Received an interesting email from the PRS support group...
"I have not posted in a while but my daughter has Stickler and Pierre Robin Sequence. She is 7 years old and has the small mouth and small airway. She has obstructive apnea and sleeps with a Bi-pap machine. She sees a multidisciplinary team annually that encloses dentists, orthodontists (sp), ENT, craniofacial doc. I have already been informed that she will have to have braces and not just that but she will probably have to have some teeth pulled to make room for all her teeth. Her ENT has said that he might need to do surgery to give her more room in her nasal passage.
I am just wondering what other kinds of surgeries might I expect with Pierre Robin as my daughter gets older. Is it always jaw distraction, second cleft palate surgery, tonsils and adenoids out to make more room in her airway?
She has had several surgeries at the beginning of her life birth until about 5 years old. We are currently on a reprieve (so to speak) NO surgeries since 2009. Is there a certain age that starts the jaw distractions, more cleft palate surgery and dental problems? I know every child is different but I do see some commonality in our children. I hope I am making sense?"
Depressing but excellent question. I scheduled Ellie's one year eye appointment follow up. She starts speech therapy in August. She is excelling in PT. I keep thinking, this is about to be all behind us. And then, with this email, I realize it's not. Or it might not be. The dental visits are still very much in the future. So far she doesn't have apnea or breathing problems, so God-willing she won't need a second palate closure, or adenoids and/or tonsils removed. We've been told she won't need jaw distraction but who can say for certain? *sigh*