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 🙏🏼

I can't seem to edit for some reason.

Just wanted to clarify re the "11hrs in 24" comment: I mean 11hrs in total, including naps.

My nephew sleeps around 5 hours a night. Takes literally hours to get him to settle and he runs around like mad even after getting him upstairs. Even if he is tired which is rare he WILL NOT lie down to go to sleep. Totally fights it. Possible neurodivergence but similarly no diagnosis. 8 years old. Barely eats. How he keeps going I dont know. Dr's wont prescribe anything. Tried routines, magnesium. Nothing works.

@Yellowcakestand that's awful 😞. We've also tried magnesium but it didn't help.

Any chance she’d have a nap after school? I know it’s counter intuitive, but being over tired makes sleep worse instead of better.

It sounds like she is naturally a night owl. It may be that you need to adjust your expectations of when she should be asleep.
To be honest, I have a 5 year old and live in a Southern European country, and a bedtime of 9.30/10pm would not be at all unusual amongst my child's peers. Here we are the weird ones for trying to have our kid in bed by 8.30.
What I'm trying to say is that even if it's difficult for you (and I really really do see why it would be! You have my sympathy!), maybe accepting rather than fighting her natural rhythm is the way to go.

I don't think she'd sleep (I actually don't think she has ever napped at home without either being pushed in a buggy or in the car). We could do with more down time though, she has a lot of after school activities.

Out of interest, what do families in your country do between 7.30 - 9.30? I'm usually exhausted by then. DD is an only child and wouldn't entertain herself for that long so it would have to be a 2hr family activity every night or TV...

Also, do they have naps? And what time do they get up?

My DD sounds just like yours, including the masking at school. We’ve just secured her diagnosis so it’s definitely worth pursuing.

For autism or ADHD, if you don't mind me asking?

Keep a sleep diary for 4 weeks. Describe everything you do to help your child sleep, and then try the gp. They will want you to have done everything possible to ensure good sleep hygiene and tackle the lack of sleep behaviourially before they prescribe.

Thank you, that's good advice

They will normally eat dinner at around 8 or even 8.30, so that fills up most of the evening.
Clubs etc run much later too - I've seen 4 year olds in swimming classes until 8pm!
I do find it a bit mind boggling (I'm British and was brought up eating tea at 6 every day), but I accept that it's just a cultural difference.
Naps wouldn't be usual by age 5. I think the kids probably wake up at around 8am.

Melatonin gummies for kids

My kids have these, they are fantastic 😅 not super high melatonin but where it used to be an hour to get to sleep plus Spotify storytime they are now out in 10 minutes... DC1 on ADHD diagnosis pathway, DC2 not as excellent at masking but suspected AuDHD (Dad and I both ND).

Delivery takes a week to 10 days from from US.

I have just posted with a link for melatonin gummies for kids but it has apparently been hidden by HQ while they check it out 😵‍💫 is this new?!

Melatonin is not a magic bullet. It decreases in effect and messes with your hormone balance. I wouldn't give it to a 5yo without camhs consult. I will ask my family member who is a professional in this field if I remember and report back.

I don't think GP will prescribe it without diagnosis.

What worked with DS is getting the sleep counselling that NHS do. Think you can self refer but check with your GP. We got the information through a school nurse visit. Advice about routine really helped. Routine will have to adapt as she gets older and bedtime gets later.

Limit sugar and screen use generally. At 5 I appreciate she's probably not getting much of either but just stating the obvious.

I do use Melatonin for myself as an occasional crutch and bought it on holiday in Germany, worked out dosage with my psychiatrist family member. I can't see it being very good for a 5yo because it sends a sleepy signal that if you ignore it then it doesn't work anyway.

At that age I had a good routine for DS and policed outside his room . I've spent a lot of time over the years confiscating books and toys he's trying to play with in bed. Some kids aren't good sleepers.

I have posted referencing where I have got melatonin for my DC (also on ADHD diagnosis pathway) but posts have been hidden by HQ so guessing it's against MN rules....

It has worked for us but I am definitely starting to phase them out as don't like the idea of them getting hooked as the only method of getting to sleep.

We got it from America. Then did a sleep log with and then without. Then took it in to the consultant who told the GP to prescribe. We were lucky in that child was on epilepsy pathway so we had access to secondary care who was happy to do it. Then we give it to the older child when she needs it. There is lots of scaremongering about it causing heart problems long term. It's not very robust evidence if you read it. There is also very very good evidence that long term sleep deprivation causes much much worse problems. I'll take the risk thanks.

We didn’t get Melatonin until we got a diagnosis, which was AuDHD with ARFID.

For us it got them to sleep but they didn’t stay asleep. We persuaded them to change to slow release Melatonin which has worked.

I think she’s too young though for an assessment for ADHD? Has she been referred for an ASD assessment? How does she score on the Social & Emotional Ages & Stages?

Op, this could have been me 10 years ago. Ds is now 15 with an adhd diagnosis. Primary also didnt believe he had it because he isnt hyperactive. But his inattentive adhd meant he missed the vast bulk of primary school and is only now.catching up.

Re sleep. Our dr told.us that melatonin is not a drug that overrides the brain, so it works for ds but.... thats because he wants it to work. So i suspect you will struggle a bit with a your dd at this point, even if you got it.

For us, I learnt that counter intuitively, screen time was helpful. It kept him calmer in the evening and allowed him to slow down. It also meant that when I accepted he was not going to be going to hed at 730, we all still got downtime. Ideally, he would swap feom.screen to a book or drawing or something shortly before bed but again, i found that if I forced it, that creates more angst and drama which then made sleep less likely. So I settled for tv last thing or cat videos! 🤣🤣.

The point is their nervous systems aren't regulated in the same way so creating stress makes it all worse.

The other thing we did for years was accept he would need one long lie in a week to catch up. It was always a bit if a balancing act - let him sleep too late and he wont sleep at all the following night, but he needed the recovery from the cumulative tiredness. I did accept either way that the night after a lie in would be an even later one. But basically, I looked at sleep over a week, not a night. We also moved into a morning process that allowed him to sleep in a bit.

Also accept that she may need less sleep. This is particularly hard as other parents are weirdly judgemental about this. We actually refused to go on a family holiday ( we made up an excuse) bevause dh and I knew the passive aggressive comments on ds' sleep would be unbearable. Even though by then we had a system that worked for us.

I will also tell you that things got worse before they got better but now he has melatonin when he needs it and he actively tries to go to bed between 11-12 and works hard to create a routine for himself.

If she does have adhd, I believe that part of the process is the child realising they are different and have different challenges to their buddies and learning how to navigate that. And sleep is a huge one. Ds is taking it into account as he starts thinking about careers. He knows that anything that requires a 5 day a week early start consistently is not going to work for him

A friend of mine has just had it prescribed for her 7 year old without a diagnosis (I don’t believe they suspect neurodivergence, she was just a crap sleeper!)

She said it has been amazing, child is falling asleep 1.5 hours earlier each evening and is in a much better mood during the day and behaviour much better.

Thanks @ZenNudist . If you could ask your family member I would be grateful 🙏🏼

Thanks for the thought @Flickitspinittwistitbopit . Yeah I would imagine it's not allowed. Tbh I don't think I could bring myself to buy it for DD without a prescription (even though I'm sure it's safe)

I would get an ent appointment because it can be breathing issues.

Regarding safety, there’s been a recent study on melatonin showing that taking it may be correlated with heart issues. Study was on adults not children and does NOT at this stage show melatonin causes the heart issues…more study is needed. My autistic teen takes melatonin though and it worried me. Thinking about weaning him off it especially as it’s stopped working anyway!
https://newsroom.heart.org/news/long-term-use-of-melatonin-supplements-to-support-sleep-may-have-negative-health-effects