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?
: 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!
If you would like to join our email group, please check out our home page at www.pierrerobin.org and follow the instructions there. We would love to have you.