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12ml of melatonin and still won't sleep.

(13 Posts)
tallwivglasses Wed 26-Sep-12 12:41:06

That's it really. DS is 13 and autistic (severely) and his sleeping has always been erratic. Until recently we were alternating between melatonin and alimemazine but found the ali made him moody and didn't work anyway.

In the holidays his dose was put up from 9 to 12 ml. Sometimes he sleeps fine, sometimes he's up all night and can stay up the following day (albeit quiet and grumpy). He paces from room to room, screeches, jumps and thumps and wakes up everyone else (and the neighbours). I have to stay awake because he can't be left alone. I just follow him around and try and keep him quiet. I can't even get him to stay still to play with a toy or give him a massage, it's soul-destroying. I could cope with this when it was occasional but it's happening several nights a week and driving me insane.

He's also on rispiridone and meds for constipation. does anyone else's child have any other meds for sleep? The psychologist is very reluctant to give him anything else (as am I) I just want my boy to sleep!

UnChartered Wed 26-Sep-12 12:53:15

wow, that's a really high dose!

i read that too much melatonin is counter-productive, do you give it all once or spread throughout the night?

UnChartered Wed 26-Sep-12 12:55:19

sorry, that reads really judgey blush

we use melatonin for DD, and were advised that less is definitely 'more' but we can top up her dose if she wakes again at least 3 hours before we want her to get up

davidsotherhalf Wed 26-Sep-12 13:04:03

what make of melatonin is it? is it just a normal brown bottle? or is it kidnaps brand?....asking as we have tried all melatonin meds and tablets and the only one that works for my dd is kidnaps brand, (different formula) ask psychologist to prescribe kidnaps if possible, my dd takes 6ml

dev9aug Wed 26-Sep-12 13:17:52

I second davids re Kidnaps, the other stuff is just cheap and ineffective.
Also, is there an underlying cause for lack of sleep. We thought Ds sleep was due to ASD, but over the months, it turned out that it was due to stomach pain. he is non verbal and very passive so doesn't scream or cry when hurt so we just assumed it was other factors. Thankfully after discovering this and putting him on a course of laxatives to help with constipation, it has helped massively, he doesn't need Melatonin now, just saying.

Does he go to sleep on his own ever? if he does, how long does he sleep for?
is there a pattern to his sleep at all?

willowthecat Wed 26-Sep-12 13:23:52

Melatonin will only work if the body is deficient in melatonin in the first place and in so for some children a very small dose will be effective whereas for others a much larger dose will make no difference at all. Deficiency in melatonin is very hard to assess though and there is no certainty about what the right amount is - sorry not much help ! There is reasonable evidence from adult users though that melatonin in larger doses can cause nightmares.

tallwivglasses Wed 26-Sep-12 22:55:23

Thanks all. It's kidnapps. We've just started giving it to him in stages and on odd nights he thankfully doesn't need the whole dose. I can't believe we've never been advised to do that, she's just upped and upped his dose sad

He only ever goes to sleep without medication if he's been up most of the night before. On a good night he'll sleep from 9pm - 7am. On a bad night he can stay awake all night and the following day.

I think the constipation/excessive pooing is a part of it but we can't find a balance with the poo meds. DS has a really healthy diet. There seems to be no pattern to whether he's pood or not or sleeps or not. Or if there is I can't see it. I think I'm going to have to keep a really detailed diary and see if something jumps out at us.

Lougle Wed 26-Sep-12 23:00:42

Does he get to sleep with the melatonin, then wake again, or simply not sleep?

You can get a sustained release version.

tallwivglasses Wed 26-Sep-12 23:22:25

Once he's asleep he tends to stay asleep. Or if he wakes up, he stays still and quiet. Occasionally he wakes in the early hours shrieking but rarely. He won't take tablets. When he was on the tablets I had to break them up and put them in milk.

On a good night, he goes a bit dazed then happily wanders off to bed. I go up and he's all cuddled in. On a bad night, he looks like he starts getting dozy then that just goes, he starts being very 'autistic' - pacing, flapping, tapping. It's like he has to keep doing those things to feel safe. He doesn't appear distressed - but he's not relaxed or happy either sad

tallwivglasses Thu 27-Sep-12 23:53:46

Still awake. And he's just worked out how to unlock my bedroom, snuck in, covered himself with lippy so he looks like he's done 10 rounds and then pissed in my bed sad

boobybum Thu 18-Oct-12 13:34:40

Hi, bit late I know but wanted to second the comment about the high dose being counterproductive. I would start with 0.5ml about 30mins before bed and see how that goes. Try increasing in no more than 0.5ml increments if necessary. We're using Kidmel at the moment-hate the fact that we are medicating our child but having to spend 2hours dealing with his screeching/inappropriate climbing etc whilst his two sisters are being prevented from sleeping had led us to this point. We have a 'sleep consultant' coming tomorrow-can't wait to hear what they have to say that we haven't tried! The words 'grandma' and 'eggs' spring to mind!

tallwivglasses Thu 25-Oct-12 09:54:59

Hi booby, just noticed your reply, thanks.

Well, the day after ds had had barely any sleep I gave him 4 ml, planning to give him the rest if he still hadn't gone down by midnight. I didn't need to and it's pretty much stayed at 4 ml every night since, with ds choosing to be in bed by 9pm!

I do kind of wonder why the 'specialist' dr hadn't suggested this, instead of just upping the dose all the time hmm

Thank god for the specialists on Mumsnet!

tallwivglasses Thu 25-Oct-12 09:56:37

Oh, and booby, how did it go with the sleep consultant? I'm tempted to lower the dose even more having read your post.

Thanks everyone x

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