Central Sleep Apnea + Autism

HalfMadDad wrote: ↑

Fri Aug 28, 2020 8:45 am

I am also not sure if an apnea event is just an apnea event and if one person stops breathing for 1 second and another stops for 20 seconds that they are the same.

Not the same at all, you probably "stop breathing" for almost a second on every breath.

Also, there is a huge difference between a *central* apnea and an obstructive apnea. Hold your breath for 10 seconds...no big deal, right? That's a central. Now, pinch your nose shut, and try to breathe, fight it, for 10 seconds... Very disturbing, right? That's an obstructive apnea. Obstructive apnea's disturb sleep, waking people up (even if they don't remember it).

A few centrals are nothing to be concerned about, the only real concern is when they happen over and over and over, to the point that your oxygen levels start to drop. (I can hold my breath for a minute and hardly see *any* change in my blood oxygen levels.}

Hi Pugsy

I just sent the data to you in a private message. I was not sure if I should post it to the list.

I just opened it up in OSCAR and the software is awesome! I am so grateful to the people that wrote this

Thanks palerider.

I really love this forum! thanks to everyone

HalfMadDad wrote: ↑

Sat Aug 29, 2020 12:43 pm

Hi Pugsy

I just sent the data to you in a private message. I was not sure if I should post it to the list.

I just opened it up in OSCAR and the software is awesome! I am so grateful to the people that wrote this

I'm going to stick my nose in here. If the data you're referring to are Oscar charts, one reason to post them here instead of a pm is that then other people can learn from them and from the responses of forum members to them. In other words, you could wind up helping other people via posting.

He sent me the entire contents of the SD card so I could plug it into my software and zoom in on the flow rate.
It's a bit of work for me but in the long run quicker and easier for everyone because the daily image does nothing but raise questions.

He didn't send single daily screenshots. I got a zipped copy of the SD card...
So I had to download, unzip, create a place for OSCAR to find the contents, create profile, upload that profile from the place I put the SD contents....then I got the reports.

Miss Emerita....do you wish to take your education further and participate in that level of helping? Is it time to take another big step?
You are smart enough to do it, that I have no doubt.
Palerider also can do it.

If anyone wants to try the OP has put the compressed zipped file on his website and I bet he would send you the link if you asked him to.

But from what I have seen....the bulk of the AHI in all categories is so blatant SWJ sleep/wake/junk false positives that a blind man could see it. I need to do a manual count but from a quick glance..probably 90% of the flagged events are false positives.
The manual count and more looking will be later....I got a few chores I need to do.

Hi Miss Emerita

Okay let's do it. I didn't fill out much of his profile so I don't think I am posting sensitive data.

Please download this zip file:
www.spellingbeewinnars.org/Pugsy.zip

I am just going through it myself and I am floored. It looks like he is having really high apnea events and then he wakes up and he doesn't go back to sleep. I can now see when he is sleeping and when he is not as there should be some apnea events and there are gaps where there are none.

If we stop using his mask at nap, his event count will be higher as there is 1 hour of use per day where he isn't really sleeping anyways. I don't think he is sleeping more than 4 to 5 hours per day yet he just lays there and says nothing for the other 3-4 hours while we sleep.

Granted, the past few days have been worse with my daughter than usual.

Thanks very much-Pat

Here is last night's report.
The brief session at the left side....he was asleep briefly and had what appears to be one real asleep OA that probably caused arousal/awakening and everything after that first OA is SWJ and doesn't count because he wasn't asleep.

Thanks very much again Pugsy

If the apnea events are SWJ but they span many hours could that mean that my son(and likely my wife and daughter too) do not have apnea but some sort of insomnia that causes are large number of macro-awakenings to occur rather than micro-awakenings? I wonder if we could use a medication for this.

He was on gabapentin for years but it did not seem to be helping anymore. I cut it down in spring 2019 and then we had severe mood issues in summer 2019 and I resumed to no avail.

He had a terrible summer last summer and then calmed down in late September. With covid, he was fully out of school from March 13th 2020 and was doing well with his whole world shredded. Then in the middle of June things ended up going downhill again and I don't know why. He had his best day in two months this Wednesday after wearing the BPAP for the first time Tuesday night.

He is on nasonex and his breathing in the day seems clear unlike most other summers.

HI Pugsy

Is the brief session you are referring to the time he fell asleep at 9:30PM? The piece to the far left at 12:00pm is his nap.

What time is his first apnea event?

Thanks again

I cannot make a determination as to whether he really has sleep apnea because these reports are with treatment.
I can't tell how many real events he would have had without these pressures.
What I can say is that the real asleep apnea or airway related flagged stuff is extremely minimal using the machine and it's not like he's getting sub optimal therapy and the pressures need to be changed.

Now it is possible to just have crappy sleep from a lot of things totally unrelated to airway caused crappy sleep.
We all know that.

Now later on I plan to add in some custom user flagging restrictions to see if there are possibly some very minor airway flow reductions going on that might be a factor but I zoomed in pretty close (closer than the image you see) and his breathing looks extremely regular while asleep.
When we use custom flagging we look for flow reductions that don't even make criteria for a flow limitation.

So is he on gabapentin now....if not...how long ago did he quit it?

Did your son ever have an in lab sleep study or was the sleep study using a device at home....without any cpap being used?

HI Pugsy

The kids are at the door waiting for me to take them somewhere.

just quickly, I weaned it back down and he has been off gabapentin since oct/nov 2019

Thanks

I didn't know time zone to plug into the software...so I used central time zone which is my time.
The zoomed in section is from the nap on the far left side.
You can tell which section I zoom in on by looking at the white bar and it's relation to the events graph on top.
The Events graph doesn't zoom...just everything below it.
So at 12:22 is the first real OA...and he was obviously asleep right up to that time.
Now some others there were random arousal breathing big gulps of air easily seen prior to a flagged event but when we see the big gulps of air...we aren't asleep and if something gets flag immediately after an obvious arousal...it's consider SWJ as well.

Pretty much you have to have evidence of asleep breathing right up to the flagged event to know it's a real asleep event.
For the nap he fell asleep rather quickly and you can see the rhythmic breathing right up to the flagged OA. Then after the flag he wasn't fully asleep...maybe half asleep or something like that and that's not uncommon especially with naps. We don't often sleep deep...just a light doze and easily aroused from sleep but might not realize it. That's probably what happened here.

Go do your chores....I got my own to do. More later.
Off Gabapentin long enough for it to be out of his system which was my main concern. That's nasty crap. I gave it a 2 week trial last month.....horrible side effects besides making my insomnia worse instead of better.

Closer examination of the Friday report....the long sleep session 22:00 to 03:15 roughly on the right (which is actually broken up a couple of short times) I found 2 probable real asleep OAs and one central. They weren't classic though. No recovery breath at all after the flag. I am unsure of the significance of the lack of recovery breath. Widely spaced apart during the 5 hours of use and not anywhere near close together and they barely made flagging criteria of 10 seconds..and I think one was 11 seconds.

3 events that appeared to be asleep when they happened...2 OAs and 1 central flag while asleep...5 1/4 hours...gives us an AHI of 0.57 approx.
I did turn on user customization of the flow rate evaluation low point at UC1 at 20% and UC2 was at 50%. These don't meet criteria to be used in the AHI. As I suspected...lots of UC2 and UC1 flagging during obvious awake/arousal breathing..... but absolutely zero UC flagging of any kind during actual sleep.
All the UC flagging occurred during awake/arousal breathing along with the bulk of all the other AHI. Also similar number of UC1 flagging at 20%. Roughly about half UC1 and half UC2. He's awake when these happen and I don't know the significance of this other than it's simply irregular awake breathing which is normal for everyone to have irregular awake breathing.

One OA and the one Central were all by their lonesome in the asleep pattern of breathing and there wasn't any arousal breathing happening near the flags. Now 1 OA did immediately precede obvious arousal/awake breathing so I suppose it wouldn't be impossible for a 10 second OA all by itself to cause an arousal....but he has so many other obvious arousals with absolutely no evidence of any airway flow reductions that I have my doubts as to it being the cause of the arousal.
Some arousal segments are short lived....and he goes back to sleep rather quickly...some are rather long so it is pretty obvious he is awake.

My gut feeling is a lot of spontaneous arousals are happening. I just don't see them being airway related ...at least from the data seen here. Crappy sleep quality from unknown reasons but at least on this one report I don't see it being airway related. When he is asleep his breaths are near perfect.

How was it determined that he use this current setting with this machine?

If the images here and above are small looking and hard to see....try clicking on the image to enlarge it and if that doesn't work right click your mouse on it and choose "view image" from the menu.

Here's a good example of arousal/awake SWJ with the UC flagging turned on...and a good example of asleep breathing.
It's a bit more zoomed outwards than I normally show but I wanted to show all the arousal breathing preceding the asleep breathing.
He went back to sleep around where I have drawn the red line.
Now later not long after he went to sleep I spotted this....11 second and flagged as a central. I have to go back and edit my post above...I originally counted this as a real OA because it's sometimes hard for me to see the difference between the O and C on the graph flags. They are tiny and very faint and hard to distinguish between them sometimes.

Wow, thanks yet again Pugsy. I am going to have to read this a dozen times over to full understand it.

Sorry for the delay, to answer your question properly. He was diagnosed with apnea with a study and without a CPAP.

Back about 6 to 7 years ago he had an overnight sleep study and it was determined that he did not have sleep apnea. He actually did but it was determined that it was benign as he would gasp for air and then stop breathing, not the other way around.

In February 2019, he had another and he was found to have problematic apnea. We put a bumper belt on him and he had an in-home test. His results were not perfect but they were good enough and we stopped there.

There were bullying issues during the 2018/2019 school year and my daughter was very violent(and still can be) with her still largely untreated sleep apnea(and food reactions). As I was saying, she improved quite a bit with a bumperbelt like pocket sewed into the back of her sleep wear but things are still hard and I have two bite marks as of today.

My son ended up seeing a lot kicking and biting and cried a lot watching this. He still does cry but can also become violent at the same time as my daughter now, because of her, so things are getting harder.

He was having a lot of trouble at school by May 2019 and we had violence the last day of school and much more during the first week of the summer "holidays". He split my nose open when I took him to buy a basketball for no apparent reason. We had trouble pretty much everyday of summer but it calmed down a bit in August and once he was back at school, he calmed down even more to the point were there was about one aggressive incident per month from September 2019 to March 2020.

In late August 2019 we switched from bumper belt to CPAP and his doctor is now really surprised at how well he wears it, every nap, every night for a whole year.

I figured with him watching my daughter biting and kicking me and with the bullying at school, he just didn't have a safe place and that the anxiety took hold summer 2019 and that he just enjoyed being with his classmates and was depressed to be away from them.

However, when covid hit, I had both kids out of school March 13 2020 and within a week, everything he loved to do, swimming, daily grocery shopping, weekly zoo visits, evaporated, not to mention being with his classmates. We couldn't visit grandma and grandpa for 6 weeks too.

Yet from the middle of March to the middle of June, I would say he made small improvements and certainly did not go backwards. However things went bad again this year starting around mid-June and I don't know why. He has had severe allergies in the past but we seemed to have them under control with Nasonex.

So I am back to figuring things out.

and I am getting great help here!


P.S I was not able to access www.cpaptalk.com for 2 hours this mroning. I tried from various computers and two internet connections, I don't know why