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Re: anyone used nasal trumpets?
Posted by Holly on 12/17/2010, 7:27 pm, in reply to "Re: anyone used nasal trumpets?"
Hey Kyla...My name is Holly. My daughter Kate is 2.5 years old and has prs/sticklers syndrome also. Kate had a tongue lip adhesion done at 3 weeks old, and it did awesome for her. We were also offered a jaw distraction or trach to manage her breathing. We were never offered the np tube/trumpet, but looking back I think it also would have been a good option. Most of their breathing problems peak at about three months and then get better. I know that Kate's jaw had good growth spurt at about six months old and then again around 9 months old. Her lower jaw is still smaller than her top, but it doesn't affect her breathing. She had her palate repair done at 11.5months old and did great with no effects on her breathing. Her ent still wanted her to have jaw distraction, but I refused. I wanted to give her just a little more time, and it paid off. She passed her last sleep study just like a normal baby. I don't think that jaw distractions are necessary in most cases. I could go on and on here! Pleas feel free to email me to my personal email any questions you may have. I could share some more of her story and pictures. The good news is is that Kate is a normal toddler that is happy and thriving and now is going to preschool. |
: So after I posted, I thought of another
: question! Do any of you have any experience
: with a great doctor who specializes in kids
: with PRS? I'm just at a roadblock. I felt
: like our son's breathing problems would be
: better by now and we could get rid of the
: nasal trumpet. It's getting harder and
: harder to hold him down to clean it and put
: it back in everyday..plus he's pulling it
: out alot. In the beginning I thought this
: was the best option b/c it didn't require
: surgery. Our only option seems to be a
: trach or jaw distractors. Our ENT is
: pushing the distractors and I honestly can't
: imagine doing either one given that he will
: soon be 4 months old. I want to be
: realistic in our approach as well. Our son's
: chin looks remarkable and has grown so much
: since birth..if he didn't have a tube in his
: nose, you'd never know anything was wrong.
: he also has a g-tube and had a nissen. Any
: help/advice would be much appreciated!
: Thanks again!
: --Previous Message--
: My son was born 9/4/10 with PRS. We opted
: to have jaw distractors and b/c nasal
: trumpet worked for him he didn't require
: trach. Chin has grown alot since birth, but
: still not enough to where he can support his
: airway w/o nasal trumpet. So far we don't
: know of anyone or any doctors in the us who
: have used this approach. We had a 42d NICU
: stay and he is at home. He recieves care at
: a large medical center in NC with a really
: great craniofacial team. We feel like our
: son is somewhat of a pioneer, it would be
: great though to talk to someone who knows
: what we are going through :-) Any help would
: be appreciated! thanks, Kyla
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