Melatonin for child with no diagnosis

[Dratthebest]

Has anyone had it prescribed on the NHS?

DD is 5. Always a bad sleeper. Even as a newborn she never slept for more than 11hrs in 24, and I have awful memories of months and months of "split nights" (i.e. being awake for hours in the middle of the night) as a toddler.

These days she is a bit closer to average (averaging maybe 9/9.5hrs) but the killer is that her sleep is so late. Usually around 9.30-10. She does sleep in when she's gone to sleep particularly late, which is a blessing in some ways, but if I allow her to sleep in then she gets to sleep even later the next night.

She often yawns during the day and recently has been seeming more tired ... She was complaining of being tired all day today so I thought I'd try getting her to bed early. Lights were out by 8.30, she wasn't asleep until 10.30 😭😭😭

Answers to obvious questions: she gets loads of exercise (sometimes this helps, other times she gets overtired and goes bonkers - can never tell), some TV but not lots (and no tablet). I do cuddle her to sleep still (tried sleep training as a baby and I think it gave me PTSD (God knows what the affect was on her). I'd like to stop it but am not willing to put us both through that again, especially when she finds falling asleep so difficult. I'm sure the cuddling is making it worse though so it's a bit of a vicious cycle.

Neurodivergence: I think it's likely she has ADHD. I have it (diagnosed) and I'm 95% sure her dad does too. She's very active, chews everything, also does a weird thing when she gets overwhelmed/feels too bossed about, where she kind of grimaces and seems to be almost overwhelmed with rage. On the other hand, she has lovely behaviour at school, has lots of friends and is exceeding academically, so there's no way she'd get a diagnosis.

Thank you to anyone who has read all that! My main question is: is there any point in asking the GP for melatonin/referral to a specialist who might prescribe melatonin?

Thanks 🙏🏼

Mine have melatonin gummies, work a treat! I had to experiment with doses etc so one child has half a gummies each night whilst one has 2. There are companies that ship to UK, but Piping Rock has now stopped. Mine have been prescribed it, but they don’t like the real tablets so I just buy gummies.

For every scary study there's always a counter one. If you really want to read into it. Use pub med and not journalists who have an bias and an agenda.

pubmed.ncbi.nlm.nih.gov/39625306/

Thanks for that @TinyMouseTheatre . She scored 80 which was more than I expected tbh (it's doesn't meet the threshold for referral, but does suggest to watch and wait). Interesting that the question about sleep gives a minimum of 8hrs.

Yeah, I think 6 is the minimum age for ADHD diagnosis unless things are really severe.

Thank you @Iwanttobeafraser that's really helpful. Your son sounds great ☺️

Ooh that gives me hope!

Can that cause difficulty falling asleep? I thought it was more than breathing difficulties made them wake up?

Once she's asleep she's usually good till morning (although tbh I'm sleeping next to her so she may well wake up and go straight back to sleep)

It was news from the American Heart Association website, not some tabloid!

Often the reports from these sites are far more accessible to a lay audience. Also the research is early, and though it’s been presented I don’t think it’s been peer reviewed yet, as stated in the article I linked. So not available on Pubmed afaik.

I do advise reading up on the topic. People can make their own informed decisions with guidance from their doctor.

you need to try sleep hygiene in the first instance, no screens for one. afaik

Thanks @Windfallwasps . I had seen this, but didn't see it as very meaningful given how many people buy it or order it online rather than having it prescribed... Something to bear in mind though.

Yes, that was a stated weakness of the study. Some of the ‘no melatonin’ group may actually have been taking melatonin over-the-counter anyway, as it doesn’t require a prescription in the US. And the average age of the group was about 55 I think, so definitely not children.
It definitely doesn’t prove anything, but it did give me pause for thought I suppose.

our desperation for melatonin is why we went private after 18 months on NHS ASD waitlist with no appointment in sight. The diagnosis/assessment was about £1800.

We then saw NHS community paediatrician the following week (by coincidence) as part of EHCP process. We mentioned we had an official private diagnosis and he straight away prescribed melatonin without looking or checking the private report we had. I don’t know if he would have still prescribed the melatonin if we didn’t have a diagnosis yet.

In regards to the melatonin itself it has absolutely changed our evenings - it now stays one story to fall asleep and he is settled until about midnight. He then gets fidgety as the melatonin wears off (the liquid melatonin is immediate acting - a tablet would be slow releasing and theoretically last the night).

Good luck OP - it’s unbelievably hard isn’t it

*takes one story to fall asleep

My daughter got her melatonin the year before she got her diagnosis (age 6). I had asked many times for help as I was quite literally at rock bottom with 2 hours sleep a night for years. It was a locum who finally prescribed it as a trial. She’s only on the lowest dose and sleeps now.

Like you, I would have thought that ENT issues affected quality of sleep rather than being able to switch off and go to sleep.

Wow, was she only sleeping for 2hrs as well?! Tbh I feel bad complaining when others have it so much worse (but then full of envy when I hear of friends' children are asleep by 8 and they get an actual evening to themselves every single bloody night!!! One friend's child occasionally sleeps for 14 hours! 🤯)

Oh, and one other thing - DS really liked white noise. He liked rain. We'd play it on alexa. It helped a lot.

We've found it does. Ds has a dust mite allergy and his nose is so blocked some nights. Once he's down he usually does sleep through but it takes him several hours to get there.

Oh poor thing. Yes, definitely something to think about. She does have a bit of a cold at the moment which can't be helping.

ADHD.