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.
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