Let's Talk about Sleep!

There is a 50-100% incidence of obstructive sleep apnea in individuals with Down Syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 - 4 years. The overall incidence of obstructive sleep apnea increases as children grow older.  You can find the full article form the NDSS by following this link.  

I think we would all agree that our day is better if we get a good nights sleep.   Riley has always been a kiddo that needs a ton of sleep.   Through first grade he would often come home from school take a nap and then get up and plan and have dinner and then go back to bed.  We would try really hard to get him to bed by 7:30 to have a prayer of him getting enough sleep to have a good day.  Not always the easiest thing to accomplish with anything on your after school calendar. 

We have always known that Riley wasn't a restful sleeper.  If you slept with him it felt a bit like he was running a marathon or you were likely to have bruises by morning from being kicked.  He always did this crazy sit up like he's woken up but was really still sleeping.  Then he'd fold himself in half and sleep with his head resting between his feet.  It hurts to just think about but he is totally comfortable in that position. 

Sleeping cross legged

Last winter when Riley was having so many trouble at school,  just not himself and was sad his pediatrician decided it was time to have a sleep study completed.  Riley has always had strange sleep but not the typical gasping that would make you sleep of sleep apnea.  The referral went in and then we were informed it would be 6 months before the neurologist could see him.  So we waited and waited for that appointment.  It lasted all of about 10 strange minutes and we had orders for a sleep study to be completed. 

This was Riley waiting for the sleep Dr appointment.  "No mom I"m not tired.  I'm thinking!"

So we waited almost a month to schedule Riley's first sleep study.  He did surprisingly well tolerating all of the wires and stickers and even managed to sleep.  After waiting a few more weeks for the Dr to read the findings it was confirmed that Riley does have mild obstructive sleep apnea.  So that earned him another sleep study to set the titration of the cpap machine.  Since Riley has already had this tonsils and adenoids removed this is really the only other treatment.  Lucky Riley!  So we waited about another month for the 2nd study and another trip to the Dr's hotel and our super hero mask was waiting for us. 

Study 1

Preparing for study2

Study 2 with cpap

 The 2nd study was a bit more rough.  There was crying and screaming.  He hated the noise and the wind.  "The wind go outside not in my face!"  It wasn't pretty but we powered through.  Poor kid was not pleased but he did relax and sleep long enough to the data to be collected. 

At home with cpap

So in mid august we brought home  the cpap .  He started out pretty well and his hours increased each night and I thought we might get lucky.  Then I put him back in his own bed with it.  Well that was a joke.  That is wen the excuses got deep.  "My head is too fat it won't fit"  "I allergic"  "mom there was a shadow and it scared me so I had to take my mask off"  and those are just the best of the lot.  By this point going to bed which was always a pretty simple process because a huge anxiety provoking ordeal.  Often there were tears but always excuses.  We tried melatonin.  This was OK but not great.  It was finally time for the follow up with the neurologist that started this whole thing.  I may have prepped Riley a bit for him to share his stories with the Dr when he asked about his mask.  I told him to tell the truth about how much he liked the mask.  So when the Dr asks him about it he says boldly "I LOVE MY MASK!"   I filled the Dr in the rest of the story and all of the fun bed time is.  He had me double the melatonin in hopes of getting him to sleep more restfully and leave the mask on longer.  EPIC Fail!  It got worse.  After calling the Dr back we were given a RX for clodine.  This is supposed to help him sleep.  We've been taking it for about 2 weeks.  I don't really think it has done a thing other than make me stress about giving my kid drugs.  The cpap machine tracks how many hours the mask it worn each night and also how many "events" occur.  I let Riley sleep with me again last week end and his slept 10 hours with the mask but the events went up.  Then it was 8 hours followed by another 10 hour night.  The events stayed higher though.  Then he was right back down to 2 hours and a horrible nights sleep.  He still has occasions where he sits up and folds himself in half.  Well fold your self inhalf with a cpap mask on it it either moves and makes the mask leak or blocks the vent.  Neither is good.  I think it leaks and then he wakes up and its all over at that point. 

I called the Dr on Monday with this theory and to see if he had any great solutions to this problem.  The nurse called back today and let me know the Dr thinks I need to let him sleep with me longer so Riley can adjust to wearing the mask.    I'm not sure how many years it takes to become a neurologist.  I'm guessing a lot.  He has to be a very intelligent man.  He has to be.  Apparently he skipped all courses related to working with children and more specifically working with children's parents.  We are almost a full year from when this process started with his pediatrician and are still a work in process.  I can see enough of a benefit with his over all moods and behaviors that I feel like its a fight we should take up but at the same time this is one of the most frustrating processes I've ever experienced. 

When I see him in great moods like this excited to go to school and we can stay up past 7:30 and not destroy his day it makes me think it is worth it.  At 3 in the morning when I'm putting the mask back on him it doesn't feel so fun.