Central Sleep Apnea + Autism

HalfMadDad wrote: ↑

Sat Aug 29, 2020 7:47 am

My daughter did not sleep until 4AM after going to bed at 8PM on Thursday night and last night it was a couple of hours before she feel asleep again. My son woke up several times and was up by 4AM. I have to sleep in the same room as them and it is hell. Our sleep is the lowest common denominator between the two kids. My wife is far too weak to help so we don't really have any other choice, the kids cannot sleep in their own rooms....

I also want to replace the low oxygen alarm speaker with a headphone jack. I plan to wear an earbud all night and to roll my daughter or attend to her over and over again as she drops below the threshold. She does not appear to have tonsil or adenoid issues. Her apnea is slowing her development and it is a catch 22 as she will not wear a BPAP/CPAP mask because she cannot understand the need for it. I am hoping if I can mitigate the apnea damage by waking up to attend to her for a year or two, that she will improve and will agree to wear it. I set a vibrating alarm and I woke up every hour for 2 months in 2018 to attend to her so I know it can be done.

You are a saint for making such extraordinary sacrifices take such great care of your wife and children. Being a caregiver is a tough job. Your wife and kids depend on you, make sure that while you are taking care of everyone else you don’t forget to take care of yourself!

I’m surprised all your kids sleep studies weren’t done in lab. Your son may have had an in lab study 6-7 years ago, but for a kid that is a lifetime. The difference between a 7 year old and a 14 year old body is huge. With your son’s history of seizures I would think an in lab study with some extra EEG channels would be a good idea. Do your kids see pediatric specialists? If traveling is doable and you haven’t done so already, it might be worthwhile to get your kids a referral to see specialists at a Children’s or teaching hospital. I would guess that most docs, specialists, respiratory therapists, ect may not have the patience or the knowledge needed to effectively mange and treat autistic, medically complex pediatric patients.

Thanks very much colomom!

My son had two sleep studies done in lab and one follow up at home. My daughter had one at home test but could not wear the nasal sensor. She would never co-operate with a lab study or at least not at this point. Their software does generate a report without the nasal sensor but our doctor looked at her oximetry data and he said her oxygen drops were "quite frequent". We are caught in a bit of a catch 22 with her as she won't progress very fast without the CPAP but she won't keep it on either. She did wear it for a 45 minute nap in April. I try twice everyday.

I did ask them about seizures with both lab studies and they said they didn't see any with him.

Actually we went to SickKids here in Toronto and their "pediatric expert" dismissed everything we had to say and showed us the door. The guy we have now is very kind. He has an open mind and is helpful.

Pugsy wrote: ↑

Sun Aug 30, 2020 11:08 am

That 120 second thing for your son...data glitch for some reason. Corrupted file or he took the mask off and I don't think he was fully asleep when he did it. If you look at the flow rate on the left right before the line goes flat...he wasn't asleep.

I agree, look at the inspiration time and the traces disappear in the middle of the 'event'. glitch.

Here's Rose's 111 second "OA"....

It's not real....I don't know why it got flagged right in the middle of a breath.



I didn't get any work done on Rose's stuff last night. Was over at my mom's a lot longer than anticipated and my brain was fried by the time I got home last night. And I have to go back this morning....she's not doing well at all. Her mind is my main problem right now and I have to get in touch with her doctor today about the leg swelling stuff...long story and no time for that.
I can't even trust her to talk to the doc coherently and remember in 5 minutes she talked to him.

I have a bit of time this morning and now I will look through Rose's data a little closer with my morning coffee.
Another short night for me last night....sigh. My butt is already dragging.

Thanks palerider
He puts the mask on his chin sometimes so I am sure that is going to cause data problems. The thing is that it could obscure real problems too.


I have received such great help here, please just a little more guys...

Please see the attached screenshot from my wife last night. I am very concerned about the length of her apnea events. Pugsy was wondering if her 111 apnea event was a data error. I am not so sure. She had several long events last night up to 1 full minute.

Is it possible that my wife(and likely kids) have a neurological disorder that prevents that from detecting CO2 build up? Why is she just laying there not breathing ? why is she not waking up? Just quickly skimming the data I can find these apnea events listed in seconds:
37, 50, 45, 52, 45, 52, 45, 60, 45, 43, 43, 42, 49

all in one night of 13 AHI per hour.

She is 5 foot 92lb, should a tiny adult be treated as pediatric/teenager? She is also in what I would call a near disabled state unable to help with much more than preparing food.

Hi Pugsy

Please look after yourself and your mom. You have already given far more than I could ever have imagined!

Okay....scrolled through the bulk of Rose's Sat report.
There are times where she seems to take in some massive deep breaths at the beginning of a sleep session and when she does this it really messes with the scale of the flow rate for the times she's settled down. Makes it hard to evaluate each breath until I changed the scale for viewing....so until you make the flow rate graph a lot larger it looks like her flow rate breaths are very shallow because of the scale factor. Once I made that adjustment it was a bit better.

The bulk of her OAs are likely real but a few are SWJ awake stuff and there are a few like the 111 second flagged apnea that shows no flow reduction at all. I don't know what is going on there but she's breathing for sure. There were a couple of others where it flagged as longer kind of OA and I am sitting here wondering what the hell the machine is seeing or doing.

Anyway....enough of the OAs are real that we need to do something and she definitely has a lot of Flow Limitations that are real from the shape of the breaths. I am fairly confident of her diagnosis of OSA.

She needs more pressure...and probably more than the 9 cm max but if she can't tolerate 9 then we try to help things out by fiddling with the PS a little and see if it helps anything. Change it to 4 and see if she is comfortable with it and we can see if it helps the FLs.
Sometimes more PS will help with Fls.

What are the chances she could use a nasal mask of some sort? Often with a nasal mask people won't need as much pressure as they do with a full face mask. I have known people need 2 or 3 cm less pressure when going from a full face mask to a nasal mask...now there is no guarantee Rose will be the same but it might help and I think certainly worth at least trying. A way to get more effective pressure without actually increasing the pressure.

Her sleep quality is also on the poor side but some of it could be the untreated apneas because of the sub optimal pressures.
Some of it could also simply be her other health issues.

Morning Pugsy

I am just running out the door with the kids. This is super helpful, thanks yet again!
Please, please take care of yourself and your mom!

What were the settings on your son's AutoSet for Her machine?

Which mode....cpap, auto or the for her auto mode?
if auto or for her auto mode...what was the minimum and maximum
EPR???? if used, at what setting and full time or ramp only?
What is the humidity setting?
Use a heated hose or non heated hose?

Hi Pugsy

Thanks so much for helping, especially when you have so much to attend to yourself
Here are the setting:

mode autoset for her
Humidity= 4
max pressure = 10
min pressure = 4


epr = on
er level = 3
epr type = full time
non heated hose

I honestly don't even know what EPR is. I have adjusted his pressure at times with his doctor's approval but I have not touched anything beyond pressure and humidity.

This is for his old CPAP.
Do you want the settings from the BPAP we trailing ?

My wife and kids are a mess today. My son's AHI were 5.5 and he had pretty long ones such as 24 seconds. The BPAP pressure is 12/8 just want the doctor ordered. It is not helping.

EPR = Exhalation pressure relief (I believe with 3 settings), for people who have trouble exhaling against the set pressure. If that is not a factor, you could try it at 2 or even 1 to see if it makes a difference to anything.

And the humidity setting again is a comfort thing, not mandatory in itself, and depends on how much humidity is present where you live (e.g. Arizona vs Seattle) and/or the season, and can certainly be adjusted.

I would think 4 as the min. pressure setting is very low = many have trouble just inhaling at that (machine's default low) level and would raise it to e.g. 6 to 'do the job', but see if Pugsy agrees. I'd also raise the max to 15 or even 20, but see what she says if she comes in today. Otherwise I would still do the 4 to 6 for tonight and see if it helps.

Can I see a recent detailed report from your son's AutoSet for Her?
Just one night screen shot. I don't need the entire SD card....at least not now.

EPR...think of it as PS on the Bilevel machine. Difference between inhale and exhale.
With EPR there is a drop from the IPAP/inhale pressure....with PS the difference is made adding to EPAP. But the end result is the same and you end up with 2 different pressures...one for inhale and one for exhale.

While PS/EPR is often thought of as "just a comfort feature"....there's really more to it than that. It can impact FLs and gas exchanges and if the minimum pressure is low and we use EPR and have a further drop during exhale it can allow OAs to sneak past the defenses.

I know the current bilevel settings as I can see them on the detailed software reports.

Man...they made a big change with your son depending on where the machine spent the biggest part of the night.
Essentially if the AutoSet could do EPR of 4....what they did was make the minimum IPAP pressure 12 with EPR of 4...that would be what the current bilevel settings translated into autoset settings.
Geez....that's essentially a change from IPAP of 4 to IPAP of 12. I don't know that I could sleep so good with that big of a change after using the 4 minimum for so long. That's a really big change.

I need to see an old but recent AutoSet report....and do some thinking.

Julie wrote: ↑

Mon Aug 31, 2020 8:00 am

EPR = Exhalation pressure relief (I believe with 3 settings), for people who have trouble exhaling against the set pressure. If that is not a factor, you could try it at 2 or even 1 to see if it makes a difference to anything.

And the humidity setting again is a comfort thing, not mandatory in itself, and depends on how much humidity is present where you live (e.g. Arizona vs Seattle) and/or the season, and can certainly be adjusted.

I would think 4 as the min. pressure setting is very low = many have trouble just inhaling at that (machine's default low) level and would raise it to e.g. 6 to 'do the job', but see if Pugsy agrees. I'd also raise the max to 15 or even 20, but see what she says if she comes in today. Otherwise I would still do the 4 to 6 for tonight and see if it helps.

He's not even using the Autoset right now. He is currently using a loaner Bilevel VAuto that he just got last week.
I was only wanting the AutoSet setting information now to compare it to what he is using now with the bilevel and he does have a higher max available but it doesn't really go there.

So no changes in the AutoSet settings until if/when he goes back to using it and we get to see what the machine is wanting to do anyway.
I have my doubts as to whether it ever went to the max of 10 when asleep. Now it might have done it for the false positive flagging but that doesn't count as therapy for awake events. I don't know until I see more of what was happening when he was on the AutoSet...in terms of sleep quality and any apneas flagged.

No rush for the info I asked for. I am heading out the door to go back to my mom's place and I anticipate a long day again.

Thanks Julie!

and thanks one more time Pugsy. I am attaching a screen shot from one of his last nights with the plain CPAP. He had 5.43 AHI.

I zoomed in on one of the longer apnea events. Please let me know if I should have done this differently.

I also uploaded their current as of today SD cards and my son's CPAP SD card. Warning the plain CPAP data is 1.3 GB.

http://www.spellingbeewinnars.org/ulan-bpap-card.zip
http://www.spellingbeewinnars.org/rose-bpap-card.zip
http://www.spellingbeewinnars.org/ulan-plain-cpap.zip

Even if it's not helpful here, I wonder if it is good practice data or someone.

-Patrick