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1432Re: [Families of Angelman Syndrome] New to Group

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  • fronkfam
    May 7, 2006
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      Jean,

      We also feel so priveledged to be raising such a special child. He
      has taught us all (me, my husband, our 2 other children) more than I
      can name. He seems to have a great effect on everyone he meets.

      Teri


      --- In familiesofangelmansyndrome@yahoogroups.com, momanddad Warnock
      <momanddad28@...> wrote:
      >
      > HI, my name is Jean and our son is Robert, deletion positive at the
      age of 5. Previously they told us he had cerebral palsy, but we could
      never quite understand that diagnosis because he didn't really fit any
      of the particular kinds of cp. It was to say the least, very
      frustrating, then came the suspicion of AS. We had him tested and well
      it was almost like a blessing in disguise, because when we received
      the info on AS, there was our beautiful son. It made such perfect
      sense, he does not have the small head, either, but did start having
      seizures at the age of 16 months. He is very much under control and is
      really, at the age of 17, not bothered by them very much. He is still
      taking anti seizure meds, because the last time we tried to wean him
      off, he had a bad seizure. To us it was not worth it, they seem to
      get less and less after they go thru puberty!!! Yes, they go thru
      puberty just like our other children. Robert is fourth in the line of
      5 wonderful children!
      > I sympathize with you mourning over one diagnosis and then having
      to start all over again with another, but as I said it, for us, was
      much better than not knowing.
      > So many of your children on this board are so much younger than
      our son, and pretty much all seem to be walking, our son was never
      able too. Although it was sad for along time, now it is just a way of
      life for us, he is able to crawl and mostly scoot around on his
      bottom. He is very happy and a joy to have, we thank God for him and
      accept the challenge of raising one of Gods special people.
      > Take care and if you have any questions, feel free to ask!
      > Jean
      >
      > nicole Wygonik <neschacht@...> wrote:
      > I feel the same way that you do about not fitting. My
      > son was diagnosed with Autism at 2. We are going
      > through our second set of tests for Angelman right
      > now. The first test for deletion came back negative.
      > My son will be 4 in a month. My son has a small head
      > but knock on wood....no seizures. Besides the
      > seizures what other signs does your son have? I have
      > accepted the autism diagnosis because I have lived
      > with the belief he had it since he was 16 months. I
      > have already grieved over the autism diagnosis and am
      > scared to have to try and fit in somewhere else.
      >
      > Nicole
      >
      > --- fronkfam <fronkfam@...> wrote:
      >
      > > Hi,
      > >
      > > My name is Teri. I live in Utah. My six year old
      > > son Brayden, might
      > > have AS. We were told at 15 months that he probably
      > > had Autism. We
      > > were given a diagnosis of Autism at age 3 when he
      > > started attending a
      > > preschool for kids with Autism. He started having
      > > seizures at 3.5
      > > years old. At the time seizures started, we had
      > > some genetic testing
      > > done. The doctor didn't test for Angelman because
      > > Brayden didn't fit
      > > the symptom of having a small head. Now our
      > > neurologist is requesting
      > > he be tested.
      > >
      > > I don't know much about Angelman. Our lives have
      > > revolved around
      > > Autism for so long, but Brayden was always different
      > > from other kids
      > > with Autism.
      > >
      > > Any information you could share would really be
      > > appreciated.
      > >
      > > Thanks,
      > > Teri
      > >
      > >
      > >
      > >
      > >
      >
      > Nicole Schacht
      >
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