Friday, March 1, 2013

CPAP and Down Syndrome

Sometimes it feels so sweet to be right and today was one of those victories, life is good! We had Claire's first follow up with her sleep Doctor after being on the CPAP machine for about a months and a half.

I guess I should back up a bit; Claire has been struggeling with sleep issues for years now.  The highlights:
-3 1/2 years old, sleep issues begin, never seems to fall into a deep sleep, she is up every two hours, all over the house...
-4 years old, tonsils and adenoids removed (didn't help with sleep issues) 
-5 years old,  Pediatrician blames sleep issue on "people with down syndrome are suborn", "don't try so hard", "she is playing with you just like a toddle getting out of bed would"
-Tossing and turning all night, up on a regular scheduled 12, 2, 4, 5, 6,7 Ahhhhhhhhhh!

-6 years old, explain that Claire WANTS to be sleeping, she is frustrated and exhausted not naughty, finally convince Pediatrician that this isn't behavioral.
-Went in for a sleep study, yes she is having "episodes" AKA, sleep apnea, her air way is being blocked off by its own tissue, she stops breathing and that wakes her up.  Also her brain just stops telling her body to breath for a while which wakes her up (it's about 50/50).

-Talk to the sleep doctor who recommends DOING NOTHING, yes, you read it, he wants to do nothing because "she has down syndrome and probably will not cooperate because people with downs are stubborn, I wouldn't do it, it's not worth the hassle."
-Nate and I agree, we want to TRY the breathing therapy because it's the only option, CPAP (Continuous positive airway pressure) or nothing.  
-Feeling exhausted, desperate and frustrated that our doctors seems to be blaming down syndrome for something it is not, a sleep disorder, like just deal with it, it's part of the package: stubborn and sleep deprived.
-January, Claire does a second sleep study to determine the air pressure setting her machine will need to be on to keep her air way open.  It was a little tricky because they don't make masks for people with the head size of a two year old.  After struggling through the study with a mask that didn't really work we discovered Claire could uses an adult medium nose mask over her mouth and nose (she is a total mouth breather).  It's not totally perfect but it's helping and does't leak too often.

-January she starts the treatment and within a week we notice improvements in her mood and energy level.  

Which brings me to today; I couldn't wait to bring in the chip from Claire's CPAP machine and gloat, just a little.  Her sleep Doctor was kind of hard to read, looking down at his sheet of numbers.  I just knew they would tell him she has been wearing the mask most of the time and it was helping.  I expected him to just come out and say great job but he kept his cool.  "So, how do you think it's going?"  he asks.  I'm about to burst, I've been waiting to sleep through the night for six years and there is my golden ticket in your hands, how is it going?..  "I think it's amazing, I'm so glad we tried it.  Her mood and energy have improved, she is a different kid!"  He looks down again and replies "I'm impressed, she is doing well, very few nights did she not keep it one." I know, it was the two nights we were in Ephrata and the three nights she was very congested (you don't wear it if you're sick).  I explained that "if she was off her routine her sleep mask was not successful and if she took the mask off during the night we were not waking her to put it back on, that just makes her mad.  Also, she has been opening the machine and getting out the water dish for us to refill every night, putting on her mask and turning the CPAP on.  I want her to feel that she is in control even though she doesn't really have a choice."  He looked serprised and says "that's what I would do" which I think is funny because he keep saying not doing the CPAP is what he would do at our last visit.  

The amazing news is this, Claire's "episodes" have gone way down.  At her sleep study she stopped breathing 18 times an hour, crazy!  Over the last month and a half on CPAP she has been having, on average, 4 episodes! No wonder she is doing better.  Her doctor is hopeful that she will get that number down to 2 by the next visit.  Sense starting the CPAP she has made less than five trips out of her room total in the middle of the night.  She was averaging 3-6 trips to my room each night before.  Basically, she was waking up and getting out of bed before, now she is still waking up some but she goes back to sleep, praise God!  Claire will most likely need CPAP for the rest of her life because of her facial features I am overjoyed that she is going so well.  She is tolerating what most of us would find torturous even with down syndrome (there excuse, not mine) okay now I'm saying it, I told you so docs!  


  1. We had a very similar issue after finding out our son who also has DS had Sleep Hypopnea. The doctor told us our son has enough to deal with because he has DS and didnt want to tourture him with CPap. But I wanted to try of course. My problem is finding a mask that fits a five year old.. What mask are you using? Are you getting any air leaks? We have been doing the cpap since November of last year and i notice a little difference but he still sits up in his sleep but lays back down.. I dont know if we have the wrong mask or what.. Any suggestions..

    1. Yes! I should have put this in the post. Claire uses an adult medium nose mask over her mouth and nose. It's not totally perfect but it's helping and does't leak too often.

  2. This is what i am looking for ........really you made my day.
    C-pap | best cpap machine

  3. This is an older post. We are dealing with the same thing and finally found a Dr that listened to us and is wanting to start Cpap

  4. Hi there! I've just emailed this blogpost to my home health company! i loved the idea of using the adult medium to accommodate our kids' unique mouth breathing and face proportions. Hoping this could be a fix for us, as we are a month in and i've tried everything from ace wrapping to duck taping straps to cotton cap. The CPAP folks would like me to provide more info regarding model numbers etc. looking on line yours looked like the Phillips? did you use a youth (which) strapping with the adult medium (which) face piece? Also how is your daughter doing now?

    in the trenches,

  5. Thanks for posting this info. I just want to let you know that I just check out your site and I find it very interesting and informative. I can't wait to read lots of your posts.
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  6. Thank you for your post, and it helped my son adapt. My 14 year old son (with Ds) was finally given a sleep study last December and a machine last week. He was fantastic during the two studies, though all the wires attached to him were frightening and he was afraid to talk or move at first. It certainly helped that I was right there with him using my own cpap and that I was able to convince the lab to try him with nasal pillows similar to mine rather than a mask. We all spent the months waiting for the paperwork to be straightened out afterwards reminding him his cpap would help him sleep better.

    We finally brought home a machine, nasal pillows mask, and chin strap. Moo wore out happily one night, refused the second, then tried again with much hesitation. What finally got him invested was seeing the pictures of your daughter and me reading him parts of her story. Because her mask looks like the first one the lab tried (and gave us) I suggested he try it "like her" and he alarming finds being able to breathe with his mouth much easier. The small sized nose & mouth covering Fisher & Paykil Simplus did his face, but we're still working out the too-tall head gear.