9 year old struggling with Sleep apnea

[sherjr]

Hi,
I have a 9 year old daughter who was finally diagnosed at the age of 6 with obstructive sleep apnea (she has had it since day one, but had very little symptoms besides not sleeping so I had a heck of a time trying to convince Dr's that she had a problem).
She is very slender, tall, smart, and healthy, but does not sleep.     She has been on cpap, pressure of  7 for 3 years without much success.   She has had her tonsils and adnoids out.    The specialist we see is apparently one of the top Dr's in Canada, but is stumped at why she is not responding well to the cpap.    On a good night, she will get an average of 4 hours sleep, but we don't have very many good nights, so its usually less than 3.    She will often be up out of bed on average of 5 -10 times a night.    Although some nights she is in bed for 12 hours, but wakes up looking like she only slept for 2.      She has had 7 sleep studies in the 3 years, and during the last one, they tried a variety of pressures, and there were signs of apnea on all of them.   So the Dr. told me to just  go on a pressure of 7 even thought there were still episodes of apnea, it was the least amount.   I am so frusterated and don't really know where to turn.     My daughter is now waking up physically exhausted, and has constant bags under her eyes.     Could this be something else???   I asked my Dr. and she said that my daughter is the 1 % that they just have no clue why she is experiencing apnea and such poor sleep.      She eats very healthy, gets ample excersise and is on a consistant routine at night.       Any help, suggestions or anything would be much appreciated, I am desperate for any feedback!!!
Thank you,
zzzzzz

[National Jewish Health]

Childhood sleep apnea is very different from its adult counterpart.  Both conditions vary in presenting features as well as therapy.  It is generally recommended to seek a consultation with a pediatric sleep medicine specialist for children whose daytime symptoms persist despite what appears to be optimal treatment of their sleep disordered breathing.

[maggiemag]

Does she have central sleep apnea?  After all those studies, surely they would have picked that up?  I am not a doctor but it seems to me that you might need another opinion, as you are not having better results.  Do you have a machine with software and result capability?  Maybe she needs bipap or a timed machine.  There is a great website with very experienced and helpful people called cpaptalk dot com.  Check it out.  It all sounds soooo frustrating, I feel for you and your daughter.

[sherjr]

Thank you!   I will check out the website.   She was diagnosed with obstructive sleep apnea, but I just came across a website with interesting information on central apnea and high altitude.   We live in a very high altitude, but moved away for a few years to sea level, and she was doing better then.    I will have to check that out a bit more.   Her cpap machine just has a card that we send in periodically for readings, so I will check into some other ones that may be more efficient also.   Thanks for the info, and the support!

[ozark]

does she struggle to get air? if so then it's probably obstructive vs central........i think central is more apneic than obstructive.........have they tested the musculature of her airway?  is it floppy? does she have any whistling sounds when she breathes at night?  maybe a pediatric ent dr is the way to go.....how is her oxygen levels?  does she have a small chin?   is she seen at childrens hospital in toronto?
I hope you get some answers soon........having a child who is exhausted from apnea for so long is  very heart wrenching
my prayers are with you

[sherjr]

THANK you for your prayers.   She used to struggle ALOT with getting air, but now she seems to just be waking up more often.   When I watch her she just sort of stops breathing........then starts again, its not the same as when she was little where she would have a gasp of air.    When she stops breathing for any significant time, she just seems to wake up.    She does make wierd noises, not quite snoring, but you can tell there is some sort of blockage.      She has only had the routine sleep tests, no testing as of yet on her airway.   Do they do that?    Her O2 levels are ok.    I am not sure about her chin, I think its normal?      She is seen at the calgary childrens hospital.    I find it frusterating to not know what to ask for, so thank you for some of your questions, I will definately keep pursuing this.   She is now trying a pressure of 8 on cpap,  and I slept with her last night, she was up at least once every hour between 7pm and 7 am, and that is only what I noticed in between my exhausted attempt at trying to sleep also!!   She trotted off to school like an ordinary day.......I could barely function!!!  I am not quite sure how she does it.   My biggest concern is the physical toll it is slowly taking on her.  She often has soreness in her joints, and chest pains first thing in the morning.    I am just waiting to get back into the clinic to see the Dr., at least I feel confident to keep trying until we find a solution.  
Thanks for the support
I am off to bed!!