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Re: Pierre Robin/ Leg Pain
Posted by Jenn on 1/3/2011, 8:12 pm, in reply to "Re: Pierre Robin/ Leg Pain"
I have a 2-1/2 year old daughter born with PRS and diagnosed with Sticklers. She has both hearing Loss and eye isssues along with the facial features sometimes associated with Sticklers. She wears hearing aids and contacts and is followed by a lot of doctors but living a pretty normal life now. I wonder a lot about the future and the possibility of the joint issues and pain. I'd love to connect with you at some point as I'm always trying to connect with other parents of children with Sticklers and learn what could be.
: Hi JoAnn:
: I am the founder of PRN and mom to a 22 year
: old with PRS and Sticklers. He began
: complaining of leg pain when he was about 9.
: His legs would give out on him and at
: times, he didn't walk to walk very far. He
: never really complained about arm pain.
: What type of genetic testing did they do?
: Testing for Sticklers isn't always
: conclusive. Are her eyes and hearing okay?
: --Previous Message--
: I have a 6 year old daughter born with PRS.
: She has begun complaining of leg and and arm
: pain. We had genetic testing at birth and
: they ruled out sticklers however, after
: reading a few other articles I'm wondering
: if it's possible that indeed she does have
: sticklers now that she is beginning to
: complain of the leg and arm pains. I was
: curious if any other family has experienced
: this same type of situation and if so the
: outcome. I have also considered the idea
: that possibly she is experiencing growing
: pains however as a mother I just want to
: cover all the bases. If anyone has any
: suggestions or comments your thoughts will
: be appreciated. Thanks!
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