After talking to the wise people on Autistics.org and Aspies For Freedom who have the dual benefit of both being on the spectrum themselves and in some cases having kids about Megans age on the spectrum, we’ve decided to give Melatonin a try.
Melatonin is not so much a drug as it is a hormone. Its produced naturally in the body and regulates sleep in all of us. We have lots as kids and production tapers off as we get older.
Its thought that up to 80% of kids with autism over-secrete Melatonin…
triggering a chain of hormonal and biochemical reactions affecting opioids and neurotransmitters that act on the brain. Yet some studies have observed that nightly melatonin supplementation in children with autism and other neurological and developmental disorders appears to improve sleep patterns in up to 80% of these children.
http://www.gsdl.com/home/assessments/finddisease/autism/melatonin.html
Sounds odd doesn’t it? That increasing Melatonin supply to an apparently over-secreted brain should help it, but it seems to work well for lots of autistic kids.
So, we’re giving it a try. Megan doesn’t really respond much to the Vallergan she’s been on since the age of 3 any more so we thought it was time. Besides, I’m much happier giving her something that is produced naturally in the body and that the body is wired up to deal with than giving her something that isn’t produced naturally.
Guess we’ll see how it goes.
Left Brain Right Brain 
It does seem odd to give something that you are over producing… Biological systems sometimes seem a little “odd” — perhaps it is simply that the body is over-secreting because it isn’t detecting enough in the system, and therefore produces more? Perhaps, then, the brain thinks it has to produce more than it needs to – the addiitonal melatonin might just be enough to trigger the homeostatic balance, and decrease the over-secretion? Who knows — I’m grasping at straws… yeesh. With a biology degree, you’d think I’d know this, or at least have some references on it somewhere…
I’m very interested in hearing the results…
My totally unscientific theory is that possibly the brain can’t process ‘home made’ Melatonin if its over secreted but maybe Melatonin from another source allows the desired effect to take place.
Which is a fancy way of saying ‘ I have no idea.’ ;o)
Well, its 04.50am and Megan just fell asleep after waking up at midnight. So far – not so good.
Bed.
Hi Kev
We have been using melatonin for our boy for 2 years. It worked great at first now it sends him off to sleep quickly but often doesn’t keep him asleep. The best bet we found was to give it him as late as possible in the evening. I’ve found it knocks him out straight away if he’s very tired or calms him down on the nights when he isn’t tired which makes him easier to manage(he can be quite hyper). Our pead said it was impossible that it calmed him down as melatonin does not work in that way but what would I know I’ve only observed his behaviour on melatonin for 2 years!!! That is what we have found. Will be interested to hear how you get on as I don’t know anyone else who has an autistic child taking it. Hope you all get some sleep soon!
Which is weird because ours said thats exactly how it does work!
Doctors…I dunno…
My autistic son takes Melatonin on those nights when he just can’t ‘switch’ off. I’m constantly amazed and just how quickly it works – within a few minutes he’s asleep. I’ve not found that it particularly increases the length of sleep, he tends to wake after 5 hours (exactly!), which is ‘normal’ for him.
On the minus side I’ve noted an increase in his anxiety levels on days following taking it, hence we don’t use it every night. However, they may be completely unrelated ?!?!
Interesting Kevin. Your experiences almost exactly matches ours so far – in fact, Megans woken up with night terrors the last two nights after giving her the Melatonin almost exactly 5 hours after adminstering the it.
She doesn’t seem any more anxious during the day but the night terrors are bad. We’re going to give it a miss today and see if she still has them which means we can possibly eliminate the Melatonin as their source.
Melatonin is normally secreted at night time. I’ve noticed that when I’m up in the middle of the night I tend to stare at things and space out and I feel fairly calm, unless there’s some upsetting reason I’m up. But if it’s just a late night, where we get home late or whatever, I feel fairly calm. I think that’s the effect of melatonin. I wonder about the overproduction of melatonin, maybe it’s that it’s high in daytime, causing them to rest and then have trouble sleeping at night? A bit like in Smith-Magenis Syndrome(www.prisms.org). In that case melatonin at the right time of day would improve sleep. It’s used to treat SMS sleep problems too, as you’d find out if you go to their site. In SMS, I think they produce a normal amount, just at the wrong times. Anxiety afterwards would likely be a “rebound” effect. The body notices a high level of a hormone and stops producing it, then when they no longer have the artificial source of that hormone they have lowered levels of that hormone. Since melatonin causes calm, a lack of melatonin could certainly cause anxiety.
Very interesting Ettina. I’m particulalry interested in the ‘calm’ effect of Melatonin so I’m off to do a bit of research, thanks for that.
We’ve been using melatonin for a couple of weeks now, and we find it’s making a big difference for our autistic child. We had hoped it would make her go to bed a bit earlier, but it doesn’t seem to have that effect (or, she’s very good at fighting it; I’m really good at doing that and always have been). She does, however, seem to be sleeping much better. She’s not waking at night, and she seems much more refreshed in the morning, plus we’re seeing big improvements in her compliance and other behaviors.
I’d certainly say it’s been a success for us.
my 6 year old son who has ADHD does not like to sleep, he has been taking melatonin for 2 years now and has had the dose increased to 2x 2mg per night.
I do find that it works within half an hour of him taking it, but as others have found, it doesnt always guarantee that the sleep will be a long one.
I also have found that he seems to develop a tolerance after a number of weeks and the effect is not as good. The only way I get any relief is to stop the melatonin for a week or so and then re introduce it. This seems to renew the effectiveness for a further two weeks or so.
Has anyone else found this to be the case?
Hi Simone,
I don’t discuss my daughter online anymore for various reasons but if you want to mail me (kevleitch@REMOVEMEgmail.com) I’d be happy to discuss this with you.