Melatonin for ASD/ADHD child who can’t fall asleep

[Sleepadvice]

Long story short, DS age 9 has always struggled with sleep (both falling and staying asleep). He’s currently only getting around 5/6 hours of broken sleep a night and is exhausted. We’ve tried everything imaginable to help him except melatonin. In complete desperation (and on the advice of a local ASD charity) I ordered some 1g melatonin gummies from Piping Rock in the US (we cannot get melatonin prescribed on the NHS here) but I’m really worried about giving him something I’ve bought on the internet. Has anyone done this?

If he has an ADHD/ASD diagnosis why can't his paediatrician prescribe melatonin? I wouldn't give my goldfish a drug id bought online let alone my child.

No. DS had it prescribed but it was prescribed via the Dr at CAMHS.

I have purchased it myself from America for me to take in desperation, it was fine. It’s sold off the shelf there so nothing to be concerned about if you ordered it from a well know company. I think I used iherb iirc

We can buy it is supermarkets here (Germany) and our 9 year old sometimes has it. He is autistic and struggles really badly. It does the job.

@Howdotheydothis I feel the same. I got a bit caught up in the ‘oh we all order it from America’ attitude from a local charity/support group and I did tons of research on reputable manufacturers (the one I’ve bought is sold over the counter in the US & can be bought in supermarkets) but it’s been sitting in the cupboard because I can’t quite get over the idea that it wasn’t prescribed.

So DS was diagnosed privately because the waiting lists are over 3 years here and he was really struggling at school. The psychologist who diagnosed him can’t prescribe and the NHS here currently aren’t seeing anyone who was diagnosed privately.

I find it fascinating that it's difficult to get it prescribed in the UK but in North America it's over the counter or just off the shelf in health food shops. Really strange.

I prefer the British way

You can get 30 days of melatonin in the UK for jet lag (3mg)

I would be on the phone to the community paediatrician tomorrow morning and chasing the referral personally.

(For adults I should have said!)

@FlyMeToPluto how please? From the GP?

Depends if the sleep issues are due to being on a screen

You can order it online from any online pharmacy (and boots/superdrug)

Can you see a private paediatrician to get it as it is licensed for children I think?

Similar situation with 2 kids diagnosed privately. We have used melatonin for years since they were teens - purchased online from Biovea. Not an easy choice but the lack of sleep was literally ruining their lives. There is research which shows that ND people need extra melatonin. Their GP and private specialists are aware and both have told me "off the record" that they would do the same.

even though you've had a private diagnosis, I would absolutely request a referral to a paediatrician at your local hospital via your GP, or alternatively if you can afford to see a private paediatrician for one appointment, they can usually prescribe melatonin and then your GP picks up the prescription for repeat.

For reference my nearly 6 year old autistic son had taken 3mg for the past 3 years. This isn't considered a large dosage.

@Howdotheydothis I’ve tried this, many times. Here it’s all handled my CAMHS & they categorically will not see/give advice to a child with a private diagnosis. GP is no help whatsoever (referred us to CAMHS who then refused to help). Only other option is to see a paediatrician privately, which we may still do.

@TheSnugHare Nope, definitely not screen related. He has no screens whatsoever during the week (except for at school & homework) & that’s when his sleep is worse.

Melatonin is obtained naturally in certain foods like Tart cherry Juice, eggs, milk and nuts. Is it worth trying if you feel that Melatonin won't be prescribed?

@Rainbow1901 Thank you, we have tried similar to no avail but good to be reminded.

My son takes a 1mg gummy an hour before bed every night, and has for the last 4 years (he's 12).
We buy it in bulk when we holiday in Florida once a year. It's just on the shelves with all the vitamins in Walmart/Target.

Oh that's awful. How on earth are you meant to get help with that kind of system?

The psychologist treating my DS for anxiety advised speaking to our GP about a melatonin prescription as he was struggling to sleep and having difficulty coping at school.

The GP was unable to prescribe this and we have now been waiting 6 months to see the sleep clinic (the appointment is in December).

I decided to buy melatonin (for jet lag) and try it at home. It worked brilliantly for getting him to sleep but he woke early instead (and then still felt tired).

I believe the melatonin prescription for ADHD may be slower release.

There are still risks that if it's over used the body stops producing natural melatonin.

There is a decision to make over the risks of taking an unlicensed drug against the damage to your child's health and wellbeing from his difficulties in sleeping.

I would advise discussing it with the GP as you can definitely get it prescribed on the NHS - but you may need to wait for the onward referral.

@Sleepadvice My DD has melatonin from the NHS?

It can give me vivid dreams, but I buy it online every now and again when I can’t sleep.

I would give it to a child who couldn’t sleep. maybe try half a gummy and see how you get on.

My GP referred us to Community Paediatrics initially (telling us that it should be CAMHS but they were overwhelmed!). Community Paediatrics rejected the referral and passed us to a Sleep Clinic. We are still waiting for the initial appointment.