How to Get a Good Night’s Sleep
February 9, 2008 by Kristina Chew, PhD
Filed under Health
It’s not the case for every family with an autistic child that I have met, but “lack of sleep” (for the child, for the parents) is a fairly frequent topic. For the past year-plus, we’ve been giving Charlie melatonin, an over-the-counter dietary supplement, to help him sleep, after a period of him falling asleep every night past midnight at the earliest (and having anot-so-great day at school afterwards). Researchers at the Vanderbilt Sleep Disorders Center have found that melatonin “shows promise” in helping some autistic children fall asleep. The Vanderbilt News Service reports:
The study is the largest of its kind, looking at the medical records of 107 children with autism, ages 2-18, who had tried varying dosages of melatonin for insomnia. Twenty-five percent of parents reported they no longer had sleep concerns after using melatonin, 60 percent of parents reported the sleep problems had improved, 13 percent still had major concerns and only 1 percent (one child) had worse symptoms. Only three of the 107 children studied reported mild side effects.
Guess we’re in the 60 and 13 percent groups. The study is published in the February Journal of Child Neurology.
Besides the melatonin, other things that have helped Charlie get his forty winks are: a regular, quiet, bedtime routine and daily physical, aerobic exercise. Lately he’s also been very particular about making sure that one fleece blanket is spread over his sheet, three other fleece blankets (two which Charlie has had since he was a baby) are folded and stacked just so at the foot of his bed, the blinds are drawn up, his blue backpack and photo bucket and CD case are beside his bed—all the better for secure, sweet dreams.
Photo courtesy of psycho röy via Flickr
We’ve been using melatonin for our boys since last fall. We seem to fall into the 60% and 13% categories as well. My oldest went from being up until 11:00 PM or midnight to being fast asleep a half hour after we put him to bed. Our younger boy went from taking one or two hours to fall asleep to just half an hour. It was as much a relief to us that they were getting enough sleep as it was to them.
Charlie had a similar response of relief—-he would go to bed at 9.30 and toss and turn till past midnight; once he just started crying because he couldn’t sleep.
Melatonin was a life saver for us. Our child would stay up until midnight, 1am, even 3am. My wife hardly got any sleep for a good number of years. With melatonin we are able to have our child down by 7:30pm. We can have a life and she can actually go to school.
We’ve been giving it to our five year old for almost 6 months now, and it’s made an enormous difference. Not only does he fall asleep within a half hour of bedtime usually, he –more importantly– is far more engaged and less frustrated during the day now that he’s getting enough sleep.
My only concern is that I’ve heard some folks say you shouldn’t use it on children under 12 because it might cause problems with puberty later. Of course, not having a decent night’s sleep for 12 years would also cause problems with puberty, not to mention adulthood. So we keep giving our son the melatonin because it’s obviously helping him now, and we keep checking to see if there’s any reputable evidence it does any harm that makes it not worth using.
By the way, love your blog.
After years of searching, and finally giving up, I was the person in the group of “autism moms” in the community that never went to those support groups, didn’t participate in the blogs, because they just weren’t my kind of thinking. I got tired of debating the immunization theory, and feeling guilty about not doing the GF/CF diet, over and over again. As a person with a science background, who works in a hospital, I tend to really like research and data before I make life changing decisions on the treatment of my kids (both on the spectrum). This blog is the first I have found that actually seems rational, fact-based and with the kind of thinking I can relate to. I just read Unstrange Minds, which I found on this blog, and I can’t tell you what a relief it was to read –how validating.
As an occupational therapist who’s been working with kids on the spectrum before I even HAD any, it’s nice to read of a group of parents like myself, and actually SEE the studies so I can relate that information to other parents that I work with.
Great Job, Kristina, your blog makes me SO very happy!
@Mitch Conners,
7.30pm! I wouldn’t know what to do with all that time……I felt the same when Charlie started to be able to go to sleep at a reasonable time (9.30/10pm after those 12am, 1am nights……).
@Skye Ivory,
Thanks for mentioning the concerns about puberty (which my son is entering early, it seems; he is just over 10 1/2). We give him a low dose—3 mg—-our neurologist told us he knew of a family that gave their child as many as 15 tablets! Thanks for reading this blog—thanks, too, Joanna for your too kind words!
Just a small story about Charlie’s OT at school. For years, I have been sending in his lunch with chicken etc. cut up as I got the message that I had to make it as easy as possible for Charlie to eat his lunch (so that the staff would not have to do so much for him at lunch, understood as “down time”—and considering the pay rate for the aides, this seemed understandable). But then I went to visit Charlie’s current classroom in the fall and the OT was there; she asked me for a list of skills that she could work on. I mentioned using a knife to cut food and she said, sure, and then, “But you always send in his food all cut up! You don’t need to. We can teach him.”
Several weeks later, Charlie asked for a hot dog, and a fork and knife, and cut it up on his own.
I love Charlie’s photo bucket.
M takes Melatonin too. It has been a huge help. Most doctors are okay with her using it too. She takes 6mg of it at bedtime. We have found the sustained release version works better.
Sleep troubles have been nightmarish here. M never slept through the night until she was nine years old. She would wake up in the middle of the night totally awake. She of course never slept in later to make up for that time awake either.
Same with Charlie—–and if he did take a nap, he’d crash at 3pm till almost 6pm and then be completely unable to sleep at night.
“My only concern is that I’ve heard some folks say you shouldn’t use it on children under 12 because it might cause problems with puberty later. ”
———————————–
What problems have you heard? Delayed, precocious, behavioral? Just curious since that was a concern that I had with using a hormone–long term effects. Although melatonin seems to be benign, I held off because much of the original research was in geriatric patients. If it’s delayed puberty then I think we may be over that hump.
It took a long time with early bedtime periods and nightowl periods but now Eleanor tells us pretty clearly at a late but acceptable hour that she wants to go to bed by starting up her routine. Once she hits the sack it’s lights out and if she needs to get up to use the bathroom she goes back to bed and to sleep. This has been the status quo for the past six months and I have my fingers crossed that it will continue.
Joanna, you pretty much described me.
We used to think that TH was a “pretty good sleeper” because he’d only wake up two or three times a night wanting something to drink, and then he’d go back to sleep. So in our minds, he “slept” from about 8 pm to about 6:30 am every night. Then we had our middle son, who rarely woke up that often, but who still would wake up sometimes. Our last baby sleeps like clockwork from 8 until 7 every single night, unless he’s sick with a fever/sore throat. That’s when we realized that TH wasn’t actually the great sleeper we thought he was. We had somehow blocked out the fact that we were up quite a lot during the night with him.
He now sleeps all night and is exhausted by bedtime–passes out before head hits pillow. But he’ll often complain that he “had a bad night,” saying that he was “up all night” because something was bothering him, on his mind, etc. Since every time we look in on him, he’s practically in a coma, we’re not sure what exactly that means, and he can’t–as usual–explain.
We cannot “potty train” him for nighttime. This is becoming a problem because he weighs in now at 64 pounds (he’s six) and seems to save up all the fluid release for the dark hours. We use a pullup with the most absorbent incontinence pad made, and he still overflows pretty much every night. We’ve tried all the tactics available, to no avail. That’s how hard he sleeps.
Hello friends –
It turns out, the autism research institute has been reporting that 61% of parents who used melatonin on their children reported that it improved the sleep habits of their children.
http://www.autismwebsite.com/ARI/treatment/form34q.htm
This is within one percentage point of this studies findings. What am amazing coincidence!
Take care!
- pD
Hmmm. Ive been reading the excitment over melatonin and is it just me or does this sound like yet another anicdotal story?
ANY STUDY whether done by one parent or by a high sounding “Vanderbilt Sleep Disorders Center” that is not a placebo controlled, double-blind study is INEVITABLY going to give misleading results. IT IS INEVITABLE!
Whos to say that you wouldnt have received the EXACT same results by adding some other routine to bedtime. ANY routine! Or replace the melatonin with a placebo?
Or perhaps the parents in the study, after giving the melatonin, were so focused looking for a change in sleep pattern night after night that as soon as their child had a normal good night sleep; “AHA! must have been that melatonin we have been giving him for weeks! PROOF! “……no, no, no
Come on parents! We cant go jumping on every treatment/therapy for our kids that we hear about. We need to know how to tell the difference between science and pseudo-science.
That being said… The article DID say ONE USEFUL THING….. “Melatonin SEEMS safe for kids”. And after only getting an hour or two of sleep last night I am looking for something, ANYTHING!
-paulhillfromsitka-
@paulhilfromstika,
glad you pointed all that out—-many parents have told me that melatonin has not helped their child. we have used it on the recommendation of our pediatric neurologist. sometimes, one is happy to try any and everything! best wishes.
I never heard about the connection of puberty and melatonin. My HFA son is 13 and has been taking a chewable melatonin for many years now. Every night it is at 8 pm and he is asleep by 9:30 – 11:00 pm. He got a new Nintendo game (zoo tycoon) so he is going later.
Sometimes he says he does not want to take one and go to sleep on his own and then at 10PM he is taking it, just in case. I see OCD in him and think this is part of that like he then gets scared to not take it.
Like he drinks a lot of water before going into bed so that he will not be dehydrated. I told him he needs to space out his water drinking and be consistent througout the day.
Melatonin really helped PJ get into a healthy sleeping cycle. Before, his circadian rhythm was shot and every night he was going to sleep one or more hours later than the previous.
Yes, he would make a full clock rotation over a few weeks, and it drove us crazy.
Since he started the melatonin his sleeping cycle has been rock solid. It worked so well that I tried it for myself, but for some reason I don’t really react to it.
At least in our case it is easier to gauge progress. Before he was going to bed 1-2 hrs later every day, and sleeping 12-15 hours in one shot. Ever since he started the melatonin he gets it at 8 PM and is asleep by 10 PM, then sleeps until at least 7:30 AM.