Help me with melatonin?

[wobblymum1]

My DS 9 has finally been diagnosed with autism (loooooooooong journey)
He generally is up until 11pm no matter what I do bedtime routine wise. Believe me I’ve tried it all - from strict sleep training to endless lavender infused baths, books until my throat is hoarse, warm milk, you name it I’ve tried it.
eventually every night I snap at him by 11 and he comes in, we argue a bit and he ends up falling asleep in my bed as by that time I’m beyond tired and he’s tired when woken by alarm.
its grim for us both.
i know now it’s really hard for him to wind down with autism, and a few people have expressed surprise I’ve not got him a prescription for melatonin yet. I’m just not familiar with it- is it via Gp or CAMHS? any negative side effects?
he was on antibiotics prophylactic medication for 2 years as a baby for an unrelated condition and I generally don’t like giving meds unless necessary but I’d like him (and me) to sleep more.
thank you!

I think the only issue is that with long term use the effect wears off. So you might want to do some reading around that before he uses it.

My experience with melatonin for my son who has ASD and ADHD, is that whilst it helps him fall asleep, it doesn't keep him asleep and he'll often be bright eyed and bushy tailed at 4am, then falls back to sleep around 6/7am.

Also if we use it for any more than a few days in a row, it completely loses the effectiveness and he needs a higher dose.

To obtain melatonin we went through his paediatrician, but you can buy the gummies online.

Ordering from America will probably be a lot quicker than going the NHS route,.

Agh that’s really helpful to know. Thank you. It’s tricky as while he won’t go to sleep until sooo late 😢he does then sleep like the dead until the alarm goes off and I don’t fancy a 4am waking which would then wake his sisters (live in tiny flat and every noise just ricochets between the rooms)

I'm in the US where melatonin is used frequently for issues like your child's.

I don't hear of downsides. You can buy it OTC here. People use it to regulate sleep when traveling across different time zones, both for themselves and NT children.

Try not to worry. It can make a huge difference.

There is a constant/ delayed release formulation available that can keep someone asleep and not just make them fall asleep.

My DS sounds very similar, he will not go to sleep until 11pm ish either, then is really sleepy in the mornings.

School mornings are always a mad rush because he doesn't want to get up and I'm completely frazzled before the day has begun.
He would stay in bed until 10am on weekends, I've tried everything to push his timings back but nothing works.

It's exhausting having no evening and a bedtime battle every night, I feel you pain and you have my solidarity.

I wouldn't rule out trying it though, it might worth for your DS.

Hi, my DC is on Melatonin, it had to be prescribed by a paediatrician.
That said the paediatrician told me about a website called www.pipingrock.com where I could also order it myself.
So we started with 2mg and now takes 3mg plus 20mg of Phenergan.

DC was using Phenergan on its own before, it didn't do much on its on but with the Melatonin it does the trick and they usually sleep from about 8pm - 6:30am ish x

My child with Autism now 11 has used it for years - complete game changer - slowly gone up in dose but helps fall asleep & wakes at normal time for a child.

The consultant said it either will work instantly or won't make a difference...not sure how true that is but was instant for us!

Can you ask the doctor who provided the diagnosis?

We do keep a stock of gummies from America for when prescriptions run low.

I bought melatonin gummies from an online American pharmacy for my (autistic) 10 year old. They would previously be awake until past 11pm and really struggled to get out of the bed in the morning.

They are now sleeping from about 9pm until 7am! It's been incredible!

Was a complete game changer for us as evenings were just hellish.

There is no harm in giving it a go but it needs to be prescribed by a paediatrician so you will need to get a referral from your gp.

Huge thanks everyone 💞
so would Gp just refer us back to camhs? Or could it be a community paediatrician?

We've used melatonin for 3 years with good effects and no issues. Prescribed by paediatrician at autism assessment and then taken over by GP (although I think this varies by area). We use Circadin XR.

DC also has ADHD and when a bit older was able to describe the feeling of not being able to turn her brain off.

We've seen no reduction in efficacy over the three years.

She still wakes early but for the last couple of years has been able to go downstairs and entertain herself quietly.

Community paediatrician would generally prescribe melatonin in my area (East Midlands) - GP could continue the prescription but can't start it.

It worked wonders on my child from the first day. And since we’ve got him to therapy for anxiety we’ve been able to lower his dose. He’s been on it for years, taking the tablets with a banana is the answer. Bananas also promotes melatonin production.

GPs can’t prescribe it - must be a paediatrician

Amazing help, thank you everyone