This week I went on a conference held jointly by the Down Syndrome Ass, and the National Autisitic Soc, for parents and professionals caring for children with a dual diagnosis of both conditions. And an excellent day it was.

One of the speakers mentioned the use of Melatonin to help the child with ASD get off to sleep. Anyone have any experiences of this? If so, are you using it under the supervision of a consultant, or have you started this on your own? Any advice/experiences greatfully received.

I don't know about children but I have used melatonin - for jet lag and sometimes for sleep. I found it very effective to get me to sleep. My ASD DS has no sleep problems but I do sometimes so have tried loads of pills/meds but melatonin is the best and is very gentle with none of the side effects that you can get with other meds.

Hey that would b great for u to get melatonin, my ds1 has severe epilepsy due t damage in brain, so totally different t yr LO, but do no a little bout melatonin, my ds1 got it in a syringe with his milk when getting mri scan as they have t be asleep for this, my ds1 is only 14 mnths..and it makes them fall asleep naturally, my ds1 was asleep within 20 mins, so would b good for u.... sorry couldn't be more helpful

We use this for DS1 (who is 5 and has ASD) occasionally.

We asked our GP about it, but he said he couldn't prescribe it as it was licensed for adults or something like that.

At our next paeditrician meeting we asked her about it, she prescribed us a months worth with no problem, only asked that we firstly gave it to him for a week straight, to ensure it worked for him and kept a sleep diary.

We now use it on nights that he is really struggling to sleep (Sunday nights for school the next day, when the clocks go back/forward) and is climbing the walls, so to speak.

We give it to him with his bedtime milk and it works better the longer it is kept in the mouth (which is great as DS1 has a habit of filling his mouth like a hamster and keeping it like that for as long as possible lately), it normally takes DS1 around 30 mins to fall asleep from finishing his milk.

DS1 has a sixth sense for identifying foreign substances in his drink/food and it is usually a nightmare to get any medication into him, regardless of flavours etc. However he doesn't seem to object to the melatonin at all, that could be because of the taste, although I really feel it is because he can't detect it in the soya milk at all.

It doesn't necessarily keep him asleep, but more helps him 'switch off' and fall asleep naturally. It also doesn't keep him asleep for any longer than normal, this means that if he falls asleep say 1 hour earlier than normal, he will be awake 1 hour earlier than normal.

I was orginally a little apprehensive about using it, but it is now a must have for emergencies in the cupboard and I will be asking for a repeat prescription, next time we see our paeditrician.

Hope this helps a bit.

You can get milk with melatonin in it - they market it as 'Night Time' Milk. Melatonin can be obtained very easily over internet - but obviously I'm not suggesting that anyone do it without proper advice from peaditrician/doctor.

Hi, my ds (9yrs asd,tourettes) has just been given Melatonin by his paediatrician to see if this would help get him off to sleep. He usually doesnt go to sleep until 12ish (on a good day!), and is constantly walking around his bedroom, fiddling in the bathroom with toothpaste, shampoo etc etc (making potions!)......I started medication at the weekend, he still tends not to go off until very late...but does now stay in bed, relaxing and looking at books. I have been asked to keep a 'sleep' diary, to see whether this is effective.

If you are thinking about this path, have a chat with paed. Hope this is of help??? But as I say, have only just started the trial !! Take Care

Forgot to mention, we asked for and got liquid melatonin, as it would of been impossible to keep DS1 to take it else.

The stuff we got is branded as 'KidNaps'.

Thanks everyone, this is excellent. Am I right in thinking everyone has gone down the route of discussing it with the paed. first? I'm just wondering if its necessary, if anyone has just gone ahead and tried it for their child. I've seen this and wondered about just getting it to try? Of course if there's any risk involved I'd go through the Dr first.
Graciefer - how are your boys? I seem to remember you have a child who each has one of the conditions of my DD3's dx. Your DS1's settling problems sound just like my girl. I'll bet life is never dull with you! I remember in particular the wonderful posts by Mr G after the arrival of your DS2

DS1 finds it hard to wind down and get to sleep in summer ad our paed has suggested trying it if he has too much of a problem or gets worse in years to come.

we got it on prescription also. havent had to use it for a while but it does its job if needed

the headgirl
just thought I would mention - i would be a bit wary of the 'extras' in the melatonin linked. My son has difficulty sleeping but the alcohol and caramel in that one would negate the sleep benefit for him.
I got plain melatonin tablets and just crushed them and put them in his pudding. they worked really well for him and i was happy for him to try it as it is a sleep hormone produced naturally rather than a sedative.
I recommended them to my mum when she couldn't sleep and they worked a treat

Thanks for that pagwatch. Tablets seems to start at 3mg - is that the dose most people are using?

The Night Time Milk - does anybody know where I can buy some? Thanks.

MMJ - I googled it, and it seems its stocked by sainsbury and waitrose.

i think I started him on half a tb until I was sure he didn't react to it. Which he didn't. I last used it when he was about 8 and one tab was still enough to give him the 'seriously lie down' sensation. He sleps pretty well now.
BTW - no health professionals involved. i just got it and tried but I have done that a lot I'm afraid ( after LOTS of research and questioning of people I trust )

I'm going for it then. And will report back

Ds was prescribed meleatonin and it worked like a dream to get him to sleep. Doesnt seem so effective of late and we're experiencing serious sleep problems but might try increasing the dose as advised by paed.

Ds is also prescribed phenagon (sp?) which he can once have once a week if we are seriously lacking in sleep and unable to function as its a sedative.

I was turned into social services and nearly hauled up on child abuse charges for using melatonin with my 3 year old (prior to Dx, bought off ebay, because I'm American and have used it on myself many many times).

Until my GP clarified to the idiotic social services that it wasn't a 'drug' and wasn't harming the child in any way...

scary stuff. Make sure you've cleared it with some medical professional and have that in writing before you use it. Learn from my mistake.