CPAP mask for 12year old boy

[colomom]

Difficult situation, I feel for your family. My son went thru a similar situation although he was a bit older than your son. He had to be pulled from school for medical reasons which was really rough. His medical problems seemed insurmountable at the time but with patience and perseverance we figured things out and he was able to go back to school, hopefully soon your son will be able to return to in person school soon as well.

It’s difficult for most adults to get used to a cpap, for a 12 year old autistic child i’ld image the adjustment would be really rough. There is also the social factor to consider for a pre teen child, I know my son felt tons of anxiety about having friends sleep over when he first started using a cpap machine. My son was fortunate when he first started using his cpap, he had an amazing pediatric sleep doctor! Before doing the lab titration his doctor put him on an APAP with a starting fixed pressure of five, the data from the machine was sent to her office for her to review. Rather than having someone at the DME who likely has rarely if ever dealt with a pediatric patients my son’s doctor had her Children’s Hospital respiratory therapist help us choose and fit his CPAP mask. It took my son a considerable amount of time to adjust to the CPAP and make it thru an entire night with the mask on. I thought it was brilliant that my son’s doctor allowed him the opportunity to have a bit of time to adjust to using a cpap before doing the titration study. I wonder if you could talk you son’s doctor into doing something similar.

My son happened to also had been prescribed Zyprexa, it does suppress REM sleep. While I don’t know for certain (perhaps someone more knowledgeable will weigh in) but my observation when my son was on Zyprexa was that his OSA sounded considerably worse while taking it.

As difficult as it is to watch your child struggle if I were in your shoes I would keep pushing the doctors and be certain CPAP is the best treatment for your son before going down the self treatment route. If you haven’t already get him on the ENT’s cancellation list, hopefully they can get him in sooner.

[Julie]

Totally agree with the last sentence/para of Colomom's note... definitely wouldn't guess at anything (or spend on it) in your son's case.

However, if he ends up needing a mask, there are special 'small' ones made by ? (can't remember, hope someone else can) for smaller faces/bone structure/children.

[tan]

Difficult situation, I feel for your family. My son went thru a similar situation although he was a bit older than your son. He had to be pulled from school for medical reasons which was really rough. His medical problems seemed insurmountable at the time but with patience and perseverance we figured things out and he was able to go back to school, hopefully soon your son will be able to return to in person school soon as well.

It’s difficult for most adults to get used to a cpap, for a 12 year old autistic child i’ld image the adjustment would be really rough. There is also the social factor to consider for a pre teen child, I know my son felt tons of anxiety about having friends sleep over when he first started using a cpap machine. My son was fortunate when he first started using his cpap, he had an amazing pediatric sleep doctor! Before doing the lab titration his doctor put him on an APAP with a starting fixed pressure of five, the data from the machine was sent to her office for her to review. Rather than having someone at the DME who likely has rarely if ever dealt with a pediatric patients my son’s doctor had her Children’s Hospital respiratory therapist help us choose and fit his CPAP mask. It took my son a considerable amount of time to adjust to the CPAP and make it thru an entire night with the mask on. I thought it was brilliant that my son’s doctor allowed him the opportunity to have a bit of time to adjust to using a cpap before doing the titration study. I wonder if you could talk you son’s doctor into doing something similar.

Thank you for sharing. I was able to talk my doctor into having a mask fit for starter, although everyone is expressing doubt that my son could tolerate the mask, given his present condition. It's still worth trying, almost everyone agrees. I can set up a machine (I have a couple of Resmed VPAPs) and collect data alright. Compliance would be an issue indeed. I'll wait for Muffy/NotMuffy/SAG/Rubicon response before trying.

[babydinosnoreless]

Although I have never been formally diagnosed with it (they didn't check for that kind of thing when I was growing up), I fit a lot of the criteria for being autistic. (Older parents, socially awkward, textures really bother me especially in food). I couldn't do a nasal pillow mask. I do better with the over the nose nasal mask. (N-20). The sensation of the pillow mask rubbing against my nose was sensory overload for me. Everyone is a little different and masks are a very much a personal choice. I made a soft flannel hose cover not to keep the hose warm but for the softness to cover the plastic. Good luck !

[Rubicon]

For children, an AHI of even 1.0 is abnormal. OSA can be classified as

Mild: AHI 1-4
Moderate: AHI 5-9
Severe AHI ≥ 10

On the plus side, ETCO2 (or TCpCO2) is normal, so that's great, as is the O2 saturation 94% at the lowest with all 7 desaturations 3%.

So yes he's treatable, but there isn't the urgency that would be there if elevated pCO2 or severe desaturations were present. colomom raises an (the) important issue that getting children to comply with CPAP is often a difficult to impossible chore, but IMO you have leeway to be able to go slow and be patient and not worry like "OMIGOD! YOU HAVE TO WEAR THIS OR CATASTROPHE WILL HAPPEN TONITIE!!"

Daytime CPAP desensitization would be a great idea rather than trying to start at night where he might be tired, cranky and hey, it's dark. Use diversions like TV etc. Start with like a plain 5.0 cmH20 just to get acceptance. Fine tuning can come when compliance is achieved.

[Rubicon]

The report says 0 medication, but he was on ativan (2mg/d) and zyprexa (10mg/day). Could it explain the latency to REM?

Yup.

[Rubicon]

My son happened to also had been prescribed Zyprexa, it does suppress REM sleep. While I don’t know for certain (perhaps someone more knowledgeable will weigh in) but my observation when my son was on Zyprexa was that his OSA sounded considerably worse while taking it.

And together with that little bit of Ativan, did they contribute to the AHI?

One wonders.

See what the ENT guy has to say.

[Rubicon]

If there is a histogram available with the sleep study, see if all the events happened at the beginning of the night when medications were at peak.

[tan]

For children, an AHI of even 1.0 is abnormal. OSA can be classified as

Mild: AHI 1-4
Moderate: AHI 5-9
Severe AHI ≥ 10

On the plus side, ETCO2 (or TCpCO2) is normal, so that's great, as is the O2 saturation 94% at the lowest with all 7 desaturations 3%.

So yes he's treatable, but there isn't the urgency that would be there if elevated pCO2 or severe desaturations were present. colomom raises an (the) important issue that getting children to comply with CPAP is often a difficult to impossible chore, but IMO you have leeway to be able to go slow and be patient and not worry like "OMIGOD! YOU HAVE TO WEAR THIS OR CATASTROPHE WILL HAPPEN TONITIE!!"

Daytime CPAP desensitization would be a great idea rather than trying to start at night where he might be tired, cranky and hey, it's dark. Use diversions like TV etc. Start with like a plain 5.0 cmH20 just to get acceptance. Fine tuning can come when compliance is achieved.

Thank you, Maestro! I won't rush with CPAP then, but a decentization plan is established. It's quite challenging but getting better now than before when our son was just on 6-10mg/day of ativan in March (excited catatonia suspected). A new psychiatrist intends to get him off the meds completely by gradual taper (ativan first). Hoping to get to his pre-medication baseline sometime soon.

[chunkyfrog]

It could help to expose him to scenarios where people wear similar masks.
Divers and fighter pilots, for example.
Fantasy and adventure can promote some good feelings.

[Rubicon]

I won't rush with CPAP then, but a decentization plan is established.

AAMOF, your son may stall and invoke the "Hey, I Really Don't Have OSA So I Ain't Doing This!" Clause. Specifically, Da Rules for scoring respiratory events in children is quite different from scoring in adults (and you'll have to take this into account when you look at the D/Ls in Oscar). Specifically, apneas and hypopneas are scored if only 2 breaths are affected, and central apneas w/o associated apneas can be up to 20 seconds and discounted as normal (Time of Apnea/Hypopnea is not noted in PSG however, so this may or may not be relevant). While pediatric rules can be used for children up to 18, using adult rules can start at 13 or older (personally, IMO a cutoff of 14 is a good spot). Anyway I think the takeaway is that the level of concern would be different if he was like 6 vs 12.

[tan]

I won't rush with CPAP then, but a decentization plan is established.

AAMOF, your son may stall and invoke the "Hey, I Really Don't Have OSA So I Ain't Doing This!" Clause. Specifically, Da Rules for scoring respiratory events in children is quite different from scoring in adults (and you'll have to take this into account when you look at the D/Ls in Oscar). Specifically, apneas and hypopneas are scored if only 2 breaths are affected, and central apneas w/o associated apneas can be up to 20 seconds and discounted as normal (Time of Apnea/Hypopnea is not noted in PSG however, so this may or may not be relevant). While pediatric rules can be used for children up to 18, using adult rules can start at 13 or older (personally, IMO a cutoff of 14 is a good spot). Anyway I think the takeaway is that the level of concern would be different if he was like 6 vs 12.

well, my son won't really utter such sentences like that even at his age, but he acutely absorbs the negative attitude from all other family members around him towards letting the mask on.

Here is the histogram, while the apneas are spread out, hypopneas indeed show up more in the first half, even if the period of wakefulness is excluded and I don't know if that blip on TcCO2 around 4:00am is of any significance.



I guess we'll have to wait for ENT eval and then some.

[Rubicon]

I don't know if that blip on TcCO2 around 4:00am is of any significance.

Nah. Looks like the TcCO2 sensor got dislodged a bit, especially since it occurred at the end of the wake period during a body position change.

[Rubicon]

...central apneas w/o associated apneas can be up to 20 seconds and discounted as normal...

Well that makes no sense!

What I meant to say was "central apneas w/o associated arousals"

Haste makes waste.

[Rubicon]

In summary, you got that one area with a few desats of minimum criteria, delayed REM which is explainable, and a wake period which you probably can't do anything about (likely lab effect).

On the plus side, sleep percentages are good with a lot of N3, few arousals, only a single awakening (not counting final awakening) and overall good SaO2 and TcCO2.

IMO, I'd say the likelihood would be 95+% that rasslin' with a 12 y.o. autistic child trying to get him to wear CPAP all night will end up with him tired, you tired and a lot of family disruption.

Hey there's what the book says, and real-world application.