Central Sleep Apnea + Autism

[HalfMadDad]

Hi Everyone

This is my first post here. I do not have sleep apnea but my wife and my two children do. My kids both have autism and I believe apnea is strongly affecting their development. My wife has many issues and in 2017 she dropped to 82lbs so she is not overweight to say the least. She has been sick for 40 years. She has been on CPAP for 6 years and she wears it everyday. With a good machine, F & F Sleepstyle, she can go days on end with > 20 AHI. She can also go days with < 5 AHI as well.

I strongly suspect that my wife and children have central sleep apnea. My wife and son are trialing BPAP machines, Resmed AirCurve 10 Vauto units.

I can get into the clinical settings and I was looking at the sleep report. Does this indicate central sleep apnea with my son?

AHI 5.3 Total AI 5.2 Central AI 2.5

He is 14 years old.

Here are his other results:

Pressure 12.0 Exp pressure 7.9

leak 14L/min (he does pull the mask down to scratch his nose a lot)

VT 480ml RR 13 MV 6.5L/min

Ti 1.2s I:E 1:2:4 Spont Cyc 97.0 %

This is my wife's :

Pressure 10.3 exp 6.6 Leak 6L/min

VT 320ml RR 11 MV 4.0L/min Ti 1.3s

I:E 1:2:6 Spont Cyc 90%

Total 4.2 Central AI 2.1

She is 53 Years old and is 5 foot 93lbs.

My daughter is unable to wear a CPAP yet. She is 10. I believe she is the one most affected and she is unable to attend school due to chronic headbanging etc. She has had a partial home test done that indicates sleep apenea and she improved quite a bit when we sewed a pocket into the back of her sleepwear and stuffed a shirt into it to create a bump to discourage back sleeping. She improved but her situation remains quite serious.

Any help would be appreciate forever.

Again, this is my first post here, I read the newbie thread but please let me know how I can improve my posts.

Thanks for reading

[Pugsy]

Not enough central apneas to earn a central apnea diagnosis.
Need more than 5 central apneas per hour average separate from obstructive apneas per hour to get a doctor to take much notice.

There's also a good chance some of the flagged centrals are awake/arousal related and wouldn't be considered real centrals anyway.

The AirCurve machines...do you have SD cards in them? If not, get a couple of plain cheap generic SD cards at Walmart and put them in the machine all night. There is more detailed data available but the SD card has to be in the machine to get those files.

Go get OSCAR

OSCAR https://www.sleepfiles.com/OSCAR/
http://www.apneaboard.com/wiki/index.ph ... stallation
http://www.apneaboard.com/wiki/index.ph ... rpretation

And watch the videos here so you can learn how to zoom in on the flagged events and see if they look like arousal or asleep flagged events. While it talks a lot about centrals...any flagged event can be a false positive awake related flag.
http://freecpapadvice.com/sleepyhead-free-software
OSCAR is based off SleepyHead so all the stuff you can do with SH you can do with OSCAR.
CA or ClearAirway reported flags....those are centrals.

[khauser]

Hi Halfmaddad,
Welcome!
I'm not going to comment on the machine settings as I have no experience with those systems. The apnea reports, however, are at the upper end of mild. It wouldn't hurt to get them lower but they aren't horrible.
The machine is reporting a mix of central and obstructive apneas in both cases but without seeing flow data it is impossible to tell how many events are real vs false reporting of awake breathing.
The Resmed Airsense 10 systems are supported by Oscar so you should be able to get that data.
Do you have the sleep study reports? They would also be useful.

[HalfMadDad]

Thanks very much Pugsy and khauser !

This is very helpful information. I will load the software right away. Also this gives me a baseline to watch out for.

My son is 14, so I don't know if > 5 apnea events per hour is still okay for him but considering he has autism, I think we need to get them a lot lower. They have also doubled in the summer and I don't know why. My wife has had fewer events recently but she will have over 15 AHI soon enough and then I can check to see if she is over 5 central AHI mixed in there.

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. The software might give me more info.

55397 thousand posts!

1038 posts!

Don't forget to mention this to the big guy when you are standing at the gates of heaven.

[Pugsy]

To earn a flag
central apnea
obstructive apnea
hyponea
they must be at least 10 seconds duration.

If you stop breathing for 9 seconds...no flag

I am sorry but I don't remember the criteria for children the age of your son. If he was 6 obviously a different story but I just don't remember teenager criteria even for obstructive apnea diagnosis.

But any of the criteria would require sleep first. Any awake/arousal events would be tossed out the window and not counted in determining the diagnosis which is why you get to take crash course in identifying awake breathing vs asleep breathing.
I toss and turn a lot...old woman with lots of back pain stuff so I know I have lots of arousals. AHI normally is about 75% arousal related.
Couple of months ago I had a night with the AHI of 9.4 which is of course a bit scary and when I went and looked at the flow rate 90% were arousal/awake related flags. I just had a bad night with the back stuff. Old woman over did the gardening stuff that day and paid for it that night with more back pain.

[khauser]

55397 thousand posts!

1038 posts!

Pugsy has a slight lead on posts

She's also extremely helpful and knowledgeable. There are a bunch of people here that want to help ... good place to be.

[Miss Emerita]

I got curious about this and found a review article by researchers here:

https://www.uptodate.com/contents/evalu ... n-children

Below are some highlights. There are also some good links within the article.

The adult scoring criteria stipulate that obstructive apneas, hypopneas, and respiratory effort-related arousals (RERAs) must last at least 10 seconds to be scored, whereas the pediatric scoring criteria stipulate that they must last for ≥2 breath cycles (which may be shorter than 10 seconds, especially in infants and young children).

Concern for clinically significant OSA generally starts with an AHI >1 or RDI >1.
An AHI ≥1.5 events per hour was considered abnormal based on a study of a group of healthy children not suspected of having sleep-related breathing disorders, in whom the mean AHI was 0.2 ± 0.6 events per hour.[1]

Some experts have advocated slightly higher RDI thresholds, such as 1.5, 2, or 3 events per hour.
An RDI >5 events per hour of sleep is often used to identify an abnormal RDI in adults, but is insufficiently sensitive for children.Preliminary classification using RDI or AHI — PSGs tend to report the respiratory disturbance index (RDI) or apnea-hypopnea index (AHI) (table 2), and the following categories can be used as an index of severity:

●Mild OSA – RDI or AHI, 1 to 4.9

●Moderate OSA – RDI or AHI, 5 to 9.9

●Severe OSA – RDI or AHI, >10

Of note, it is common to observe a small number of central apneas (central apnea index >1 and <5) in addition to obstructive respiratory events. These central apneas (spontaneous, movement-related, or sigh-related) usually improve with adenotonsillectomy. A central apnea index >5 is rare and suggests a need for further evaluation for a cardiac, metabolic, or neurologic disorder [109].

[zonker]

55397 thousand posts!

yeah, but she makes most of it up.


no seriously, you are in good hands with pugsy.

by the way, when you do gather that data, could you post it right here in this thread as opposed to a new one?

thanks and good luck!

[HalfMadDad]

Thanks so much again guys.

Thanks Pugsy, The thought that my kids are not breathing at all for over 10 seconds, several times per hour is very worrisome, autism hits hard enough without this and yes I will take the crash course in identifying awake breathing vs asleep breathing.

I am going to see if there is some setting in the AirCurve to adjust for age and apnea length.

[HalfMadDad]

Thanks very much Miss Emerita. I am going to read this in detail. Pulling out the important parts for me was very helpful, thanks.

Our CPAP tech was not concerned about my son's AHI but his respirologist is so I am going with that

His BPAP seems to be helping him so far yet his AHI is actually higher. I wonder if it is helping with events not captured by a machine designed for adults.

[Julie]

No, don't worry about that (child vs adult machine). Many children younger than yours use the machines with no problem and nothing to suggest the machines can't help kids just as well as adults - if it were an issue, someone would have= come out with a 'kid' machine long ago or added special settings to the cuerrent ones.

Something occurred to me (I'm nosy) and that is whether or not your 14 yr old has shown any interest in the machine as a machine, and how it works, the different features, etc... if you know what I mean, or is he inclined in other directions?

[Pugsy]

I knew about young children with OSA and essentially any apnea is unwanted which is why the line in the sand is so low and often surgery is looked at first because a majority of time once the airway is opened up with a T & A surgery....it's taken care of. Now there are exceptions of course as with anything.

I don't know about criteria for a barely teenager though. If I ever read it I have forgotten it. We just don't see many kids here of that age...we do have some parents of older teenagers here but they are essentially adults.....and they don't have the complicating factor of autism.

The 10 second of not breathing...hold your breath for 10 seconds. That's a 10 second central apnea. Not a big deal unless you do it maybe once a minute for 20 minutes. The AirCurve machine will give you a duration for central apneas and obstructive apneas. It won't give an accurate duration for hyponeas. It just labels them all 10 seconds but to be quite honest a lot of the time you can barely see any flow reduction to earn the hyponea flag.

Central apnea....airway is open but there is no effort made to breathe...like holding your breath and 10 seconds is the minimum
Obstructive apnea...again like I said above at least 10 seconds duration but the air flow is from 80 to 100% blocked. So maybe not a total blockage and just a reduction in air flow.
Hyponea ....10 second minimum again but this time the reduction can from from 40 % to 79% (once it hits 80 it gets the OA flag).

First thing though....gotta figure out if what is being flagged is awake/arousal breathing related or real asleep flagged events.
If we aren't asleep they simply aren't sleep apnea events because we have to be asleep first and foremost.

Get some data off the SD card and watch the videos. If we have to I can have you send me a copy of the SD card contents and I can plug the data into my software and I can also take a look and see if the bulk of what is being shown is arousal or asleep related.
Sometimes it's easy to spot...sometimes not but we can make educated guesses and come close.
We can chat about that later.

My dream machine would be a machine that could tell for sure if we were asleep or not and only flag the asleep stuff...but the technology isn't there yet. I once helped a guy that his AHI was running 25 on the machine...OMG what a mess it was and then with a bit of history taking I finally learned he had really bad insomnia and was getting very little sleep. We had him get with his doctor and get some short term sleep aid so he could get some sleep and we could then see what his AHI was when he was for sure asleep...it dropped to less than 2.0. So the machine was fixing the airway problem quite nicely and once he knew that and got with his doc they worked on the insomnia stuff and in a couple of months he was off meds and sleeping decently and getting a nice low AHI consistently.

How long are you all trialing the AirCurve machines...your son and wife?
I don't have software for the F & P sleepstyle and no where to get it.
If it is short term and I don't have my usual amount of time...I can hasten my thoughts.

As far as the son...I can help isolate real asleep AHI vs AHI that might be partly arousal related and then you can convey all that to his doctor and you guys get to decide what to do if anything. By the time I am done with your crash course you will be able to give him a crash course.

I have sort of tutorials floating around. Tomorrow I will try to consolidate them and once you watch the videos you can then understand my examples a bit easier.

Oh...when you post a screen shot of a detailed image...please also include how the person slept in general and how they say they feel.
Wife should be able to do it easy enough. Your son...may not but at least try..

[Pugsy]

Oh...one other question ...what kind of respiratory issues does your son have that he sees a respirologist?

[HalfMadDad]

Thanks again Pugsy

I am so happy that OSCAR runs on Linux. I have been running an older version of Linux and I can't install it. I am switching over to another one today so hopefully I will have it up and running soon. I can send photographs of our sleep area. It is tough to get feedback from him. He will always say he slept fine no matter how bad it is.

We have major issues with insomnia. 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.

We will be trialing under September 12th but can extend longer if needed.

I was mixed up about the respirologist part. My wife has lung issues and sleep apnea so that is the term for the doctor she was seeing but the proper title for this one is "Physical Medicine and Rehabilitation".

I will post about it in another thread but I am also in the process of setting up one to three NELLCOR N-200 PULSE OXIMETER units. They have serial ports on the back so I can collect oxygen level data throughout the night to cross reference to the BPAP data.

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.

I will be back soon with more data and info.

Thanks again

[Pugsy]

Okay, I will be in an out today as well.

I assume you know how to compress/zip the entire SD card contents in one step? Eventually I want a copy of the SD card contents but I can't take each file and folder and rebuild it when they are sent separately in a manner that the software needs for the software to work with it. When compressed in one step...everything stays in order and all that stuff and then I can use my software to review the flow rate stuff.