogroups.com
      >To: familiesofangelmansyndrome@yahoogroups.com
      >Subject: Re: [Families of Angelman Syndrome] Ritalin LA/monica carpio
      >Date: Thu, 9 Feb 2006 10:50:10 -0800 (PST)
      >
      >Monica,
      > Both of my grandsons are angels and both have seizures.
      > Kye,age 3yrs, started having grand ma seizures at the age of 8
      >months-at the time he was having upwards of 100 a day. He is on Carbatrol
      >200mg x 2, Depakote 125mg 2xam-3xpm, and Topamax 15mg 2xam-3xpm. In the
      >last year he has gone down to having seizures only about once a month now.
      >The neor. we take him to thought that maybe by the time he is 5yrs old we
      >will be able to start weaning him off his meds.
      > Jase, age 2yrs, never had a single seizure until about 6 months ago.
      >He also has the grand mal type of seizure. He has them almost like clock
      >work every two weeks. He is on Valproic acid 1.5mg 3xdaily.
      > There is a very good chance our kids will out grow the seizures, but
      >some never do. I know with Kye, he is very delayed due to the seizures, but
      >has almost caught up to his little brother-activity wise-since Jase has
      >started having seizures. I don't know that there is anything that can be
      >done about the seizures other than trying different combinations of meds,
      >also might try watching the diet to make sure there isn't too much sugar,
      >or carbbohydrates. I think this has helped some with the boy's seizures.
      >They are both scheduled to have eegs in March in Denver Childrens Hospital
      >so will see then if there is anything else the drs can do about the
      >seizures of if this is just something we might have to learn to live with.
      > Sorry I couldn't be any more help with this subject.
      >
      > Bobbie, grandma to Kye, age 3yrs and Jase, age 2yrs, both angels
      >
      >monica carpio wrote:
      > Melissa,
      >
      >welcome to the angel's club all these wonderful mom,dads and family members
      >have great advice, like you I have no idea what owrks best, My daughter
      >Crystal who just turned to 2 days ago is very shakey the doctors call her
      >siezures mayclonic or somthing like that and she is just constantly
      >jerking,
      >she is on topamax, lorezapam and valproic acid all which seem not to help.
      >Wish someone had some advice for us .
      >
      >Monica, Crystal's mom
      >
      >
      > >From: melissa triplett
      > >Reply-To: familiesofangelmansyndrome@yahoogroups.com
      > >To: familiesofangelmansyndrome@yahoogroups.com
      > >Subject: Re: [Families of Angelman Syndrome] Ritalin LA
      > >Date: Tue, 7 Feb 2006 18:16:51 -0800 (PST)
      > >
      > >hi,
      > > well this is my first time writing in I have a child with angelman
      > >he is 8 years old
      > > we tried him on ritalin for his behavior, it didn't help he was on it
      > >about a week it was so bad that I called the doctor and told him that I
      > >could not give it to him anymore because it made him very hyper and more
      > >aggressive, she said it sounded like he has a adverse reaction to it, so
      >we
      > >took him off of it now he is on resperdal which seems to helping alot
      >with
      > >his behavior, we have been having a hard time with controlling his
      > >seizures, he is on topamax, and depokote, and it still isn't helping that
      > >much if anybody has any information on controlling seizures, please let
      >me
      > >know.
      > >
      > > Thank you
      > > melissatriplett
      > >
      > >thelma443 wrote:
      > > Hi all,
      > >
      > >My question is for anyone whose child may have taken this drug or is
      > >currently taking it. How are your children doing and what are their
      > >side effects. I am really leary of even beginning it. There are so
      > >many side effects. Any replies will be helpful.
      > >Thanks,
      > >Tami
      > >
      > >
      > >
      > >
      > >
      > >
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      > >
      > > To unsubscribe from this group, send an email to:
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    • monica carpio
      BOBBIE, IT S SO NICE TO HEAR YOU RE DOING GOOD, EVEN IF IT S WITH YOUR HANDS REALLY FULL. THANKS SO MUCH FOR THE TIP AM GOING TO ASK MY CRYSTAL S DOC ABOUT THE
      Message 2 of 10 , Feb 13, 2006
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        BOBBIE,

        IT'S SO NICE TO HEAR YOU'RE DOING GOOD, EVEN IF IT'S WITH YOUR HANDS REALLY
        FULL. THANKS SO MUCH FOR THE TIP AM GOING TO ASK MY CRYSTAL'S DOC ABOUT THE
        VALIUM, YOU KNOW EXCUSE HE IGNORANCE BUT I WAS UNDER THE IMPRESSION THAT WAS
        A DEPRESSION DRUG, BUT LIKE MY MOM ALWAYS SAYS YOU LEARN EVERYDAY. i REALLY
        AM GLAD TO HEAR THAT YOU GUYS ARE DOING GOOD, I KNOW THAT THE LORD HAS A
        SPECIAL WOMAN FOR YOUR WONDERFUL SON HE IS JUST PREPARING HER RIGHT NOW AND
        THE TIME WILL COME WHEN HE AN HIS LITTLE ANGELS WILL BE HAPPIER THAN EVER.
        HE DESERVES IT SO MUCH.
        TELL HIM HI ON MY BEHALF AND TELL HIM HOW MUCH THIS "CYBER" FRIEND ADMIRES
        HIM. I REALLY CAN'T STRESS IT ENOUGH YOU ARE A WONDERFUL PERSON FOR BEING SO
        SO SO SUPPORTIVE. I HOPE TO HEAR FROM YOU SOON BOBBIE, IN THE MEAN TIME TAKE
        CARE

        MONICA


        >From: bobbie toole <sandylot_2@...>
        >Reply-To: familiesofangelmansyndrome@yahoogroups.com
        >To: familiesofangelmansyndrome@yahoogroups.com
        >Subject: Re: [Families of Angelman Syndrome] monica carpio
        >Date: Mon, 13 Feb 2006 09:11:21 -0800 (PST)
        >
        >Monica
        >
        >Sorry it has taken so long to get back with you. I had all 5 grandkids over
        >the weekend, so wasn't able to get to the computer, ages boy age 9,
        >idential twin 5yr old girls and the 2 angles. Lots of work but love them
        >all.
        >
        > It almost sounds like the lorezapm is at too high of a dose for Crystal.
        >We have 10mg of valium that we can give either of the boys after they have
        >their first seizure to help them to not have clusters of seizures. I think
        >after we got it was when Kye started really slowing down on his seizures.
        >Jase has, I think the type of seizures that Crystal has, and the valium has
        >helped him alot. And we only use it at the first on set of seizures. The
        >boys will usually sleep a couple of hours but never 2 days. I would check
        >into getting off the lorezapm and getting something less harsh.
        >
        > As for my son he is doing good with the boys. He still hasn't found the
        >new love of his life, but I also think he is too afraid of getting hurt
        >again. Time will tell, I guess. I think he needs elected to Father of the
        >year, as much as he has on his plate and still all the time he gives to the
        >boys and how he plays with them. He even took time yesterday to take the
        >boys to see his ex-wife's parents since it had been awhile since they had
        >gotten to see their grandkids. Their Mom hasn't seen them in about a month
        >now.
        >
        > I sure hope you can get Crystal's meds straightened out and can get the
        >seizures under control or at least slowed down.
        >
        > Take care,
        > Bobbie
        >monica carpio <MONICACARPIO_3@...> wrote:
        > Hi Bobbie,
        >
        >It's nice talking to you again,I hope all is going well, How is you son
        >doing ,Boy I think he is a Angel himself being ale to handle the situation
        >as good as he does,and not to mention yourself you are a great mother and
        >grandmother for all the help you provide. It makes me ashamed for loosing
        >my patience once in a while. You know I had never heard of Carbatrol Or
        >Depakote Thanks so much am going to ask my Angel's genec.Dr about it maybe
        >it would help Crystal some she on topamax,valproic acid and lorezapm you
        >know she has what I call annoying seizures, Maycronic or something like
        >that. She is just constintly jerking and the poor thing can't even sleep
        >and
        >when I give her the lorezapam she goes to sleep for about two days it was a
        >concern till about three weeks ago when she got a G-tube placed, because
        >she
        >would just sleep and would not wake up to eat but now I just have to hook
        >her up and I know she is getting all she needs It sucks but I have no other
        >choice.
        >
        >Thanks for listening God Bless
        >
        >Monica
        >
        >
        > >From: bobbie toole
        > >Reply-To: familiesofangelmansyndrome@yahoogroups.com
        > >To: familiesofangelmansyndrome@yahoogroups.com
        > >Subject: Re: [Families of Angelman Syndrome] Ritalin LA/monica carpio
        > >Date: Thu, 9 Feb 2006 10:50:10 -0800 (PST)
        > >
        > >Monica,
        > > Both of my grandsons are angels and both have seizures.
        > > Kye,age 3yrs, started having grand ma seizures at the age of 8
        > >months-at the time he was having upwards of 100 a day. He is on Carbatrol
        > >200mg x 2, Depakote 125mg 2xam-3xpm, and Topamax 15mg 2xam-3xpm. In the
        > >last year he has gone down to having seizures only about once a month
        >now.
        > >The neor. we take him to thought that maybe by the time he is 5yrs old we
        > >will be able to start weaning him off his meds.
        > > Jase, age 2yrs, never had a single seizure until about 6 months ago.
        > >He also has the grand mal type of seizure. He has them almost like clock
        > >work every two weeks. He is on Valproic acid 1.5mg 3xdaily.
        > > There is a very good chance our kids will out grow the seizures, but
        > >some never do. I know with Kye, he is very delayed due to the seizures,
        >but
        > >has almost caught up to his little brother-activity wise-since Jase has
        > >started having seizures. I don't know that there is anything that can be
        > >done about the seizures other than trying different combinations of meds,
        > >also might try watching the diet to make sure there isn't too much sugar,
        > >or carbbohydrates. I think this has helped some with the boy's seizures.
        > >They are both scheduled to have eegs in March in Denver Childrens
        >Hospital
        > >so will see then if there is anything else the drs can do about the
        > >seizures of if this is just something we might have to learn to live
        >with.
        > > Sorry I couldn't be any more help with this subject.
        > >
        > > Bobbie, grandma to Kye, age 3yrs and Jase, age 2yrs, both angels
        > >
        > >monica carpio wrote:
        > > Melissa,
        > >
        > >welcome to the angel's club all these wonderful mom,dads and family
        >members
        > >have great advice, like you I have no idea what owrks best, My daughter
        > >Crystal who just turned to 2 days ago is very shakey the doctors call her
        > >siezures mayclonic or somthing like that and she is just constantly
        > >jerking,
        > >she is on topamax, lorezapam and valproic acid all which seem not to
        >help.
        > >Wish someone had some advice for us .
        > >
        > >Monica, Crystal's mom
        > >
        > >
        > > >From: melissa triplett
        > > >Reply-To: familiesofangelmansyndrome@yahoogroups.com
        > > >To: familiesofangelmansyndrome@yahoogroups.com
        > > >Subject: Re: [Families of Angelman Syndrome] Ritalin LA
        > > >Date: Tue, 7 Feb 2006 18:16:51 -0800 (PST)
        > > >
        > > >hi,
        > > > well this is my first time writing in I have a child with angelman
        > > >he is 8 years old
        > > > we tried him on ritalin for his behavior, it didn't help he was on it
        > > >about a week it was so bad that I called the doctor and told him that I
        > > >could not give it to him anymore because it made him very hyper and
        >more
        > > >aggressive, she said it sounded like he has a adverse reaction to it,
        >so
        > >we
        > > >took him off of it now he is on resperdal which seems to helping alot
        > >with
        > > >his behavior, we have been having a hard time with controlling his
        > > >seizures, he is on topamax, and depokote, and it still isn't helping
        >that
        > > >much if anybody has any information on controlling seizures, please let
        > >me
        > > >know.
        > > >
        > > > Thank you
        > > > melissatriplett
        > > >
        > > >thelma443 wrote:
        > > > Hi all,
        > > >
        > > >My question is for anyone whose child may have taken this drug or is
        > > >currently taking it. How are your children doing and what are their
        > > >side effects. I am really leary of even beginning it. There are so
        > > >many side effects. Any replies will be helpful.
        > > >Thanks,
        > > >Tami
        > > >
        > > >
        > > >
        > > >
        > > >
        > > >
        > > > SPONSORED LINKS
        > > > Family cruise special Learning disabled Disabled equipment
        > > >Family vacation special
        > > >
        > > >---------------------------------
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        > > >
        > > >
        > > > Visit your group "familiesofangelmansyndrome" on the web.
        > > >
        > > > 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.
        > > >
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      • bobbie toole
        Monica, Valium has been used for depression, but is also a great muscle relaxant. That is why I think it works so good on the boys, it relaxes the muscles
        Message 3 of 10 , Feb 16, 2006
        • 0 Attachment
          Monica,
          Valium has been used for depression, but is also a great muscle relaxant. That is why I think it works so good on the boys, it relaxes the muscles enough that they are able to go to sleep and also relaxes what ever it is in the brain causing the seizures. And it doesn't last too long so they aren't zoombies the rest of the day. Hope this helps.

          Bobbie

          monica carpio <MONICACARPIO_3@...> wrote:
          BOBBIE,

          IT'S SO NICE TO HEAR YOU'RE DOING GOOD, EVEN IF IT'S WITH YOUR HANDS REALLY
          FULL. THANKS SO MUCH FOR THE TIP AM GOING TO ASK MY CRYSTAL'S DOC ABOUT THE
          VALIUM, YOU KNOW EXCUSE HE IGNORANCE BUT I WAS UNDER THE IMPRESSION THAT WAS
          A DEPRESSION DRUG, BUT LIKE MY MOM ALWAYS SAYS YOU LEARN EVERYDAY. i REALLY
          AM GLAD TO HEAR THAT YOU GUYS ARE DOING GOOD, I KNOW THAT THE LORD HAS A
          SPECIAL WOMAN FOR YOUR WONDERFUL SON HE IS JUST PREPARING HER RIGHT NOW AND
          THE TIME WILL COME WHEN HE AN HIS LITTLE ANGELS WILL BE HAPPIER THAN EVER.
          HE DESERVES IT SO MUCH.
          TELL HIM HI ON MY BEHALF AND TELL HIM HOW MUCH THIS "CYBER" FRIEND ADMIRES
          HIM. I REALLY CAN'T STRESS IT ENOUGH YOU ARE A WONDERFUL PERSON FOR BEING SO
          SO SO SUPPORTIVE. I HOPE TO HEAR FROM YOU SOON BOBBIE, IN THE MEAN TIME TAKE
          CARE

          MONICA


          >From: bobbie toole
          >Reply-To: familiesofangelmansyndrome@yahoogroups.com
          >To: familiesofangelmansyndrome@yahoogroups.com
          >Subject: Re: [Families of Angelman Syndrome] monica carpio
          >Date: Mon, 13 Feb 2006 09:11:21 -0800 (PST)
          >
          >Monica
          >
          >Sorry it has taken so long to get back with you. I had all 5 grandkids over
          >the weekend, so wasn't able to get to the computer, ages boy age 9,
          >idential twin 5yr old girls and the 2 angles. Lots of work but love them
          >all.
          >
          > It almost sounds like the lorezapm is at too high of a dose for Crystal.
          >We have 10mg of valium that we can give either of the boys after they have
          >their first seizure to help them to not have clusters of seizures. I think
          >after we got it was when Kye started really slowing down on his seizures.
          >Jase has, I think the type of seizures that Crystal has, and the valium has
          >helped him alot. And we only use it at the first on set of seizures. The
          >boys will usually sleep a couple of hours but never 2 days. I would check
          >into getting off the lorezapm and getting something less harsh.
          >
          > As for my son he is doing good with the boys. He still hasn't found the
          >new love of his life, but I also think he is too afraid of getting hurt
          >again. Time will tell, I guess. I think he needs elected to Father of the
          >year, as much as he has on his plate and still all the time he gives to the
          >boys and how he plays with them. He even took time yesterday to take the
          >boys to see his ex-wife's parents since it had been awhile since they had
          >gotten to see their grandkids. Their Mom hasn't seen them in about a month
          >now.
          >
          > I sure hope you can get Crystal's meds straightened out and can get the
          >seizures under control or at least slowed down.
          >
          > Take care,
          > Bobbie
          >monica carpio wrote:
          > Hi Bobbie,
          >
          >It's nice talking to you again,I hope all is going well, How is you son
          >doing ,Boy I think he is a Angel himself being ale to handle the situation
          >as good as he does,and not to mention yourself you are a great mother and
          >grandmother for all the help you provide. It makes me ashamed for loosing
          >my patience once in a while. You know I had never heard of Carbatrol Or
          >Depakote Thanks so much am going to ask my Angel's genec.Dr about it maybe
          >it would help Crystal some she on topamax,valproic acid and lorezapm you
          >know she has what I call annoying seizures, Maycronic or something like
          >that. She is just constintly jerking and the poor thing can't even sleep
          >and
          >when I give her the lorezapam she goes to sleep for about two days it was a
          >concern till about three weeks ago when she got a G-tube placed, because
          >she
          >would just sleep and would not wake up to eat but now I just have to hook
          >her up and I know she is getting all she needs It sucks but I have no other
          >choice.
          >
          >Thanks for listening God Bless
          >
          >Monica
          >
          >
          > >From: bobbie toole
          > >Reply-To: familiesofangelmansyndrome@yahoogroups.com
          > >To: familiesofangelmansyndrome@yahoogroups.com
          > >Subject: Re: [Families of Angelman Syndrome] Ritalin LA/monica carpio
          > >Date: Thu, 9 Feb 2006 10:50:10 -0800 (PST)
          > >
          > >Monica,
          > > Both of my grandsons are angels and both have seizures.
          > > Kye,age 3yrs, started having grand ma seizures at the age of 8
          > >months-at the time he was having upwards of 100 a day. He is on Carbatrol
          > >200mg x 2, Depakote 125mg 2xam-3xpm, and Topamax 15mg 2xam-3xpm. In the
          > >last year he has gone down to having seizures only about once a month
          >now.
          > >The neor. we take him to thought that maybe by the time he is 5yrs old we
          > >will be able to start weaning him off his meds.
          > > Jase, age 2yrs, never had a single seizure until about 6 months ago.
          > >He also has the grand mal type of seizure. He has them almost like clock
          > >work every two weeks. He is on Valproic acid 1.5mg 3xdaily.
          > > There is a very good chance our kids will out grow the seizures, but
          > >some never do. I know with Kye, he is very delayed due to the seizures,
          >but
          > >has almost caught up to his little brother-activity wise-since Jase has
          > >started having seizures. I don't know that there is anything that can be
          > >done about the seizures other than trying different combinations of meds,
          > >also might try watching the diet to make sure there isn't too much sugar,
          > >or carbbohydrates. I think this has helped some with the boy's seizures.
          > >They are both scheduled to have eegs in March in Denver Childrens
          >Hospital
          > >so will see then if there is anything else the drs can do about the
          > >seizures of if this is just something we might have to learn to live
          >with.
          > > Sorry I couldn't be any more help with this subject.
          > >
          > > Bobbie, grandma to Kye, age 3yrs and Jase, age 2yrs, both angels
          > >
          > >monica carpio wrote:
          > > Melissa,
          > >
          > >welcome to the angel's club all these wonderful mom,dads and family
          >members
          > >have great advice, like you I have no idea what owrks best, My daughter
          > >Crystal who just turned to 2 days ago is very shakey the doctors call her
          > >siezures mayclonic or somthing like that and she is just constantly
          > >jerking,
          > >she is on topamax, lorezapam and valproic acid all which seem not to
          >help.
          > >Wish someone had some advice for us .
          > >
          > >Monica, Crystal's mom
          > >
          > >
          > > >From: melissa triplett
          > > >Reply-To: familiesofangelmansyndrome@yahoogroups.com
          > > >To: familiesofangelmansyndrome@yahoogroups.com
          > > >Subject: Re: [Families of Angelman Syndrome] Ritalin LA
          > > >Date: Tue, 7 Feb 2006 18:16:51 -0800 (PST)
          > > >
          > > >hi,
          > > > well this is my first time writing in I have a child with angelman
          > > >he is 8 years old
          > > > we tried him on ritalin for his behavior, it didn't help he was on it
          > > >about a week it was so bad that I called the doctor and told him that I
          > > >could not give it to him anymore because it made him very hyper and
          >more
          > > >aggressive, she said it sounded like he has a adverse reaction to it,
          >so
          > >we
          > > >took him off of it now he is on resperdal which seems to helping alot
          > >with
          > > >his behavior, we have been having a hard time with controlling his
          > > >seizures, he is on topamax, and depokote, and it still isn't helping
          >that
          > > >much if anybody has any information on controlling seizures, please let
          > >me
          > > >know.
          > > >
          > > > Thank you
          > > > melissatriplett
          > > >
          > > >thelma443 wrote:
          > > > Hi all,
          > > >
          > > >My question is for anyone whose child may have taken this drug or is
          > > >currently taking it. How are your children doing and what are their
          > > >side effects. I am really leary of even beginning it. There are so
          > > >many side effects. Any replies will be helpful.
          > > >Thanks,
          > > >Tami
          > > >
          > > >
          > > >
          > > >
          > > >
          > > >
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