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

Hi I'm a DME provider (don't hate). We've had success using a total face mask with our Down Syndrome patients. (See the Fit Life).

Is your brother's machine the S9 Elite showing in your profile?
If so, is the hose from the humidifier the ClimateLine heated hose or the regular or slimline non heated hose.
If it isn't...which machine is he using?

Look at this picture of the Climateline and see if it is what he is using.
https://www.cpap.com/productpage/resmed ... ntrol.html

If you don't see a temperature setting option available on the humidifier then likely the hose is the non heated hose.
Using a heated hose like the ClimateLine will enable you to set the temperature so that the air going to his nose is much more comfortable.
I know exactly what he is talking about.....I call it ice cube nose. And it can feel so cold that it causes discomfort. I have had first hand experience with it.
The heated hose will fix that real quickly.

Here's a link for the provider/clinical manual for the S9 machine. It explains in more detail about the various choices with humidity and temperature setting.
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf

If his machine is not the S9...let me know what machine and I will get you the manual for that machine and explain any heated hose options that might work with a different machine.

Also check out my signature line for information on software that can be used so you can monitor the effectiveness and see how troublesome the leaks might be.

If you can remove the ice cube nose syndrome...he might do very well with the existing Liberty mask or you might consider giving one of the other nasal pillow masks a try. If he is mouth breathing very much the software will show large leaks and things can be done to try to limit the mouth breathing.
I wouldn't suggest trying a nasal pillow mask or even an over the nose mask until the ice cube nose issue is resolved though. It will just make it worse.
If you do decide to try a nasal pillow mask at some time I would suggest the Aloha....it is probably a little more stable and managed a little easier than the ResMed Swift FX nasal pillow mask but he might do very well with the Swift FX.
I do think it is sure worth a trial at some time in the future just to check it out. Nasal pillow masks have the least amount of surface area touching the skin so leaks are so much easier to manage and fit is easier.

Address the ice cube nose first though. Until his nose and face aren't feeling so cold he is going to be uncomfortable and just about any mask will be a potentially uncomfortable mask due to the cold air.
There are multiple ways to help limit ice cube nose....the easiest and most comfortable is the heated hose.

I'm no Dr ... But if it were me ... I'd drop the pressure down 2-3 cm ... Until he gets use to it ... Then bump it up slowly .4 cm every other day ...

When first using a cpap machine the hurricane blowing is very noticeable! Over time what once felt quite forceful, now is only a light breeze!

I don't use a heated hose ... I sometimes sleep in my semi truck down into the high 20's! I do however tuck the hose under the covers ... That keeps it from freezing! I moved from Vermont to Arizona because I hated the cold as I got older ... Might be a simple help ...

anon wrote:Hi I'm a DME provider (don't hate). We've had success using a total face mask with our Down Syndrome patients. (See the Fit Life).

Thanks for the advice. I think that's what he's trying now (last night was the first night), and he says it's better then what goes up his nose, though there is still leakage (machine said "high leak") around his nose area, and still didn't make it more then a few hours last night. (We are getting NO sleep in this process...)

Pugsy wrote:Is your brother's machine the S9 Elite showing in your profile?
If so, is the hose from the humidifier the ClimateLine heated hose or the regular or slimline non heated hose.

Oh that's good advice, that is the machine we use, but he does not have the ClimateLine heated hose thing, and that might be a huge help. Apparently our insurance will only cover that if the doctor adds it to the prescription, and not sure then if we'd get it soon or not, but left the doctor a message, fingers crossed!

123.Shawn T.W. wrote:I'm no Dr ... But if it were me ... I'd drop the pressure down 2-3 cm ... Until he gets use to it ... Then bump it up slowly .4 cm every other day ...

When first using a cpap machine the hurricane blowing is very noticeable! Over time what once felt quite forceful, now is only a light breeze!

Yes! This makes perfect sense to me, and we would do that, but 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...

Also, any chance anyone knows of a way to be alerted via smartphone when the mask leaks, is taken off, or re-starts? Currently we have to just randomly check on him every half hour or so, but having an alert/alarm that would let us know right away would be a HUGE help....... Given that the machine does send a wireless signal, I would think that an app could be developed....?

concerned_sister wrote:Also, any chance anyone knows of a way to be alerted via smartphone when the mask leaks, is taken off, or re-starts? Currently we have to just randomly check on him every half hour or so, but having an alert/alarm that would let us know right away would be a HUGE help....... Given that the machine does send a wireless signal, I would think that an app could be developed....?

I don't know of such an app, but most machines allow you to set a leak alert. The problem is that if it goes off, it will wake him, and that's no good for sleep either. I'd work on trying to eliminate leaks during the day and go to bed with the mask set up to where it didn't leak. Then you're at least starting from a place of some hope that it won't leak, although it can certainly start leaking later. You'll have to eliminate ramp so you're testing for leaks during the daytime at 17, not at the ramp pressure.

I don't know about insurance not paying if it's not used at the right pressure. I thought all they care about are the hours of use. But admittedly, I don't know much about this.

The mask that you list on your posts is a full face mask, but not a mask that covers the entire face, like the anon and I suggested. The fit life and total fit masks cover the entire face - kinda like a catchers' mask. It can't leak around his nose, because it frames his face.

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

Here's the FitLife total face mask:

https://www.cpap.com/productpage/respir ... dgear.html

I think it's awesome that the Fitlife looks so much like the masks worn by firefighters.
If someone was having difficulty getting a child (of any age) to try this mask, a visit to a firehouse might be a help.
(I'd call ahead first.)

I have been using Resmed S9 Elite and S9 Autoset machines for three years but never heard about audio alarms for large Leaks or for taking the mask off, or by putting the mask ON without having the machine started. It would be nice to have such alarms. There is one feature on these machines which would shut the machine if the mask is taken off and restarts when the mask is mounted on. Another important device to have is a "power failure" alarm available also at Amazon, to sound an alarm in the case of a electric power stoppage:


http://www.amazon.com/Reliance-Controls ... page+alarm

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.


Full Face mask:



Total Face mask:



Nasal mask:



Nasal Pillows mask:

Mr Frowny face on the S9 in regards to mask leaks doesn't show up until 25% or more of the time the machine is used is spent in leaks over 24 L/min. How much over and how long is a detail you might want to educate yourself on.
Also make sure that you have the correct mask selection choice in the setup menu for the type of mask used. It doesn't alter the pressure but it can affect the leak numbers because of how the S9 calculates large leaks.
It's probably already set to Full Face mask but if you haven't confirmed it...then I would do so to make sure.

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.

We all want our loved ones to have the most optimal therapy as possible with minimal leaks and sleep through the night but sometimes we have to compromise at bit (especially at first and when using high pressures like the 17 cm). It might not be perfect but some therapy is better than no therapy and leaky therapy is better than no therapy.

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.

That pressure of 17 is a difficult adjustment for anyone. Get with the doctor about maybe starting with something that doesn't feel like a hurricane. Again...some pressure is better than no pressure. We can't expect to hit home runs the first few times at bat. Sometimes we need to take smaller steps and work up to the big stuff.

The comment that Avi made about locking your brother out of the machine...that makes me sick to my stomach to hear that comment. Tasteless comment but not the first time that Avi has stepped in it and won't be the last I am sorry to say.

concerned_sister wrote:someone suggested yesterday "auto setting from 12-17", so we're looking in to if we can have the prescription switched to that.

He has the S9 Elite (which is a great machine) but it can only do a straight pressure at 1 pressure only. He would have to have the S9 AutoSet (an Auto CPAP machine) to be able to do the 12 - 17 "range".

The insurance is only interested in "compliance" (that he uses the machine generally for at least 4 hours a night for 70% of the nights in a 30 day period).
They do NOT care at what pressure he uses it.

If you do decide to try lowering the pressure (as someone else suggested), I would first get the ResMed ResScan software so that you can better monitor what is going on.
In fact, even if you do not ever lower the pressure, the software will tell you (amongst many other things) what his real leak is, how long he is using it, etc, etc, etc.

EDITED to add:
I see that Pugsy's much more elaborate post beat mine to the posting gate.
I won't delete mine, but I can tell you that you canNOT go wrong by listening to Pugsy & I assure you I am not the only one that will tell you that.