Help for my son

[rejnme4]

I'm so glad I found this place! I've been a CPAP user for about 8 years with no problems but have still learned a lot reading through the posts here.

I am actually looking for some advice about my son. He is 23 and has Down Syndrome. He's had a lot of health and mental health issues over the years and currently takes medication that has caused him to gain weight. I suspected he might have sleep apnea so his Dr. ordered a sleep study.

He (surprisingly!) cooperated very well with the sleep study and was diagnosed with moderate osa but when we went back for the trial with the CPAP he tolerated the mask but would not go to sleep at all. At 3:30 am we finally gave up.

We tried again last night and this time he wouldn't even lie down though again he accepted the mask and didnt complain about it. I don't think we will try again; it's just a waste of time if he's not going to cooperate. But I am at a loss as to what to do for him now. He really needs some kind of treatment for this because he currently sleeps up to 14-15 hours a day and when he's awake he is very irritable.

The sleep lab techs suggested I ask the doctor about an "auto PAP" but I am not familiar with that. I could really use some advice on where to go from here. Thank you!

[JDS74]

I wish that I new enough Downs' folks to have a constructive suggestion. In particular, ones who successfully use CPAP therapy. It is unfortunately too common for apnea sufferors of all kinds to be unable or unwilling to use this important therapy.

On the issue of possible APAP, that is a means of doing a titration at home. It may be that the suurroundings are so foreign that your son is having difficulty coping.

An APAP or auto-pap is a type of CPAP machine that can vary the air pressure to accomodate the patient's breathing need.
So, in your case, it might be that he can and will tolerate this type of machine in his familiar and safe home environment.
The machine might have the pressures set to a fairly wide range and after a while of use, will report what levels of pressure were effective. Some HMO's do their titration this way and then select the appropriate therapy based on 30 days or so of data.

[bwexler]

An Auto PAP like PR System One REMStar 560 Series or Resmed S9 Autoset will allow a wide range of settings and the machine watches the patient and adjusts automatically for differences in breathing on a breath by breath evaluation. By using software like Sleepyhead you can evaluate the therapy in great detail on a computer and narrow the machines parameters to fine tune treatment.
This is the same process done in the lab during the titration study. They attempt to determine in one night, in a strange bed, with wires all over your body, what settings will allow you to sleep best when you are home in your own bed. Very few on this forum believe that one night of data can provide optimal settings. That is why one of our members created Sleepyhead software, so he could monitor the effectiveness of his own therapy.
If you can get one of the machines mentioned above and a mask that your son can tolerate and does not leak, you and your son can master this at home.

[johnthomasmacdonald]

would he wear a dental appliance? I've had one made for me and it seems that it's 50/50 whether it will work well enough to get your ahi below 5. But it works best with mild to moderate apnea. For me it doesn't work at all on its own but in combination with an asv machine i can get my ahi down to around 0 while the machine on its own is usually around 5

[SleepingUgly]

when we went back for the trial with the CPAP he tolerated the mask but would not go to sleep at all. At 3:30 am we finally gave up.

So he wore the mask and tolerated whatever pressure they had him at, he just couldn't fall asleep?

We tried again last night and this time he wouldn't even lie down though again he accepted the mask and didnt complain about it.

Was this in the lab? Was the machine on during the time he had the mask on?

I don't think we will try again; it's just a waste of time if he's not going to cooperate. But I am at a loss as to what to do for him now. He really needs some kind of treatment for this because he currently sleeps up to 14-15 hours a day and when he's awake he is very irritable.

The sleep lab techs suggested I ask the doctor about an "auto PAP" but I am not familiar with that. I could really use some advice on where to go from here. Thank you!

If I understand correctly, he tolerated the mask and low pressures (I'm presuming because he didn't fall asleep, they never got beyond low pressures) just fine. The problems were falling asleep and then cooperation. I am not sure how an AutoPap will address those aspects, or at least at this point it's premature to say an APAP would likely help.

It sounds like you're asking for a different kind of treatment other than PAP therapy. If so, there's weight loss, surgery (which wouldn't be high on my list), dental devices, and a few others with less likelihood than CPAP of working, such as Winx and Provent.

If you don't want to quit PAP yet, you could ask the doctor whether there's a sleep aid he could take that would help him fall asleep for the titration. Assuming you could get him to sleep through the titration, then you might be able to use behavioral approaches to get him to cooperate with using it at home (which might be easier if he actually sleeps with it at the titration). How high or low functioning is he? Could you use positive reinforcement to get him using the machine?

[johnthomasmacdonald]

other thought i had was tranquilizers like xanax in the early stages with the hope that your son will feel so much better from the machine that he'll want to keep using them (that's where i am, i utterly loathed the machines for the first 6 months, now i love it)

[rejnme4]

Thank you everyone for the input.

I do think that if there's a way to do the titration at home he would be more cooperative so if the APAP will work for doing that I would try it. I know it was stressful for him in the lab and was actually surprised that he did as well as he did. For the initial sleep study he did very well, it was the two times that we tried the CPAP that he would not go to sleep. I could tell that he was fighting sleep--he kept having to get up to go to the bathroom and complaining about things, etc. just trying to keep himself awake.

I really want to find a way for PAP therapy to work for him. Since I've used my CPAP for several years, he is at least familiar with it and he even likes to help with changing the filters and tubing for me. I'm not really considering any other options at this time. I did look into the dental appliances a little but from what I saw they are out of our price range.

His ability level is in the moderate range of mental impairment but he also has OCD, anxiety and sensory issues that bring his functioning level down somewhat. We already have a good behavior plan in place at home and I'm confident I can eventually get him to use the CPAP. He was diagnosed with type 1 diabetes at age 10 and I figure if he can get used to 5 shots and multiple fingersticks every day then he can get used to almost anything.

[sleeplessmommy]

My son is 4, but I can relate because it was similarly difficult to get him to comply due to his age. What worked for us initially was to get it on him after he fell asleep for the sleep study. We were able to get some data. Now, we are 2 months into it and we have made it part of his nightly routine. He doesn't wear it all night yet because he rips it off, confused in his sleep. For his titration study, they were able to sneak it on him after he fell asleep and gradually increased his pressure setting.

[rejnme4]

I asked my son's Dr about the APAP, she wanted to run it by a pulmonologist and of course the pulmonologist wants to see him first. So now we have to wait 2 more weeks. Do people usually see a pulmonologist for sleep apnea? When I was dx'd they sent me to an ENT.

[SleepingUgly]

Do people usually see a pulmonologist for sleep apnea? When I was dx'd they sent me to an ENT.

Yes. Most doctors boarded in sleep are either pulmonologists or neurologists. There are occasional ENTs and psychiatrists boarded in sleep, but I think they are a minority.

I personally would not want to titrate someone on APAP without a titration in the lab. There are things that can be seen in the lab that can't be easily seen on PAP, plus there are so many different possible ranges of pressures that it would be nice to at least have some idea what the ballpark pressure should be. If the pressure range is too low, he may feel he can't breathe. If it's too high, it may bother him for other reasons. I'm concerned that he'll just refuse to cooperate through all the trials. I think your best bet is to try to get a titration in the lab and then the pressure can be tweaked at home if it's not exactly right. If it were me, I'd ask the doctor about a sleep aid for the titration so he'll sleep. Knowing he has already been uncooperative, you might want to attach an incentive to wearing the mask at the titration. I wouldn't even bother telling him about the sleep aid. If he keeps the mask on, even if it's because he was knocked out by the medication, you deliver the reward and lots of praise for wearing it all night. Then you start out at home on a good foot. (I know, easier said than done...)

Make sure to get a data-capable machine.

[chunkyfrog]

Is he interested in astronauts, firefighters, or pilots?
Many cpap masks are a lot like their work gear.

[Janknitz]

I'm going to respectfully disagree with Sleeping Ugly.

If he's not going to sleep in the lab, titration at home on auto makes sense. Once he's used to sleeping masked up you can always try going back to the lab to check things out more thoroughly once he's used to the mask and able to sleep with it. But if he can't get a decent in lab titration, he's losing valuable treatment time an autopap can help provide.

You might as for an OT evaluation go help you with the sensory issues with the mask

Also consider the fit may be challenging because of facial structure.

[rejnme4]

I really, really would like to avoid taking him back to the lab. I'm not crazy about giving him any meds to make him sleep. He already takes meds for his ocd and anxiety and I worry about adding something new to the mix.

We haven't had a problem with him wearing the mask in the lab, just that he refuses to go to sleep, wouldn't even lay down the last time even though i could tell he was really sleepy. Each time it has gotten more difficult and that's a lot of trouble to go through and still end up with no results.

After December I won't have anyone to stay with my other kids when I take him to the lab. But we don't even see the pulmonologist till the 4th and it's usually 3-4 weeks to wait for an appointment in the sleep lab. I was hoping to get something done before then.

[SleepingUgly]

I really, really would like to avoid taking him back to the lab. I'm not crazy about giving him any meds to make him sleep. He already takes meds for his ocd and anxiety and I worry about adding something new to the mix.

OK, I hear you about the lab. I thought I'd read that there's a higher incidence of central apneas in Down's Syndrome, as well as maybe hypoventilation. I don't know what the implications of those are for titration. As a parent who had a kid on CPAP, and as an adult who tried to titrate myself at home, I would personally not feel comfortable titrating my kid at home if I was on my own to do it. Now if you said that a doctor you trust was comfortable with titrating it at home and was going to be frequently looking at his data and adjusting the pressures accordingly, that's another story. But I haven't found too many doctors who even have the software at their offices to download the data.

We haven't had a problem with him wearing the mask in the lab, just that he refuses to go to sleep, wouldn't even lay down the last time even though i could tell he was really sleepy. Each time it has gotten more difficult and that's a lot of trouble to go through and still end up with no results.

True.

After December I won't have anyone to stay with my other kids when I take him to the lab.

That stinks.

But we don't even see the pulmonologist till the 4th and it's usually 3-4 weeks to wait for an appointment in the sleep lab. I was hoping to get something done before then.

I hope you can get in sooner, too. Maybe the squeaky wheel approach?