Melatonin/Circadin - advice please!

[VforVienetta]

DS1 is autistic and has always struggled to sleep. He's 8yo, and has been on prescribed Melatonin for a year or so, at fairly low doses.
Before it was prescribed by his consultant we had been ordering it online in gummy form for the previous 6 months, and it had been helping him settle.

His sleep issues are primarily settling, and night terrors. He can't get to sleep at all, unless exhausted or recently stressed - it has been suggested this is related to his adrenaline levels, as if he gets upset (ie has an adrenaline rush) he'll often conk out straight after.

He is currently prescribed 3mg Melatonin (fast release), and 4mg Circadin (slow release).

The Circadin seems to have stopped his night terrors, but he isn't getting to sleep til 11/12/1am.
We've tried doubling the Melatonin for a few weeks, which hasn't helped.
He'll read, play in his room, or keep coming down to us for hours on end, he just doesn't get sleepy.

To compound it, the surgery keep sending the pharmacy the wrong repeat item, so when we request the 3mg Melatonin they keep sending the 2mg Circadin (he takes x2 for the correct dose), so we keep running out of the Melatonin while we email back and forth trying to get the correct one, and it's special order so takes a week to come in...

Any advice appreciated, sorry I'm so longwinded.

Hi, I think you need to speak to your sons consultant (or whoever prescribed the meds initially).

He is on quite a large dose already, and if doubling the instant release hasnt helped, then i then i doubt that its lack of natural melatonin thats the issue. The circadin only actually takes around 40 mins to work (according to my 17 year old daughter) so this on top of his capsule of instant release is a huge dose.

Have you re looked at his evening routine? keeping anything that over stimulates/stresses him out to a bare minimum? It could just be that all the Christmas changes prior to them breaking up and the excitement of christmas is just to much for him. Getting back into a normal daily routine might help.

Interesting that you think it's a huge dose, I didn't think so? I've been chatting to ASD parents whose DC are on 10mg Circadin daily.

Got an email back from the GP today, and they have now stopped prescribing quick release Melatonin, so now Circadin only. They suggested crushing the tablets instead for help in settling, as the slow release aspect is due to slow dissolving tablets.

DS's sleep has been particularly badly up the spout for a good few months now, so I don't think it's the xmas disruption, tho that certainly hasn't helped.
We're back in routine now, so we'll have to see how just the Circadin goes, and try the consultant again if that doesn't help.

I don't really want to medicate him with something else, the good thing about the melatonin is that it's naturally occurring in the body already. Amitryptaline has been suggested, which is a whole new level of meds.

Know anyone in France? You can buy 1mg capsules of melatonin over the counter in big pots to supplement the prescribed meds.

DD has ME and takes 3mg of the immediate release melatonin every night, but she still doesn't get to sleep until at least midnight, irrespective of when she takes it. But if she doesn't take it, she falls asleep 2/3am. The other one (Circadian) doesn't work at all, on its own or in conjunction with the Biomelatonin.

I can't work out if that's helpful info or not!

We also can't get Biomelatonin from the GP. Her consultant prescribes it every 3 months through the hospital pharmacy. He's tried getting the GP to prescribe it but they won't. The consultant says this is cost-motivated. So you might be able to get it through your DS's consultant, if you find it works and the Circadian doesn't.

Thanks!

I think we'll have to go back to the consultant in the end.

Before it was prescribed we got it in gummy form from Biovea online - shipped from Spain. They were 5mg gummies, so we used to cut them in half.

I have no idea why it's so tightly controlled here, you can pick it up off the shelf in Target in the USA.

My DS is also on Circadin (and was on the instant release melatonin initially), and has been on varying doses over the years. The interesting thing is he did a sleep study a few years ago, and tried different doses of circadin from 2mg up to 10mg for a week at a time, and actually the higher doses didn't make a difference, and the 10mg made his sleep worse not better.

So we ended up giving him 2mg rather than the 8mg he was taking originally. Then as he has got older, I tried smaller and smaller doses, and he's actually on 0.5mg now, which seems crazy, but it works. He still doesn't sleep all the way through and wakes early, but it is better than when he was on 8mg. The consultant said that there are studies showing that smaller doses (even 0.5mg) can work as effectively, if not better than the larger doses.

Has he had a break from it? Apparently they need a week off every now and then. Also the optimum dose is supposedly 0.6mg. A patent was obtained for this amount but not for higher doses which is why they are more readily available but they are actually less effective

My 17 year old DD has 8mg of circadin (4mg crushed for instant release and 4mg whole) and according to her pead consultant that is the highest dose she will prescribe.

DS is 10 and has 4mg crushed.

DD has taken melatonin in some form or another for about 12 years now. The dose has very gradually increased.

I agree a break my also be what he needs, as currently it doesn't seem to be helping, so no harm in trying that.

Melatonin often works best at low doses, it is typically prescribed at way too high a dose. Last time I looked at the research a therapeutic dose for adults was 0.3mg.

So glad to see this thread. We gave DS his first dose last night, and the difference was amazing! He trotted off to bed when asked, and stayed there! Usually he’s up and down for anywhere between 2-4 hours before he eventually conks out.

Really interesting to hear 'first hand' about the low dosage success - I had read that somewhere last year.
He had a two week+ break fairly recently, November I think?
We're going to stick with the new regime for a couple of weeks to give it a shot (three Circadin tabs split into quarters to release quickly, one whole), then if he's still not settling I'm going to try the very low dosage suggested above.
I'd far prefer him to be taking less.
The only thing that makes me keen to stay on the Circadin is that it's really helped wit the night terrors. He has slept through since taking it, even if he hasn't settled til 12/1am, whereas before he'd be waking in the night screaming and thrashing for half an hour. Poor boy was wiped out, and couldn't remember a thing, and the rest of us were exhausted too.

I buy melatonin for my daughter from the USA and get it delivered. Her psychologist was reluctant to refer her back to the paediatrician and none of us were getting any sleep. It was ripping our family apart and we were told to try sticker charts
Another mum recommended a pharmacy site online that you can buy it from.
She takes a tiny dose (5 drops of 1mg liquid melatonin) she sleeps perfectly now. Her behaviour has improved MASSIVELY and she has grown about a foot in height. I think it's no coincidence that she can finally sleep and is now growing. I just wish I had done it sooner. I have been completely honest with her psychologist whi clearly didn't approve but he inability to sleep was causing her to self harm and we were getting next to no help.
I hope your son settles, lack of sleep is awful for the whole family.

LemonCakeCat just wondering where you buy the liquid form please?

Lemon cake cat also interested please x

After worrying about it I told DSs Camhs psychiatrist that I was actually using gummies I’d bought instead of circadin, he said I should crunch the circadin if we needed quick release. When DS last had a night without (Nov) he was up ALL night :-( He has adhd and melatonin has been amazing for us

I use Biovea. They do different strengths of melatonin and it comes with a little pipette dropper so really easy to administer. My daughter only needs a few drops as I think most of her issues are caused by anxiety and trauma she went through as a young child. You have to wait a little while sometimes for it to arrive but I've had 3 bottles so far and they've been a godsend!