Re: Central Sleep Apnea + Autism
Posted: Sun Aug 30, 2020 9:26 am
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.
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.
