--- In WSSA@yahoogroups.com, Mary Hearing <momofalex031505@...> wrote:
>
> I almost missed your post because there are so few posts on this
site! My son, alex, is 19 months old and was "diagnosed" at about 15
months. he seems to have a very mild case we have been told. He was
pretty significantly developmentally delayed, but we got him into
therapies early, and he has caught up with all the fine and gross
motor skills. he is still very behind in speech. he does not have
any words yet. He does do pretty well with sign language, though.
we live in Portland, OR, and from what I understand, there are not
many people out there diagnosed with Weaver syndrome which makes it
kind of tough because I am eager to know what is in store for alex.
I have emailed dr weaver a few times and he has been pretty helpful.
His email is dweaver@... Good luck with finding answers that you need!
>
> Mary
>
> xselinaregan <xselinaregan@...> wrote:
> Hi everyone
> my name is selina and i have a 4 year old son called charlie who
has
> weavers syndrome.We live in Ireland and we believe charlie is one
of
> two children in ireland who has weavers .
> I am so happy to have found this site and yet a little nervous!!
> I am so looking forward to sharing with you all
> Charlie is a fantastic little boy who is doing really well .he is
in
> mainsteam school with a special assistant,everyday he never ceases
to
> amaze us .
> do any other children have scholosis???
> any info on how to contact Dr .weaver.
> i would relly love to hear from any other parents of similiar aged
> little boys.
> Really looking forward to hearing from you
> hope all the children are well
> best wishes selina
>
>
>
>
>
> Hi my name is Danielle and I am the mother of a 4 yr old with
Weaver's in ga . My son is now 4 ft tall and is presenting scolosis
it is a type that humps there back in a curve (like a hump). My pt
tells me posture is the key to helping with it. His father has a
possible diagnoises also and he is 32 years old and stands 7 ft
tall. But I have been told by Dr. Weaver that my son has a mild
form . When we went to seen Dr. Weaver in May of 2005 he was very
informative and helpful he took 4 -5 hours with us and answereed
anything we needed to know. He was very very nice to us. Anyone
that can go I suggest going or at least emailing him. Best wishes
Danielle Auvenshine
> ---------------------------------
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