Young Adult with Down syndrome, can't find mask that works

[Janknitz]

the woman at the supply place said that the pressure has to be dictated by the prescription, and since his prescription is for 17, we can't start it at lower and still have the insurance company pay for the equipment (and we can't afford it on our own). He's doing that ramp feature, and someone suggested yesterday "auto setting from 12-17", so we're looking in to if we can have the prescription switched to that. It would make more sense to do it the other way though, so it's frustrating that we have the insurance stuff hanging over our heads...

As far as changing the pressure, the "official line" is that you can't change the pressure on your own, but in reality you can and your insurance company doesn't care, not even one little bit. However, this is a complex case, and it shouldn't be done willy nilly. It is a medical prescription--changing pressures is akin to changing the doses of your medication without your doctor's OK. You may come to a point where you decide to do that from a place of knowledge with the data and a good understanding of what you're doing, but let's see if we can get your brother comfortable with the titrated settings first.

As for "auto setting from 12 - 17", his current machine CANNOT be set up that way--it requires an autopap, called an Autoset in the ResMed line. The Elite is a fixed pressure machine--although it will ramp, it holds one pressure once it reaches that pressure. They should have given him an auto in the first place given the complexities of this case, but it would be a big fight to swap out machines at this point (if you're interested in trying see "Help, I'm stuck with a Brick" in my signature below. Everything points to the fact that the DME you've been using is more interested in helping their own pocket than helping your brother be successful at this therapy.

The Fit Life might be a very good mask for your brother, but some people find their head isn't the right shape to keep it leak free--sigh, it's always something. If you learn how to read the data you'll see how much leakage there is and when it typically occurs. It's after the fact, but gives you the opportunity to tweak a little bit until it's just right.

Hang in there--you're doing a great job!

[Pugsy]

Concerned Sister....check your PMs in a couple of minutes. I will send you a link for ResScan just in case someone else hasn't.
SleepyHead I have in my signature links...its smaller and faster and easier to manage but ResScan offers a leak graph with a red line that makes it real easy to see how big the leak is (over the red line) and how long.
So makes evaluating the leak graph itself a bit easier.

[Pugsy]

Regarding the mask off or high leak alarms....the S9 doesn't have one in the Elite or the Autoset. The VPAPs have them but to be honest they are pretty much useless...doesn't even wake me up.
Now the Respironics PR System one cpap/apap machines have a mask alarm for large leaks (and removing the mask will trigger it) but again it is pretty much useless because it is nothing more than beeping similar to what is heard when we start the machine.
It has caused me to wake up though but only after quite a long period of time and it is unlikely that it would even wake another person sharing the same bed. They simply are not very loud and not nearly annoying enough.

Now if he is removing the mask and not really knowing that he is doing it....this happens to lots of people as they remove the mask at sometime during the night and wake up with the mask off and they have no recollection of doing it...sometimes we advise people to put a little tape over the straps in a couple of places so that when the mask gets remove the tape pulls on the skin and is annoying enough to cause a full awakening and hopefully the person will stop taking the mask off at that point.
I don't know if that is something you want to try with your brother or not. You know him better as to whether he can understand the behavior and respond to the tape pulling.

[SleepingUgly]

Oh, I didn't realize they have a "full" one..... it covers the eyes also? I wonder if he would find that more aggravating?

The air is so diffused throughout the mask that it doesn't feel like air blowing in the eyes. It's an option if the others don't work.

The best advice I can give you is to try everything out during the day, like a dress rehearsal. Set the machine to 17 and try to get the straps situated correctly to control the leaks with him pretending to sleep in all the positions he normally sleeps in. If you can't get it not to leak during the day (including whatever "fixes" have been suggested for that particular mask or type of mask), forget that mask because it will just be worse at night.

[SleepingUgly]

But overall, IMO, there is a danger if the Down Syndrome user starts playing with the machine's knobs. I would go even further by saying that the machine should be tamper proof somehow to avoid the Down Syndrome user access to the machine's controls.

Sister, ignore this nonsense. I had a 7-year-old child with ADHD on CPAP and the worst thing that ever happened was that he'd forget to reattach the mask to the hose and slept with the mask on and no CPAP running. Frankly, I've done that too, and I don't have Down's Syndrome nor am I 7 years old. It is not that easy to get into the clinician's menu if you don't know how to do it.

[concerned_sister]

But overall, IMO, there is a danger if the Down Syndrome user starts playing with the machine's knobs. I would go even further by saying that the machine should be tamper proof somehow to avoid the Down Syndrome user access to the machine's controls.

He's pretty good with technology, so I'm not too worried about this. He can turn the machine on and off, and restart the ramp cycle if he takes the mask off to go to the bathroom or wakes up, etc.

[concerned_sister]

Insurance companies don't get a report on what the pressures are...If they get anything other than the DME telling them that the required % of time each night has been met it will be just a report showing compliance hours...they take no interest in pressures used or AHI or leaks or anything like that. The DME is playing the scare tactic card.
Normally most insurance companies require that the machine be used for 4 hours or more for 70% of the nights used. Most of the time 30, or 60 or 90 days are used. It all depends on the insurance company. 4 hours a night...that will satisfy most insurance companies. If your DME is telling you more than 4 hours is needed and like every night......I would ask the insurance company directly and not rely on the DME because sometimes the DMEs play the scare tactic card with compliance requirements also.


Get the software and let's see just how bad those leaks are and how long they are lasting along with how much use he is actually getting.

Ugh, that's frustrating, we could easily meet the insurance companies "compliance" timeline if we could reduce the pressure I bet, but they told us that we couldn't change the pressure? So frustrating! Installed the software, so will try to get the SD card to read on our computer tomorrow and see if that helps.

[avi123]

But overall, IMO, there is a danger if the Down Syndrome user starts playing with the machine's knobs. I would go even further by saying that the machine should be tamper proof somehow to avoid the Down Syndrome user access to the machine's controls.

Sister, ignore this nonsense. I had a 7-year-old child with ADHD on CPAP and the worst thing that ever happened was that he'd forget to reattach the mask to the hose and slept with the mask on and no CPAP running. Frankly, I've done that too, and I don't have Down's Syndrome nor am I 7 years old. It is not that easy to get into the clinician's menu if you don't know how to do it.

SU, do you want to tell me that a person suffering from Down Syndrome (DS) could set a CPAP machine, change pressures on it, and may be even use an SD card to check graphs on a laptop? How much do you know about the capabilities of those with DS? Do you assume that a person suffering from ADHD has the identical limitations as one with DS? Otherwise, it seems to me that you're a sort of a shvitzerit in this case too. Do you remember when I posted, 2 years ago, that a person's neck size could be used as a possible indication of having OSA, and you gave me hell for posting it. Do you remember it or should I repost it again here?


A possibility for the sister with the DS brother is to explore the following arrangement which is available today:

ResTraxx™ Online

http://www.resmed.com/us/assets/documen ... er_eng.pdf

At this time clinicians from their center could change the setting on the machine, remotely, if needed.

[concerned_sister]

As for "auto setting from 12 - 17", his current machine CANNOT be set up that way--it requires an autopap, called an Autoset in the ResMed line. The Elite is a fixed pressure machine--although it will ramp, it holds one pressure once it reaches that pressure. They should have given him an auto in the first place given the complexities of this case, but it would be a big fight to swap out machines at this point (if you're interested in trying see "Help, I'm stuck with a Brick" in my signature below. Everything points to the fact that the DME you've been using is more interested in helping their own pocket than helping your brother be successful at this therapy.

The Fit Life might be a very good mask for your brother, but some people find their head isn't the right shape to keep it leak free--sigh, it's always something. If you learn how to read the data you'll see how much leakage there is and when it typically occurs. It's after the fact, but gives you the opportunity to tweak a little bit until it's just right.

Hang in there--you're doing a great job!

Man, wish we would have started with that other machine :/ I don't mind trying to fight for the other one, but it's exhausting, all this back and forth and who to believe. I guess we'll try the software first, and see what we can do with that, before trying to fight for the other one (at least for now).

And thank you! Glad for all the support here, it's amazing.

[concerned_sister]

Now if he is removing the mask and not really knowing that he is doing it....this happens to lots of people as they remove the mask at sometime during the night and wake up with the mask off and they have no recollection of doing it...sometimes we advise people to put a little tape over the straps in a couple of places so that when the mask gets remove the tape pulls on the skin and is annoying enough to cause a full awakening and hopefully the person will stop taking the mask off at that point.
I don't know if that is something you want to try with your brother or not. You know him better as to whether he can understand the behavior and respond to the tape pulling.

^ This seems to be what happens most, and usually right around when it kicks in to full pressure, or a bit after. One day he woke up so proud of himself that he'd made it through the night, not remembering that it had been an all night battle getting it back on, off, back on, etc. I'll have to think about the tape idea or something similar, that might be usefull...

[concerned_sister]

SU, do you want to tell me that a person suffering from Down Syndrome (DS) could set a CPAP machine, change pressures on it, and may be even use an SD card to check graphs on a laptop? How much do you know about the capabilities of those with DS? Do you assume that a person suffering from ADHD has the identical limitations as one with DS? Otherwise, it seems to me that you're a sort of a shvitzerit in this case too. Do you remember when I posted, 2 years ago, that a person's neck size could be used as a possible indication of having OSA, and you gave me hell for posting it. Do you remember it or should I repost it again here?
.

I'll look at that wireless suggestion, that might be helpful. I appreciate your advice and suggestions, but just as a note, my brother would tell you that he doesn't "suffer" from Down syndrome (he's a avid self-advocate that does public speaking on the issue), and he can work the controls and settings on his machine, especially after being shown how. (His technical abilities are ESPECIALLY annoying when he hacks into his sister's Facebook page to post annoying fake status updates.... ). Thanks again for the advice though!

[jdm2857]

ResTraxx is intended for use by DMEs or physicians. They typically use it to monitor compliance at
the beginning and then take the ResTraxx unit back to use on other patients. It's easier for them
than having patients bring or mail SD cards to them.

The wireless unit is expensive and one must pay to use the ResTraxx website. I don't think that
it is even available for patient purchase.

From your perspective, I can't see why you wouldn't be happy using the SD card with the easily
available ResScan software.

[Stormynights]

http://www.ndss.org/Down-Syndrome/Myths-Truths/ I think there might be an Angry Visious Individual who might benefit from learning a little about what Down Syndrome really is.

I am sure your brother brings a lot of joy to your life.

[123.Shawn T.W.]

I imagine that DME's can not change the pressure, unless they see a prescription for a different pressure, however there is no law that say you can't change it yourself! 14 cm h2o is better than not using it at all! Once he gets use to the more reasonable pressure for a newbie ... You can crank it up a little to help him adjust to the higher pressures ...

Lower pressures will usually have less leaks too ...

The DME's do not like think that anybody but themselves are able to change the settings ... They are control freaks (most of them) most of us here know how to adjust our machines ... It is really simple, just ask if you do not already know ... If you have the clinicians manual, it is in there.

Remember who pays for the machine ... You pay your ins co, they in turn give some of that to the DME ... Who sells you a machine ... It is your money, and your machine!

[concerned_sister]

I imagine that DME's can not change the pressure, unless they see a prescription for a different pressure, however there is no law that say you can't change it yourself! 14 cm h2o is better than not using it at all! Once he gets use to the more reasonable pressure for a newbie ... You can crank it up a little to help him adjust to the higher pressures ...

This may be the thing to do at this point, but I have to say that I'm still nervous about what could happen if we adjust the pressure (since the DME said they wouldn't pay if we changed it), any idea how I could double check this before adjusting it myself?