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RE: [Families of Angelman Syndrome] New Member

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  • 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 1 of 20 , Oct 13, 2006
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      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





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    • 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 2 of 20 , Oct 29, 2006
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        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 3 of 20 , Oct 30, 2006
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          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!!






          ---------------------------------
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        • 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 4 of 20 , Feb 5, 2007
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            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 5 of 20 , Feb 5, 2007
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              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.














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            • 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 6 of 20 , Feb 5, 2007
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                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 7 of 20 , Feb 5, 2007
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                  --- 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 8 of 20 , Feb 6, 2007
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                    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


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