Posted by Jessica
on 6/8/2011, 6:24 pm, in reply to "Re: Pierre Robin/ Leg Pain"
68.95.118.131
--Previous Message--
: I also have a 6 year old with PRS, Jessica is
: my granddaughter, but I have raised her
: since she was a week old. At 18 months old,
: Jessica could not walk, she would get out of
: her toddler bed and crawl and cry. She was
: finally diagnoised with Juvenile Rheumotoid
: Arthritis. JRA, which effects the joints,
: which is also associated with sticklers. We
: do not know if Jessica has sticklers yet,
: she is going to be followed by a geneses dr
: in a couple of months, 6 years of
: questions. Jessica is also closely
: monitored by a pediatric eye dr, and
: numerous other specialists. If you have a
: Rheumotoid Pediatric dr in your area, get
: him to do blood work to see if there is
: anything there. The cold or wet weather
: severly effects her movement. Just a
: thought
:
: --Previous Message--
:
: Hi Nancy,
: 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.
: --Previous Message--
: 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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i would also like information on this because my daughter is 9 and alot of time says her legs hurt or her arms and we aren't sure it isn't sticklers yet i thought maybe it was restless leg syndrome but they ruled that out so now i feel lost
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