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Unsuccessful cpap 2 months in - Needtosleepwell - 12-08-2020
[attachment=28591][attachment=28591]Hello,
My 17 year old son is new to cpap and I just ordered two elbow immobilizers for his arms, hoping they will stop him from taking off the mask after falling asleep. I also ordered a buckwheat pillow. We are desperate to get him some sleep using his cpap-whatever it takes. He is VERY tired every minute of every day. But, we will not give up.
He wears only his mask during the evening for 2 hours to adjust his face/brain to wearing it.
I'm attaching his OSCAR for last night and the night before for any opinions for any changes to make. We recently changed his minimum pressure from 4 to 6 and he had ONE night where he slept 6 hours with it on, but since then has only had 30 minutes minutes to 1 hour a night of cpap, which is his usual. I think the 30 minutes to 1 hour of time recorded on OSCAR is the amount of time when he is awake and NOT sleeping. Then he falls asleep and removes his mask, end of cpap for the night.
I did set my alarm and woke him up to put his cpap back on, and OSCAR showed he wore it for 20 minutes more minutes, probably the time it took him to fall back asleep, and then off went the mask, ending cpap for the night.
I called the pulmonologists office, the nurse said she has never heard of anyone needing to wear elbow immobilizers or still adjusting to cpap after 2 months. The dr said to keep trying to get used to it and come back in 2 months. I ordered the elbow immobilizers anyways-what if it works?
Thank you for reading and any opinions you have
Leila (Mom of cpaper)[attachment=28590]
[attachment=28591]
RE: Unsuccessful cpap 2 months in - Sleeprider - 12-08-2020
What does your son say...specific complaints that make wearing the mask or using the CPAP uncomfortable?
RE: Unsuccessful cpap 2 months in - Needtosleepwell - 12-08-2020
He says he does not like wearing it during the day to get his face used to it because the mask has moisture collecting in it while he is breathing. He said at night it does not bother him. Sigh.
RE: Unsuccessful cpap 2 months in - Sleeprider - 12-08-2020
Have you thought of using a more comfortable interface like nasal pillows. The Resmed Airfit P10 only covers the bottom of the nose, is the lightest mask on the market and may be much better tolerated. It can't cause moisture in his face.
I have a strong preference for the Resmed Airsense 10 Autoset for several reasons, most important is that the air delivery using Easybreate™ is much more comfortable, and while it is an auto CPAP, it actually has bilevel pressure capability with up to 3-cm difference between inhale and exhale pressure. This is really comfortable as it makes breathing easier and directly treats flow limitation and hypopnea. In addition, the auto CPAP algorithm is much more responsive to prevent events. There is no comparison, and I'm not just citing opinion. If you can get a swap, do it.
We're dealing with a 17 year old and the most important thing we can do is to listen and try to deal with real complaints and solve them. I think the idea of using restraints will make him fight the therapy more. I would also back off on daytime use. Our job, (both of us), is to help motivate your son. One way to do this is to let him control his therapy and understand it better. You have OSCAR. Will he use it? Changing the mask could make a huge difference. Just ask the doctor or supplier to make the change. Can you provide any insight on his diagnostic sleep study?
RE: Unsuccessful cpap 2 months in - Needtosleepwell - 12-08-2020
Hi Sleeprider,
With our insurance, it was actually cheaper in the long run to purchase the cpap machine, so unfortubately we won't be able to afford to swap it out. The Resmed sounds wonderful.
He only complains of how TIRED he is. He feels exhausted everyday from long term lack of sleep. He gets migraines and misses school. The neurologist sent us to the pulmonologist, who ordered the sleep study. My son is desperate to do anything to get a decent nights sleep.
He says his nasal prong mask is comfortable at night w/ cpap and he does not mind wearing it, except for trying to get his face/brain used to wearing it during the day - that's when he does not like wearing it. We went with trying a full face mask at night w/ cpap and tried that for a week, he did not like it, said it was uncomfortable and wanted to go back to the nasal prong one, to try getting used to wearing the more comfortable one. He had the same only 30 minutes to 1 hour results on both masks. Made sense to me, so we switched back.
He is open to the idea of the buckwheat pillow, elbow immobilizers and a soft collar. He said he wanted to start with the pillow and elbow immobilizers and see if that works. He is very motivated to have success with his cpap machine. He is tired of being so tired.
Should I not have him wear the mask (mask only, no tubing or cpap) during the day to get his brain used to it?
What mask should we try next, the nasal pillow one? My DME will sell us any mask, he does not ask for a prescription.
I've filled out the forms to get a copy of his sleep study, so that is in process. I'm sorry I don't have that yet. His AHI on the study was 9.9.
Thanks so much for your help.
RE: Unsuccessful cpap 2 months in - SarcasticDave94 - 12-08-2020
FWIW what I had to do myself as a PAP noob was not just wear the mask in daylight hours, but hook it up the same as masking up for the night to sleep. Run the PAP to get used to it. Have your son read a book or watch TV with it on and running. For me it was not just the mask wearing but the whole PAP therapy I needed to get used to. Try different masks or whatever it takes to be successful. But do have your son consider running the PAP in the day just the get used to the therapy.
RE: Unsuccessful cpap 2 months in - Sleeprider - 12-09-2020
It sounds like your son is motivated and a participant in the process of trying to adapt to therapy. My questions were to verify that was the case since self-motivation is important to success. We are a family friendly site, and have had some young people join in the past. Your son is welcome of course to join and ask his own questions and try the solutions members have had work for themselves. Adapting to the mask and becoming comfortable at night is a challenge for many members, and some have problems with removing the mask. This is an especially difficult issue, and unfortunately it is a self-reinforcing behavior or habit that is hard to break. Your approach to use the mask while watching TV or during quiet times of the day is a good tactic. As Dave suggests, it is a lot better if the machine is attached to it and running, otherwise it can feel very clammy and confining. There is no single simple solution, but it sounds like your son is working to avoid or break the mask removal behavior. The most important part is to immediately replace the mask when you realize it has been removed.
To make the tube more tolerable, look into a nice soft fleece CPAP tube cover. These run from $9-$20 and make the equipment a lot more comfortable and less medicinal looking. I use a lanyard to suspend the tube to the headboard above the bed, and other members also use means to keep the hose from dragging on the bed. This can help keep the mask on for an active person, as it will more easily move with you. I have not known anyone to use restraints, however there are head coverings to help keep the mask in place. Look for the Knightsbridge dual chin strap or PAP cap as a possibility of keeping the straps inaccessible during sleep and keeping the mask in place. I think with your son's motivation this problem will eventually diminish and pass.
With regard to settings, the minimum pressure on your son's machine is quite low at 6.0 and he may want to experiment with increasing that minimum pressure. Also, advise that the Flex setting be set a 1 or 2. I have found Flex at 3 can cause problems with the feel of the inhale/exhale sync. He is doing very good with mask fit and leaks based on the charts you posted.
RE: Unsuccessful cpap 2 months in - GWild - 12-09-2020
Another thought, if your son is tossing and turning, belly sleeper, that sort of thing, a pillow to help him stay supine might help. I know my mask drives me nuts when I roll over. And it isn't something you ever get used to: the mask simply hurts when you are laying face down on it.
RE: Unsuccessful cpap 2 months in - Needtosleepwell - 12-09-2020
Hi Dave,
Thanks for your post. I never would have thought about that, but what a great idea. I was thinking along the lines that he needs to get used to the MASK, when actually, he has to get used to the THERAPY as a whole! Great idea to use the machine during the day while awake!
Hi Sleeprider,
Thank you for your ideas - I've not thought of the tube making noises or getting in the way. A fleece hose cover sounds like a good solution. What do you attach the lanyard to to suspend the hose over the bed?
We are hanging in there.
Thank you for your help!
Leila.
RE: Unsuccessful cpap 2 months in - SarcasticDave94 - 12-09-2020
Welcome.
Best wishes you and your son find the success needed. BTW we have rule 22 on the Apnea Board, nobody is allowed to quit. Tell your son he's going to win, we here at AB will help however we can.