Melatonin questions

[Sunflower1650]

5 year old autistic DS takes forever to go to sleep at night and he’s getting worse. He seems physically exhausted but doesn’t fall to sleep until 10:30pm. Wakes around 7am but most nights is also awake in the night. Sometimes we find him downstairs watching tv in the middle of the night unless one of us hears him getting up. In a morning he is so tired and this affects his mood, his eating, everything. He has a solid bedtime routine, we’ve tried playing audiobooks etc but he just can’t nod off for ages (but looks and seems really really tired). I did bring all this up with his paediatrician during his autism assessment early this year and she refused to prescribe melatonin because she felt he got enough overall sleep but I really disagree. Can I buy melatonin online myself or is this too dangerous? Where would I get it from and what would be the correct dosage? Ive been reluctant to without having it prescribed but im not sure what else to do. He just can’t wind down.

Eating kiwi fruit is supposed to give a similar effect. It can definitely be bought over the counter in Spain so is probably available on line. If hide thinks it’s not a good idea I’d argue with them rather than going off piste myself. Personally I think it’s filthy stuff. It gave my dc horrific nightmares which he couldn’t tell weren’t real. Devastating.

We live in the Netherlands where you can buy melatonin from the normal shops. DD (5yo) has terrible sleep too, 1030/11 is normal for her too and she's fairly often awake for 3-4 hours in the middle of the night. She averages 5/6 hours of sleep I would say.

About 2 years ago we asked the GP for guidance on using melatonin because even though we could buy off the counter we had no idea about dosage etc.

The GP told us to start with 0.2mg 3-4hours before she would normally go to sleep (so at like 6/7pm) and increase by 0.2mg a week until there was an effect, up to a maximum of 1.5mg. I know from others on here and elsewhere that that dosage is considered vv low - but she was just 3yo at the time I suppose. We did notice a significant effect in terms of her getting to sleep (much more quickly), but the night wakings were even worse. We tried it in the end for about 5 weeks but decided to stop because it wasn't helping the nights (which was kind of already expected given that it's not the slow release type - which I don't think you can easily buy off the counter). Also was worried about how DD was feeling with it, had the sense she wasn't feeling herself (hard to know exactly because she is non verbal).

You could request a referral to a sleep clinic.

Some people buy melatonin online.

Doses range from the tiny like pp mentioned, to 5+mg per night.

I would get an alarm or similar so you known when DS is going downstairs.

Hello, just to say that the GP can now prescribe melatonin if the child has a diagnosis or is on the pathway for one. My 12 year old has been taking this for over a year now (was first given when he was on the pathway). The GP himself was not aware he could prescribe it, but after a promise of investigation, he was happy to go ahead and start at the lowest dose and increase as needed.

That will depend where you live. It isn’t the case nationally. Many GPs will not initiate prescribing, which is inline with the BNFC which says “initiated under specialist supervision”.

That’s interesting to know BrightYellowTrain. It was actually the primary school EP that advised me to approach the GP when his sleep difficulties came up during a meeting. I guess maybe it could be worth mentioning to the GP

I would strongly advise against buying melatonin online....

1. because a professional should be prescribing the correct dose to suit your individual child's needs
2. because you can't be sure of it's origin and authenticity
3. because any child's medication should be monitored and reviewed by a doctor.

Melatonin can have side affects.

I do think it's ridiculous though that the doctor thinks 10.30pm- 7am is an OK amount of sleep for a 5yo!!
Definitely get a 2nd opinion.
Does he wake naturally at 7am or are you waking him up at that time?

Does he stay in bed whilst trying to settle or is keeping him in bed difficult? My daughter has to fiddle with fidget toys in bed or look at books in order to wind down enough to sleep.
What's his room lighting like? X