"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.

Sorry becaroo, I didn't mean get it relatively easily off the GP, what I should have said was not have quite so much problem getting a paediatrician to try it.

Does your son's paed have an NHS day job?

maria I know Yes he does (he is the head dev paed actually) but in different county

Have used the link from lovely and bought some online...will let you know how we get on.

Re: excema (ds1 only has this mildly btw so forgive me if you have tried all that follows...) Have you tried goats milk instead of cows milk? We did (with some success) but now he wont drink it! Another thing we have found to help when he does have a flare up is not washing very often I know that sounds manky, but a paed told us when ds1 was quite young and in real discomfort from a patch on his face/eye area that there was no need for dc to be bathed every day and as long as the face, hands and nappy area was clean it was fine to do 2/3 times per week....after we stopped bathing him every day his excema got a lot better...he still has a bath 2/3 times per week (he is 8.5 now)

(my dsis thinks this is awful!! )

Ds1's paed also prescribed an anti-piritic bath oil (cant remember the name sorry) which was good - came in really handy when he got CP in reception!!!

Hope you can find a treatment that helps x

hi becaroo, thanks for the suggestions. We did try goats milk when dd was younger but were advised by dietician that because very similar to cows milk unlikely to help with allergies. Main problem with dd is that she won't comply with just about anything that potentially would help. Your dsis really wouldn't like to hear when dd last had a proper bath. We do top and tail and wipe down skin instead.

It's only prescribed off label for children with sleeping difficulties. When DS1's CAMHS psych prescribed it to get him through the summer, we had to sign a load of forms as we were officially taking it as a trial.

Oh it hard when they arent compliant...it takes a certain level of maturity to think "if I do this I will feel better" and then admit you feel better when you have done it!

Ds1 has had no side effects yet from melatonin (only 2mg dose though) and its been a week....fingers crossed.

pink Glad my dc arent the only kids who dont have a bath/shower every day!!! (my dnephews sometimes have a bath in the evening and then a shower the next morning ) I was a child of the 1970's.....bath night was saturday night with strip washes in between

Fingers crossed that said level of maturity arrives sometime before dd hits 18 and antipathy to baths reduces before she becomes a smelly teen

Oh God....the teenage years!!!??

I am soooo much denial about that!!!

As far as I am aware a GP can not prescribe melatonin. I get ours from ds's paed.

I know nothing about melatonin and sleep but I do know a fair bit about excema as I suffered dreadfully as a child and young teenager..... I had a flare up at uni and had practically no nipples during my finals (TMI I know).

My skin is made worse by heat and at night I used to get really hot under the covers so I used to sleep with as few covers as possible. I also found that being with as much fresh air on my skin was soothing and seemed to help the skin. I used neat oil of evening primrose on my skin too and it had a huge effect but it had to be the food grade oil.

I also found that very hot or very cold pressed against my skin seemed to alieviate the itching. If my elbows flare up now I can be found with my cup of tea held in the crook of my arm.............

I really feel for your DD. My skin made my life miserable as a child and teenager and I wouldn't want to wish the misery onto anyone else.

Mine was finally laid to rest by Herbal Medicine but I know that isn't for everyone.

Yes it does work, I use it - no special needs - for jet lag. I have also given it to my Dd to help her recover from jet lag.m

An old friend who has 3 autistic children has it on prescription too.

I buy mine in the US where it is readily available.

Fanjo kids with asd tend to have huge amounts of natural melatonin already in them, their body ignores it. It takes the unnatural extra hit of melatonin to get their body to notice it and it to work. Sometimes it just needs a few weeks to recognise what melatonn does and they can then sleep better without it. Or so our sleep nurse said.
DS has been on it 18m now and we daren't take him off it

OP I have dreadful excema and I often wake in the night scratching. It was dreadful when DD2 and 3 were waking in the night to feed as I would lie awake scratching, and I have to scratch every little patch of excema or I couldn't sleep. Have you tried DD in wet wraps? I used them 10 years ago and they were great, I hardly itched and the sores cleared up really well. They didn't go but it was the best treatment I have used.

I work in healthcare and got my consultant to prescribe Melatonin last month. She prescribed it on the basis that yes children with neurological damage may not produce enough to induce normal sleep and it works only in children who are deficient in it.

I didn't get a prescription for it, it was sent by post from the hospital a few days later and the arrangement is when I run low I phone and more is sent out.

I spoke to a gp at work who is on the prescribing committee for the area and they advise no gps are to prescribe Melatonin within our PCT as the hospital receives the budget for it rather than the community gps. Hence them being posted to me.

Have to say I was nervous asking the consultant for it but she was positively enthusiastic when I suggested it.

I do still see some gps prescribe Melatonin but I suspect this may be from before changes in policy and almost certainly have come via an initial hospital prescriber.

Years ago I only ever seen it prescribed in blind children (whose body would not produce it naturally as they don't get natures cue of seeing darkness fall). I feel for all the other parents who could have benefitted from it back then.

DD1's Paed wrote to the GP and asked that they continue her Melatonin on repeats unless there was 'absolutely no success'.

Melatonin is something we all produce in response to darkness approaching, which signals our bodies to sleep.

It is only licensed for over 55s in the UK, but Paeds can prescribe it 'off-label' on a named patient basis.

It IS expensive, and even the pharmacies are charged circa £80 per bottle. Our pharmacist uses Specials because they charge £80, whereas another company charges £96!

It isn't a sedative, and has an extremely short half-life (around 45 minutes) so it won't stop a child waking.

If it is eczema that wakes your child, have they thought of switching antihistamines? There are 6 different sedating antihistamines. For example, Phenergen is promethazine.

Thank you all for your feedback - it does sound as though it would have to be via consultant of we do try the melatonin. I'll raise it next time we see the paediatrician or dermatologist.

Thank you, debs and never for your suggestions for the eczema. DD does tend to react to extremes of temperature. She has layers of light duvet plus cellular blanket on bed so in theory she can adjust if she gets too hot. We've also tried with frozen peas wrapped in a cloth to try to distract from itchiness. I haven't tried the hot treatment but will give hot water bottle a go to see if it brings any relief.

That's interesting about the evening primrose oil - I would be a bit wary of using it directly on broken skin, did you find it stung at all? One of my cousins who had severe eczema as a child used a paste based on buttercup extract succesfully.

Wet wraps are the one thing that have worked dramatically for dd but despite this she is still resisting using them at the moment. One incidence of her suddenly overheating and feeling intensely itchy after putting them on and then ripping them off has put her off. But she is making more positive noises about trying them again. We'll have to see if nothing else puts her off when it comes to the crunch. For dd it's all about control, partly a naturally volatile temperament, partly resentment at years of to her intrusive treatments: creams, baths that sting, bandages that stick to bleeding skin, yucky medicines, blood tests, exclusion diets...

Hi Lougle, thanks for your feedback. From what you say, melatonin is only likely to help dd to settle to sleep but may not keep her asleep. We do regularly rotate the anti-histamines we use at night because she seems to build up a tolerance to them. We've used Piriton, Ucerax, Phenergan and most successfully Vallergan, although for a while there was a supply problem with the vallergan. Apart from their efficacy, I have some concerns that the constant use may be contributing to her outbursts of anger, apossibility that wasa flagged up by gp. But I suspect there is more to it than just drug side-effect.

Last week I ordered 120 2mg Melatonin caps and was charged £300 where I work including p&p. No wonder gps will argue about whose budget it comes from!

Hi Leonie, I hadn't thought of that. Current prescription is for allememazine as you say.

Think theory is that it only works if melatonin deficiency is the reason your child does not sleep - giving one child 0.3 mg might induce sleep whereas 6mg might have no affect at all on another child ( who was not deficient in melatonin). Also there is no consensus on what a normal level is though as it varies from one person to another and across the day/night. These factors make it hard to do normal testing on whether it works.

DS has it - paed wrote to GPs who make a huge fuss about doing it each time but do eventually do it.

It does work to help get them to sleep - but DS doesn't always stay asleep.

I often use it after a night shit to get me to sleep too

*shift, night shift

although they are often shit

DS is on melatonin, prescribed by his Paed.

It has made a huge difference to his life as he's actually getting to sleep at night, so he doesn't get so stressed and anxious.