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Hi Sandra, I think we have talked in the past, my name is April, mother to Devon, now six. He was dx'ed at 14 months by a geneticist. The Geneticist ordered a bone age x-ray and that confirmed the dx. He recently had another bone age done and it is still about three years advanced. I would like to know how you and your son where dx'ed? Devon also had blood tests for all kinds of this in particular the NSD1 gene that is sometimes affected, but all blood work was "normal". The reason we went to see the geneticist was that we thought we would get answers on why he was so sick and had so many health issues (none really because of his size, if that makes any sense?), but were shocked that she had a dx within minutes and confirmed with Dr Weaver in a matter of days! He is mainstreamed in school and doing OK, besides some major behavior issues that are slowly getting better. He tends to act out violently and aggressive at other times. His speech is there, but
can be difficult to understand. He has always had low muscle tone, poor gait & balance, and that is still very apparent. He has many other health issues that keep coming up, it seams that as soon as we figure out one, another appears. Latest being his sleep study...he has sleep apnea, mixed, meaning both obstructive and central nervous system apnea. He are going over to the Seattle children's Hospital (in Washington US) in February to redo the test, get more opinions and go from there on this one. Autonomic Dysfunction keeps getting mentioned, but Devon would not cooperate for the testing, so they say they will pursue that as he ages, but it would explain many of his symptoms....he also has allergies, to every thing, a allergy specialist ran more testing finding that Devon's body makes alot of IGE, making him mildly allergic to every thing, so he is on tuns of allergy meds. Do you or your son have any major medical issues? How was school for you? Any input? Hope
to hear from you soon, it is great having so many posts in one day!
April
sandra239656 <sandraswift@...> wrote:
--- In WSSA@yahoogroups.com , "Jenny" <myjenny_80@...> wrote:
>
> Hey Everyone!!
> I was hoping to get some help. I don't know why but for the
last
> couple weeks I've been obsessed wondering what Earl's going to look
> like when he gets older. I can't explain why, I've just been going
> crazy over it. My boyfriend even searched on line to try and find
> pictures of adults with Weavers, hoping that would help me. I'm not
> afraid of what he'll look like, just strangely curious. Have any of
you
> felt like that before? If not thats alright, it wouldn't be the first
> time i was the only weird one!! Well hope your all safe and
well...talk
> to you soon! Jenny
>
hi jenny i hope this helps you a little i am a 42 year old mum of 1
wonderful son named liam.And we both have weavers liam was diagnosed as
a toddler and i was diagnosed at the same time. So for 35 years i knew
i was "different" not in a bad way just head and shoulders above my
friends and family ( who are all average height). im now 6ft 1 and i
wouldnt change a thing. if there is ever anything you or anybody else
would like to knw just email me and i will be totaly upfront and
honest.i will forward you some pics of me and my angel. take care love
sandra and liam xxxxxxxxxxxxxxxxx
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