teenager cpap compliance, what type of help do we need??

Hello,
New to this board. I have a teen who needs to be wearing a cpap for Obstructive Sleep Apnea and has been refusing. Its been two years living with the effects of no sleep-causing phycological problems now. Is there a specific type of therapist that can help them accept the diagnosis, educate them about the benefits of use and long term effects of not using it, get used to the machine and trouble shoot? They are at that age where anything mom says results in eye rolls so Id love to outsource. My teen says they can hear the noise of the breathing inside their head. No type of earbud or earplug has helped. We have a sleep specialist doc but we need more. A phycological therapist recommended an OT to help trouble shoot but they all seem to be OT's for hands or lymphedema. I'm not sure who we need...help!
Also, I've been loving into alternatives to cpap but all the things that keep the tongue forward in the mouth are for over 18-under 18 it all seems to be surgery recommendations. They are not done growing so sawing their jaw in half to make more room in the mouth seems dramatic to me. I am at a loss.

Maybe threaten him with the surgery?
Scaring him straight, as it were.

What type of mask does your teen use? I wonder if them hearing themselves breathing in their head could be the result of a leak? Also different masks have different ways of venting out exhaled air, some masks are quieter than others. It might be worthwhile to have your teen try out some other masks, a good respiratory therapist who has worked with pediatric patients hopefully could help find a mask your teen can live with.
If the mask isn’t the problem maybe you teen is hyper focused on their breathing as they try to get used to using the machine. Perhaps the therapist could help them learn progressive muscle relaxation or guided meditation to help distract the mind and relax them into sleep.

My son was a teen when he started using his CPAP, it wasn’t a quick or easy process but eventually he got used to the CPAP machine. He was having significant psychological issues before CPAP and was failing most of his classes. Sleep deprivation can be brutal, for my son improving his sleep with CPAP was truly life changing. I hope your teen will get there. Be patient take things one day at a time and celebrate even small victories wherever you can find them. Good luck!

Thinking about colomom's reply -- it would be great if your teen could meet other teens adjusting to CPAP. I wonder whether any of your health-care professionals could help in creating such a group (compatibly with HIPPA regulations about patient privacy)?

I am sorry about your difficult situation. Try a direct approach. Compliance = rewards. Non-compliance = withholding privileges.

Dreamsofclouds wrote: ↑

Mon Sep 04, 2023 11:13 am

at that age

I have some ideas on world peace and curing the common cold but absolutely no idea how to get teenagers to listen. But you can't go by whether they appear to listen, because even when they do hear you, they can be very talented at hiding it.

Dreamsofclouds wrote: ↑

Mon Sep 04, 2023 11:13 am

teen says they can hear the noise of the breathing inside their head. No type of earbud or earplug has helped.

I am very sensitive to noise. I find that some masks that route the air up the side of the head make me be very careful about pillow placement. I have to keep the pillow toward the back of my head when on my side in order not to become distracted by machine noise.

I wear earplugs although they can actually make breathing sounds louder. The teen might benefit from some constant unvarying background noise (like a fan or noise machine) and NOT wearing earplugs, so that the white noise, uh, masks any mask noises.

And there are always other masks to try. Having the right mask for an individual can make all the difference.

Dreamsofclouds wrote: ↑

Mon Sep 04, 2023 11:13 am

alternatives to cpap

Alternatives are mostly for people who can't or won't make the gold-standard, PAP therapy, work.

When I was a teen, my parents went out of their way to stress the positives of the benefits that come from making good decisions that demonstrate taking responsibility for one's own well-being. They helped me see that it makes life more fun now and in the long run. They kept it all loving and practical and calm and positive in a way that dignified me rather than making me feel preached to or as if I were being treated condescendingly.

So I recognized they were trying to be helpful and I listened, but I tried my very best to hide that fact from them at the time, just for the principle of the thing.

I had the surgery when I was a teen. It was absolutely awful. Going to school with my mouth wired shut. Not being able to eat anything but liquids for 8 weeks. The whole thing was miserable and today I still feel the pain in my jaw when the weather changes oh and I am on pap so it didn't really fix that issue either. I wouldn't wish it on my worst enemy. My parents have long since passed and I still have a lot of anger and resentment for them forcing it on me. Please think long and hard before that surgery. I'm going to be graphic here so anyone with a weak stomach bale now but I really want you to understand the full ramifications of having a teens mouth wired shut. I woke up sick from the anesthesia with a breathing tube down my nose and had to swallow my own vomit because my mouth was wired shut. Please don't do this to a child!

babydinosnoreless wrote: ↑

Tue Sep 05, 2023 12:43 pm

don't do this to a child

I consider myself to be a moderately tough dude, but that somehow made my eyes a little wet.

Must just be the pollen.

Read this thread to the kid.
Let him know that he has choices;
And the wrong ones have consequences.

Dreamsofclouds wrote: ↑

Mon Sep 04, 2023 11:13 am

Hello,
New to this board. I have a teen who needs to be wearing a cpap for Obstructive Sleep Apnea and has been refusing. Its been two years

Would it be too much to take him to a nursing home to let him see what happens when sleep apnea goes untreated?

Just a thought.

Oh boy this is tough! Please DON'T threaten, show him a nursing home, or anything like that. Educating him about the long term effects is not likely to have much impact at this point in his life. Teens live very much in the moment and their brains aren't mature enough to consider long-term effects which I would suspect you and/or his doctor have already discussed with him. These tactics are likely to cause him to dig his heels in deeper and resent the hell out of you.

Developmentally, teens are starting to feel their own independence, and part of that process of becoming independent humans is to oppose things that invade their autonomy. I cannot imagine trying to convince a recalcitrant teen to do something like CPAP when there's no buy in. My daughter was discovered to have a metabolic condition highly dependent on diet when she was 14, and I knew the only thing I could NOT do was impose it on her, even though it was incredibly difficult to watch her suffer the consequences of not choosing to make the dietary choices that would help her condition. You've been fighting this battle for two years, it may have to be one that you can't win, as awful as that is. Possibly if you back off and give him the power to make his own decisions, he will choose to give it a try at some point, especially if some major incentive comes up. In my day, the threat of not being able to drive would be a big one, but I think kids these days don't want to drive (although you could feel out if he would want to). He certainly should NOT drive until this is treated.

OT's are great and MIGHT help, but not too many OT's will be familiar with CPAP (Disclaimer: I'm a retired OT). Since he's still a teen, you might have to look for an OT through a children's hospital, even if it involves travel--they will have the most experience with teens and working with the resistance some teens have. Sometimes a really personable and dynamic OT can work miracles. There are very few private pediatric OT practices because of insurance reimbursement issues, but you might see if you can get recommendations from the OT who works with your son's school, or even call your state's Occupational Therapy Association for a referral.

Things an OT could address would be comfort of the mask, positioning of the mask and hose (if the hose is running across the pillow or mattress that could amplify conductive sound), address any underlying sensory processing issues that might be part of the resistance to the mask, sleep hygiene and relaxation to decrease the anxiety that comes with using CPAP (if he has anxiety already--very likely--the claustrophobia caused by the mask can be formidable). I think it would be very hard to find an OT with the knowledge about CPAP in particular, but if you find a willing OT who would like a brief course on CPAP issues, I'd be happy to be a resource.

I was one who had a very difficult time adjusting to CPAP because of all of the above, even though I was in my 40's at the time. ! It took all my OT skills and a good amount of time to be able to sleep through the night with CPAP. If your son is willing to work with you even just a little, taking baby steps one at a time, with valuable incentives MIGHT work. After 2 years, though, the reality is that boat may have sailed.

BTW, I use something called "sleep phones" (cheap, Amazon knockoffs!) to listen to podcasts and videos to mask the CPAP noise. This is a headband with built-in flat speakers to stream sound to cover up the mask sounds. Earbuds may increase the conductive sound of the CPAP through the facial bones and don't work as well for me--plus they are not as comfortable. Ear plugs also increase the conductive sound in the head, and were never helpful for me. If he doesn't share a room, he can just listen to the sounds of his choice without any headphones or earbuds which might cover the sound of the mask and allow him to relax.

If he's not on board at all, I just don't know of any professional with a magic wand. My heart goes out to you. We want to protect and help our children, but sometimes it is out of our hands.

I disagree with the post above. You are the parent. You make the tough decisions. Threaten him all you want as long as you follow through. Teens are supposed to resent you. Its is how you make healthy adults, your not their friend. Take away his phone, his video games, his friend or girlfriend plans ground him. He will get over that kind of stuff. Its the big things they will resent you for, like permanently altering them with surgery. Grounding them or taking away privileges is something that is part of most normal teens everyday lives and sure they will complain to their friends about their mean parents but they will move on.

In addition to all the suggestions about "compliance" (which are good), I suggest you investigate the specific "noise" complaint.

Most modern CPAP machines let up a little bit when the patients exhales. Despite being a senior citizen (I wasn't when I started CPAP), I find this annoying and "noisy." It's generally called "exhalation relief," but may be called by a different trade name from one brand to another. It can always be disabled (or set to zero). Perhaps this is the problem.

Also, check for leaks, check the surface on which the machine rests (some may be better than others noisewise), and check for any idiosyncratic noises. Placing the machine lower than the mattress might also help, since the mattress might block out some of the noise.

Dreamsofclouds wrote: ↑

Mon Sep 04, 2023 11:13 am

Hello,
New to this board. I have a teen who needs to be wearing a cpap for Obstructive Sleep Apnea and has been refusing. Its been two years living with the effects of no sleep-causing phycological problems now. Is there a specific type of therapist that can help them accept the diagnosis, educate them about the benefits of use and long term effects of not using it, get used to the machine and trouble shoot? They are at that age where anything mom says results in eye rolls so Id love to outsource. My teen says they can hear the noise of the breathing inside their head. No type of earbud or earplug has helped. We have a sleep specialist doc but we need more. A phycological therapist recommended an OT to help trouble shoot but they all seem to be OT's for hands or lymphedema. I'm not sure who we need...help!
Also, I've been loving into alternatives to cpap but all the things that keep the tongue forward in the mouth are for over 18-under 18 it all seems to be surgery recommendations. They are not done growing so sawing their jaw in half to make more room in the mouth seems dramatic to me. I am at a loss.

Not sure if you ever posted but which mask is it?

If it is one of the resmed masks with an "i" such as the N30i or others where the tubes go up alongside the head, those are noisy as hell. This is easily fixed by getting a different mask.

You might empower the kiddo and get compliance if you let them decide on their own different mask, if that is the case. I personally love my light footprint from the n30 and the p10 is also a very light footprint as well.

HTH

Let the kid try Bleep.
Avoiding those face stripes might help.
Strap marks are SO uncool!