Friday, October 19, 2012

Sleep Issues

We always find Claire in the strangest spots after she falls asleep.  More then once she has been found sleeping standing up with just her head on the bed, once I found her completely cocooned in her fitted sheet. She goes to bed without a fuss, winds down on her own and then falls asleep however she lands, often folded in half with her face between her feet.

Over the last six months or so our sleeping champ has lost her title.  Claire is now a terrible sleeper.  She gets up in the middle of the night and wonders the house.  We have had to lock all the doors from the inside up high with hooks because she will just walk out of our front door at 2 AM (Safety awareness is a big issue for people with down syndrome and so many families I have met have "when my kid wondered off stories, scary!).  We did have toddler covers on the door knobs but Claire can sometimes get them off.  

She also wakes up way before the sun, totally exhausted.  I was sending her back to bed but she will only sleeps for fifteen more minutes and then gets up, often waking her sisters and then I have three cranky girls instead of one.  Right now she has been waking up around 5:00 AM, coming into our room and laying down with the dog, she cuddles with him for a while and then falls back asleep on the carpet until about 6:30 when she wonders upstairs after Makenna (6:30-6:45 is when she wakes up) and crashes, still exhausted, on the couch or floor for another half an hour awake but not playful.  Then we bribe her into eating breakfast and getting dressed with a TV show after she is "all ready for school."  By the time we load up the van to go to school at 8:40 she is mostly awake. 

I don't like being woken up early or in the middle of the night but more importantly I think it is concerning that Claire isn't getting the rest she needs.  We go and check on her in the night and even when she is asleep she is not sleeping soundly.  Camping and sharing a hotel room with her this summer was ridiculous and this sleep issue was the cause of almost loosing her (I wrote about that at the beginning of the month).  I don't know how Makenna sleeps with her every night.  She wakes me up every five or ten minutes tossing and turning.  We thought it might help having her own room and moved her into the foster care room but she had the same issues with the added bonus of both Makenna and Claire being upset about not getting to sleep  in the same room, that was pretty sweet. 


We talked to her doctor about her restless sleeping at the beginning of the summer and he thought it was behavioral because she was going through a very defiant time at home and had just had a hard end of the school year.  I brought it up again sense she has mellowed out and his plan was: one month of 3 mg melatonin, if that doesn't help one month 6 mg melatonin, if that doesn't help sleep study.  We are to the sleep study phase of the plan and waiting for that appointment.  This will be a new adventure, she has been sedated many times but we have never done a sleep study before.  We are still working with this more pressing knee issue so the sleep thing doesn't seem so urgent.  

As far as I know sleep issues aren't really common with down syndrome.  People with DS sometimes have other health problems that can cause sleep issues or can be on medications for other heath problems that cause sleep problems.  We already know that Claire's brain isn't going through the normal pattern of sleep because of her bed wetting.  She is potty trained but has almost never made it through more then three hours of sleep without being wet.  Her doctor says that is a brain problem, not a bladder problem so we don't make a big deal of it; she just has a pull up to bed and naps.   

Knee update-  At the orthopedic office they did new X rays and sent us home to follow up in another two weeks because they thought "whatever it is just needed time."  Claire's OT was about as excited with this plan as I was.  I'm so sick of  "come back in a weeks or so."  I had to ask for a brace because the way she is walking cannot be good for her ankle, knee or hip.  The brace is being made and we don't have it yet.  Our OT, Robin called the doctor and told him she didn't agree and thinks  something is torn because the injury occurred on September 30th and is still not holding it straight, GO ROBIN!  So the doctor thanked her for her input and ordered an MRI but now we have to wait for it to clear with our insurance to schedule one because they are very expensive. 

Moral of this story- Having a child with down syndrome means you deal with a whole lot of issues that don't have anything to do with down syndrome.  


  1. Riley has turned into a horrible sleeper. I'll be anxious to hear how the sleep study goes. I want to start melatonin but haven't quite yet.

  2. I'm sure I've asked you already, but will repeat just in case....have you had her thyroid tested? Ella was an excellent sleeper (restless, but slept for 12 hours a night) until the summer of 2011 when she began sleeping about 7 hours a night and no nap and it was horrible sleep at that. Low and behold...hyperthyroid. Now that her thyroid levels are back to normal and she sleeps with a weighted blanket she sleeps 12+ hours a night again, also I think that moving her up to a twin bed helped because when she does sit up and fold over she doesn't hit the wall or the rails and wake her up.

    I'm so glad that Robin was able to convince the doctor to do an MRI!!! Hopefully you will get answers soon!!!