Has anyone heard of/experienced this before??  My ds went in for his second sleep study last night,  It was supposed to be a titration study w/c-pap but he wouldn't have anything to do w/the c-pap so we went oxygen only.  The bed in the previous study was raised 30 degrees (because of reflux/aspiration), as is his bed at home.  However, last night he slept in a queen size bed that was flat.   He had the best sleep in a long time and everything (unofficially) appears to have been within normal limits (AHI under 5/hr).

I'm wondering if it was just a coincidence, or if it's possible that he only has problems when he's upright or elevated.  Any thoughts??  We took a pulse/ox monitor with us on our last long car trip and his sats dropped down to 84/88 but averaged 93 so it seems that there is a problem....??

Does he have central or obstructive apnea? Our son has better sleep if he is at an angle, but he has central apnea. I know of a couple of kids that have obstructive and aren't even allowed to sleep in the car because when they are at any kind of an angle, their apnea becomes VERY severe...

Hope this helps!

He has central, obstructive apnea and hypopneas when he's elevated.  I haven't gotten the results back from his second study (flat on his back) but the tech said that he had a normal night of sleep.  

His nurse (w/the pulmo) said that I need to keep him elevated in bed which makes the reflux/aspiration better, but also makes the sleep problems worse.  I'm hoping that his doctor will give permission for us to use a pulse/ox monitor at home and in the car and to use oxygen as needed instead of trying to force him to use his c-pap.  

Thanks Tiffany!!  I really appreciate your input.  Hugs.

How old is your son?

I would also recommend wedging him into bed on his side. This can help with the apnea and with the reflux. We also swaddled Isaac until he was about 1 1/2 years old when he had trouble sleeping and it helped a lot!

Let us know if you have more questions! This forum is full of helpful and insightful parents who have been dealing with all of this for quite a while...

Tiffany

He's 4 and is the wiggliest little boy I've ever seen.  I don't think I'd be able to keep him in one spot or on his side...sigh.   Thanks though.  :)

I can understand that. Has he ever been on Reglan? Our son was suspected of reflux, but nothing seemed to help until they put him on Reglan. Apparently, the muscles in the stomach don't talk to each other so things come back up, mimicking reflux.  He was on it for about 3 months and then quit cold turkey. He hasn't had a single problem since.

Just a thought!

Tiffany

I wonder if his tongue is obstructing his breathing?  When sleeping sitting up, does his head/chin fall forward?  Has an ENT looked at his tongue & uvula to see if they are larger than  normal?  Does your son have low muscle tone?

My son has low muscle tone and a 'slightly' larger than normal tongue & uvula.  None of his obstructive apnea occured when he was supine---only on his side (which is oppossite of most people).  Also, he will sometimes raise his chin high while he is asleep, usually he is laying on his side when he does this.  I think the position helps his tongue to fall back and clear his airway.....maybe it's similar to what your son experiences w/a flat bed vs an elevated one?  (I don't know how you'd balance that with the reflux problem tho'.....he has reflux during the night even if he's not eaten/drank (?is that the word?) for at least an hr. before going to bed?  And even w/medication?  If he's not on med for reflux maybe that would be the way to address both the reflux and the apnea.

just some ideas,
Tammy

He has lots of dx's so he's a pretty complicated little boy.  Besides the sleep problems and the reflux, he also has Eosinophilic Esophagitis, Sotos syndrome, Ehlers Danlos syndrome, motility issues, etc.  He does have low tone, but that is improving with lots of therapy.  Because of the reflux/aspiration and food allergies (EE) he gets all of his food through a feeding tube.  At this point it takes us between 12-15 hours each day on a steady drip to get enough calories into his little body.  If I up the dose at all, the reflux gets worse because of slow motility.  I've got to keep him propped up because the risk of aspiration is too great.  The meds do treat the reflux, as far as burning or pain goes, but they don't make it go away.  

I don't think his head/chin fall forward when he's sleeping upright, but I'll watch for that this week.  I'm hoping that we can get supplemental oxygen and a pulse/ox monitor for him to wear when he's sleeping.  Any thoughts??

Hi,

I thought he might have other issues since you mentioned a special needs car seat.  So, he is on a feeding pump?  I've read about an infant w/PHACES who has hemangiomas in her esophogus, stomach and is fed by a pump.  They have to adjust it very carefully to get enough calories, and still prevent reflux.  When she has reflux she coughs and gags and a few times has turned blue---when she is sitting up in her car seat.  They were puzzled about the blue episodes in the car seat, not sure what the drs finally decided about that but this baby was on oxygen all the time but was able to wean to nights only.  

Although the O2 won't affect the apnea, it would give him the air so that would be good if he can't tolerate a cpap, or if he doesn't need a cpap.  How long does his oxygen stay below 90 when it drops?  I believe this is how they determine how serious it is.  Since he still ave.'s 93 it may be for very brief periods and if they don't happen very often it may not need treatment.  But, if he desats frequently, even for brief periods I would wonder too if he needs supplemental O2.  I believe that oxygen is usually not prescribed unless the desats get below 89 for more than 5 min.  That's what I was told re: my son, but he is an adult.  The DME said insurance will not pay for the oxygen is the desats are less than that, and the pulmonologist said it wasn't needed for the brief and infrequent desats (one down to 77, others 88 & 89) my son had.

I think if he will tolerate the cannula, and if there is a way to pay for it, and as long as it is not TOO much oxygen for him, then I would probably want to give it a try and see if it makes a difference in the desats....and if it gives you some peace of mind.

Hey Shelee, i don't have much advise to offer other than I am sorry that you are going through this. I think we are pretty much in the same boat as you as far as getting some sort of treatment for Quinn. UGH!!!

On an up note, Isaac's new ped is insisting that he get a monitor at home (we don't know what causes his apnea, so we can't treat it) and is willing to do the fighting with insurance to pull it off!!

My brother's neuro and ENT both think he might have low muscle tone in that portion of his neck and so the muscles relax too much and collapse into his airway...Something to think about!