Posted by Sabrina
on 11/11/2009, 7:45 am
99.32.150.195
I have a 4 year old (Samuel) with PRS and Stickler's. He had a palate repair at 14 months, a Sphincteroplasty last Feb., and a revision of the spincteroplasty in August. His speech has not improved since this last surgery. He went to crainofacial for his yearly appointment and they have decided to go ahead with the pharyngeal flap after the holidays. That's 3 surgeries in one year! I know the side effect of this surgery is sleep apnea. This is very concerning to me. Has anyone had this procedure and know what the outcome may be. I need to find someone to email back and forth, who has had stickler's or a stickler's child (older)to answer some of my questions. I'm overwhelmed with Stickler Involved People threads. My craino team seems to focus on the craino (of course) and I want to find out how to get answers about my son's joints and if or when they should be checked...he has no pain or complaining, but does exhibit the hypermobil joints. This journey has been easier than what other people go through..but as he gets older, I seem to have more questions. Thanks
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