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9 year olds uncontrolled apneas on bipap
#11
RE: 9 year olds uncontrolled apneas on bipap
she had mentioned it to me before after one of my daughters sleep studies this year. She did say it wasn't really used for children and would have to look into it more. I was just looking it up online there. it literally looks like her machine just works a little different. I'm due to speak with her this week and talk about were we can go from her. and that's top of my list. It's been mentioned before so I don't see a problem with her doing it with my go ahead. I'd rather not go back to cpap because that ended in disaster! And I'd try anything now if it meant she'd feel better because right now she's a shadow of herself.
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#12
RE: 9 year olds uncontrolled apneas on bipap
A previous comment you made, I never leave her...sometimes she just stops breathing. Obstructive sleep apnea is differentiated from central by "effort". A person with obstructive apnea will appear to struggle for breath with the chest heaving, but no air passing through. The commencement of respiration is often accompanied by a snort or snore, usually loud, followed by rapid, deep recovery breathing. The central apnea patient just stops breathing, then quietly restarts. The cessation of breathing is just a lack of drive or effort to breathe. I'm sure that visualization should give you something to consider.

The ASV detects that cessation of breathing and if the airway is open, as is implied in CA, increases the pressure to fill the lungs to a normal volume, and the machine returns to low EPAP pressure allowing exhale. All of this happens seamlessly, quietly and there is usually no arousal. The tidal volume and breath rate remain normal, and an observer might not know it even happened. When the patient resumes spontaneous effort, the machine simply stands aside and lets it happen.

Children can and do use ASV. This study shows successful use in an infant https://www.scitechnol.com/adaptive-serv...le_id=3534
This one has a paywall https://onlinelibrary.wiley.com/doi/abs/...ppul.24672

There are clearly professionals more versed than I am in pediatric use of ASV, but it's out there and your daughter is already way outside pediatric guidelines on her VPAP S/ ST.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#13
RE: 9 year olds uncontrolled apneas on bipap
Yep she lies there breathing kinda ok - very shallow tho with not much effort and then nothing. She wouldn’t of moved or turned etc. Very scary to see. I’ve put in a request to speak with her consultant ASAP. But I foresee this not being helped till the new year. They finish up at the end of next week for the Christmas break. But I’ll hopefully get the ball rolling for when it all starts up again. Probably the worse time to have all these problems act up.
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#14
RE: 9 year olds uncontrolled apneas on bipap
Nicola, can you post the Statistics chart in OSCAR and toggle the Monthly view at the bottom left of the screen. I'm hoping we can look at some of her past pressure history and see if there are any trends there.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#15
RE: 9 year olds uncontrolled apneas on bipap
I'm attaching what I think you're looking for. (I had to delete a previous screenshot as I reach my limit)

like I said previously this machine was swapped out because she got so bad - she was at the first pressure since feb and doing great. I unfortunately have none of the data from that time because the sd card went back with the machine and a new one issued. It was thought her machine was malfunctioning and it wasn't. Everyones at a loss to what's going on with her. She would have had periods of being very good ahi wise and then out of nowhere she'd go down hill. It's not a new thing its just now we've lost all options going forward because we've exhausted and threw everything at it.

I do actually feel from looking and witnessing everything, that her little body just doesn't want to breath and has been like that since she was a baby. Also I will say she's had some very bad oximetry results while on machines and off (according to her sleep specialist) I don't have these reads unfortunately. They don't share them here and they need to be requested by me like all the other reports. 

I've downloaded Oscar to try and help but it gave me no answers, because I can't tell if any of her recorded things mean anything. also those screenshots were of a good night for her and fairly recent, don't know why I did a good night!! if you need any other ones ill do them no problem.


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#16
RE: 9 year olds uncontrolled apneas on bipap
I don't want to second guess your doctors, but subjectively, the best results were in October at IPAP 22, EPAP 18 (PS 4). Higher pressure support of 6.0 (22/16) in July and August resulted in higher levels of hypopnea. Based on the long-term results, I'm not seeing an advantage of the current 24/19 pressure vs 22/18. No results are reported at EPAP lower than 16 cm, so how you arrived at these higher pressures is unknown from this data. We also don't know what other physical or health issues lead to the onset of apnea and history of therapy prior to this device.

I sincerely hope a better solution can be found. We have a saying here that "the definition of insanity is doing the same thing over and over again and expecting a different result". Your daughter has been treated for obstructive sleep apnea up to the pressure limits of bilevel therapy. It hasn't worked. What would be wrong with trying to treat it as complex or central apnea with ASV?
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#17
RE: 9 year olds uncontrolled apneas on bipap
On the 2nd of November she had her last sleep study. She did terrible on this - she slept the whole night tho, Better than any other sleep studies. So that’s why that pressure increase was called for. It was expected that her apnea’s would go down because previous ones did but then got bad again after a certain period.

I’ve a feeling the majority of the patients she has can be easily treated and mostly obstructive apnea’s. She’s been very vocal about not thinking it’s central but I keep pushing it and questioning which she welcomes and I think at this stage with everything else not helping that she may be changing her mind a bit.

I’m happy she has mentioned asv before to me so I can ask for that now.
Before July she was constantly (weeks rather than months) in a state of hyperventilating and rr was at 50 constantly. That happened out of no where she’d been at a pressure for a good while and doing brilliant. She’s lost a good amount of weight (she was never overweight) she’s so pale and dark circles to her eyes. She even says her legs feel like noodles. That’s her saying they feel weak first thing in the morning.

I just have that gut feeling as a mammy something isn’t right at all. Just don’t know what it is right now causing all this.
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#18
RE: 9 year olds uncontrolled apneas on bipap
Your doctor's opinion (and ego) may be preventing her from pursuing the science. Unfortunately many physicians have this bias, and in most cases it's easier to work with a new doctor that is more open-minded, than to try to get one of these doctors to change their mind. This is the biggest problem we deal with in the sleep medicine field. I have helped countless individuals pursue ASV therapy on this forum, and I have not yet gotten it wrong. Some have better results than others, but even those that go back to conventional bilevel or CPAP therapy, have done so with a better understanding and improved therapeutic result. I realize the NHS has more limited options to change specialists, but finding one with a different understanding of respiratory drive, including the problems of central and complex apnea, hyperventilation and a broader understanding of pulmonary function may be important for your daughter's health. So far, only one approach has been tried...pressure, more pressure and more pressure support. There are far more intelligent machines like ASV and iVAPS (intelligent volume assured pressure support) that are made to solve complicated cases and target a respiration rate and volume, rather than the non-intelligent positive air pressure machines you have used up to now.

Making a leap to higher PAP technology requires a doctor that has a broader education, more progressive attitude and an interest in problem solving. Everything you are telling me is that your current specialist or consultant is not equipped from the standpoint of attitude, experience or education to help you.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
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Optimizing Therapy
Organize your OSCAR Charts
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#19
RE: 9 year olds uncontrolled apneas on bipap
Just wanted to do a little update. I talked with my daughters consultant and it was decided by both of us that she would be changed to asv. We received it in the post this morning and I’m hoping this now will see her feeling and doing better.

Her consultant has used it in patients before but only adult ones. So she’s the first paediatric patient she’s put on it and is willing to try, she said if it doesn’t help she can always go back on her previous machine. So I’m happy right now and curious to see how she does tonight.
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#20
RE: 9 year olds uncontrolled apneas on bipap
Nicola, this is great news. Let us know what brand and model you are receiving and be sure to use a SD card if it has a slot. I'm confident the ASV will be a much better solution.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
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Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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