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Julie wrote:And for what it's worth try to keep him from sleeping on his back (pillows in behind, etc) because that provokes the most apneas.

frantic.mom wrote:His apnea-hypopnea index according to position was as follows: Supine 0, side 52.4, prone 0, upright 0.

Well, one less thing to deal with.

what an awful nightmare for any parent to go through.

Has the epiglottis been reduced enough? Airway obstruction at epiglottis doesn't respond that well to CPAP therapy. Pls see the following article.

Chest. 1987 Apr;91(4):621-3.
Obstructive sleep apnea initiated by a lax epiglottis. A contraindication for continuous positive airway pressure.
Andersen AP, Alving J, Lildholdt T, Wulff CH.
Abstract
Treatment with nasal continuous positive airway pressure (CPAP) was attempted in a patient with severe obstructive sleep apnea. However, application of nasal CPAP gave the patient a feeling of being suffocated. This was later documented by cine-fluoroscopic examinations of the upper airways with and without nasal CPAP. The epiglottis was large and lax, and upon positive pressure inspiration, it was literally blown down so it occluded the hypopharyngeal airway.

Also, does your son have a recessed or small lower jaw? If so, orthodontic treatment will help to correct this starting at age 7 or 8.

Julie wrote:And for what it's worth try to keep him from sleeping on his back (pillows in behind, etc) because that provokes the most apneas.

Wrong

His apnea-hypopnea index according to position was as follows: Supine 0, side 52.4, prone 0, upright 0

Please seek further testing. There is a condition called Central Congenital Hypoventilation Syndrome. It is in the rare disease database. My granddaughter has this. It's a genetic mutation, can be several different places on the gene, with the higher up, usually the more severe. Severe cases are usually caught at birth, sometimes it presents later though usually as a result of testing for other things, much as your son sounds. They hypercapnia is a big trigger.
It is a disorder of the autonomic nervous system, and doesn't just affect the lungs. An old fashioned name of it is Ondine's Curse, named after the nymph who was cursed to stop breathing if he fell asleep.
If this is what he has, and hopefully not, the only treatment is ventilation with sleep. AVAPS won't work. Trilogy with mask can, but not set on avaps.
Many of the kids are now being treated with implantable diaphragmatic pacemakers to stimulate the diaphragm to keep breathing.
Please look up the CCHS Network and agitate your doctor.
cchsnetwork.org

Sleeprider wrote:

Julie wrote:And for what it's worth try to keep him from sleeping on his back (pillows in behind, etc) because that provokes the most apneas.

Wrong

His apnea-hypopnea index according to position was as follows: Supine 0, side 52.4, prone 0, upright 0

Yeah thanks, we got that already.

fidget wrote:AVAPS won't work.

Why do you say that (even if he was old enough or weighed enough for these modes)?

Morbius wrote:

Julie wrote:And for what it's worth try to keep him from sleeping on his back (pillows in behind, etc) because that provokes the most apneas.

frantic.mom wrote:His apnea-hypopnea index according to position was as follows: Supine 0, side 52.4, prone 0, upright 0.

I don't see anything that said he slept on his back at all during the study. Maybe that's why supine is 0.

fidget wrote:There is a condition called Central Congenital Hypoventilation Syndrome. It is in the rare disease database.

I'll say. It's easier to win Lotto.

fidget wrote:It is a disorder of the autonomic nervous system...

See PSG results. While it did say

His sleep patterns did appear more hypoventilatory than obstructive sleep apnea.

the summary still states

severe obstructive sleep apnea

so you have to look at the sources of that first.

Besides, CCHS should have responded crisply to bilevel, but didn't (as long as he was initiating breaths, and they are saying obstructive, not central).

After that, I would look at NMD and Down's.

Sleepy Pete wrote:

Morbius wrote:

Julie wrote:And for what it's worth try to keep him from sleeping on his back (pillows in behind, etc) because that provokes the most apneas.

frantic.mom wrote:His apnea-hypopnea index according to position was as follows: Supine 0, side 52.4, prone 0, upright 0.

I don't see anything that said he slept on his back at all during the study. Maybe that's why supine is 0.

Probably.

We started after the first sleep study, making him sleep on his side.

archangle wrote:However, they don't do all the things the Trilogy will do.

But Trilogy is soooo yesterday.

You need a ResMed Astral if you want to get swag.

Morbius wrote:*snip*

After that, I would look at NMD and Down's.

Nemaline Myopathy?

strigiformes wrote:

Morbius wrote:*snip*

After that, I would look at NMD and Down's.

Nemaline Myopathy?

Neuromuscular Disease.