"We don't prescribe Melatonin because it doen't work". Any thoughts?

[pinkorkid]

Having read recommendations on here re effectiveness of melatonin for poor sleepers, I asked GP if he thought it would be worth trying for dd. She has severe eczema and seems to have built up a tolerance to the antihistamine given at a sedative dose that she normally takes, hence awake for hours scratching at night and missing days off school. He was intigued that I had heard of it but said no longer prescribed because it didn't work.

Is this perhaps true of neurotypical children but not of those with ASD or ADHD because of differing brain chemistry? Or is it perhaps down to cost? (Cynical, moi?) Or risk of side effects? If your child has been prescribed it, was it by consultant rather than GP?

Not quite ready to give up on it without knowing more as we are desperate for some sleep?

Thanks.

In my area you can only get it via Cahms but that involves supping with the devil himself as far as I'm concerned so I'd rather not.

12 weeks of extra magnesium (4 baths a week with a mugful of epsom salts) + magensium supplements did help my lad go from 3-4 hours broken kip to about 6-7 with one-two wake up calls per night. I'm now experimenting with just supplements and gonna add a little zinc from next week to see if we can get any further improvements.

Would changing her diet help the exema?

i asked about this, and was told it wasn't licensed and could be linked to learning difficulties (cognition) by my GP. Didn't pursue it.

It works bloody brilliantly!
Before melatonion my ds, ASD, was grumpy, moody, violent, aggressive and a virtual non-sleeper, often staying up till past midnight and then waking for long periods during the night.
2 days of using melatonin, and 2 very long 12 hour sleeps and he was transformed. Serious sleep deprivation over several years which exacerpated his ASD was wiped out by actually being able to sleep. Yes he does wake up several times a night, which could be why you GP suggests it doesn't work, but he is easier to settle and he gets a much better nights sleep then he has done in 10 years.
He is still a grumpy, aggressive boy with ASD but he is improving every day and actually learning in school now, all from a good nights sleep

Oh and it was his consultant as none of our GP's would prescribe it. Thanks GP's for making us wait over a year before he got the treatment he needed

We were told by the paed that did ds1's SA medical last week that our own pead, who works under her, should already have prescribed it for ds and we should ask for it at his next appointment, so some PCTs must still be prescribing it.

That said, I'm not sure if I'm going to ask for it just yet, as I want to go down the supplement route first and see if that helps.

You can buy in a spray form from detoxpeople.co.uk. Although in this for its a much lower dose than would be prescribed. They don't call it melatonin they call something else sleep ease or something. They have online help and ask them where it is - they come back within about a minute. I actually found that my ds only needed it for about a week because he doesn't wake in the night but wouldn't fall asleep until 10pm, I found it helped him reset his body clock. It's cost about £12 and has about a months worth of spray.

we were told it could only be prescribed for children by a consultant on a named child basis although GPs can/do prescribe it for adults with sleeplessness caused by Alzheimers (?sp). ds' paed prescribes it, our GP won't even on repeat.

It works brilliantly for ds. We recently went to centre parcs for a week & decided to try him without melatonin. He had at least 6 hours of vigorous activity everyday & was still awake at 11-12pm every night & as wakeful during the night as he usually is. With the melatonin he is asleep by 7:30pm, it doesn't keep him asleep much past 1am but at least he gets some sleep & we get an evening.

He was being investigated for epilepsy before we started using melatonin & within a month his 'funny turns' & absences had completely stopped (I'm sure they were a result of complete & prolonged exhaustion).

Ah, hyperotreti, that explains why the paed can prescribe it for ds1 then.

it doesnt work for my DD at all, but works for others so I wouldnt say it doesnt work.

i think it works for children with ASD because they might have low levels of melatonin though, which NT kids might not have..it's not an actual sedative

Ye it works. We get liquid stuff for ds and tablets which I crush for dd - from our GP. Keep pushing - I suspect it's cost.

It is all about cost. My DS's consultant told me he was no longer able to give prescriptions...but he can for those children already on it !!!!! Which means those families like ours who tried lots of alternatives first eg;sleep nurse have lost out.

He was allowed to direct me to a website and talk about dosage,but we have to pay for it.

It does work in that it sends DS off to sleep but doesn't help with the waking up (and shouting/singing) in the very early hours of the morning.

Just to add it does work and GP won't prescribe as they are answerable to PCT , we got from paed consultant as temporary measure for 2 months , and he falls asleep within 40 mins but he still wakes up every night after his powernap , hoping he gets into habit of falling asleep ?? before I run out on the supply...

My GP told me that they are no longer "allowed" to prescribe it to under 18s I know some on here get it from Cahms?

I had to go to a private paed to get a prescription for it....tablets cost £14, liquid is £80 (cheapest I could find)

I am going to ask my BIL - who travels alot in europe - to get some for me...where its sold over the counter as a health supplement!

It has helped ds1..he is getting to sleep much quicker (which has been an issue) and is going back to sleep on his own when he wakes in the night. (he is on the lowest dose)

Dds consultant prescribes it and Works for her. However consultant told us he would neds yo prescribe ir everytime as gp would het huffy about it due yo the high cost as its unlicensed

Thank you all for the very helpful replies and sorry for delay in coming back on here again - 5 people fighting over sharing one laptop here.

bochead - thanks for tips re supplements, I will investigate the magnesium and zinc supplements. Unfortunately epsom salts in bath is probably a no no at the moment as she says even plain water stings.

oodlesofdoodles - we have tried exclusion diets as she tested as allergic to long list of foodstuffs, but with no particular improvement in her skin.Suspect the food allergies are just part of the cause.

frizzcat - thanks for the tip re detoxpeople spray.

debs75 - from your description of the benefits for your son, it sounds like ther would be times when it would help dd's older brother too (also a very grumpy asd teenager). He is very hard to get off to sleep but thankfully normally stays asleep unless he's having a major stress about something.

grumpypants - I can understand you being put off by GP's warning. I think I will have to do some more googling to see what info is out there about potential side-effects

hyperotreti , cansu, intothewest, lovely boys - good to hear that it is effective - at least with the getting off to sleep for your dcs

zzzz - interesting that it seems to be less restricted in mainland Europe than here

fanjo - getting the right medication does seem to be all about trial and error, many anti-histamines that would knock out most adults seem to have no effect on dd whatsoever.

I think I will try to find out more about any potential medical contra-indications/risks vs benefits and then if it sounds like it is appropriate for her I will raise it with the consulatnt next time we see her.

Thanks again for taking the time to reply.

Thanks becarooo and chundle - I'm glad it works for your dcs. Sounds like cost may well be the dominant factor. I could point out that being awake scratching half the night probably increases the severity and therefore costs of her eczema treatment exponentially not to mention my migraine pills etc

The paed advised us to try melatonin for DS but GP had to prescribe. I asked why it wasn't prescribed to adults who have trouble sleeping and she said it is very very expensive. Don't be fobbed off. Melatonin works for some kids and not for others. It helps get a kid to sleep but doesn't keep them asleep iykwim.
Re the epsom salts baths-my DS likes to drink the bath water (i know-disgusting). Would that affect him if it had epsom salts in?

It's not allowed to be sold in the UK as a health food, and until now was not even licensed as a prescription drug. So basically for years it was unapproved for British patients, but specialists would often risk over-riding that. To cap it all, someone important (forget who) then did a big report saying melatonin was useless. So a lot of GPs were cagy about giving a disapproved-of drug, fearing being sued if a reaction happened, or the batch was dodgy.

Then one particular brand (50p/capsule?) got a UK license, but only for short term use in elderly insomniacs if the usual things didn't work. And the original cheapo brands became even more officially disapproved of, and also massively more expensive, especially for liquids (eg 1000 pounds a year).

It seems to work for ds, and I don't mind getting it from the hospital.

Melatonin only gets them off to sleep initially, maybe she thinks that's not his main sleep issue... or just possibly has a few other tricks she wants to try first. I think if you keep asking the specialist, eventually help will come. It feels tedious and frustrating though. I well remember waiting to trial ds's ADHD meds.

For some reason children with ADHD, autistic spectrum diagnoses or learning disability seem to get prescriptions relatively easily: I wonder if the assumption is that it's less ok to use sedatives on other children.

That hasnt been my experience sadly maria

waiting - the salts could be helpful, maybe similar to the way dead sea salt mud is mean to be helpful for psoriasis. The problem for us is dd won't go near a bath - we clean her skin with dermol antimicrobrial cream instead.

maria thanks for your summary of the research/reasoning behind the unwillingness to prescribe. Also as melatonin seems to work mainly to get the child off to sleep, it sounds like it won't be the whole solution for us as dd also wakes repeatedly and finds it hard to get off to sleep again.

imogen your experience sounds very similar to ours: the damaged skin, interrupted sleep and huge impact on school attendance. Re the allerief, we have found that we have to rotate the anti-histamines because dd seems to build up resistance after a while.

The one which seems most effective for her is Vallergan -active ingredient:? Trimeprazine (alimemazine) tartrate. It takes a while to take effect she's still not often asleep by 11 but usually sleeps through eventually but is often still too dopy to wake up for school next morning. It may be a case of adjusting when we give the dose. Also you need to particularly careful when measuring the dose so as not to give too much. the other issue is that there has been a supply problem during last year, although we have just got some again. Last two nights have been the first unbroken ones in a couple of months.

The other possible side-effect to consider with the anti-histamines is the effect on mood. At least GP suggested this may be a contributing factor to dd's ranting and rages, but I think they are not the whole story.

Anyway thank you guys for your advice and here's to more sleep for all of us...