More newbie mom questions

[sleeplessmommy]

Hi all,

Just wanted to know if there is anything I can do about the level of noise emanating from my 4 year old's nasal mask? I have to sleep in with him because of his OSA, night wakings, night terrors or else I am up all night and can't function. I hear every breath all night long not to mention the vent is blowing cold air on me all night. Not worried so much about myself, but it does seem to wake him from time to time. He uses a System One RemStar Pro with C-Flex+ (460P) and alternates between the Pixi and the Wisp depending on his mood. I should also mention that my husband's ResMed S8 w/ Swift FX doesn't make a sound.

Stats below (sorry, I don't have a minute to figure out how to post a picture--witching hour at my house with two cranky kids) On a related note, how long before I should know if CPAP is making a difference with his behavior/ hyperactivity? I haven't noticed any changes after a month. He fluctuates with how much he wears it, but I guess I'm just trying to figure out when or if I should stop making OSA an excuse for his behavior. I also notice his stamina is less than his peers particularly when he plays soccer. He is the only one dragging after a short time and he gets plenty of exercise. Wonder if that is OSA related and if he will improve on CPAP?

CPAP Statistics as of Friday, October 18, 2013
27 days of CPAP Data, between 9/14/2013 and 10/18/2013
Details Most Recent Last 7 Days Last 30 Days Last 6 months Last Year
AHI 1.07 3.22 3.48 3.57 3.57
Hours per Night 02:48 04:23 04:19 04:09 04:09
Pressure 5.00 5.00 5.00 5.00 5.00
Average Total Leaks 18.99 16.83 17.31 17.16 17.16
95% Total Leaks 30.00 25.00 29.00 29.00 29.00

Changes to Prescription Settings
First Last Days AHI FL Machine Mode Pr. Rel. Pressure
9/14/2013 10/18/2013 27 3.57 0.00 PRS1 CPAP C-Flex+ x3 5.00
The above has a threshold which excludes day counts less than 5 from the best/worst highlighting

[Julie]

With a 4 yr old I'd be asking those questions yesterday of his pediatrician, not people on the internet. We only have so much experience with children on Cpap, let alone children who might have other medical issues not related to OSA at all.

[Pugsy]

Do ask your/his doctor about your concerns but the one thing that stood out to me is fairly simple.
Hours of use
Average of 4 hours a night is sub optimal. I am sure that he is sleeping other hours without the machine. Even for an adult that's too few of hours of use to expect to actually see much, if any, improvement in how they feel.
When adults do this they typically spend the first 4 hours of the night using the machine and then they take the mask off or wake up and get up..then they go back to bed/sleep and don't put the mack back on...get another 2 to 4 hours of sleep without the machine and wonder why they feel like crap the next day. Well the body tends to forget the "good" 4 hours and only remembers the "bad" 2 to 4 hours without the machine and sometimes they actually feel worse because the body feels better while on the machine so the time being off the machine is an extra whammy of feeling bad.

The machine noise..and mask venting noise. Do you have the machine as far away from you as you can get it? Have you placed the machine on something to maybe help deaden the machine noise? A folded up towel or old mouse pad...helps absorb the noise a bit.
His mask noise...that's a tough one. Try to get as far away as you can..maybe add a bit of white noise.
The cold air venting...again get further away or place a small pillow or something between you and the air flow.
Is the bed too small to get very far away?

[icipher]

Ask your doctor. And God bless you and your son. I imagine it would be very difficult to deal with this for both you and him. May I ask what is causing his osa so young?

[bwexler]

You need to find fun ways to get him to wear the mask and sleep more than 4 hours a night. Stories about how the mask will help him to sleep better just like his favorite super heroes cape or other "tool".
How it will help him to play better at soccer.

[sleeplessmommy]

With a 4 yr old I'd be asking those questions yesterday of his pediatrician, not people on the internet. We only have so much experience with children on Cpap, let alone children who might have other medical issues not related to OSA at all.

Yes, I will be asking his pediatric sleep specialist--not to worry. We have a follow up in December. I was just seeing if someone had any anecdotes to share because, as you said, there isn't a lot of information out there with kids on cpap but there is a whole lot out there about osa and ADHD symptoms going hand in hand with kids.

[sleeplessmommy]

Ask your doctor. And God bless you and your son. I imagine it would be very difficult to deal with this for both you and him. May I ask what is causing his osa so young?

He inherited my husband's deep bite, recessed jaw, and high arched palate. Consequently, his airway is very narrow. His tonsils and adenoids were removed, but his osa didn't resolve post surgery. He is a skinny little beanpole so most people I meet have a hard time believing me since so many people mistakenly believe you have to be overweight to have osa.

[sleeplessmommy]

Do ask your/his doctor about your concerns but the one thing that stood out to me is fairly simple.
Hours of use
Average of 4 hours a night is sub optimal. I am sure that he is sleeping other hours without the machine. Even for an adult that's too few of hours of use to expect to actually see much, if any, improvement in how they feel.
When adults do this they typically spend the first 4 hours of the night using the machine and then they take the mask off or wake up and get up..then they go back to bed/sleep and don't put the mack back on...get another 2 to 4 hours of sleep without the machine and wonder why they feel like crap the next day. Well the body tends to forget the "good" 4 hours and only remembers the "bad" 2 to 4 hours without the machine and sometimes they actually feel worse because the body feels better while on the machine so the time being off the machine is an extra whammy of feeling bad.

The machine noise..and mask venting noise. Do you have the machine as far away from you as you can get it? Have you placed the machine on something to maybe help deaden the machine noise? A folded up towel or old mouse pad...helps absorb the noise a bit.
His mask noise...that's a tough one. Try to get as far away as you can..maybe add a bit of white noise.
The cold air venting...again get further away or place a small pillow or something between you and the air flow.
Is the bed too small to get very far away?

Thanks for this very helpful information. Yes, it is hard to get away from him. He has a twin. But, I will try the mousepad. Great idea. The mask is the biggest noise source. I was surprised it was so much louder than my husband's. Is this because it is a different type (pixi vs swift fx) ? It sounds like the ebb and flow of the ocean next to my head at times.

The 4 hours is definitely suboptimal and it helps to know that he may even feel worse on those nights. He definitely rips the mask off in his sleep subconsciously. He is great about putting it on at night religiously but in the middle of the night, he becomes agitated when I try to get it back on him. We had a bunch of days with an upper respiratory infection and he couldn't wear it. He is finally getting 7-9 hours lately with the mask on for the past week but I always have to replace it on him--he never sleeps through. To be fair, he has only slept through the night before cpap maybe once or twice anyway in his life.

[steveinmaine]

I like the suggestion about telling him the mask is like a super hero's, or an Air Force pilot or astronaut. You could tell him, "Have a good flight," as he lies down to sleep.

All the best to you and your little one.

[Pugsy]

The mask is the biggest noise source. I was surprised it was so much louder than my husband's. Is this because it is a different type (pixi vs swift fx) ? It sounds like the ebb and flow of the ocean next to my head at times.

Very likely the mask noise is different because the two different masks. I know that there are some masks I have tried and used that are louder to me than others with all other conditions being the same. With my PR S1 machine a little more noise on inhale and with my S9 machine a little more noise on exhale. So yes, a sort of ebb and flow like the ocean. Part of it might also be some conducted noise through the hose/mattress. You can test that theory a little by laying next to him and putting your fingers in your ears...does the noise totally go away? If it doesn't that part that doesn't is mostly conducted noise. Conducted noise can be reduced somewhat by keeping the hose off the mattress as much as possible. Using some sort of hose management system to get the hose up off the bed could be especially challenging with a little one but you might think about it if you find that there is some conducted noise going on.
I don't remember if you are using a hose cozy on the long hose or not...if not, you might try adding one because it will help muffle the air/mask noise regardless of the cause. If you don't have one and money is tight send me a private message...I have a really nice PadaCheek hose cozy I can give you. Lots of padding with it.

And yes, 4 hours of sleep using the machine ...he isn't going to feel so great. It takes the 7 to 9 hours to reap the best rewards.
For me if I only get around 6 hours of sleep my butt is dragging big time all the next day and that's with normally getting 7 to 8 hours the other nights. The nights he struggles a lot with things and doesn't manage to keep the mask on for the bulk of the night...yeah his little butt will be dragging too.

Do whatever you can to limit the mask noise and vent (yes, that varies between masks too) from disrupting your sleep in any manner that you have to do. You need your sleep too. Twin 4 year olds...your butt would be dragging even without these disruptions. My hat is off to you.

[cpapist]

"deep bite, recessed jaw, and high arched palate"

Eventually find a top notch orthodontist who has experience using various devices including palate expanders to help kids. The right doc may be able to do enough for him that his airway opens up and he no longer needs cpap.

Best of luck.

[Loreena]

"deep bite, recessed jaw, and high arched palate"

Eventually find a top notch orthodontist who has experience using various devices including palate expanders to help kids. The right doc may be able to do enough for him that his airway opens up and he no longer needs cpap.

Best of luck.

I 2nd this recommendation. It's important that you find a functional orthodonist and one that does not believe in extractions, but will instead work on expanding the jaw. Here's a site that can help you find one: http://iaortho.org/.

Also take a look at Dr. Hang's site: http://www.facefocused.com/.

[sleeplessmommy]

Yes, we are awaiting insurance approval and we are working with an orthodontist who specializes in this. He is planning on putting in a palatal expander. I have read that rapid maxillary expansion has good treatment efficacy in kids.

[SleepingUgly]

On a related note, how long before I should know if CPAP is making a difference with his behavior/ hyperactivity?

I would say minimally 3 months of using it consistently, all night, every night.

I haven't noticed any changes after a month. He fluctuates with how much he wears it, but I guess I'm just trying to figure out when or if I should stop making OSA an excuse for his behavior.

Has he been evaluated for ADHD, or you just think he is hyperactive and has behavioral issues? If he's been diagnosed with ADHD, when you ask when you should stop making OSA an excuse for his behavior, I assume you mean when should you start treating the ADHD, correct? I'd start treating it behaviorally now because there's no downside to that. You can see how far you can get with behavioral techniques, which are helpful to any kid, with or without ADHD. If the CPAP ends up helping, that's great.

I also notice his stamina is less than his peers particularly when he plays soccer. He is the only one dragging after a short time and he gets plenty of exercise. Wonder if that is OSA related and if he will improve on CPAP?

Can you sleep somewhere in his room other than his bed? Even an air mattress would be better than sharing a twin bed. Add a white noise machine to the mix so that you can block some of the noise out. Don't chit chat with him at night, and try to make your presence as unreinforcing as possible, or even when he doesn't need you in there, he'll need you in there. Put the mask back on him every time he takes it off, without much conversation. Reinforce him verbally and with a small reward every morning that he wore it "all night", even if you had to put it back on him a bunch of times. In addition, make a chart with stickers for how many days he has to sleep with it all night in order to get a larger prize.

[sleeplessmommy]

We work with a counselor on the behavioral piece and he has received a diagnosis of ADHD but the neurologist and sleep doc say the symptoms could be osa related. I have a trundle mattress on the floor I was going to try to use in order to transition out of his room. It is hard to get it back on at night. He fights me in his sleep and keeps tearing at it or rolling over so I can't the headgear and mask on. He doesn't give me a hard time when he goes to bed with it initially. We do reward him for wearing it all night, but the hardest part is getting him to stop being combative in his sleep.