Posted by Di-ann
on 7/10/2010, 8:15 pm, in reply to "Undiagnosed PRS?"
71.185.103.166
get your child to the nearest best childrens hospital in your area.He needs great help.My son from PRS has had 11 surgeries and more to go.He needs medical help ASAP. Your state should help all cost because he has a syndrome!Look into welfare for medical cost.You are your childs best advocate.Let me know what happens please!
--Previous Message--
: I am the mother of a 17 yr old boy with
: undiagnosed PRS and an incredibly new
: poster here.
: I first noticed my son's extremely small
: chin and mouth when he was about 5 yrs old.
: He also has a tongue that he can barely
: stick out because it is attached too closely
: to the end. Not one MD or dentist ever
: thought this was something worth worrying
: about. He wasn't born with a cleft lip or
: palate.
: Since his teeth came in weird and it was
: obvious he was going to need braces, we were
: referred to a specialist. He got his braces
: (@ 11 yrs old), and after about 3 years,
: they put on a Herp's (spelling??) appliance
: that was supposed to force his chin out
: about 1 1/4" and stimulate growth.
: While it was on, it worked great. But 3
: months shy of when it was supposed to come
: off, one side broke. His orthodontist chose
: not to put it back on and, at the time (May
: 2008), things seemed to be great. About 4
: months later (Sept 2009), his chin started
: receeding again. It has been about 1 year 8
: months since the appliance broke, and he is
: now having difficulty speaking and eating.
: His chin draws back towards his neck
: constricting his voice box and esophagus.
: I would appreciate some guidance/information
: on where to go from here. His father has a
: much milder form of all of these things
: (small chin/mouth, tongue attached too
: closely to the end).
: Any ideas? Anyone?
: Thanks for reading.
: Leigh
:
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