Central Sleep Apnea + Autism

As for cpaptalk access....I had a bad night last night and I just got up and no problem BUT that it has on occasion been down and I have had similar problems. If it's a planned website downage...we are usually warned but not always and sometimes crap happens and it goes down on its own and we can't do anything until it gets fixed. This has happened before...it's not a common occurrence but something in the forum software may have broke.

I was not notified of any planned downage for maybe some sort of update or work on something but that doesn't mean much. They could have been doing something and think it was a brief thing that ended up being not so brief. Either way....they are rare and when you can't get on the website with 2 computers and both those computers can get on other websites without issues....you can pretty much blame cpaptalk website and all you can do is keep trying. That's what I have had to do in the past. Eventually they will get it fixed.

So your son had a home study and the accuracy of those depends on the type of home study done as in comprehensiveness of the data it collects.
See here for explanation of the various home studies
http://freecpapadvice.com/home-sleep-tests
Obviously I don't know which type he had and you might not....do you have a copy of the entire report and not just the summary.
If it didn't measure sleep status and only measured air flow.....and if it wasn't reviewed by someone who could discount awake breathing stuff because sleep status wasn't part of the data collected....it could have pointed to more OSA events than were actual real events.
Home studies are really good when they can collect sleep status as well and when someone who knows what to look for actual reviews the data and they don't just rely on a computer analyzed report.

Add in the fact that I don't know the criteria used for a 14 yr old to establish OSA diagnosis unless the raw data was blatantly obvious...I am not sure that I would know even if I had the raw data. I can't say one way or the other for sure that OSA is a real diagnosis.
I would have to defer to the pros on that one....if they had sleep status data available on that home study.
I always question home studies that don't collect sleep status when the results are borderline in diagnostic criteria numbers.
When home studies just measure O2 levels and air flow....opens up the possibility for false positive flagging. Now sometimes the results are blatantly obvious but sometimes they are borderline and that's when we question them.

With pediatric OSA...pretty much any apnea event they worry about...as long as it was a real asleep event but I don't know if they treat a 14 yr old more like a 6 year old in terms of establishing diagnostic criteria or if they allow more real asleep events before they consider it enough to earn the diagnosis. And then we add in the autism factor and I am way over my head in what to know or understand.

I have a friend who is a sleep tech and I am going to reach out to him and ask him to review this thread and see if he can help clarify some of the questions in my mind and probably yours....but I can't guarantee how quickly he might get my message. He doesn't come here often and I don't have his private email to get his attention sooner.

I haven't yet reviewed the Thursday night or Wednesday night details in great detail but from a quick scroll through...pretty much like what I saw with the Friday report. I don't expect it to be any different.

I don't see enough real asleep events of any kind of any duration long enough to affect his oxygen levels though. 10 seconds of not breathing while asleep just isn't long enough to impact O2 levels unless someone has known respiratory problems of fairly large significance which is part of the reason why I asked why he was seeing a respirologist....trying to figure out if there were known lung issues that might be impacting things.

I am fairly confident in saying your son doesn't have central apnea though. I know a lot of centrals are being flagged but those are awake pauses in breathing. That sort of thing happens often with children and adults and we do it and don't even realize it. But even the times he does pause his breathing...not long enough to really cause an impact on O2 levels.
It's actually carbon dioxide levels in the blood that cause the brain to trigger the "breathe" signals anyway...not O2 levels.
When he holds his breath long enough the brain will eventually see the carbon dioxide levels as being too high and the body will breathe out of reflex. So while they look impressive on the report while awake...they really aren't a problem other than pointing to the obvious more awake breathing than we want to see. The brain will send the "breathe" signal long before anything really impacts the O2 levels.

I don't know much about autism itself other than you are one helluva dad to tackle and deal with what you are having to deal with and without much support from the wife who has her own issues...which by the way...go ahead and send me her SD card stuff when you have a chance but maybe give me a couple more nights of her details so we have a greater chance of seeing both a good night and a bad night for her.

Let me go compose a message to my sleep tech friend and get it sent.

Thanks yet again Pugsy

I just uploaded my wife's SD card here:

http://www.spellingbeewinnars.org/rose-card.zip

Please look at the obstructive apnea events from last night. There is one that is 111 seconds long.

Another thing I didn't really go into. My son was tested at 6 years of age and had seizure activity under EEG. We have never seen him have an EEG and we went though quite a bit of trouble with 4 neurologists. One turn out not to be a real neurologist.

One put him on Valproic-acid and we found out from the next neurologist that it dos not even target seizures in that part of the brain. One put him on Gabapentin at 300mg and we found out later that is doesn't even control seizure activity until 1200mg

Do you think we could be having seizure issues ? Wouldn't those show up in OSCAR under "clear airway" events? My wife's 111 second one was under obstructive.

I am just loading my son's plain old CPAP data from the past year into OSCARs. It is 1.3 GB.

This is so interesting.... and life changing, thanks again

Woah! help!

I am just going though my son's data and I have quickly found over a dozen days were his obstructive apnea events were 120 seconds.

Over and over again yet there is not a single one that goes to 121 seconds.

Is this because the software developers are assuming that no one goes past 2 minutes for a single apnea event ? and if so, does that point to a different medical condition ?

and all of this is WITH machines, my poor daughter is untreated and likely has whatever the hell this is and has no support beyond a bumper belt like setup(she won't wear the real thing)

HalfMadDad wrote: ↑

Sun Aug 30, 2020 9:42 am

Do you think we could be having seizure issues ? Wouldn't those show up in OSCAR under "clear airway" events?

I don't know the answer to those questions. I have zero experience with what flow rate looks from a cpap machine data during a seizure but my gut tells me it would not look like awake breathing.

I did get a note sent to my sleep tech friend....he will see this question also as I asked him to read the entire thread...

Now to go get the wife's data downloaded and start that process. Not sure how much I will get done right away....my mom just called and I have to go check on her in a bit. She's part of the reason I had a bad night last night...she called me at 3:30 AM and of course I couldn't get to the phone and she didn't leave a message...and I didn't call her back because this happens often...and when I asked her why she called me at 3:30 this morning she told me she didn't. She's 88....failing...physically and mentally and I know that what she is worried about is normal for her and I just told her that yesterday morning but she has forgotten.
I had a hard time going back to sleep after the 3:30 call. Didn't get much sleep last night.

What machine was the old machine?
Post and image of one of those 120 second OAs.....at about a 5 minute segment.

it is a Resmed AirSense 10.

I will photo edit a picture. Please look after your mom and get some rest. My wife has been sick for our entire 17 years or marriage and in fact 20+ years before it. I don't believe this is life threatening. You need to take care of yourself too

Which AirSense 10 model...there are several. Cpap, Elite, AutoSet....which one?

The 111 second OA from Rose...not real..not anything really. Most likely data glitch or software reporting calculation error.
She's got a lot of OAs around that 111 second flagged event that look squirrely. I need more time to investigate.
Same thing might be happening with the son's data from the old machine.

Take a deep breath and relax....I think what you are seeing might be data file glitches. I know for sure the 111 second thing is not correct.

More later...

I may have to put the SD card contents into ResScan which is a whole new level of work because I have use a real SD card which means I have to create one.

I would give you a ResScan download link for ResMed's software but it's Windows only.

Okay thanks!

It is an AIrSense "ForHer"

I have an extra computer here. I will setup WIndoze on it today. Please send the Resmed link when you can.
Again, please take care of yoruself

How in the hell did they come up with those settings for your wife?
I will look more closely later but she is having some probably real asleep OAs of short duration but there's a lot of flagging happening when I don't see any flow reduction at all. Doesn't make any sense but she is having some flow limitations and the machine wants to go higher but it can't with the current settings...and there is some obvious awake flagging going on.

What kind of respiratory issues does she have?

She is having some leak issues...what mask does she use?

Give me a minute and I will get you the ResScan link. It's a bitch to use but you can probably figure it out. In the download install there is a tutorial you can read. I suggest you read it.
I will send it via PM....when I got it I had to agree to not make it public and I will be sending a link for the 5.9 version and not the latest 6.0 version. No real difference except the 6.0 version now requires a password to open and I heard it was a real PITA and problematic.
I won't even install it. ResScan is for doctors and DMEs who see lots of people...most of it is office stuff and not patient stuff. I keep it mainly to verify something weird that I see on OSCAR or in the past SleepyHead which OSCAR is based on.
That way I can either blame the software or the machine.
Data files written to the SD card by the machine can sometimes get corrupted and sometimes I see weird stuff on both software programs.

Okay thanks!

Actually I am to blame for the settings. The prescribe settings for pressure was 12/8 but she has a facial neuralgia like condition. She has had a CT scan and they can't find it but the pain is there anyways. She can't really go above 9 cm/H2O without significant pain so I set it to 9/5. looks like it is going above 9 anyways.

I am looking at my son's 120+ second events and I think it could be nonsense from when he is awake. Give me a little more time. He pulls his mask down to pick at his nose and the mask is around his chin. It could be blocking all flow. I will send over a screenshot soon either way.

I created 3 screenshots for a 120 second obstructive apnea event. I uploaded to my one of my websites rather than overwhelming the forum.

Please see:

http://spellingbeewinnars.org/flowrate-to-flowlimit.png
http://spellingbeewinnars.org/vent-to-volume.png
http://spellingbeewinnars.org/insp-to-bottom.png

I think this might just be him pulling his mask down but my wife does not do this! you are probably right and it is some sort of data error.

Okay...a medical reason for the max limit restriction...we can accept that.
We don't want to add pain which would of course probably create a worse sleep problem than the sleep problem we are trying to fix.
Sometimes we just have to make compromises.

I am off to my mom's....be back later.

After I look at her reports I might have an idea about minor tweak to help the real asleep events that won't involve increasing the max but I need to look at things in more detail and think about it more. We might essentially have to take the auto adjusting out of the picture...it's essentially doing it anyway.

I take it she doesn't have any lung issues that restrict her breathing or MS or MD or anything like that????

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.

Great thanks!

oh, I missed a question.

She has a full face mask. It is a small Simplus