Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 , Thanks for responding!! Reflux sounds like an issue (we've had two nissens in the past). We are hopefully going to have a esophageal endoscopy with possible biopsies on Monday (this is on the books to be done ASAP). We are having an echocardiogram and EKG done before that (since Tyler had bradycardia down to 41 lots of times during the pH study). I won't know if the reflux is reaching his trachea or not (gotta wait for the endoscopy) but I am thinking that it probably is. If it is reflux, than they cannot do the Laryngo-tracheoplasty (by the way you are 100% correct on the procedure except that Dr. Matt does it all in one surgery). Lately, I feel like everything is HURRY UP----AND WAIT. Anyway, I am so glad you responded:o) Kristy Tyler > Hi Kristy, > I've just caught the tail end of your messages about Tyler, sounds > horrendous. I think we have travelled that road. When was > younger, his scopes showed red swollen airway, this was a great > concern. We had several ph studies done, all a bit inconclusive - > eventually he was put on Losec which totally eliminates stomach acid. > This worked and it turned out that his problem was refluxing stomach > acid (even though he'd had nissans) and aspirating them. Maybe this > isn't Tyler's problem but sounds like it. Does he have a trache? > The pharyngoplasty was something we looked at for because he had a > cleft soft palate, it was decided that he could form the 'p' and 'n' > sounds ok so we didn't get that done. > As for the other op, are you talking about a rib-graft to enlarge the > airway? I know kids who've had that done, it is a couple of procedures, > takes some time I believe. > If Tyler's problem is aspiration of reflux, grew out of it. Hope > that's all it is. > Thinking of you, Lesley F > Joe(15), (10)chARGE, Amy (9) > > > > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > Quote Link to comment Share on other sites More sharing options...
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