Sleeping issues in disabled children

October 18, 2005 8:44 PM

I have a 20 month old son who has cerebral palsy. And among the myriad problems this causes him (limited control of his limbs, poor vision, increased tone), his inability to sleep is causing a lot of grief. I'm hoping someone will have had a similar situation and has found a sleep solution that I haven't tried yet.

I guess we don't really know why he doesn't sleep, but his pattern is this: he'll conk out for maybe 45 minutes, then wake up refreshed and ready to go. After some time awake, he'll get cranky, arch and become very tense (causing him some pain I'm sure), scream and cry, and eventually get back to sleep once tended to. Repeat four to ten times every night, varying the amount of time sleeping between ten minutes and two hours, and that's the pattern at our house.

Our team of professionals (doctors, therapists, and so on) have tried a number of approaches to the problem, but it's only gotten worse over the last several months. We know he has reflux and is currently on medication for this, which has had little effect on his sleep (but has helped in other areas). Chloral hydrate is a drug he's been prescribed, which will help him calm himself down and drop into sleep without so much screaming and carrying on, but he still wakes at hourly intervals. Melatonin yields similar results.

It's important to note that we've tried many, many behavioural and lifestyle changes along the way. Sleeping in the dark, sleeping with a light on. Always in his bed, or sleeping with others. Going to bed at a set time, or waiting until he shows signs of fatique. Letting him fall asleep on someone first, NOT letting him fall asleep on someone first. With a soother, without a soother. With blankets, with weighted blankets, without blankets. Short naps through the day, no naps whatsoever during the day. With many different foods in his diet, with certain diet changes and restrictions. Warm baths. Sleeping on his side, his other side, his stomach, his back (the back is particularly impossible). You name it.

Anyway, I thought perhaps someone might have some experience with a similar situation and could lend some words of advice. Products, techniques, whatever - I'm open to absolutely anything at this point. Months of two to three hours sleep nightly, tops, has me at my wit's end.

posted by danwalker to Health & Fitness (8 answers total)

I don't have experience with this situation. However, is there a sleep researcher at a university near you? Perhaps they could use their network to find someone who specializes in pediatric sleep issues in tandem with chronic illnesses.
posted by acoutu at 8:46 PM on October 18, 2005

I really feel for you, tending to your son every hour throughout the night has got to be hard and nearly beyond impossible for all of you. I have no ideas for you (you've already tried so many). My only suggestion is to find a cerebral palsy forum and discuss this with other parents, maybe it's common and they'd have some btdt advice.
posted by LadyBonita at 9:21 PM on October 18, 2005

This mom seems like she's having the same difficulty. It's from a few years ago: maybe try emailing her to see if she found any solutions?
posted by fionab at 9:36 PM on October 18, 2005

Also: I know a doctor who pioneered the use of Botox for cerebral palsy. This BBC article shows that at least one girl (older than your child) would wake through the night because her legs would lock. I have no idea if that's the case or not with your son, but if it is, the botox helped release the tension enough that she was able to sleep and walk with an aid. Perhaps your son is too young at this moment, but it's something to keep in mind. Have you talked with your docs about botox for your son?
posted by fionab at 9:42 PM on October 18, 2005

This page (no idea how reputable) says that because of breathing difficulties and core strength, some children with cerebral palsy have difficulty breathing once they enter the dream-state (REM, maybe?). That is some kind of center practicing a form of therapy that supposedly "aims to provide a restorative pattern of developmental improvement by addressing core weaknesses within the muscular tissues of the respiratory system which affect trunkal structure, metabolism and motor and cognitive function." It almost makes sense to me - the core strength is affected, thus breathing is more difficult, thus in sleep when breathing is more automatic, the child struggles and wakes up. I'm sure that my above train of thought is incorrect, but perhaps you could discuss this therapy with your docs, or do more research on the name of the therapy listed, the Scotson Technique? At the very least, there is a study listed at the bottom of that page. Make sure it's peer-reviewed, etc., but it's a start.

I really feel for you and your family - sleep is such a vital component of just forging on with energy, wit, and verve, so I hope you all find some rest soon.
posted by fionab at 9:54 PM on October 18, 2005

Last comment, I promise: I assume you have you seen this book, Sleep Better: A Guide to Improving Sleep in Children with Special Needs, but just in case, it looks like it's recommended by several CP sites.
posted by fionab at 10:34 PM on October 18, 2005

I have cerebal palsy (left hemiparisis), and when I was younger I found it incredibly difficult to sleep some nights. I feel for my family who had to put up with this problem, and to be honest there is no one answer or technique I found to help. Like you, my parents tried diets, relaxation techniques and other methods to try and improve my sleep patterns. It's still something I deal with occasionally as an adult, but definitely occurs once in awhile. Some things to note on my personal experience:

1) When I have terrible dreams, my body becomes really tense on my left side, which cause my limbs to "lock" in place. It's quite painful. I usually wake up because of this, and to remedy the situation I place blankets or pillows underneath the limbs in order to cushion my underdeveloped limbs. I find because I have not as much muscle mass on my left side, my bones tend to stick out, and sometimes a mattress isn't soft enough to properly to alleviate pain from this problem. For example, my knees are quite bony, and if I sleep on the side, I place a pillow between the knees, or below my hip in order to prevent the limbs from knocking on one another, which causes pain. There are times when a bed isn't soft enough, so I have extra pillows around to solve that problem.

2) Stretches. Every kid hates doing them but they work wonders for reducing pain in my affected limbs. I still hate doing them, but if I do stretches before I go to bed, I find I sleep better.

3) It may sound weird, but I prefer sleeping with my affected side of my body (my left being closest to the mattress), and I always have. I asked about this to a physio therapist, who said that seemed to be the norm for people with disabilities. No idea why, but after watching many campers sleep on the affected side while working at residential camps, there is a pattern I've noticed. I've theorized that (for me), having my stronger side up (more free to move, push me into different positions), has reduced my fears of not being able to escape from the "locked" muscle tension episodes by moving quickly, but that could just be me.

If you have any questions, feel free to email me. Good Luck!
posted by carabiner at 11:06 PM on October 18, 2005

For reflux, you can try elevating the head of the bed; a thick paperback under the head end legs will do. Carabiner's answer sounds pretty useful (ask.me rocks again); maybe a fleece would help cushion the baby's body and allow a bit more sleep.

My child had severe colic, and I got a lot of "Let the baby cry" advice. It really sucked and was unhelpful. I recommend ignoring it, if you get that. Good luck.
posted by theora55 at 10:04 AM on October 19, 2005