Posted by Teresa Larson on 1/9/2008, 9:26 pm, in reply to "Re: New here: surgery & facial growth ?"
71.142.227.95
Michelle,
My son with PRS and possible Sticklers is 14 years old now. We have seen an orthodontist and was told he may need jaw surgery but they don't operate untill boys are done growing at 18 years old. At this time we are watching his growth and planning to seek a second opinion or even a third untill I feel comfortable. I would recommend asking these questions at a cleft clinic. Ever been to one? You have a chance to meet with a geneticist, plastic surgeon, ENT and orthodontist. You find a cleft clinic at a craniofacial department of a Children's hospital. This is a 4-6 hour appt. so be prepared.
I did not notice any change to Jacobs face after palate repair and I really wouldn't expect to with a soft palate surgery. I have noticed children with Cleft lips having a sunken in appearance to their upper lips but in addition to their lip involvement there is often nasal and tooth problems too. I think you are more likely to see a sunken nasal bridge with PRS because of the high possibility of Sticklers syndrome. This doesn't appear after surgery though but should be noticeable at birth.
I wasn't really sure what appliance you are talking about. Only heard of an obturator which closes up the palate to keep food out of the nasal passages and to improve speech. I am not even sure they still use those.
Teresa
--Previous Message--
: Thank you so much for sharing your experience
: Jennifer! It's reassuring to hear from
: someone first-hand.
:
: May I ask, at what age did you have your
: palate repaired? And when did you have your
: jaw surgery? Was that the lower jaw only
: that you had worked on? It sounds like you
: don't anticipate jaw surgery for your son,
: correct? Also, what type of dental issues
: did you have?
:
: It sounds like our sons are affected to a
: similar extent. When you introduced solid
: foods did you do anything special or just
: the usual rice cereal on a spoon? We are
: just about to start solids and I'm not sure
: how non-liquids will work with the wide open
: secondary palate.
:
: I've been told that 17% of PRS cases are
: isolated...if it's as little as <1% I
: guess we'll have to wait and see if anything
: else comes up!
:
: Thanks,
: Michele
:
:
: --Previous Message--
: My son (9 mons old) has a very mild case of
: PRS and had his cleft palette repaired
: almost 3 weeks ago. He's always ate with
: the haberman and loves his babyfood. After
: his palette repair he won't use the bottle
: he'll only drink from a sippy cup.
:
: He's never been big but neither his dad or I
: are big so it's hard to tell if he's just
: smallframed like me or if it's something
: with PRS. he's in the 50% for hieght so he
: may just be tall and skinny like his dad.
:
: When he was born his chin was noticablity
: smaller but at 9 mons it's grown out to
: where it looks like normal. Up until he was
: 4 to 6 mons we had to keep him on his belly
: to help him breath easier now he sleeps on
: his back with no problems breathing.
:
: I've never heard of developing facial
: abnormalities after the cleft repair. I had
: mine repaired and I think I look normal. My
: son's doctor said it's better to get it
: fixed when he's younger so he can start
: talking. He also said that there are other
: syndromes associated with PRS and <1% of
: PRS cases are considered isolated so maybe
: the facial problems are part of another
: symdrome that are coming out in the later
: years. According to the gentics team it is
: impossible to know if PRS is isolated when a
: child is this young so we're still waiting
: to see what else maybe associated with my
: sons PRS. I'm now 33 and aside from a cleft
: palette, jaw surgery to fix my small lower
: jaw and lots of dental work I have no other
: problems that I know of so maybe my son will
: just have to endure the same surgeries I had
: to.
:
:
:
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