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[Treatment] Help for son!! - Printable Version

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Help for son!! - realin4 - 11-14-2013

Hello, I have been reading this forum for months now and have gained a lot of valuable information from all of your posts so thank you for that!! I seem to be at a roadblock at this point now and I am not sure how to proceed so I am hoping to get some advice.
Some background: I have a 16 year old son who was diagnosed with OSA about three months ago after YEARS of morning headaches and feeling exhausted every day with a high level of anxiety. He had been to every specialist out there but no one identified the problem until I took him to a new pediatrician and sleep apnea was the first thing he thought of. Go figure. Even his ENT, who has been treating him most of his life, didn't suggest that. We took him to a sleep specialist and he went for a sleep study. His AHI at the study was 16 but during his times of REM sleep his AHI was 26...the doctor says this is not significant but I wonder if that's true. His order was for a split study with CPAP titration the second half but he had so much trouble falling asleep that all of his events occurred too late for them to do the titration. We have been told that his airway is a "class 3-4" and that, along with his large tongue, are his main problem. He doesn't really snore though and when he does it is very softly. The doctor suggested either CPAP or surgery to widen his airway and "debulk" his tongue but he is still growing so we don't want to do that. He is tall, 6'1" and about 185 pounds. Also, he has severely swollen turbinates in his nose and a slightly deviated septum and two ENT's recommended surgery. So confused on the surgery options for sleep apnea...does anyone have experience with these surgeries and resolution of sleep apnea? How does one even know what really causes the hypopneas/apneas?

So, when we went to the MD for the results he decided to just order him the Auto CPAP machine with settings 4-14. The first two weeks he wore the nasal pillow and it seemed to fit okay and work for him, although occasionally he would remove the pillow during the night. He did have issues with the humidifier (making his face wet) and we decreased it until he just turned it off. He had minimal leaks from what I could tell from the software and on the days when he wore the mask all night he woke up like a totally different kid. He was actually having conversations with people( usually he described himself as not having the energy to have conversations), laughing, able to concentrate on school work, etc. It was amazing. Even his older brother, who kind of thought sleep apnea was a non-factor, was amazed at how different he was. Then, all of a sudden the pillow was coming off every night during his sleep. He has sinus issues and we are trying to address these issues at the same time. We thought maybe he was opening his mouth in his sleep due to his nose being stuffed up and the air coming through his mouth was waking him up. So, we switched to the full face mask but has been coming off most nights too. He does put it back on if he wakes up and realizes it is off but in general he hasn't been wearing it long enough to help at night. He has a lot of trouble falling asleep with either of them on. We just tried a mild sleeping pill that the MD ordered to help him relax and fall asleep (while getting used to the mask) and he's taken that the last two nights. One night he took it off about 2am and last night he took it off about 12 am, after going to sleep at 10:30, but I set my alarm to check on him (at 2am) and made him put it back on and it stayed on until 6:30 when I woke him up. He seemed to feel really good this morning, stating he felt better than he had "in weeks".
So here are my specific questions: His mean pressure seems to be around 6-6.8 (hard to tell with so much data with leaks in there) and his 95% is around 10-11. Is it likely that the change in pressure is causing him to wake up enough to disturb his sleep and he is removing his mask during that time? We asked the MD about adjusting the minimum pressure but he didn't feel it was necessary. Also, I am thinking that maybe the mask is leaking more because he likes to sleep on his side and the full face mask makes leaks more likely when side sleeping? Could these leaks be the problem with his removing the mask? Any advice from people who sleep on their sides or does he simply need to learn to sleep on his back? He is motivated to make this work but he is still a teen and he does have a little OCD like tendencies towards certain things so that doesn't help.

I am considering changing his settings myself to 6-14 and see if that helps but I wanted to get opinions on whether that could even potentially be a problem. (I've tried to attach his results from last night...it's the lowest AHI ever for him)
Sorry this is such a long post. We just really want to help him feel like himself again and feel so bad its taken so long to realize what was going on with him. Any advice will be SO appreciated!!!
Thanks in advance!!!

RE: Help for son!! - PaulaO2 - 11-14-2013

Taking off the mask at night is a common thing. Add in the "dead to the world" way teen age boys sleep, and he's not going to wake up enough to realize it is off.

Some things other folks try and that is to clip the hose to the pillow so that when they take off the mask, it doesn't go very far and the noise wakes them up so they put it back on. And for your son, maybe setting an alarm for him like you did yourself would work. He checks his mask and goes back to sleep. The more he can do for himself, the better he will be.

What you could also do is let him decide which mask to wear each night. If he is feeling stuffy, he can wear the full face mask. If he feels clear enough, then the pillows. Again, self empowerment. Gives him more control over his own life. (You may already be doing this, but thought I would mention it)

And there's nasal rinses. Neill and Ayr makes them. and a few others. There's the "neti pot" and the simple squirt bottle. I use the bottle. The rinse is a saline solution in powder form you mix with warm water then squirt into the nose (i've never used nor looked up how the pot works). It rinses out the nose and some of the sinuses. During allergy season, I use this before I go to bed and first thing in the morning. It really helps. At first, I was truly grossed out but after a while, I just did it and don't think about it any more.

Someone else will have to help with the surgery questions. I know there are several here who have had nasal surgery or have nasal issues.

RE: Help for son!! - me50 - 11-14-2013

I agree with PaulaO2. Also, he could try a chin strap when using nasal pillows.

As far as the pressure settings, I agree with you tightening them up. Maybe 6 or 7 to 13 and see how he does.

Keep us posted please. It sounds like your son is willing to make this work.

RE: Help for son!! - realin4 - 11-14-2013

Thank you both for your replies!

We do always let him decide which mask to wear, whether to set his humidity or not, etc. We want him to make this work for himself. Setting my alarm to check on him is simply out of desperation to help get him better. His fatigue has affected every aspect of his life to the point that he has not had any social life in the past several years due to extreme anxiety which they now feel is more fatigue related. No hobbies, lack of interest in most things, etc He literally has zero energy for anything. So, after watching him be so bad, for so long, I am just trying what I can at this point. We had thought about him setting his alarm clock (actually his idea) but we worried that if he was sound asleep then setting the clock wouldn't be good for him either. What if the mask was on and he had trouble falling back to sleep? He is in some really tough classes this year and is having so much trouble focusing and concentrating and staying awake that I hate to mess with him at all when he's sleeping. I just thought if I looked and it was on he could continue sleeping. Maybe that's not the best though.

As far as the mask goes, when I do find him in the morning with the mask off it is right there beside his head most of the time. So, the noise hasn't woken him up.
Is it your experience that most people go through this phase of removing the mask for awhile? I just wondered why he didn't remove it much the first couple of weeks. I would love to know if others have had trouble with the constantly changing pressure of the auto machines, especially if set too low.

RE: Help for son!! - trish6hundred - 11-14-2013

Hi realin4,
WELCOME! to the forum.!
What Paula said.
It's great to hear that your son wants to make this work and that he has a good mom like you to encourage him.
I know this is difficult and CPAP therapy can take some getting use to but I encourage you and your son to stick with it.
Hang in there for more suggestions and keep us posted on how things work out.
Best of luck to you and your son with his CPAP therapy.

RE: Help for son!! - zonk - 11-14-2013

(11-14-2013, 01:25 PM)realin4 Wrote: He did have issues with the humidifier (making his face wet) and we decreased it until he just turned it off.
What machine do you have, user profile shows "REMstar Auto A-Flex M series" and software " SleepyHead", the two are not compatible with each other. Water in the hose called rainout, try a hose cover and placing the machine slightly lower than the bed
Machines with heated hoses including ResMed S9 and Phillips Respironcis System One (60 series) protects against rainout probems

Everyone is different, I cannot use CPAP without the humidifier, the humidifier makes breathing more comfortable especially under pressure, breathing warm air prevent nasal passages drying out

Tips for new CPAP users, avoiding 10 common problems

RE: Help for son!! - me50 - 11-14-2013

some have tried mask liners for leaks as an fyi.

RE: Help for son!! - robysue - 11-14-2013

How old are his masks? It's possible that the nasal pillows are worn and need to be replaced.

RE: Help for son!! - PaulaO2 - 11-14-2013

Yeah, I figured you had already tried all those, just thought I'd start there.

Yes, many people eventually stop taking it off.

A chin strap with the nasal pillows is a good idea. Put on the mask then the chin strap. It is one more thing to take off in his sleep so it may stop him or wake him up enough to stop himself.

RE: Help for son!! - Tez62 - 11-14-2013

realin4, welcome, can I say how good it is to see a dad being so concerned and helpful for his son, well done, the removal of the mask is difficult I think we all do it at some stage, I'm 51 and have been on CPAP 2.5 years and still do it. We are not used to having something on our face and I find especially in warmer weather or when I get hot I take it off and think I'll put it on in a couple of minutes and hours later I wake up with it off.
It's good you are setting an alarm but you also need your quality sleep.
A couple of tips for newbies, I always have the hose coming from above my head this reduces leaks and the gravity pulls the mask up and saves getting tangled. Also I use a full face mask and use and make my own mask liners, I hate the feel of silicone rubbing against my face. If you want I can give you the instructions.
On the pressures, using a Auto CPAP you really want a difference of around 10 between low and high pressure otherwise you are getting closer to a fix pressure. I would leave it at 4-14 until you can discuss it with your sleep specialist.
This is going to be hard for your son but he seems to have a good attitude towards it and you and he can see the results when he is able to use it consistently.
Would he get on a website like this or any of the others out there to talk about what he feels, sometimes it helps to talk to others with the illness, I know you are trying you best but unless you have to wear a mask all night every night for the rest of your life you don't really know what it's like.
The other things we can pass on it the huge benefits we have got out of it, good luck.