6 Year Old Newly Diagnosed with OSA/CSA

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Morbius
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Wed Feb 25, 2015 5:34 am

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.

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Julie
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Julie » Wed Feb 25, 2015 6:11 am

Well, one less thing to deal with.

Mabutu
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Mabutu » Wed Feb 25, 2015 7:36 am

what an awful nightmare for any parent to go through.

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musculus
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by musculus » Wed Feb 25, 2015 9:02 am

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.

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Sleeprider
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Sleeprider » Wed Feb 25, 2015 12:59 pm

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

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fidget
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by fidget » Wed Feb 25, 2015 2:52 pm

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

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Morbius
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Thu Feb 26, 2015 4:18 am

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.

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Morbius
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Thu Feb 26, 2015 4:24 am

fidget wrote:AVAPS won't work.
Why do you say that (even if he was old enough or weighed enough for these modes)?

Sleepy Pete
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Sleepy Pete » Thu Feb 26, 2015 4:39 am

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.

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Morbius
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Thu Feb 26, 2015 4:43 am

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.

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Morbius
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Thu Feb 26, 2015 4:45 am

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.

frantic.mom
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by frantic.mom » Thu Feb 26, 2015 8:41 am

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

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Morbius
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Thu Feb 26, 2015 7:00 pm

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.

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strigiformes
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by strigiformes » Thu Feb 26, 2015 8:53 pm

Morbius wrote:*snip*

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

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Morbius
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Fri Feb 27, 2015 4:37 am

strigiformes wrote:
Morbius wrote:*snip*

After that, I would look at NMD and Down's.
Nemaline Myopathy?
Neuromuscular Disease.