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threehappypenguins
Unread post  Post subject: 6-Year-Old Daughter with OSA and CSA? More Pressure Needed?  |  Posted: Thu Nov 22, 2018 9:27 am
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My 6-year-old daughter is currently undergoing a CPAP trial. I have attached a screenshot with her data from SleepyHead (she is using a Philips Respironics Dream Station with a pediatric Wisp mask). She has a tiny frame (though is tall), and her father also has sleep apnea (even when he was thin he had it; though it's worse with him being overweight). What is concerning me is Central Sleep Apnea. She is not formally diagnosed with either OSA or CSA. She had an oximetry done for a couple of nights and it indicated sleep apnea. After months of waiting to see an ENT (I'm in Canada), they wanted to take out her tonsils and adenoids, even though she has never had an infection (not even an ear infection... nothing) and they are of average size. My husband had both a tonsillectomy and adenoidectomy when he was a child, and also has asthma. He still snored afterwards as a child, and like I said before, he still had sleep apnea even when he was a thin adult. So I didn't want to just remove my daughter's tonsils and adenoids when I know that it can increase risk of asthma (she currently doesn't have asthma) and it didn't seem to work for her father (there are a lot of health similarities between them, including Celiac Disease).

I managed to convince the ENT to give a CPAP trial a go. But I'm concerned she has more than just OSA. I watched a video showing how to look for CSA, and it looks like she has a mixture of CSA & OSA. Is this accurate? Here is the first picture zoomed in on one of the events in the night:
Attachment:
Sleep Apnea1.png
Sleep Apnea1.png [ 143.25 KiB | Viewed 10045 times ]


I have included a screenshot of the entire night as well:
Attachment:
Sleep Apnea2.png
Sleep Apnea2.png [ 170.14 KiB | Viewed 10045 times ]


Shouldn't her maximum then be increased beyond 10? It appears that she needs more than 10, but because the sleep specialist figured 10 was good for a skinny 6-year-old, it looks like it spikes to 10 and then stays there even though she appears to need more pressure (because she continues to get apnea events).

You can also see from the second screenshot that there are gaps where her mask came off. She was just so restless (that is the norm for her). And interestingly, as my husband and I were trying to get to bed, she had a night terror and was screaming for me, and mumbling a bunch of incoherent stuff and other things that didn't make sense (sleep talking) while sitting up in bed. And it perfectly coincides with her first major AHI event (third screenshot):
Attachment:
Sleep Apnea3.png
Sleep Apnea3.png [ 143.73 KiB | Viewed 10045 times ]


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Pugsy
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Thu Nov 22, 2018 10:29 am
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Can you hide the calendar and turn off the pie chart (Preferences/appearance tab and remove check mark for show pie chart).

See this for formatting.
http://www.cpaptalk.com/wiki/index.php/Sleepyhead
your last example with time and pressure graphs...not needed.

Can you zoom in closer on the cluster of OAs so that you have more of a 3 minute segment instead of a 14 minute segment?
Do the same thing with a small segment of the CA/central cluster.

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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Thu Nov 22, 2018 11:40 am
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Pugsy wrote:
Can you hide the calendar and turn off the pie chart (Preferences/appearance tab and remove check mark for show pie chart).

See this for formatting.
http://www.cpaptalk.com/wiki/index.php/Sleepyhead
your last example with time and pressure graphs...not needed.

Can you zoom in closer on the cluster of OAs so that you have more of a 3 minute segment instead of a 14 minute segment?
Do the same thing with a small segment of the CA/central cluster.


Are these better?
Attachment:
OA1.png
OA1.png [ 117.22 KiB | Viewed 10037 times ]

Attachment:
CA1.png
CA1.png [ 116.19 KiB | Viewed 10037 times ]


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Pugsy
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Thu Nov 22, 2018 7:28 pm
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Thank you. Better image but there's something weird with the scale on the flow rate. Not sure how to tell you to fix it though.

Need it to look more like the scale here below so that breaths can be seen more defined.

See this example.
Image

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Pugsy
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Thu Nov 22, 2018 7:29 pm
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Trying to figure out if she was really asleep when all those events got flagged.
Watch the videos here.
http://freecpapadvice.com/sleepyhead-free-software

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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Fri Nov 23, 2018 7:29 am
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Now I'm getting a huge amount of Breathing Not Detected (last night):
Attachment:
BND.png
BND.png [ 125.23 KiB | Viewed 10011 times ]


I figured out how to properly zoom in on those Clear Airway events (I was previously finding them from the top graph, dragging my mouse cursor over, and trying to guess at what a roughly 3 minute window was). I clicked on the "Events" sub-tab on the left, and was able to find 3 CA events from last night. So here is the screenshot for all 3 from last night:

Attachment:
CA1.png
CA1.png [ 58.78 KiB | Viewed 10011 times ]

Attachment:
CA2.png
CA2.png [ 60.7 KiB | Viewed 10011 times ]

Attachment:
CA3.png
CA3.png [ 58.89 KiB | Viewed 10011 times ]


Last night (not sure what time) she woke up only once (we heard a loud scream). My husband checked on her and said that she was breathing through her mouth. So he gently shut her jaw. Also, as you can see, I had increased the Max Pressure to 15. It went above 10 almost to 12. So I'm guessing I did the right thing. But her AHI still seems high (especially since children are supposed to be below 1 or 2). And she is still wetting the bed.


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diamaunt
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Fri Nov 23, 2018 10:41 am
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The min pressure is too low to prevent the obstructive apneas.

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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Fri Nov 23, 2018 11:48 am
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diamaunt wrote:
The min pressure is too low to prevent the obstructive apneas.


I guess the other thing I'm wondering is why it matters? Shouldn't the machine detect how much pressure is needed, and then raise it accordingly? If I should raise the minimum pressure, how do I know what to raise it to?


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Pugsy
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Fri Nov 23, 2018 2:48 pm
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The machine is trying to raise the pressure but it has too far to go to get to the point where the airway is held open better.
This is why the minimum pressure on auto adjusting machines is so critical...the machine needs a better head start or jumping off point to get to where it needs to be in time to prevent the airway collapse.

When increasing minimums I usually suggest small increases because sometimes a little increase can make a huge change. Like 1 or 2 cm more or sometimes even 0.5 cm increments.

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diamaunt
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Fri Nov 23, 2018 7:20 pm
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threehappypenguins wrote:
diamaunt wrote:
The min pressure is too low to prevent the obstructive apneas.


I guess the other thing I'm wondering is why it matters? Shouldn't the machine detect how much pressure is needed, and then raise it accordingly?


No, that's not how they work. Auto machines aren't magic, they respond to problems with breathing, raising the pressure after enough of those events have happened, and then, when the events stop happening for some pre-programmed amount of time, the machine starts lowing the pressure, trying to get back to the minimum that's set on it.

They're very dumb in that regard.

Secondly, your rand of machine is .... slow to respond,

https://www.youtube.com/watch?v=lzCCgNLya_g

Which makes getting the min pressure set right even more important.
threehappypenguins wrote:
If I should raise the minimum pressure, how do I know what to raise it to?


It's pretty much a trial and error situation, raise pressure, see if you've still got events, if so, bump it up some more.

Also, before you post another chart, could you adjust the y axis scaling on the flow chart?

Right click on 'flow rate" then pick 'y axis' then select override" and pick something smaller than what it's autoselecting, say -30 to 30, that should make the actual flow large enough to see, instead of just a vaguely wavy line.

SH normally does a fairly good job at scaling that to something useful, but sometimes it gets confused, or just screws up....

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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Tue Nov 27, 2018 9:59 am
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I just had a second appointment with the Sleep Specialist at a local shop (the company that provides the trial). The specialist told me that children do better on CPAP than on APAP, and that the last night my daughter was on it, I had the maximum pressure up too high and it was probably causing clear airway and hypopnea events because of "too much air" and "expanding her lungs too much." I had the minimum pressure up high as well because her nose was stuffy and she kept complaining that she couldn't get enough air (so I slowly increased it until she said it was good; which was 9; also, FYI, she is still using Philips Pediatric Wisp). Here are the overall results from that last night:
Attachment:
PhilipsOverview1.png
PhilipsOverview1.png [ 154.29 KiB | Viewed 9876 times ]

And here are a couple of apnea events (and a hypopnea):
Attachment:
PhilipsOSA1.png
PhilipsOSA1.png [ 50.64 KiB | Viewed 9876 times ]

Attachment:
PhilipsOSA2.png
PhilipsOSA2.png [ 48.99 KiB | Viewed 9876 times ]


I mentioned the problems with Philips and that there is evidence to show that they are slow to respond, and the issue with breathing not detected. She admitted that they are slower than ResMed, but didn't seem to think it was an issue. She wanted to get my daughter on continuous pressure instead of an auto-titrating one. I asked for a ResMed trial anyway (instead of the Philips). For contrast, I want to show my husband on a ResMed. Let's just say his sleep apnea is BAD. His AHI was 72 for his sleep test prior to treatment (and no, he's not morbidly obese, lol). This was him a few nights ago:
Attachment:
ResMed-Overview(husband).png
ResMed-Overview(husband).png [ 139.18 KiB | Viewed 9876 times ]


The specialist said that basically we have to "guess" as to the ideal (continuous) pressure since there are no clinics in my area that will do pediatric overnight sleep studies (and the wait is about 2 years to get in, anyway). Apparently the devices the clinic uses for in-home sleep tests are only for adults. She said that these machines are designed for adults, and don't "understand" a child's airway. I extensively researched this issue when I got home, and this is all I could find. The study says that there was no difference between APAP and CPAP, but also that "Dr. Brockbank noted that study limitations include small sample size, small number of pre-adolescent subjects, and that it was a short-term study." If someone knows of any other studies to show that CPAP is supposedly "more effective," please point me to them.

Anyways, she set the pressure to a continuous 10. Here are the overall results on the ResMed (not the Philips):
Attachment:
ResMed-Overview.png
ResMed-Overview.png [ 145.28 KiB | Viewed 9876 times ]


I can only add a maximum of 5 screenshots, so I will add the last two in my next post.


Last edited by threehappypenguins on Tue Nov 27, 2018 10:04 am, edited 2 times in total.


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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Tue Nov 27, 2018 10:00 am
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Here are a couple of the ResMed apnea events:
Attachment:
ResMedOSA1.png
ResMedOSA1.png [ 114.63 KiB | Viewed 9876 times ]

Attachment:
ResMedOSA2.png
ResMedOSA2.png [ 113.89 KiB | Viewed 9876 times ]


So... what should I do at this point? I don't know if I should be increasing the pressure to 11, and it will be another week until the next appointment. I am not entirely convinced that continuous pressure is the answer, and it appears like the Philips just wasn't reacting well (as shown with a comparison with my husband's sleep treatment success with the ResMed). I have the RedMed now. Should I give APAP with ResMed a go? Will setting the maximum to 20 be harmful?


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Pugsy
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Tue Nov 27, 2018 11:54 am
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How about a compromise...use apap mode but use a tight range so it doesn't move around much?
I don't know if allowing a big range would be harmful or not but I always say if I am going to err it will be on the side of caution.

You are close with the 10 cm...how about apap mode 10 min and 12 max?

I think you can already see the benefits of the faster ResMed response.
For some people it might not make that much difference but the tech was right about one thing....with kids it's a whole new ball game and we can't always substitute adult stuff for pediatric stuff.

And no matter what the final pressure might end up being...if it were my kid they would have the ResMed machine that you are trying right now.
I would probably even want to play with the for her auto mode too.

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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Tue Nov 27, 2018 12:05 pm
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Thanks, Pugsy. I did some further digging, and found an old post off of this forum. While, yeah, kids are definitely not the same as adults, I think it further confirmed my suspicion that when my daughter was getting some legit OSA's, the Respironics machine was doing diddly squat about it. I am definitely curious to see the ResMed in APAP mode and I will take your advice to try a small range (10 min, 12 max) just to stay safe, and see how things go. Unless somebody else chimes in with more helpful info. I know the sleep clinic *hates* when we change settings. They got upset at my husband and I when we changed settings on his ResMed after he lost a pile of weight. But I'm not waiting another week to have them change the settings and subjecting my daughter to another bad sleep night after night while we wait for another appointment (she already complains she doesn't like it). And they already admit that they're just "guessing" anyway.

I will post the results tomorrow! :)


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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Tue Nov 27, 2018 12:18 pm
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Just wanted to add that I had gone in with the resolve to ask for the ResMed, and was made to feel like my instincts and knowledge on the matter were faulty. Like I was crazy for thinking that there was something wrong with the Respironics. She said that she was going to put it in continuous mode, so it won't matter what machine I had. I almost caved and kept the Respironics. But I told myself... "No. Don't do it. You'll regret it if you don't get that ResMed." I told her that I'd feel better if my daughter had the ResMed. I'm glad I did.


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diamaunt
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Wed Nov 28, 2018 1:42 am
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I'll say that I have a lot of suspicion about what the average "Sleep Specialist" says... simply because I've seen so much rot come spewing from their mouths.

20 *seems* like a lot of pressure, but it's only what it takes to blow bubbles through a straw in a tall glass (20 centimeters of water).

I'm *very* dubious that your daughter will do better on fixed pressure... she needs more than 15 for those times when she's having events (REM?... on her back?) and much less for the other times.

Sleep is *NOT* constant, even in children... :lol:

Try searching for "pediactric cpap site:medscape.com" (you'll need to create a (free) account on there. I spotted some stuff that looked like it might be promising, but time got away from me and I didn't have time to dig into it this evening.

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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Wed Nov 28, 2018 8:41 am
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Looks like last night was worse with min 10 and max 12 than it was with a continuous 10. But upon examining it, I'm not so sure. Here is the overview:
Attachment:
Overview1.png
Overview1.png [ 151.99 KiB | Viewed 9829 times ]

The night before (continuous 10) had a lot of random gaps (mask came off?), so I'm not sure the 8.64 AHI was really accurate. It seems my daughter woke up alot, and had a lot of leaking. Last night, however, it looks like the the pressure was starting to do its job, and then maxed out. Also, I circled parts of the overview with red (parts she seems awake when I zoomed in), and green (her mask came off; she said she work up to it being on her eyeball lol). See here with the first apnea. It ramps up a bit, and problem seems solved at that moment:
Attachment:
OSA.png
OSA.png [ 77.95 KiB | Viewed 9829 times ]

Then she has another apnea, and it's pretty much maxed out, so more apnea's keep coming:
Attachment:
OSA2.png
OSA2.png [ 75.72 KiB | Viewed 9829 times ]

Attachment:
OSA3.png
OSA3.png [ 78.29 KiB | Viewed 9829 times ]

Things are fine for a while, then it happens again:
Attachment:
OSA4.png
OSA4.png [ 78.17 KiB | Viewed 9829 times ]

Will attach more screenshots in the next post.


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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Wed Nov 28, 2018 8:52 am
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My other concern is what appears to be true central apnea, and the pressure isn't quite maxed out. It almost is, but not quite. Shouldn't the pressure increase at least to the max of 12 to try to stop these? Unless I'm misunderstanding how things work.
Attachment:
CA&OSA1.png
CA&OSA1.png [ 126.61 KiB | Viewed 9829 times ]
Attachment:
CA.png
CA.png [ 128.5 KiB | Viewed 9829 times ]


Thanks, diamaunt, I will check out the medscape suggestion. I guess it's a little disheartening to see a worse AHI than the night before. I *think* the correct thing to do would be to increase the max to 13, but I guess the Sleep Specialist has me a little afraid of too much pressure, saying it can cause hypopnea's and central apnea's.

Curious to see what others think. Let me know if you need more info. The other thing I want to do is rig the ResMed Airfit P10 and sew on a couple of straps to keep it in place properly. I think she will do better with nasal pillows since she has an issue with her nose being stuffy (just like my husband). They are the only ones with an XS nasal pillow that fits her nose. But her hair is so fine and soft, the head gear just slips off unless we make it way too tight, and then it squishes up against her nose and makes it uncomfortable for her. I wish there was a proper pediatric nasal pillow. I'm hoping that maybe I don't need to have the air cranked up so high for her to breath and be able to lower the minimum.

On another note, I checked on her last night (before midnight... I don't know exactly when... probably after 11), and noticed her mouth was ever so slightly open. So I gently pushed her jaw up to force her mouth closed, and I could hear her struggle to breath at first, and then the air ramp up slightly. Once that happened, she seemed to keep her mouth closed better, at least in that moment.


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Pugsy
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Wed Nov 28, 2018 10:27 am
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I am short on time at the moment so no time to really look at the images but just wanted to explain the machine's lack of response when it senses a central apnea.
No apap machine will increase the pressure for a central apnea because the airway is already open and they just can't go high enough fast enough to breathe for the person.
This is just the way the auto adjusting algorithm in the apaps work.
They only respond to situations where there is no air flow because of tissue obstruction.
They do nothing when there is no air flow from lack of effort.
Hold your breath for 10 seconds...that's essentially a 10 second central.
No air flow because you made no effort to breathe but the airway is totally open.

Random centrals are normal and no big deal. Like it's normal to have what is called a sleep onset central when going from wake status to sleep status.

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threehappypenguins
Unread post  Post subject: Re: 6-Year-Old Daughter with OSA and CSA? More Pressure Need  |  Posted: Wed Nov 28, 2018 10:34 am
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Pugsy wrote:
Random centrals are normal and no big deal. Like it's normal to have what is called a sleep onset central when going from wake status to sleep status.


That was very helpful, thanks!
I reviewed the centrals again, and it looks like she woke up (crazy breathing flow), went back to sleep and got a few centrals in the next 15 minutes, and some obstructive events, then woke up again (because the pressure was maxed out). So the centrals are mixed into some sleep/wake/OSA clusters.


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