How can my wee boy get back to sleep?

March 3, 2008 2:26 AM

Our little boy (he'll be 4 in June) wakes up most nights and can't get back to sleep for up to 3 hours. He suffers from occasional myoclonic seizures when he's tired, which complicate things some nights - but not all. He doesn't cry and this isn't the usual toddler sleep problem. It's more like chronic insomnia. What to do? We're all affected by this, obviously!

The diagnosis so far is that his seizures are likely to be a mild form of epilepsy. They affect his upper body and right arm only, with gasping and some yelping at times. The paediatrician has seen video of them happening, but we've not managed to get an EEG done on him yet (he won't let the wires near him). They don't want to medicate as it's not seen as severe enough and he's likely to grow out of them eventually, but not for some years.

Whilst these can prevent him from getting back to sleep, they don't occur every night. It's a bit chicken and egg: we don't know if they wake him up, or just keep him awake and exacerbate another problem. He's not aware they happen, but he is aware that he's tired, and really does want to get back to sleep.

He sweats a lot in bed, and snores like a pig sometimes, but we don't think it's sleep apena, although we've not raised this.

He doesn't do all the usual toddler stuff: we're not plagued by a crying monster. By the time he calls out for one of us to come and try and sing him back to sleep, he's been awake for at least an hour or so, and it usually takes a couple of trips over the next hour until he finally flakes.

He wants to sleep, but tells us he can't. But this means we ALL lose sleep every night.

I sleep badly and I'm borderline insomniac myself, largely thanks to stuff filling my head if I wake in the night. He's got a terrific imagination for a such a wee mite and chats away about what he's been imagining whilst he's been lying there, but it's not bad dreams, either.

He's otherwise fit and well: bright as a button, articulate, but daytime is definitely affected by the lack of sleep - he's tired all day sometimes.

So what to do? All the advice we've found or been offered seems to be about solving problems that we don't have. We're open to pretty much any suggestions.

This has been going on since November. Before that he wasn't a great sleeper, but got through at least half the nights each week.

posted by dowcrag to health & fitness (8 comments total)

Referral to a pediatric neurologist? They will have better tactics/nurses when it comes to wiring him up, and this sounds like a miserable way for him to live.
posted by sondrialiac at 4:31 AM on March 3, 2008

2nd the ped neurologist. You might want to look into some melatonin for him. I am very much a conventional medicine kind of girl but this is a therapy that seems to get great results. Clear with his Dr of course. IANAD and you want to be sure it won't affect his seizures but I have heard and read great things about it. Good Luck!
posted by pearlybob at 4:52 AM on March 3, 2008

My son was insomniac around that age. He had sensory integration issues. Weighted blankets helped, and as strange as it is, so did The Wilbarger Deep Pressure and Proprioceptive Technique that we learned from his Occupational Therapist .
posted by maloon at 5:07 AM on March 3, 2008

Have you consulted a neurologist? Myoclonic seizures are easy enough to recognize, but there are other types of seizures that can pass unnoticed or be mistaken for something else. If he's having these, he could be missing chunks of time in a way that might affect his cognitive and social development.
posted by expialidocious at 10:13 AM on March 3, 2008

I'm a neuroscience major at the University of Wisconsin - Madison. I know a guy named Carl Stafstrom who is a pediatric neurologist and does research on epilepsy in young people, particularly cases where the diagnosis is not definite. I'd mention your son's symptoms to him and ask him if he can forward you any information on it. (Epilepsy is his specialty.) Email [e-mail] .
posted by kldickson at 11:16 AM on March 3, 2008

I've had insomnia since I was about 3 years old, and I used to keep my parents awake, too (I'd get out of bed and play, or climb onto the kitchen counter to get a snack and they'd wake up from the noise). After trying a whole lot of things that didn't work, my Mom started teaching me meditation techniques (I guess that's what they were, anyway). I was about 5 and a little young to understand it, but certain things helped me relax, like starting at your feet, focus on tensing one part of your body and then focus just as hard on relaxing it, then move on to the next part, all the way up to your head. It always helped me to get out of thinking so hard about falling asleep and how awful not sleeping felt, and how alone I was, etc., which just makes it harder to sleep. She also taught me some visualizations to help me relax, and I've also always told myself really long, involved stories until I fall asleep. But there were still many nights when I'd read for hours because nothing worked. I guess part of what mom was teaching me was how to be by myself, how to not freak out and stress when I couldn't sleep, and very importantly, how to not wake everyone else up even though I was awake.

Later, my parents got me a TV (when I was a teenager), even though it went against everything they believed in, because of the insomnia. It helped distract me from feeling alone and angry that I couldn't sleep again. I'm 35 and still have trouble sleeping through the night most of the time, and I still do most of these things to relax.

Sorry this is so long, but I hope it helps. Good luck!
posted by doubtful_guest at 1:12 PM on March 3, 2008

When I was younger I had many problems falling asleep. On thing that really helped was my mom tucking me very tightly and gently talking with me for a bit and then leaving the room with two back to back Disney read-along cassette tapes (http://en.wikipedia.org/wiki/Disney_Read-Along)

Now that I am grown up (mostly) I find it much easier to fall asleep with a heavy blanket and something like Enya playing. After several nights just hearing the CD makes me sleepy.
posted by silkygreenbelly at 6:51 PM on March 3, 2008

Thanks for all your comments. We've already seen a paediatric neurologist, but I've now managed to nag the NHS into getting us in front of his boss for a consultation - so here's hoping. The irony is that since I posted, he's slept through the night, every night!
posted by dowcrag at 12:27 AM on March 7, 2008