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9 year olds uncontrolled apneas on bipap
#21
RE: 9 year olds uncontrolled apneas on bipap
OK I've just now stumbled onto this thread. I may not be great at this, but I can add input into ASV that may be helpful. I don't recall seeing it, but the ASV will permit much lower pressures than was ongoing with the other ST type machine. I don't know pressures you're to start off with, but ResMed titration start or maybe a slight variant will be fine.

As is, if you are to get some equivalent to my ResMed AirCurve 10 ASV or the PaceWave, you'll likely only be dealing with Mode for machine and then EPAP that may be Min and Max and then PS Min/Max just like my ASV. The equal to my ASV Auto mode is likely to be easiest and most comfortable as it allows you to get away with lower pressure sets but does not hinder higher therapy pressures if needed.

Hope all turns out well. And update on the OSCAR usage. If you have questions feel free to post.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#22
RE: 9 year olds uncontrolled apneas on bipap
I just updated her machine there.

The resmed air curve 10 CS pace wave. She found it quite hard at first because she’s nearly 3 years on a machine. This seems to work with her not force her and I think she was at a point of getting used to the other machines forcing her to breath rather than it wanting her to breath for herself. But she did well and I was a little gobsmacked with the 1.0 ahi when we woke this morning.

I’m not gonna jump for joy yet, she generally starts out like a dream on machines and for whatever reason she goes incredibly bad on them after a while. But I’ll worry about that when/if it ever happens!

Not sure what pressure is on this one tho, I think it’s adapting to her right now which I’m happy with. Seems to be 16 in and 8.9 out from her settings from last night?

No complaints so far tho! ?
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#23
RE: 9 year olds uncontrolled apneas on bipap
Great, congrats. I'm sure this is like my ASV. Not to scare but passing on a bit of info. The ASV or Pacewave has a bit of mischief in it in one area. Mostly it shows itself soon after getting the machine. There's a situation where just as the machine user is drifting off to sleep, the machine interprets this as the time to blow rather hard. I'm thinking it's a misread of breath timing changes as most of us may hold a breath or similar while in the drift off stage.

Coach your daughter that when this happens, not to panic, yeah easier said, now when the machine blows and awakens, do a "blowback". Literally blow back through the mask, settle back and go to sleep. The Pacewave will get the hint and behave. It may do it again some time in future, just do the same blowback.

Keep us updated how things are going. Coffee
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#24
RE: 9 year olds uncontrolled apneas on bipap
Your daughter's machine is equivalent to the Resmed Aircurve 10 ASV and is exactly what I hoped you would have. The data on the SD card in that machine is compatible with OSCAR and that will show you the settings and much more detail about her therapy. I am fully confident her AHI will remain very low and this is a tremendous step forward to normalize her life and keep her much healthier than the huge pressures she was using with ST. This was absolutely the right decision and should have been made instead of the ST. You did good mom!

ASV can take a while to adapt to, but most people do it pretty quickly. Try to coach your daughter to use "the blow-back technique" as suggested by Dave. The machine will sometimes seem to have a mind of its own, and it is a simple matter to let it know you are in control and spontaneously breathing. Blowing back assertively will reset the pressure support to a low level. Once this is learned, the user is in control of the therapy, which is just the opposite of ST.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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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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#25
RE: 9 year olds uncontrolled apneas on bipap
Thanks so much for the replies.

She hasn’t said anything about a blast of air so I don’t think it’s happened yet so I’ll keep an eye out, good info to have when it does happen!

I’ve never in her whole time using a machine seen such a low number.
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#26
RE: 9 year olds uncontrolled apneas on bipap
I just noticed this thread last night. I am new to the cpap world, so I don't know much. But your story has touched my heart. I am incredibly happy that you joined this forum and received sound advice from Sleep Rider and Sarcastic Dave. Both of these men are a gift from God. I was very intent on hearing the results of the new machine. It sounds like you've found the right machine for your little girl. I am praying for you and your daughter that you both may now get the rest you need to improve your quality of life. Smile
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#27
RE: 9 year olds uncontrolled apneas on bipap
(12-09-2020, 02:05 PM)Sleeprider Wrote: Nicola, welcome to Apnea Board. Your daughter is on the wrong therapy and the events flagged an unknown (UA) are central apnea, consistent with her known history. She is using a fixed pressure of 24/19 (IPAP/EPAP) which might be fine for an old man with COPD, but it is absolutely insane for a child! The correct therapy is an intelligent bilevel positive air pressure device known as ASV (adaptive servo ventilator). The ASV works by keeping the airway patent against obstruction, usually using a low EPAP pressure, then on a breath by breath basis, the machine detects central apnea and hypopnea, and increases pressure support as needed to maintain a constant tidal volume, minute vent and respiratory rate.  If the apnea do not respond to the pressure support, the are assumed obstructive, and EPAP pressure is raised.  I is common to have an EPAP pressure of only 5.0 cm, but the machine can quickly provide anywhere from 3 to 15 cm or more to cause a breath where spontaneous effort is lacking.  

To help you understand better what different machines are intended to treat and how they work, please read the Resmed Clinical Titration Guide https://www.resmed.com/us/dam/documents/...er_eng.pdf  You should focus on the ASV and how it provides variable pressure on a breath by breath basis on page 31, and compare that to the Bilevel ST on page 37.  The immediate thing you should do is to get to her pediatrician and sleep doctor and expedite a request for an ASV titration study.  The ASV will work, and will result in an AHI less than 1 or 2 on the first try.  As your child's advocate this will only happen as fast as you insist that it must!  This is the wrong therapy, and there is a ready, easy solution.  Take the time to read and learn about ASV. Ask any questions of us that you have, then call the doctor.

I just thought I'd quote my first post from this thread, and gloat a bit that the advise was not only correct, but accurately predicted her AHI with the ASV. Nicola, you get all the credit for making this happen in less than 1-month. Fantastic!
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
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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#28
RE: 9 year olds uncontrolled apneas on bipap
I am curious to see the proposed settings and OSCAR results.

BTW if nobody from your side of the pond has mentioned, any mask that works on CPAP can work ASV/PaceWave as long as it's well suited to the user's facial features, size mainly, and that nearly leak free or I should say leak controlled is completely fine for an ASV/PW. So if your daughter has a favorite mask from the past, it should be fine still. Saying because some medical support personnel tell new ASV/PW users that X mask can't handle ASV duty. No it is fine.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#29
RE: 9 year olds uncontrolled apneas on bipap
(01-08-2021, 03:16 PM)Hoagie73 Wrote: I just noticed this thread last night. I am new to the cpap world, so I don't know much. But your story has touched my heart. I am incredibly happy that you joined this forum and received sound advice from Sleep Rider and Sarcastic Dave. Both of these men are a gift from God. I was very intent on hearing the results of the new machine. It sounds like you've found the right machine for your little girl. I am praying for you and your daughter that you both may now get the rest you need to improve your quality of life. Smile

Awww thank you! It sure is looking like the perfect machine! Took a while to get here but I’m delighted! Now I can probably sleep a bit more! ?
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#30
RE: 9 year olds uncontrolled apneas on bipap
(01-08-2021, 03:43 PM)Sleeprider Wrote:
(12-09-2020, 02:05 PM)Sleeprider Wrote: Nicola, welcome to Apnea Board. Your daughter is on the wrong therapy and the events flagged an unknown (UA) are central apnea, consistent with her known history. She is using a fixed pressure of 24/19 (IPAP/EPAP) which might be fine for an old man with COPD, but it is absolutely insane for a child! The correct therapy is an intelligent bilevel positive air pressure device known as ASV (adaptive servo ventilator). The ASV works by keeping the airway patent against obstruction, usually using a low EPAP pressure, then on a breath by breath basis, the machine detects central apnea and hypopnea, and increases pressure support as needed to maintain a constant tidal volume, minute vent and respiratory rate.  If the apnea do not respond to the pressure support, the are assumed obstructive, and EPAP pressure is raised.  I is common to have an EPAP pressure of only 5.0 cm, but the machine can quickly provide anywhere from 3 to 15 cm or more to cause a breath where spontaneous effort is lacking.  

To help you understand better what different machines are intended to treat and how they work, please read the Resmed Clinical Titration Guide https://www.resmed.com/us/dam/documents/...er_eng.pdf  You should focus on the ASV and how it provides variable pressure on a breath by breath basis on page 31, and compare that to the Bilevel ST on page 37.  The immediate thing you should do is to get to her pediatrician and sleep doctor and expedite a request for an ASV titration study.  The ASV will work, and will result in an AHI less than 1 or 2 on the first try.  As your child's advocate this will only happen as fast as you insist that it must!  This is the wrong therapy, and there is a ready, easy solution.  Take the time to read and learn about ASV. Ask any questions of us that you have, then call the doctor.

I just thought I'd quote my first post from this thread, and gloat a bit that the advise was not only correct, but accurately predicted her AHI with the ASV.  Nicola, you get all the credit for making this happen in less than 1-month. Fantastic!

Oh you were spot on! I really appreciate all the advice and help given on here. A month ago I was a mess with worry. I only spoke to her doctor on Tuesday and received her machine yesterday! Can’t fault her doctor she’s very swift and listens to everything. It just seems you have to fail each machine to get to this one! But we got there in the end! And I’m so happy! Also this ones a LOT quieter than the others ?

Let’s hope now she doesn’t decide to go bad on this one ?

Thanks again for your input! ?
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