9 year olds uncontrolled apneas on bipap

[Nicola]

Hi guys,

I'm wondering if anyone can help me a bit.

My daughter who is 9 now and has a long history of apneas and started out on cpap 3 years ago. we had a follow up study that showed the cpap was setting off too many centrals. 2 years ago she was switched to bipap. in those 2 years she has had multiple studies and pressure increases. She's now at the point of not being able to do much more for her on bipap - she's above paediatric pressure and her consultant doesn't want to risk damaging her lungs.

We had ENT look at her a couple of weeks ago and he scoped her and found nothing that would show a reason why she's having so many apneas.
during the summer she developed hyperventilating on the machine while she was sleeping and was having 40 odd apneas an hour. her pressures were increased and she calmed down. (unfortunately I don't have that read out as her machine was thought to be malfunctioning so was swapped and pressure increased - I do have her reads from then and she was having 20+ apneas an hour)

Her sleep study at the start originally showed obstructive and and some centrals.  severe obstructive sleep apnea was diagnosed and she then started CPAP. On each study she showed differently, some had both, others had only obstructive and I think one had showed only centrals. Her sleep doctor only believes she has obstructive. (I have none of her sleep study info and would have to request it - could take a while)

however I've been researching and came across this site and downloaded OSCAR and see only hypopnea and Unclassified Apneas which are quite long.

I'm now not knowing what to do or what's going on with her. The higher pressure is knocking a good chunk of her ahi's out. And she tolerates it and falls asleep no problem at all. I hear every cut out she has and im a walking zombie at this stage. I need someones knowledge on what to do or what's happening. I was told by ENT that it could more than likely be neurological or genetic disorder that's causing it. (she's high functioning autistic, also has leg and muscle problems that are still awaiting investigation) I suspect something neurological and have done for some time. Its just getting people to hear me is the problem. I lost count of the medical professionals I've voiced my concerns to. Her sleep doctor is on the same page now as me but she can't see what more she can do for her, or who to get involved.

Any ideas or advice is appreciated, I'm going to try attach an ok night for her and a zoom in of a few of her Unclassified Apneas. 
Google isn't giving me any answers to what's happening so I hope someone in here can help out a bit.

Thank you x

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And these 2  screenshots too.

[Sleeprider]

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.

[Sleeprider]

An afterthought regarding your charts. If you could include the Mask Pressure chart rather than the Pressure chart, we can see how her breathing responds or not to the pressure support. You did a very good job of presenting this problem, and that small change would make things just a bit more clear. Also, I notice her machine is set to S mode. I'm surprised you have not set it to ST mode, which would switch to IPAP pressure when she does not take a breath. Switching to ST mode with breath backup rate at 10 per minute would stimulate some breaths where they are being missed.

[Nicola]

Thanks so much for the replies. The ST mode was switched off as far as I remember when she was hyperventilating (at a lower pressure) during the summer. The ramp also was switched off and some of the settings changed to get her to this point. It’s been a tough road.

Her sleep specialist told us she may try cpap again. I’m not wanting that because it aggravated the central’s last time. She had mentioned earlier In the year about asv - but it wasn’t used on paediatrics? I never looked into it or asked about it since. I may do that now that you mentioned it.

I know her pressure is high but it’s gotten her from 40 odd to around 7-10 an hour this year. She’s gotten increasingly worse as she’s gotten older and we ruled out any of the obvious causes.

Are those events that are showing definitely central’s? Her sleep doctor is convinced it’s mostly obstructive. But it doesn’t show like that in this software.

I’ll try and get that screen shot for you now.

[Nicola]

this is the screen shot here, I zoomed in a little, but not sure if its at the right place... it shows a couple more of the settings on her machine and how she was on it.

if you need it zoomed more just let me know and I'll do it.

[Sleeprider]

Very hard to know if events are central without observation and knowing if respiratory effort is present with an obstructed airway. It is really unusual to see a pediatric patient at these high pressures. My original thought was an ASV titration would be conclusive because it treats both obstructive and central. The VPAP S and ST are not even the most comfortable bilevels. Where backup is not needed, the Vauto is far more comfortable and adjusts pressure up and down for obstruction. What strikes me is that it seems people have a lot of "opinions" about her problems, but where is the problem solving and protocol titrations?

There is something else to consider to eliminate obstructive apnea, and the doctors are generally not aware of this. We have found many members with "positional obstructive apnea" that have very high obstructive AHI. In most cases, this is caused by chin-tucking which causes an occlusion of the airway. This is described in the Positional apnea wiki http://www.apneaboard.com/wiki/index.php...onal_Apnea and the solution is a soft cervical collar http://www.apneaboard.com/wiki/index.php...onal_Apnea Your daughter is using pressure not tolerated by many adults, and still has a high number of events. Imagine if this approach suddenly made low-pressure CPAP possible. The signature of positional apnea, is a clustering of events, which I did not see in the charts posted. Respiration I have seen posted so far, appears to have good strong inspiration without flow limits, and the inspiration time is short. This points more to central than obstructive apnea.

[Nicola]

Thanks so much for looking at her read outs.... I’ve that feeling in the pit of my stomach it’s mostly central but I’m not a professional. But still I keep mentioning it and we’re finally hopefully going that way to seeing if there actually is a neurological cause. I will say tho and I’ve heard this from everyone we’ve met. That she’s not a text book case and is actually going a way that they’ve never experienced before. We’ve tried everything going, and we’re now at a point where I never wanted to be with her. Everything and anything that’s thrown at her problem has gone the opposite way it was suppose to or she’ll seem ok for a few weeks and then go downhill. But we’re now at a point where nothing is actually working now. I did read about sighs before or was it after apnea’s? She rarely has those (I never leave her) she would be lying there breathing and not moving and will randomly stop breathing. My head is actually spinning with it all. But your input is after helping a lot!

[Sleeprider]

Nicola, you can skip a neuro exam for a while, just get a trial on ASV. The source I sent you shows how it is fully automatic. The initial settings are simply:
Mode ASVauto
EPAP min 5.0
EPAP max 15.0
PS min 3.0
PS max 15.0

I mean it could work and be life-changing for your daughter, and you will know you have found the solution. If it fails, in a trial, what have you lost? It sure isn't going to be worse than what they're doing to her with that ridiculous high pressure! Most people using ASV have idiopathic centrals (without cause), or just have therapy onset centrals. Let's not make this too complicated. You can know if it works in one night. Ask for a trial of ASV.

[Nicola]

Thanks so much for your help, I’ll push for her to get onto that machine. I’m due to speak with them this week.

[Sleeprider]

This machine goes by different names in different parts of the world. Here in the U.S.A. it is Resmed Aircurve 10 ASV. Your doctor may recognize it as the Resmed Aircurve 10 CS Pacewave. https://www.resmed.com/epn/en/consumer/p...ewave.html Central and complex apnea is very under-diagnosed and many physicians are unaware of this therapy. Since it solves both obstructive and central apnea with the most intelligent and gentle combination of pressure and pressure support, it is much easier to live with and safer for pediatric and elderly patients that may not tolerate constant high pressure. Please be firm in getting permission to try it.