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

Hello! My brother is a 23 year old male with Down syndrome who was recently diagnosed with severe sleep apnea. We're trying to get him used to the mask, but we're having a number of difficulties, and if we don't get him used to it quickly the insurance company will not pay for the equipment, so any/all help would be useful!!!

1) We can't seem to find a mask that doesn't leak a lot. He has all the typical Down features (less bridge on nose, flatter face, smaller head/face, etc.), so not sure how much of the fit issues is that, versus our medical supply company, which doesn't seem very good (they sent us home with a mask they forgot to fit, etc.). 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). The straps have broken some on it, but there's not as much leaking as the first one he tried (a ResMed full face mask).

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?

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

4) Anyone know how to get the insurance companies to extend this limit they have before they stop covering the equipment?

I. " Icicle nose": a hose cozy wrapped around the hose will help, let him pick what color/pattern of fleece to wrap around it.
(cheapest cover: wrap a strip of fleece in a spiral-not too tight- and secure at both ends with a bit of tape or Velcro)
2. His doctor needs to help in getting extensions with insurance--(medical necessity; and insurance liability).

I suggest you take a look at the wisp mask with your dme providers help. call the insurance company to see if there is another dme nearby that is in network for the insurance company that you could try. you are going to need good support with the dme provider to get the right mask. as far as getting some leniency from your insurance provider, I would try to get the doctor to write a letter (and copy you and the dme provider in) to the insurance company, explaining the situation and indicating you will diligently work with all parties to get a comfortable mask etc. Good luck! You are halfway there!

You are describing the ResMed hybrid mask he is now using. It's a cross between a FF mask and a nasal pillows mask. The air shooting up the nose with pillows can feel that way. A heated hose system can help. There are a few standard nasal masks and full face masks out there that offer "wide" cushions (off the top of my head I can't remember all of them but the Respironics FullLife FF does, as does the ResMed Mirage FX nasal mask), better designed to fit certain faces, races, etc. That may work. Although it sounds like he may need a good full face mask if he can't keep his mouth closed while sleeping using just a nasal or nasal pillow mask.

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.

You are definitely not the only one dealing with this problem -- several other posters have faced caring for people with the same condition. Apnea is common because of the nose and large tongue, etc. There are probably many DMEs and sleep med physicians that sub-specialize in treating patients with this condition.

Good luck!

The Hybrid mask is not for everyone. Others have been successful using it with a pressure of 17. Full face masks without nasal prongs may be easier to use.
The face goes slack when we fall asleep, so the strap settings that work well when he's awake may have shifted when he's actually asleep.

Have you thought about having him try the mask while not sleeping so he can get used to the pressure? He could play a computer game or watch TV.

If you can tell us the exact model of his mask and machine, we might be able to give better feedback.

There is a pediatric forum on the Sleep Apnea Support Forum, here: http://www.apneasupport.org/pediatric-s ... 96c0381144

I know your brother is an adult. But the sensory problems and other issues in Down's are common in pediatrics, so the parents on that forum may have some valuable info for you. There are several Down's kids whose parents post there. That forum does not allow anyone to discuss tweaking settings on the machine, we can help you with that here.

Sounds like your brother is doing very well to be able to fall asleep with the mask on, and maybe the settings just need to be adjusted so that final pressure won't wake him. It also sounds like he has a great support system

Janknitz wrote:There is a pediatric forum on the Sleep Apnea Support Forum, here: http://www.apneasupport.org/pediatric-s ... 96c0381144

I know your brother is an adult. But the sensory problems and other issues in Down's are common in pediatrics, so the parents on that forum may have some valuable info for you. There are several Down's kids whose parents post there. That forum does not allow anyone to discuss tweaking settings on the machine, we can help you with that here.

Sounds like your brother is doing very well to be able to fall asleep with the mask on, and maybe the settings just need to be adjusted so that final pressure won't wake him. It also sounds like he has a great support system

Question,

Jan, why couldn't you do the search there and find posts about Down Syndrome, and post the links here? I could not find any.

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.


Obstructive Sleep Apnea & Down Syndrome:

http://www.ndss.org/Resources/Health-Ca ... -Syndrome/

Check also:

http://www.ncbi.nlm.nih.gov/pubmed/21918449

My sister's 12 yrs old granddaughter who has Down had a Tracheostomy done on her. But it developed a growth inside her throat which will be treated soon and at which time they will also close the hole. For some time she used a cervical collar to help with here breathing. I can't foresee her using a CPAP mask. Physicians are suggesting to give her antidepressants to have her comply with simple tasks, so no way that she would wear mask. Your brother might be different.

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

avi123 wrote:

Janknitz wrote:There is a pediatric forum on the Sleep Apnea Support Forum, here: http://www.apneasupport.org/pediatric-s ... 96c0381144

I know your brother is an adult. But the sensory problems and other issues in Down's are common in pediatrics, so the parents on that forum may have some valuable info for you. There are several Down's kids whose parents post there. That forum does not allow anyone to discuss tweaking settings on the machine, we can help you with that here.

Sounds like your brother is doing very well to be able to fall asleep with the mask on, and maybe the settings just need to be adjusted so that final pressure won't wake him. It also sounds like he has a great support system

Question,

Jan, why couldn't you do the search there and find posts about Down Syndrome, and post the links here?

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.


Obstructive Sleep Apnea & Down Syndrome:

http://www.ndss.org/Resources/Health-Ca ... -Syndrome/

That is a crazy idea. He just needs a mask.

I use the Fisher Payker Nasal pillows Pilarno(not sure of spelling) and it works great. It does push air up the nose but I have never felt cold air. Try the hose cover and it should be ok. You normally will have less leaks with the nose pillows and can move around at night easier. Also does not have to fit his face as much. I agree if he can wear it some watching tv he will get use to the air up his nose. I have only been on this 1 month but I now have to check to see if the air is actually flowing. Good Luck

del

Question,

Avi, why couldn't you do the search there and find posts about Down Syndrome, and then PM the to Jan so that she could post the links here?

As for your second suggestion, you are an idiot. Why upset people with drastic actions that in all probablility will never be necessary? They
are working diligently, and will find a way to make CPAP work. Do you just like causing drama?

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.

Avi..., how in hell is anyone supposed to figure out that they are on your "ignore" list... its not our list its yours. Dumb ass! Please do go ahead and report us to the owners of this site... I would not be surprised that YOU get censured not anyone else. You are not the chief here... there are not ANY chiefs, Johnny and Carolyn allow everyone to monitor their own threads unless there is a flagrant problem. On this site YOU are the problem not others. This person asked some serious questions regarding her down syndrome brother, and need answers... not your ruffled ego.

Stormy.. just ignore this dumb ass old man he thinks "he's" the top dog... and we all know he's not.

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.

This board is virtually unmoderated.

Unless someone notifies the owners of some major transgression, they don't interfere.

Just ignore him, and maybe he'll go away.