Keeping CPAP mask on--Please advise

My daughter is an adult with Downs Syndrome who has severe chronic sleep apnea and wears a CPAP mask for this. Either she takes it off while sleeping or it slips off. She may have untreated PRLM also. Due to some changes in funding, her quality of life will be significantly lessened unless we can dispose of full time staff with her at night to check that she is wearing her mask every two hours. They will not insist on overnight staff if the doctor will say her condition is not life threatening. Physically she is very healthy-great colesterol and triglyceride levels, does Curves regularly, significant weight loss in past 2 years. Twice the doctor has dropped her pressure level due to her weight loss. Formerly she required oxygen at night but is off it now. (Incidentally, I also wear a CPAP and am helped by klonopin for RLS.)

She requires no heart medication, does not have asthma, etc. Do most folks think this is a life threatening condition? If her mask comes off would she just be sleepy the next day or likely die? The doctor seemed insulted when I said I wondered if it was really life threatening.

Several questions above, I guess. 1.Is the condition as described life threatening?

2. Any suggestions how to get the mask to stay on during the night?

3.If she has PRLM what is the best med to request for her and could this be the cause of the mask coming off at night?

4. Can you suggest anything at all? If she has to continue having overnight staff she will need to be separated from her roommate, put with someone she doesn't know and possibly go to a group home in another county.

I am a newbie at all this, but it seems to me that one solution would be to get a machine with a computer interface, such as the GoodKnight 420E. Hook it up to the computer and redo the software to detect mask removal.

I imagine the protocols to be pretty straightforward and, so long as you are not trying to reprogram the device, the programming should be somewhat straightforward.

When mask removal is detected, ding an alarm and a nice person can come put it back on, or your daughter can be woken up to do it herself if that would work.

Less complex would be to put a pressure sensor in the hose or the humidifier. when the pressure drops below a set value, an alarm can go off to the same effect. This would not require a computer, only a very simple comparator circuit.

I imagine there are many solutions related to more effective mask retention...

Sailor Boy's suggestion was a good one, but I think there is a machine out there that has an alarm, although some have said it is not very loud. An APAP machine on it's own might keep her from removing her mask. Quite often this happens if the pressure is too high or too low. Usually a doctor will recommend a higher pressure if some removes their mask frequently, but I think that the pressure being too high will make the patient uncomfortable and they will remove it.

Another cause of mask removal may be comfort. Maybe this mask simply isn't comfortable enough during the night, leaks or makes other noises when she moves about and that causes her to take it off. What kind does she use and what kind of machine does she use.

Is Sleep Apnea life threatening. YES. It leads to higher blood pressure, frequent arousals at night which are stressful on the heart and can lead to heart attacks and strokes. It can also lead to oxygen deprivation if she has OSA and since her oxygen levels will be lower there could also be affects on the brain, I would think.

It has been proven that Sleep Apnea victims often have heart attacks or strokes between midnight and 6 a.m. which is nearly the opposite of normal people who have heart attacks during daytime hours. In other words, she could die in her sleep.

Sorry I forgot to reply to your questions. Her mask is now a full face mask, which works better than the little nose mask. Many attachment caps have been tried, and a chin strap. Part of the attachment cap she's using now sticks up in the air--I think it's for a head with more top to it. Mine does, too, but I pull it down over the back of my skull. Selecting or measuring masks and attachments for a particular patient does not seem to be a highly developed art (or practice). Her CPAP is ResMed. OK, I've accepted that it is life threatening. I can move on to the next part of the problem, which is who will hear the air pressure gauge go off (as per Sailorboy). I'm working on that one. Thanks to both of you.

Nan.

I know the Respironics Remstar Auto has a mask off alert. - According to one poster's report I've read, this alarm is very loud - louder than his smoke alert alarm!

This is Respironics, not Resmed (which sound so alike).

O.

I think this is the only place in the world I would have been able to find so much information on my problem. The internet and this forum are a godsend.

Hi unless I am missing something, my unit doesnot have an alarm when the mask goes off. But I can tell by my breathing, feels like I'm suffocating, and it wakes me up, almost all the time. Not always, as I have had the mask on the floor, in the bed, next to the bed, and the best yet, on the b bathroom floor. Its best to treat the sl. apnea, prevent long term complications down the road. She sounds like she's doing great however. Maybe you can try this, while awake and NOT at bed time. Have her put on mask, (nasal pillow whatever nasal interface she's using), get her machine on question on how it feels to breathe etc. and then take off the hose. see the difference in sensation, will she do this for you? If she can differentiate the sensations and breathing difficulties/change, this may be a shot at her recognizing her mask is off, waking up enuf to put back on, etc. Just a thought, maybe it'd work? My husband who I laughingly refer to as Flashlight Billy wakes up, gets the flashlight to read my numbers, almost every night. He discovered that my nasal Swift, I had on, I had worked the stiffer hose off somehow and I was blowing"" air"' thru my mouth as I had on a chin strap to ostensibly keep my BIG MOUTH SHUT. It must be one sight! I can't quite tape my mouth shut yet. But leaning toward it. If that was the case, and the hose would've come off, I'dve known even more quickly.

I have the softward with my machine, so I can actually track, exactly what time (with about 1 hr) that this occurred and I could match it from me seeing the clock and knowing he's shaking me, "your hose is off"...are you breathing? By this time, I'm wide awake and aiming for an ambien to get some needed sleep. It's a nightly challenge!

May God bless you for your care of your dear daughter!


quote="nanmykel"]My daughter is an adult with Downs Syndrome who has severe chronic sleep apnea and wears a CPAP mask for this. Either she takes it off while sleeping or it slips off. She may have untreated PRLM also. Due to some changes in funding, her quality of life will be significantly lessened unless we can dispose of full time staff with her at night to check that she is wearing her mask every two hours. They will not insist on overnight staff if the doctor will say her condition is not life threatening. Physically she is very healthy-great colesterol and triglyceride levels, does Curves regularly, significant weight loss in past 2 years. Twice the doctor has dropped her pressure level due to her weight loss. Formerly she required oxygen at night but is off it now. (Incidentally, I also wear a CPAP and am helped by klonopin for RLS.)

She requires no heart medication, does not have asthma, etc. Do most folks think this is a life threatening condition? If her mask comes off would she just be sleepy the next day or likely die? The doctor seemed insulted when I said I wondered if it was really life threatening.

Several questions above, I guess. 1.Is the condition as described life threatening?

2. Any suggestions how to get the mask to stay on during the night?

3.If she has PRLM what is the best med to request for her and could this be the cause of the mask coming off at night?

4. Can you suggest anything at all? If she has to continue having overnight staff she will need to be separated from her roommate, put with someone she doesn't know and possibly go to a group home in another county.[/quote]