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?

Sorry but one further thing I forgot is the psychologist advised tracking his sleep with a wearable and also asking school to provide some information. (As my DS was falling asleep at school).

I bought a sleep tracker for 14 pounds on Amazon and got an email from the SENDCO with all the times DS fell asleep in lessons including twice when they phoned me as he was difficult to wake and they didn't feel it was safe sending him home on the bus.

It was really helpful having this to hand when I saw the GP as initially she told me to make sure he was eating healthily and exercising and to turn off his phone for an hour before bedtime!

I buy melatonin online too. Never been an issue.

One word of caution.
For sleep, more melatonin isn’t the answer. It usually works better at smaller dosage.

Yes! Read some studies. 5mg I think was about the max. After that it made no difference.

Also had a look at Piping Rock and looks like a serious manufacturer.
So I’d be happy with that too.

I’m pretty sure, for adults, standard dosage 3mg. No sure about kids.
But more to the point, I know people who do better on 0.5mg than 3mg.

Also worth noting a higher dose is not dangerous. It’s just doesn’t help with sleep (but has many other positive effects, which is why I’m using it myself)

The situation with this medication in the UK is beyond irritating in its inconsistency.

Sleep is extremely important for health!

We had melatonin prescribed at our DC's ADOS (private) four years ago and she's been taking 2mg slow release ever since, prescribed by our GP (she's allowed up to 6mg but we only very rarely need a second dose). It has helped us hugely with her sleep and she sleeps more or less normally now if at the lower end of normal range.

She eventually saw an NHS paediatrician after 2 years of waiting and he was fine with it and with the private assessment which he said was excellent quality.

I have had insomnia for decades OP, I sympathise.
Sleep medication in the UK is treated very differently than how it is in the US.
I find it interesting that your son falls asleep in class at school. Does he sleep at all in the evenings if he Istruggling with fatigue? From my personal experience I find that if I can stay awake until normal bedtime I can sleep then.
It seems as if your sons sleep pattern is out of sync. I have worked with asd and adhd children who have been helped by melatonin and some that haven't. Even if the drugs you have are appropriate they may not work.

@Notgoodatpoetrybutgreatatlit My son doesn’t fall asleep at school, that was someone else’s post. My DS is often quite wired at school. He’s hardly ever slept during the day, even as a baby.

Do you have any friends who are going on holiday to Europe and would be willing to buy you some from an actual pharmacy?

If you do decide to go ahead, start at a low dose, eg 1/4 of a one mg gummy (NB don't cut up capsules or slow-release tablets). In addition, get your child out in bright daylight for 15-20 minutessoon after waking whenever possible (eg walk some of the way to school): this can help to start his internal clock. If you find the melatonin is working but you're worried about long term use, try to have a strict bedtime routine involving, for example, a glass of milk, some "sleep spray" on his pillow and do these alongside the melatonin for a couple of weeks to try to establish a "conditioned response" to the milk etc so he starts to associate it with feeling sleepy. In some cases, when you then "run out" of melatonin, the association of your bedtime routine with sleep may be enough to help Tim fall asleep naturally.

Give DS who is neurodivergent half a 1mg gummy from Piping Rock about 30 mins before bed. Takes going to sleep from a 90 minute ordeal to 15 minutes of relaxed, happy kid.

poster up thread who said they wouldn’t give it to a goldfish: clearly, your goldfish hasn’t been wildly distressed at 1am because it was exhausted and couldn’t get to sleep. 🙄

My apologies, I feel wired in the days when I don't sleep with the insomnia. It's dreadful, I know why you don't want to use drugs that aren't prescribed but getting a prescription seems insanely difficult.

Yes, my GP now prescribes 5mg for my 13yo after being asked to by the community paediatrician but I was buying it from the US before that. We started on 1mg at age 10.

I've been doing it with my ADHD kids for a year, I didn't initially realise it wasn't legal to buy them in the UK. They've changed our lives, once I realised I decided to carry on using them tbh. My kids are getting 20 hours a night for the first time in their lives and it affects everything and everyone xx

This! I was in Italy recently and walked into 3 separate pharmacies and bought some no problem at all. I would ask people when they are going on holiday and stick up that way.

It amazes me that people get a paediatrician with a diagnosis? My son is NHS diagnosed that was it there was no follow up just a piece of paper confirming autism no follow up tests for ADHD (I would be shocked if he didn't have it) they literally labelled him and ditched him

Btw I buy melatonin from piping rock for myself it's fine

@Theunamedcat I wonder if it varies by area/need?

We weren't allocated a paediatrician we asked to be referred for sleep problems when he was 3 it took 6 months to be seen at the hospital. Last year I discovered we can access a specialist paediatrician who works with disabled children via the health visitor team who also refer to a sen dentist. None of this was communicated at diagnosis point 🙄

My DD(10) has been on 2mg of slow release melatonin for a few years. It’s honestly been life-changing for all of us. The prescription initially came from CAMHS but the GP took it over.

My mum was prescribed the same dosage when she was terminally ill, and I also got some from a private GP, also 2mg. This seems to be the standard dose.

Not the point but, a sen dentist?? All these resources which may exist but we are not told about 🙄

@Maria1982

Yes it's absolutely brilliant. My son has severe needs and absolutely could not visit a standard dentist. Again it took 6-9 months for an appointment after first referal but she was so amazing and didn't say stupid stuff to us.

1 Spray (1mg) has been life changing for our son and also us. Our supermarket sells it. I am happy to send some over, but it may get stopped by customs?

We also love the SEN dentist.

Just to add my kid who is autistic also had the same sleep issues as your son, transformed overnight into a good sleeper once he started melatonin. Life changing for us at a family.

DS was diagnosed autistic (NHS) about 5 years ago just before Covid, and was discharged in the Covid era after a couple of phone appointments. He's always had less sleep than average but it wasn't a major problem then. Melatonin was discussed, but at that point in time I didn't feel it was necessary. I also wasn't expecting diagnosis that day! Now he's a teenager and his sleep patterns have shifted accordingly.

Would it take having to be referred back from the GP and take years to see the consultant to be able to get Melatonin prescribed?