My son is 3, and had the pharyngeal flap surgery done six months ago at aged 2.5. Prior to this he had 2 surgeries to try and close and lenghten his palate. His breathing and snoring was really bad right after surgery, and his speech actually seemed to get worse, but now I can say without a doubt that it was the best surgery to date in terms of visible results. His speech has improved 300% - prior to the surgery we could only really understand about 25% of what he said and family and friends couldn't understand anything. About a month after surgery his speech started to suddenly improve drastically and now I understand about 80% (pretty normal for a three year old boy!) and friends and family have no problem understanding him. Our speech therapist is thrilled!! He went from being very delayed in speech, to not far from normal! Our biggest issue was getting him to say words he already knew correctly - he would say new words wonderfully, but it was hard to break old habits. We were VERY nervous about the surgery, but it really made a HUGE difference for us. I'm afraid I can't help with the Sticklers questions, but if you have any questions about the surgery, I'd be happy to let you know about our experience.
: 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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