I have a 3 year-old daughter with Down Syndrome and she has had sleep problems her entire life.  We've been told countless times that she'll either 'grow out of it' or that there's nothing to be done.  As you can imagine, we've changed doctors several times!  She's now had her adenoids removed (about 1 year ago) but not her tonsils -- the surgeon said that they weren't unusual or large.  The ad surgery helped a lot -- no more prolonged and desperate moaning episodes -- but she still has frequent bouts of restlessness, usually starting after she's been asleep for an hour or two; does this indicate it's during her REM sleep?  I've spent more hours than I can possibly count just hovering over her and/or holding her upright, listening to her breathing and trying to figure-out what to do.  When she's having trouble it seems to be with her inhalation -- her chest moves but no air goes in, i.e., obstructive rather than central nervous apnea.  She's finally had one sleep study and they reported mild apnea, but I was there with her during it and she had a relatively good night; I'm sure one of her bad nights would have been rated much worse!

At this point, the only strategy we have is to aggressively treat any sinus congestion, e.g. with prescription decongestant.  Of course, the first time we used it we nearly killed her -- the suggested dosage was twice what we now use, and she was nearly comatose that first night!  We literally carried her around the house trying to stimulate her to keep her breathing, the phone in hand ready to dial 911 if it got any worse.  Anyway...  I suspect that her DS prevents her from breathing through her mouth -- an overgrown tongue and weak muscle control are typical symptoms of DS.

So, does anyone have any more suggestions?

We're continuing to push for another sleep study, and we eventually want to get her another ENT doctor since her current one doesn't seem to like us (and has resorted to just telling us to 'put up with it', grrr).  I'd love to have a CPAP available even though the people at the sleep lab told us that it's nearly impossible to get small children to wear them.  I'm thinking that it could still help a lot during those middle-of-the-night episodes, when she's too far gone to complain about the mask.

P.S.  She also has a small VSD in her heart but I don't think that plays into her OSA.

P.P.S.  Wow, I just saw my post and it says I've been a member for nearly a year?!  I can't believe I waited this long to post!  Probably I wanted to wait until after our first sleep study.

I am not an expert on apnea, nor am I an expert on children with Down Syndrome.
It certainly looks like your daughter's situation is a complicated one.
It would be helpful to know more about the results of your daughter's sleep study, since those studies can contain a lot of information. If you have not yet gotten a copy of your daughter's sleep study (preferably the full study with the graphs), I would encourage you to do so. If you then have questions about the sleep study results, you could post them.

Best wishes to you and your daughter,
Bill