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

avi123 wrote:Stormy, you see it that you're on my IGNORE list. If you don't stop answering my posts, as you been doing for some times, I'll report it to the owner of this Website. I was told by the owner that a poster does not suppose to do it. I told you once to stay away from my posts. Please go nit pick on others.

I thought when you foed me you couldn't see my posts. Please stop reading MY post if you don't want to know my opinion. We all have a right to an opinion. Sadly including you. I have seen you give help to people in need and I have seen you be horribly rude for no reason. It would be a shame if someone thought that this forum would recommend surgery for someone trying to find the right mask.

If I am on your ignore list please ignore me.

concerned_sister wrote: He's currently using a ResMed mask that has two things that go up his nose (nasal pillows?) and a thing that goes over his mouth (the hose comes out of that one).

Do you mean the Resmed Liberty?

2) My brother is supposed to be using pressure number 17, though it starts out slower and increases slowly. He does okay, and will even fall asleep, but when it kicks on to 17 he wakes up scared and kind of gasping a little, and might even turn the machine off. He says it feels like icicles up his nose. Is this common? Should the machine be warming the air at all?

He should have a humidifier with his machine that can be set to a warmer temperature.

Do you mean that he has a straight CPAP pressure of 17 and a ramp up to that pressure? Or do you mean that he has an Auto-PAP with a range of pressures that sometimes goes as high as 17?

3) Sometimes there is cold air blasting up towards his eyes, which also really bothers him, any tips?

If he's using the Liberty, which is like the Innomed Hybrid, the pillows may be getting loose and leaking into his eyes. There's a bunch of "fixes", including some with pictures, for the Hybrid, buried on this site. Some of them were posted by Bleeping Beauty. They generally involve doing things like attaching hair scrunchies (the little ones) to the pillows and tying them up to the headgear (like over the bridge of the nose). You can see if this is the problem by turning on the machine with the mask on him (without ramp engaged, so that it will go up to 17 immediately) and seeing where it leaks. If it leaks from the pillows, try to ascertain whether pulling up on the pillows would eliminate the leaks. If you think it will, I can try to search for those posts by Bleeping Beauty.

This is all assuming we're even guessing correctly that he's using the Resmed Liberty...

Can he breathe through his nose? If not, the only other options besides these hybrid types are full face masks and total face masks (and the Oracle, but I wouldn't jump to that, that's for sure).

hyperlexis wrote:
However, honestly, the DMEs should be doing their darned job on this one. This is a specialized case and the DMEs should be the ones worrying about this issue -- not you. That's what they get paid the big bucks for. I would expect the insurer could be dealt with regarding compliance under the circumstances.

Good luck!

I agree! Glad someone else thinks so also So frustrating, the amount of back and forth we've had to do, and feel like we're getting no where!

Janknitz wrote:Concerned sister, PLEASE register so that your brother's equipment will show and I will send you an important PM.

I just registered, and included the newest mask, which we just got today (every time we go, they give us a new mask, but I feel like they're just throwing one at us every time, without a lot of thought....). Hopefully the info will show on my profile?

Wait, is the Comfort Gel Full Face mask the one your brother is using, or is this YOUR equipment?

chunkyfrog wrote: 2. His doctor needs to help in getting extensions with insurance--(medical necessity; and insurance liability).

I called today to ask about this, the nurse and the insurance company said we could have the doctor submit a letter, but there was no guarantee, and they don't always grant extensions...

avi123 wrote:
concerned_sister , I wouldn't be surprised if your brother would need a Tracheostomy to connect the machine to his lungs, instead of using masks, or the Tracheostomy would eliminate the need for a mask and a machine altogether.

I'm hoping we don't have to go that route. He's very high functioning, articulate, and capable, so I am incredibly optimistic that if we can find equipment that fits right, and get him used to it, we hopefully won't need any surgery.

SleepingUgly wrote:

concerned_sister wrote: He's currently using a ResMed mask that has two things that go up his nose (nasal pillows?) and a thing that goes over his mouth (the hose comes out of that one).

Do you mean the Resmed Liberty?

I think so? But since this afternoon they gave us a new mask (his third one), which is a full face mask with gel cushion

2) My brother is supposed to be using pressure number 17, though it starts out slower and increases slowly. He does okay, and will even fall asleep, but when it kicks on to 17 he wakes up scared and kind of gasping a little, and might even turn the machine off. He says it feels like icicles up his nose. Is this common? Should the machine be warming the air at all?

He should have a humidifier with his machine that can be set to a warmer temperature. - Hm, it has a humidifier, I'll have to see if I can figure out how to change the temperature. I couldn't find anything in the instructions, but I might have just missed it.

Do you mean that he has a straight CPAP pressure of 17 and a ramp up to that pressure? Or do you mean that he has an Auto-PAP with a range of pressures that sometimes goes as high as 17?- It's a ramp up to 17, and he does well on the lower pressures, then when it gets to full force he will wake up in full blown panic. It's heart breaking to watch. He says it's like icicles up his nose and it hurts.

This is a situation where an autopap could really help, but otherwise it's a good machine. Do you know what your brother's AHI is on the machine? If you don't know how to check, someone here will help. Pugsy can send you a link to the manual with instructions for adjusting the temperature.

He's probably going to have less discomfort in his nose with the gel mask, but more leakage. Watch for pressure on the bridge of his nose.

oak wrote:as a newbie here, with total seriousness, I have a question: why does this AVI guy get to stay on the boards? his hostility and egotistical and dramatic remarks are so disruptive.

Reply,

There are many posters on this board who post incessantly foolish posts, apparently seeking attention, and many of them are quite bullies. As a matter of fact these are some of the side effects of being plagued with OSA. So I automatically put these who I find to be bullies on my foe (ignore) list rather than associate with them. This is the purpose of having a foe list, as I was told by the owners of this website. In addition, the prevalence of men to women with OSA in the population is 5 men to one woman. But for some reasons it is reversed on this board. Lots of women have decided to post on this board and most of them do it without revealing their gender. So for the statistical accuracy sake I have decided to keep 5 times more ladies on my ignore list than men. If you find my posts hostile, egotistical and dramatic, just add me to your foe list. It's simple as that. It might please you, especially as a newbie eager to learn from pleasant, social, and simple posters. You might one day even become a moderator on this private website that lacks moderators at the present time. Who knows?

I don't even know what the AHI is, let alone how to check it. (Apparently I am very far behind!)

And yeah, I'm worried about the pressure on his nose, I've heard it's worse for people with Down syndrome, because of the smaller bridge, so hoping it won't be too bad..

Can he breathe through his nose? He will have a lot more options if he can...

Yeah, he can breath through his nose, though often sounds nasally when he does

If he can breathe exclusively through his nose, he could use a nasal mask. Nasal pillows may be possible, but some people find they leak at high pressures. The less mask, the less area for leakage. But if he can't keep his mouth SHUT, he will need a chinstrap. If you have some doubts about his nasal breathing ability, you may want to keep trying the full face masks first.

Have you tried a mask that covers his entire face? That might do the trick - can breathe through his nose and mouth, no pressure against the bridge of his nose.