Hi!  
My 6 yr old son has had sleep apnea for as long as we can remember- very mild when he was little and became progressively worse as he got older.  He has a number of other minor health issues- mainly allergies and asthma, but also has had some issues with lack of growth over his lifetime.  He is still really tiny at 34 pounds.  He had his tonsils and adnoids removed when he was 4 to try to solve the sleep apnea and hopefully help with the growth issues.  Well it seemed to help the sleep apnea some but had no impact on his growth.  In the past year we have done another round of testing to try to figure out why this kid wont grow- and as part of it we did his first sleep study to see if the apnea was mainly gone.   Well to make a long storey short- it wasnt, the sleep doc thought he might be growing back his adnoids and sent us off to the ENT to have a look.  There has been no tonsil/adnoid regrowth but ENT notice a long palate that is "funny shaped" and believes that this may be contributing to the apnea.  They (both ENT's we saw) reccomed a uppp to shorten the palate and allow better air flow.  BUT here is where my questions come in.... I cant find any info on this procedure being done in a child- they said it is not common but have you ever heard of it?  Also there is alot of neg. impressions about this surg. for adults on this site... would it be different for a child?  Also any other options out there?  

Thanks for any input-

Sue

Hi Sue:

Yeah, looking at the "boiler plate" treatment for OSA in adults, whether they are good candidates or not, is not the same as identifying a specific situation in a child.  I'd go with the surgeons' opinion.

BTW, what were the AHI and O2 desaturations in the sleep studies?  Are there other contributing causes for the failure to thrive?

Good Luck.
sleepydave

We havent been able to find a cause for the failure to thrive- we have ruled out many things through bloodwork and other test, have gotten his asthma well controlled- (no ER visits is almost 2 years YEAH!!!), have tried increasing the calories in his diet (up by 350 calories/day and NO weight gain) next stop will be another GI investigation  (we did all this when he was 3 due to stomach pain and diareah- turned out to be allergy related) but it is not likly to show anything as no stomach aches, no vomiting, no identifiable reflux ect.  The most likely culprit at this point is the apnea- but with Graeme it still might not be.

His apnea is worse when his allergies are bad- and his sleep study was done on a really good night!  No stuffiness, no post nasal drip ect.  We dont get too many of those but love them when they happen.  So his sleep study is lkely the best it ever gets.  His AHI doesnt seem really bad to me after some of the things I have been reading it is 1.4.  His O2 sats went down to 94.6% at its lowest- so not too far down either.  (But then I am used to the 86-87 he used to get with asthma attacks so I am not sure what is considered low for during sleep.)  

His sleep doc didnt think cpap would work well as he apparently takes a long time to fall asleep (and I thought he fell asleep really fast during the study!! ) and takes a really long time to get into REM sleep.  He was worried that the cpap would just make those issues worse.  I dont think it will work because he is a very active 6 yr old- even in his sleep.  He also would HATE the mask.   He is an the verge of hyperactive all the time- possibly from the lack of good rest.  I am just a little afraid of more surgery and dont want to put him through the procedure if it isnt really needed.

Hi Sue:
Yeah, at AHI 1.0-3.0 you could make a case either way.

If you do go the surgical route, make sure that the choice of airway protection during surgery is carefully reviewed and his asthma is all tuned up.  Placing an endotracheal tube in the airway of some asthmatics can get very dicey, the airway can get very reactive.  That may not be the airway of choice here, but I would certainly check that out.
sleepydave



Last edited by sleepydave on Sun Dec 04, 2005 6:40 pm; edited 1 time in total

I just wanted to pop in here really quick.  I am certainly no expert, but have you had your son tested for celiac disease?

Yeah- that was part of the reason for the scope we had done when he was younger.  His blood tests for celiac were "inconclusive" and so was his scope.  His scope was inconclusive as the doc wasnt sure if we managed to get enough gluten into him in the weeks preceding the scope (he had already been on a gluten free diet for over a year).  We went back to the gluten free diet after the scope and still kep to it.  He now test positive on allergy testing to wheat, oats and barley- so we dont plan on changing from a GF diet any time soon.

Thanks for the thought though.

Sue

Hi i just wondering if your child had been tested for Velo Cardio Facial Syndrome
My son has this and his palate is\was different as well, he has a high arch in his palate (and sub-mucous cleft) any way the genetic testing for this is only specifically for this syndrome it is called the FISH test... It cannot be done any other way...
"There are alot of different things associated with this syndrome and each child presents differently..
For my son the only real drama is the palate issues and since the so called repair of these the apnea....
His also is very small for his age, his his 41\2 and weighs 11kgs..

Good luck
Melonie