1432Re: [Families of Angelman Syndrome] New to Group
- May 7, 2006Jean,
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.
--- In firstname.lastname@example.org, momanddad Warnock
>age of 5. Previously they told us he had cerebral palsy, but we could
> HI, my name is Jean and our son is Robert, deletion positive at the
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 havingto 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 thanour 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!equipment Family vacation special
> 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.
> --- 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
> Do You Yahoo!?
> Tired of spam? Yahoo! Mail has the best spam protection around
> SPONSORED LINKS
> Family cruise special Learning disabled Disabled
> YAHOO! GROUPS LINKS
> Visit your group "familiesofangelmansyndrome" on the web.
> To unsubscribe from this group, send an email to:
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of
>just 2ï¿½/min with Yahoo! Messenger with Voice.
> Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for
> [Non-text portions of this message have been removed]
- << Previous post in topic Next post in topic >>