Central Sleep Apnea + Autism

[HalfMadDad]

Hi Pugsy

Okay, I will buy this mask whether she likes it or not. She is so cheap and would rather pin her dollar store flip flops back together than spend any money on herself...

[Pugsy]

Are you talking about buying the Bleep?
If so...I need to point you to some videos on fitting and if getting from Amazon you have to buy the ports and frame separately.

[Pugsy]

I got the new files download late last night. I need to go unzip them and put them in OSCAR.
So give me a bit.

[Pugsy]

Okay....I have the son's Autoset files in OSCAR and I will look closer later. Yes...it maxes out often at 10 cm but from a quick scroll through the machine is again responding to awake flagged stuff.

What I need to find is an asleep real event at a pressure less than 10 cm and that's going to take some time.

I have a hair appt today and then I have to go over to my mom's again. So most likely this evening.

Right now....what I suspect is the the son's reports from the Autoset....again the bulk of the AHI is going to be awake flagged events and they simply aren't important except to point to the poor sleep and I don't think the poor sleep is airway related but I need to have some time to look at the flow rate up close when the lower pressure of 5 ish is being used and see if there are signs of air flow reduction in the flow rate. His flow limitation graph is a bit active and part of the driving force for the pressure but he's in the for Her mode and those graphs always look a bit ugly.
What I want to look at instead of the graph is the shape and pattern of the breaths themselves and see how much might be real flow limited. Your wife's was easy to spot.
On the bilevel your son's breaths looked normal.

[HalfMadDad]

Okay thanks very much Pugsy.

Yes, if the Bleep is working well for you, I might as well buy it for my wife.

I was going to call these guys:
https://www.cpap.com/productpage/bleep- ... -cpap-mask

Please take care of yourself and your mom

[Pugsy]

I don't know if these folks ship internationally but you might check.
They have the new upgraded hose and the diffuser
https://makesleepeasy.com/collections/p ... -dreamport

Amazon will of course ship internationally I believe.

If you run into trouble...I can ship to Canada. I have mailed stuff all over the world.

Cpap.com will ship internationally but I don't think they have the new longer more flexible hose but there are other hoses that will fit or the new hose can be purchased separately if the shorter hose is a huge problem. It wasn't for me but it was for some people.

We can also make a home made diffuser out of a ResMed filter if needed...or even some plain gauze.

https://bleepsleep.com/
This is the home website for the Bleep and under resources are some videos for fitting. You are going to need to watch them.

And when you have time we have a huge thread with lots of hints and tips and discussion about it.
It has pictures of how to use a filter as a diffuser
viewtopic/t174807/BleepDreamPort-nasal- ... eep+Review

[Miss Emerita]

I was finally able to get the first zip file information into a new profile in Oscar. I have a couple of observations and questions.

A zoomed-in scroll through the flow rates show quite a lot of flow limitation, much of it unflagged. The million dollar question is what causes the very frequent arousals, and at least in some cases, one hypothesis is that an increase in FLs during the minute or so before the arousal is the culprit.

I can also see cardioballistic artifacts. (HMD: Nothing to worry about! It just means that your son's heartbeat telegraphs itself to his airway and can be seen in the little oscillations around the zero line where he pauses between breaths. I have the same thing; it's not common but it's also not rare.) The reason I mention the artifacts is that usually during CAs, the artifacts are present and during OAs, absent. I do in fact see this difference in most of the CAs and OAs flagged in these charts.

Awake breathing is much more irregular than asleep breathing, and longish pauses between breaths are common throughout the day. On the machine, these would be flagged as CAs. I'm puzzled, however, by the prevalence of OAs following arousal-type breathing. There's a lot of it, and the absence of the cardioballistic artifacts does strongly suggest these are true obstructions of the airway. I don't see any that look like breath-holding; they seem to come after an exhalation.

This leads me to the thought that the arousals aren't all wake-ups -- a number of them may just be transitions from one sleep stage to another, e.g., from deeper sleep to less deep sleep. That would suggest that many of these events are occurring during sleep, albeit in a lighter sleep stage. How many would be impossible to know without polysomnographic study.

And I echo the earlier thought that it's really striking there are sleep disturbances in two children and their mother. This suggests some kind of heritable condition. Maybe neurological, also maybe structural. I don't know whether either child would tolerate an ENT exam, but it's a thought.

None of this is helpful, I realize. HalfMadDad, there are two things I wish for you. One is that the more attentive doctor whom you now have would mobilize some specialist investigation of your son's very disturbed sleep -- ideally specialists with pediatric experience. The other is that you have some respite from the extraordinary demands that caring for your family makes on you. That's out of scope for this forum, I know, but your own sleep deprivation must be making your difficult life near impossible. My heart goes out to you.

[Pugsy]

I was finally able to get the first zip file information into a new profile in Oscar.

Which file did you download...the cpap for the son...those reports are from the AutoSet for Her and in the for her mode...and it always makes a big to do about the flow limitations because that mode just does. They aren't really as bad as they look but he does have evidence of a few while asleep.
The obvious awake stuff....simply has to be ignored except for again...it points to poor sleep but I don't think it is airway related.
And yes...some cardioballistic stuff as well but we both know it means nothing except screwing with the respiration rate sometimes.
I saw it a little bit on the bilevel reports.

I haven't had a chance yet to do a detailed review of the Autoset flow rate stuff to see if any potential airway related issue precede arousals. That will have to wait until tonight. But from a quick scroll through of a couple of nights zoomed in....the bulk of the flagging was awake/arousal related. Now even on the bilevel he had a handful of real events so there may be a few as well on the AutoSet.

What I don't know yet is how many is too many for a 14 year old with autism complicating things. I am working on trying to figure it out and have reached out to a sleep tech friend but he isn't online all that much so I haven't heard back yet.

More later....got to go get beautified and then back to my mom's....and then I can sit down and really look at the AutoSet data up close.

[Pugsy]

Oh....I am comfortable with saying the wife has OSA...and she obviously needs more pressure but unable to tolerate the pressure she needs. So we either accept it as the best we can do or maybe try a different mask and see if we get lucky and have more effectiveness with the nasal mask at the same pressure.

The son....I don't know because I don't know how much is too much for a 14 year old.
A 6 year old yes...but I don't know about a 14 year old or how big he is and all that stuff.
So I don't know if 3 real asleep events is still too much for a 14 yr old or not.

[HalfMadDad]

Hi Pugsy

So 55K + posts are not enough, you have to mail stuff around the world !? Why are you not a doctor?

It is going to take me a little while to read a 38 page post but I am sure I will learn a lot. Thanks for your feedback with Miss Emerita's comments too.

My son is 5'9" and about 130lbs. Both children have super-human strength but limited energy.

[HalfMadDad]

Hi Miss Emerita

Thanks so much for your help and your kind words. Yes it is quite difficult but it is also the tip of the iceberg. I am happy we are home schooling now as that was the nightmare of all nightmares.

My wife and kids are all loving and a joy to be around most of the time but they can all flip out for little to no reason and once the underlying cause for their medical issues is found, this is going to be great, I can't wait. Without the medical piece, the autism would be a walk in the park.

Your input is highly valuable and IS HELPFUL. Piecing this together years after the fact, I think the medical community missed what you and Pugsy have found. The first sleep doctor talked about my son having a benign version of sleep apnea. He said that he was taking deep breaths and then he would stop breathing and that, that was okay because his lungs were charged with air.

As an amateur with only 2 days of experience with OSCAR, I am starting to doubt this. The lengths of the events are quite long and the breaths are no so much deeper as to compensate. Awake or not awake, I do wonder if he is losing O2, Especially as there are so many back-to-back. Maybe you guys could comment on this?

So again, we saw four neurologists. The best one, refused to order a sleep study for him and showed me the door when I tried to ask a second time. He however had interesting things to say. Again he mentioned that Gabapentin does not control seizure activity until 1200mg when the other neurologist prescribed him it at 300mg to control seizure activity and that the another neurologist made a mistake putting him on Valproic Acid as it does not even target seizures in that part of the brain.

He said this: 'If you walk into a building and you see a wire hanging from the ceiling and it is sparking, you know that it is wrong but that doesn't mean it is a fire". He said that they see lots of kids with autism that have strange electrical characteristics in their brains and that they don't know why but that it is not always epilepsy. Many kids on the spectrum sleep very poorly, a family we knew, had a boy that only slept 1 hour per night. The same doctor raved about how well my kids are sleeping compared to his other clients.

That doesn't really help me when my kids are punching, kicking and biting for no reason what-so-ever and I mean this too. My daughter was smashing her head and biting two days ago in the minvan because I would not let her pick skin off of my finger. Once it was over, she didn't care about my fingers and was back to her loving self.

There are food issues as well. Not that I would but I could choose healthy food and create terrible pain right on schedule. She reacts violently to animal fats and anything remotely sugary. My wife has no source of energy as she cannot tolerate really any form of sugar or carbohydrate yet her A1C is 5.9 and she is very close to pre-diabetes. From what I have read, it looks like sleep apnea can also affect people metabolically.

Even if my son's events turn out to be non sleep apnea, his sleep is still clearly disturbed and this is no way for a child to grow up and whatever is wrong with my son is 10X worse with my daughter. She is roughly 2 to 4 years behind were he was developmentally at the same age.

I would also like to mention that my kids wake up very easily. Sometimes they can be in a deep sleep just after they fall asleep but after perhaps the first 30 minutes, either can be awakened by the slightest disturbance. I have tried my best to make the room well suited for sleeping by blacking out the windows, using music machines to create a background sound of rain and trying to make sure my wife and mother-in-law do not wake them up but in the end, my son wakes up every single night to go to the washroom in the middle of the night and night time wake ups are common. My daughter can wake up every night for 2 hours for 4 months on end.

Could it be that both you and Pugsy are right and that he is nearly awake but not quite? if so, that also brings up the next question, if he is actually sleeping properly for 20 minutes without event, is he even sleeping well then?

[Miss Emerita]

Hi Pugsy, yes, I reviewed the material in the first zip file, which was for HMD's son. The machine in use was the VAuto with PS of 4 over EPAP of 8 to 12.

My comment about FLs wasn't about flagged FLs but about my zoomed-in scrolling through the flow rate graphs, where there are a lot of FLs that aren't flagged. Over time I've realized the machine algorithms pick up only some flow rate patterns of FL and flag them. In my own graphs, I see big dents right in the middle of several consecutive inhalations, but nary a FL flag in sight.

The events following arousals may well be occurring while the son is awake, but I'm a little bit skeptical; the unusually large number of OAs in there with the CAs makes me think the son is still asleep, but kicked by the arousal out of deeper sleep into shallower sleep.

I know (because I tried it; couldn't resist!) that it's possible to create an OA flag by essentially holding your breath for 10 seconds or more, but the son's OAs are occurring after he exhales. I'm figuring that means he isn't holding his breath, but maybe that's wrong?

Earlier I posted the information about diagnostic thresholds for pediatric apnea, but guess what's missing -- what counts as "pediatric"!

HMD, you are fast becoming an expert in sleep apnea! I agree with you that whatever the causes and details may be, your family is not getting adequate sleep. It is unlikely that short snatches of sleep are adding up to good "sleep architecture," which involves progression through sleep stages that repeat roughly every 60 to 90 minutes. They can be a little untidy, with the occasional arousal here or there, but the wholesale disruption of sleep that your son experiences is a different story, I feel sure.

Sleep scientists have a particularly developed view about what deep sleep and REM sleep do for us; the functions of the shallower sleep stages are not yet very clear. A book I liked a lot is "Why We Sleep," by Matthew Walker, who is a sleep researcher at a leading university.

[HalfMadDad]

Thanks again Miss Emerita

I just ordered the book. If I don't have time to read it, my wife said she would in my place.

[Pugsy]

My comment about FLs wasn't about flagged FLs but about my zoomed-in scrolling through the flow rate graphs, where there are a lot of FLs that aren't flagged.

So you are looking at the Vauto files...is that correct? The link he posted publicly???

The bulk of the non flagged FLs aren't sound asleep breathing. I even went so far as to do the User custom flagging thing to try to pick up on FLs that weren't bad enough for a FL flag or OA/hyponea flag. I set parameters down to 20 % and I got a lot of them but none while he was for sure sound asleep.
I went through every minute for the flow rate in 2 minute segments on the Vauto data I had which was Wed to Saturday morning.

Now I have NOT had a chance to import the files you probably got. What I have so far is the first copy that he sent me privately.
I have downloaded but not imported the most recent VAuto data....so I haven't seen this latest data that you probably have.
It's on my list of things to do tonight. I was working on the AutoSet SD card data today so I haven't added the new most recent VAuto data yet to review. So you may be seeing something I have yet to see.

I just got home....my hair is beautiful...and I went over to my mom's to take her a couple of items I wanted her to have to make things a bit easier for her. I have to go feed the horses and do some chores outside and then I will come in and import the latest VAuto details since it's been since Sat that I have reviewed his VAuto data.

[Pugsy]

The only way to prove or disprove oxygen levels is with the use of an overnight recording pulse oximeter.
Bear in mind it is normal to have a 3 to 4 % drop just from being asleep.
Also bear in mind if it comes loose just a little bit there will be a loss of contact artifact showing a big fast drop and big fast recovery once it gets back in place. Real desats or drops in oxygen levels never happen quickly and recovery isn't quick either.

I have a feeling that the only way your mind is going to quit worrying about oxygen levels is to use one of those overnight recording pulse oximeters. There are some that you can actually import the data into OSCAR.
I don't see his awake breathing reductions or cessations being enough to impact O2 levels but it worries you and I can't say as I blame you.

Your son is nearly a foot taller than I am....and weighs just a little less than I do and more than I did when first diagnosed.
Body wise...he's an adult. Age wise...obviously not. I don't know if we need to go by adult criteria for him or some sort of modified pediatric criteria or what.

I can analyze the data the machine gathers but what to do with that data....is above my pay grade since we have some complicating factors. It's not something I have had a chance to have any training or experience or education about.
I am comfortable making suggestions for adults but I am not so comfortable about suggestions in changes in settings for kids when I don't know what criteria I am supposed to be using.