DS, ASD - melatonin?

[JoCorry]

Posting here for traffic.

DS was dx at 8. He’s in mainstream with no 1:1 and generally ok.

He’s never been brilliant at falling asleep and I’m starting to become more concerned at how long it takes. He can fall asleep without us there but it now typically takes about 90-120 minutes. Currently on 120 tonight and still wide awake. If we stay in the room, it’s usually slightly quicker but can still be near the 90 mins. Once asleep, he’s usually down til the morning these days.

Is melatonin potentially the answer? Really interested to hear any experiences people can share. Thanks.

We had the same kind of thing. Diagnosed aged 8 and bedtime crept up and up over an 18 month period until they couldn't get to sleep until 2am...every single night! I was utterly exhausted. This was long before they ever used electronic devices so it wasn't to do with that.

Melatonin was a game changer! The first night, they said "Mummy, it's really weird, I feel tired!"

However, it does make them wake up in the early hours a few nights a week now.

Ours was that child, same age. We give him 1mg melatonin gummies from US - piping rock is the website. It’s half the dose of what children with ADSD get prescribed, I believe. Worked amazingly from day one - he just feels tired like in a ‘regular’ way and falls alseep. If he/we forget, the difference is very noticeable. Ours has no official diagnosis so we don’t have a prescription.

Not sure why I just got hidden but I concur absolutely with the poster above!

Thanks. Reflecting, I think I’m mainly worried about long-term use and stopping. I’ve read it’s not really supposed to be used over here for more than 13 weeks and the long-term effects aren’t really known. What happens when it’s time to come off?

Ask someone who's allowed to prescribe it.

Helpful when we’re in what’s become a difficult situation that has us banging our heads against a wall and just worried for our son. We are struggling generally at the moment and it would be nice not to feel on our own. I didn’t need to wake up to that.

Per my previous posts, I’m looking for shared experiences so I don’t feel like we’re approaching this so blindly. Of course I’ll be talking it through with medics.

Worth searching on here for other threads about this.

Briefly, DD has been on it since age 7 and now has normal sleep habits.

I'm convinced that she's naturally low in the sleep hormone and evidence suggests many ND people are.

We use melatonin because of delayed sleep onset in ASC child. We were getting to 4am most nights and it was unsustainable.

We tried to go through peads but there was a lot of hoop jumping like sleep diaries and suggestions for sleep hygiene and I knew it would all make it worse (my Asc child is PDA) so we didn’t bother continuing. We ordered the lowest dose online. It’s been amazing from the very first night. I honestly think my child doesn’t make enough naturally. They have never had good sleep right from birth. Always struggled.

It’s really helped re establish more normal sleeping patterns and help our child who WANTED to sleep but couldn’t fall asleep achieve that.

We take regular melatonin breaks and currently aren’t using it. Yes the bedtime is slipping later again because I think they just don’t produce enough naturally, but it’s not horrendous like before and we can use it again for a while if my child is really struggling with falling asleep.

Melatonin will help them fall asleep but it isn’t a sedative and won’t make them stay asleep.

It's the word g*my it gets auto blocked!

OP I buy from piping rock for me (insomnia, perimenopause) DH (ADHD) and DS (not ADHD but has inherited some of his dad's sleep issues) and it's amazing

Ours was prescribed by the paediatrician at ASD/ADHD assessment and is now provided by our GP. As they've been prescribing it for 4 years, they evidently aren't worried about long term effects?

Thank you all - this is all honestly really helpful (I’d searched for previous threads but missed some info and it’s so useful to have a live convo about it). Sympathy to those of you who’ve experienced the same or worse (and I do know it could be a lot worse).

I’m going to speak to the GP today about going back to paeds - he was discharged from outpatients last year. It does sound like this might be a way forward; something we should be trying at least. TBH if so then I feel guilty we’ve not looked at this route before if we could have helped him sooner - it’s the falling asleep that’s still the issue these days, and he wants to, he just can’t seem to like he should (and then of course the knock-on effects end up affecting everyone in the family). My poor guy.

Yeah, it's awful when you're in that loop. Which we were from DC age 3 to age 7. Just got worse and worse and I remember her running around the landing late one night saying she was "Elsa" using a throw as a robe, catching her foot in it and banging her head really hard on the skirting board.

Her sleep's kind of ok now although we do have to warn guests and sleepover hosts and school trip teachers that she will wake at 6am, whatever time she's gone to bed...

You could try the magnesium children's gummies you can buy on Amazon. Definitely help my dc fall asleep.