Sleep apnea treatment concerns

My daughter is 6 yrs old, suspected mito disorder. Recent sleep study shows severe obstructive sleep apnea. ENT recommends tonsillectomy though tonsils are pretty normal sized but "they are there so need to be out." Neuro is concerned that the cause of the OSA is hypotonia instead of mechanical obstruction and recommended pulmonology evaluation for consideration for bipap. He's also concerned about the risks of anesthesia with mito and that the surgery may not fix the problem. Saw pulm today and he is going with the standard treatment of sleep apnea in kids - take out the tonsils/adenoids and if there's still a problem then treat with CPAP... said since she did fine with anesthesia for another procedure that she should do fine with future anesthesia... He has little experience with mito and I'm not sure I'm comfortable with that take on things. Anyone with experience with this? Suggestions? Concerns??? I've booked a 2nd opinion consultation which will take place in Oct and in the mean-time we're starting cpap.
LisaK's picture

LisaK

09/30/2011

Hi Morgan's Mom, How is it going with CPAP? When I read your article I thought, "why not do CPAP for awhile and see how it goes?". Did they use it during the sleep study and did it improve the apnea? Obstruction can be caused by many mechanisms, including but not limited to tonsils. I have Mito and do not have "obstructive" sleep apnea, but use CPAP because my muscles for breathing tire and my nervous system starts to "forget" to inhale. This is because my cells are not supplying the muscles and nerves with needed energy. CPAP has helped me and I had more energy the very next morning! Great idea to get a second opinion and would be helpful to know exactly what is mechanically obstructing your daughter's airway. Hope you've noticed improvement! Lisa
morgans mom's picture

morgans mom

10/19/2011

Thanks, Lisa, for your reply - and for the follow-up message as I'd missed your post! We saw the 2nd opinion in Stanford and the ENT wants a lot more info before moving to surgery which is comforting... the pulm/sleep specialist tried her on cpap and bipap in the office instead of randomly ordering one and she tolerated bipap the best... started last week.. first night was awful... mask kept leaking, so the machine kept alarming, but the company came out again with a new mask and it has worked great. So far, so good! We'll do the titration study in December and follow-up with ENT and pulm then, then see genetics in may and go from there... Thanks for your input. appreciate your input on tai chi as well. I have MS and finding enough energy is always a daily struggle - will look into that!
LisaK's picture

LisaK

10/25/2011

Glad to hear surgery is on the back burner for now. I found a mask through www.cpap.com that's wonderful. When I worked on pediatrics (RN) we had many problems with fit, comfort and toddlers removing the mask because if it. I was not looking forward to using one myself - but found "SleepWeaver Advance Nasal CPAP Mask with Zzzephyr Seal". It's made out of parachute material and the air actually causes the seal to fit any size or shape, even those with beards (not that I have a beard!). It cost $99.00, but worth it for me. Also comes in colors - even leopard print (I chose pink). I wished we'd had them in on Pedi. We could have drawn animal noses in marker on them for the kids! It would have been comfortable AND fun! Glad to here you may consider looking into Tia Chi and Qigong. Life is especially challenging for you and your family. MS is one that responds well (nervous system & muscles) to this type of therapy, too. If you do try it, ask (Dr. and teacher) if Morgan can participate on some level. Kids seem to love the music and movement. They are "naturals"! Good luck to all of you - tell Morgan I said hello and I'm wearing my mask right now! Hugs to all, Lisa