[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by tom chase on 9/15/2006, 9:07 pm, in reply to "questions" --Previous Message--
207.69.137.27
Hi I just thought I'd let you know I had thoughs exact same problems growing up plus a little extra surguries I just was diagnosed with 22q11 syndrom, and I'm 28 years old. Your not alone with these problems, just thought I'd also let you know that there is somebody else out there dealing with this too. I also just was diagnosed with charco-marie-tooth syndrom otherwise known as cmt. I have been dealing with these problems all my life without a diagnosis. tom c
: My daughter is now being tested for 22q
: syndromes. She is 5 years old and has
: an interesting but less medically
: involved past. She was born with
: Atrial Septal Defect(spontaneously
: closed after 3 years), umbilical
: hernia, some webbed toes,strabismus,
: chronic undiagnosed diarrhea and
: sensitive stomache to vomitting,
: speech delay(although now is catching
: up well with slight stutter), loves
: kids but is socially a little
: different in her approach and her
: understanding of situations, major
: behaviour issues with tantruming, head
: butting ect..., has full time help at
: school to help her follow routines,
: had major tonsilitis(removed) and
: we've been told her nose and ear
: passages are exceptionally small. She
: is a clumsy child with very flat feet
: and recieves O.T. for fine motor
: difficulties. She has a history of
: choking and because of her oral motor
: delays can't blow bubbles or even blow
: out a candle yet. The list could go
: on, but I just wanted anyone who has
: these difficulties perhaps on this
: level to write back. There is some
: suggestion that she may be on the
: autism spectrum, but they are also
: testing for this 22q syndromes. After
: 5 1/2 years of "issues" I am
: really hoping for some answers. Any
: response would be appreciated
:
:
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