Posted by westernjoe on November 17, 2011 at 23:41:35:In Reply to: 'Floppy epiglottis' causing hypoxia posted by Zachary's Mom on November 17, 2011 at 14:08:53:
First, I'm not a doctor, just a guy who has been through years of sleep problems and did a few years of study to solve it. Sleep medicine is still in its infancy and we have a lot to learn.
Ok, I find your story fascinating because the epiglottis is usually not even considered by sleep docs as a potential problem. That diagnostic bias drives me nuts because the epiglottis's primary function is to CLOSE OFF THE AIRWAY and is one of the major links in the airway chain.
Doing a sleep endoscopy to prove this is brilliant. Sadly, the prevailing thinking is that it's just too hard to do and duplicate the exact conditions of typical sleep. To that I say POOO. A typical sleep study certainly does not duplicate the exact conditions either and we rely on them every day. Ok, sorry for the rant :) Anyway, thank your Doc for doing that and congratulate them on their brilliance and effort.
Now for how to treat, again I'm no doc. The main problem here is that he is young with many years of growing left. You definitely do not want to do anything that could damage the legitimate function of the epiglottis, or cause him problems as the airway structure grows. First, do no harm. That being said, I would still encourage you to develop a reasonable plan to tinker with it, either by stiffening it up, or even doing a partial epiglottectomy. It's important that either/both, especially the latter be done correctly or aspiration will result (ie: bad).
But I certainly do NOT like the "Do nothing" approach. Because of the way the epiglottis works, I think there's a good chance CPAP will actually exacerbate the problem by causing it to shut. Your son must be able to breath during sleep, please do not underestimate the importance of that. It could seriously hamper is development into an adult.
So, here's what I would do: Investigate the scaring technique your doc is suggesting, and also research the partial epiglottectomy option. There is some literature on both. I remember seeing at least one paper that suggested 10-20 of apnea sufferers actually have a failing epiglottis. There are many apnea sufferers that don't respond to CPAP for unknown reasons. My personal opinion is that the epiglottis is the culprit in some of those.. Ultimately, pick your surgeon carefully (repeat 10 times).
Please report back on progress.
RA in TX