Help for my 8 year old!

[Teeleidor]

Hey, so my 8 year old has brain-lung-thyroid syndrome a rare genetic disorder that isn't super understood even today. It took years for people to understand what is going on with his lungs. He has scar tissue and fibroids in them & needed o2 since birth until he was close to 2yo. When he was 4 he got his tonsils out along with his adenoids but I never saw an improvement but they were not doing another study. I spent the next 4 years manually getting him out of the apenas I saw. Late July of this year he started his CPAP.

Last year I got in with a new hospital system that actually knew of what he has & took it seriously. That being said the sleep dr themselves didn't think he had apena and well they were wrong considering the CPAP we have now, lol. But - I am struggling to trust that it's being treated correctly. He has both OSA and central. Since he's a child all acceptable values of AHI are lower as well as pressures which I understand but the highest pressure his APAP goes to is 7, I am worried something isn't right. He still has low dips on his pulse ox (I can't import that data on oscar due to me having a chromebook and some file type issues I'm working through), his AHI is better for sure but we have a lot of problems one being the mask. His head is big enough kids ones are fitting but small enough that adult ones are sketchy. We are using an evora full xs, when he rolls over it leaks. He is a CHAMP with it. He isn't very verbal so I'm never sure if it's too tight or feels bad.

Okay so the main point: I'm uploading his sleep study, titration study & some days from sleepHQ/oscar hopefully you experts can give me a better idea if things seem to be working, if a CPAP is the right thing with both OSA and CA & maybe if you can. I've also be using sleepHQ only because I can use my kids ipad to upload the viatom data lol my kid only keeps it on a few hours a night but it's still helpful. Other information that might matter is he gets a slow tube feed over a pump into his gtube at a rate of 82ml per hour full feed is 400ml

I need 4 posts in order to post links and everything isn't fitting so I hope I can figure this out - posting this now so far with just his studies and charts going to get images together of his OSCAR stuff
Thanks for reading

Sleep study and charts
   

Titration study and charts
   

[Teeleidor]

OSCAR data from 8/9, 8/10 and 8/11 hope it's readable!


8/9
   

8/10
   

8/11
   

[Sleeprider]

I don't see the PAP data and the sleep study data contain no respiratory flow rate graphs or respiratory data. I'll be honest, the interpretation of pediatric CPAP/BiPAP efficacy with the kinds of complications you describe are not exactly within the wheelhouse of most of our forum members, nor myself. CPAP is rarely the best solution to very complicated sleep apnea and especially respiratory and pulmonary function. I think most of us will defer to your doctor's judgement on this.

[Teeleidor]

   
Here is a zoomed in part of last night - I am honestly not very sure exactly what parts of the data to zoom in on. 

I've been trying to talk to the sleep doctor but he seems to prefer to talk at our followup but that's all the way in October, pulm is November and on vacation at the moment. His PCP won't touch it, and I don't blame him. He just had some weird labs lately that proably are from the apena's and I'm trying to at least come with info at the sleep dr. They were extremely dismissive of me initially so I want to be more informed when I speak to them.

[Sleeprider]

My impression of the segment imaged here is that there is considerable flow limitation, basically meaning the peak flow rate is decapitated by airway resistance and/or the ability of the user to use respiratory effort to overcome that resistance. Flow rate is initially good at onset of inspiration, but quickly hits a ceiling that limits or reduces that flow. There are numerous double-peaks of flow suggesting a soft-tissue obstruction followed by a reopening of the airway to a second peak. This condition in an adult is normally improved by increasing either pressure or the pressure support (EPR). This chart shows EPR at 1.0 cm, and this is the same as a bilevel machine with EPAP 6, IPAP 7 and pressure support (PS) at 1.0. Pressure support can fill-in behind inspiratory effort to improve flow limitation by providing a mechanical assist during that time inspiratory flow is increasing, preventing and overcoming soft-tissue resistance or flow limitation. This might be remedied by increasing EPR (PS), or increasing minimum pressure to better stent the airway. My inclination would be to increase minimum pressure to 5.0, maximum to 7.6 and EPR to 2.0. Clearly, the Autoset algorithm is at the maximum set pressure here due to the flow limitation, and is looking for more pressure to resolve the flow limitation. (not medical advise).

There are some clusters of OA earlier in the night at 22:40-50 that might be positional. This can be caused by head-neck position, for example a pillow that elevates the head too much, or chin-tucking typical of a fetal sleep position. Don't worry about it unless you see it a lot.

[Teeleidor]

Thank you so much for all of that information! I am going to bring it up to his sleep doctor in a message today and see if they agree. I agree that the settings need to be changed. I do have another question (and I think after this post I can post links, so I'll link some sleep HQ, so you can get a live look at the flow, etc.).

Can anyone give information about inspiration and expiration times? Sometimes inspiration can last like 3 or 4 seconds, and I have a feeling it's not normal, but most of the things I'm able to find to read are about vent patients, so I'm unsure what information applies. 

Thanks so much for that info it helped me understand his stuff a lot better. I'd been trying to read about the flow waveforms etc but I couldn't find much that looked like his - they are abnormal so that makes sense why things didn't look similar while trying to read and learn them.

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I think I can post links now so here is aug 12 data https://sleephq.com/public/1af26881-5589...5ca224f26a

[Sleeprider]

I won't use SleepHQ. That is a for profit business using the Oscar backbone, and I'm not part of it, and it's not part of this site. I won't contribute to it, and have serious concerns about the quality of information and the qualifications of the YouTube influencer to dispense advise in complex situations like your son presents. Stick to the doctors and ask your questions there.

Our wiki articles discuss inspiration and expiration times, however we normally look at this issue in aggregate with other factors. Individually the breaths can vary quite a bit, and that is normal, including yawns, sighs, and larger longer breaths free of obstruction. Larger trends can be more important, and longer inspiration time can often be associated with restrictive flow limitation. Try not to go too far into the weeds of analyzing the data breath by breath, and understand that CPAP is extremely limited in what it can do to modify respiration in the absence of bilevel pressure support, inspiratory timing, trigger/cycle sensitivity and respiratory backup if needed. You should note you cutoff the respiratory statistics in the chart above. Try minimizing that monthly calendar.

[Sleepy Quixote]

@Teeleidor

Since you have Sleepriders attention and you have OSCAR data, it would be a good idea to stick with him and OSCAR, putting SleepHQ on the side, conferring with them in that space and using OSCAR in this space.

Frankly, the best advice I ever received was from this board, Sleeprider being the best of the best. 

Stick with him and your sleep doc and you wont go wrong, matter of fact he can help you with navigating vernacular, terminology, and sleepspeak to get the best from your doctors and insurers.

I'll stand by that any day!

Good luck, keep at it, that's how we get good at it!