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Melatonin without prescription?

(25 Posts)
BathFullOfEels Wed 21-Nov-18 21:18:49

Has anyone done/ considered this for their child? Ds is 6 and we’re still awaiting an official diagnosis for asd/ adhd/ dyspraxia/ all three (into our third year of waiting now!).

I’m going mad. Dh works away mon-fri and I have an autoimmune disease and pernicious anemia, a 2 year old and no real support network. Ds will fall asleep at around 11, wake at 2 for about an hour, then will be up for the day from 5.30. I can’t leave him alone as he tries to sneak out of the house to check on the chickens/ wake up his brother/ chew wires/ pull tiles off the walls.

A friend who has a daughter with ASD said her daughter was similar at this age but she got prescribed melatonin and she now sleeps 10 hours a night and is much happier during the day as a result. I mentioned to my GP about it last time I saw her but she said that it definitely wouldn’t be prescribed until Ds had a definite diagnosis (we started the process 3 years ago) and even when he was diagnosed a lot of doctors aren’t happy to prescribe due to lack of evidence that they actually work. She did say that you can easily buy them online, a lot of people will go ahead and buy them if they can’t get a prescription but she said if I was going to do that then I need to be honest so that she can ensure I’m at least aware of correct dosage etc.

I can see they’re easily available online, in the US they’re available over the counter and, as far as I can see, there don’t seem to be any considerable risks to trying them with Ds. But it just makes me feel a bit uncomfortable that I can drug my child with gummies I buy over the internet. If I could walk into a pharmacy and have the pharmacist hand them to me with a definite dosage written on the side I’d feel so much happier about it.

So, should I try it? I do a good bedtime routine with ds - no screens after 6, warm bath at 7, story together etc. He’s currently in bed jumping all over the place because his arms are too awake.

Foxesjumpers Wed 21-Nov-18 21:50:02

I did - because I read about melatonin but didn't realise we could get it on prescription!
DS already had ASD diagnosis. Are you in any way close to getting one?
After realising you could get it prescribed I spoke to the GP about it, he gave me full information about it and the potential "risks" (there aren't really known risks, just things that might happen based on the fact that it hasn't properly been tested long term).
Once I confirmed I was OK with that he was more than happy to refer me to paediatrician to get it prescribed. He was also pleased to hear that we already had a strict bedtime routine in place and our problem was in no way that he was difficult to get to bed, but that he took hours to fall asleep once in bed. In fact DS barely bothered us at all at night, he would just be awake watching his lightshow but then was obviously very tired during the daytime. They just want to be sure that people aren't using it because they haven't sorted out any behavioural or other issues which make it hard to actually get their child to bed which should be treated in other ways rather than with drugs.
We were obviously in a different situation as we already had a diagnosis. I would say if you do go unprescribed to make sure you use as low a dose as possible. We used Sundown gummies and gave half a gummy per night (full dose being 2 gummies).
However worth noting that these products are unlikely to be as accurate as prescribed melatonin in terms of how much they actually contain.
Also, you might find that melatonin helps with your child falling to sleep to start with, but doesn't help with them waking up. I personally think it has helped with keeping him asleep but not everyone does.
Just make sure you do a lot of research into it and then you will be in a position to make that decision on behalf of your child.
Hope this helps - feel free to PM me if you like.

suitcaseofdreams Wed 21-Nov-18 22:05:00

Not true that paed won’t prescribe without diagnosis - mine did.
Wanted to be sure we’d tried everything and had good bedtime routines in place and once he was assured of this, was happy to prescribe.
We do now have a diagnosis but have had melatonin for 18 mths before that...

PunkyBubba Wed 21-Nov-18 22:49:14

It's funny to see this question on here today.

I've been giving DS1 melatonin bought from the US for years, with paediatrician fully aware. In my area paediatrician won't prescribe until multiple hoops have been jumped including attending 'sleep workshops' where such gems as "do you have a bedtime routine in place?", "have you tried white noise?", and limiting screen time were discussed while DS1 jumped on the table, flipped the light switches, and kept running off..

The paediatrician wasn't phased when I said we had started sourcing it ourselves from the US, and just advised us to give him a break once in a while for a week or so, so he didn't become immune.

Yesterday a social worker, who ironically we got involved in our lives as we were trying to get respite care for the school holidays, told us that as melatonin is a controlled drug in the UK and we are giving it to a minor it is not only illegal, but seen as a safeguarding issue confused and we need to get it prescribed.

I have spent a fair amount of time today on the phone being fobbed off by paediatrics who said we need to contact the company that do the sleep workshops, as they prescribe it.. then that company saying no they don't and we need the paediatrician, and the GPs office who say they cannot refer to paediatrics as we don't meet the criteria..

So while they are being useless I am now meant to stop giving him melatonin, and go back to him not being able to sleep, being exhausted all day.. which then affects his mood, behaviour, increase in meltdowns.. and we lose our evenings trying to help him settle.

I really wish I had never tried to get any 'help' as they have just made things potentially 100 times worse

BathFullOfEels Wed 21-Nov-18 23:43:49

Thanks for the replies. That’s interesting to hear it can be prescribed without a diagnosis, I’ll ask GP about it next time. I’m not sure how close we are to getting an official diagnosis - he’s been referred to a paediatrician by GP, paediatrician wanted him referred to a educational psychologist but needed his school to sign off on it. School have signed off on it so the latest is 2 months ago we got a letter saying we are on a waiting list to see an educational psychologist and from what I can gather waiting lists for that are about 6 months. Oh, and we went to an ‘attention workshop’ where ds was sat down and told to watch an adult play with a wooden toy for 40 minutes without moving, touching the toy or speaking. We lasted about 10 minutes. No one will actually tell me if this next appointment will be the one where he gets a diagnosis though. Every time I ask GP I get a head tilt and a ‘do you WANT him to have a diagnosis?’. I sometimes feel they think I’m lying that my 6 year old is biting chunks out of his arms because he’s so stressed and I can barely string a sentence together because I’m so exhausted.

punky that’s one of the things I was worried about, wondering what a social worker would say. I’m considering approaching SS to see if I was entitled to any respite but it sounds like it might be more hassle than it’s worth!

anniehm Thu 22-Nov-18 07:33:11

(shh) I brought in a very large amount from Canada, for me actually but dd has it when she's struggling (she's adult though) I was really worried coming through customs but had distributed it throughout all our bags, I needed 2 years worth as not sure can go back this coming year.

Knitwit101 Wed 28-Nov-18 08:00:26

You can buy melatonin in supermarkets in the Netherlands. I almost did it this summer then chickened out. I'm a bit nervous about giving it to ds even though I know it's not dangerous.

Polter Wed 28-Nov-18 08:40:14

For most people melatonin is pretty benign, but some autistic people (I'm one of them) there are adverse effects, for me it's horrific nightmares and loss of reality feeling, really scary. Vivid dreams are a common side effect which can be scary for children so worth bearing in mind.

It is generally prescribed at too high a dose, research suggests a therapeutic dose of 0.3mg for adults, but over the counter tablets are often up to 10mg! Lower doses are often more effective than high. I believe there are no dosage standards for children so would suggest doing some research first.

Allfednonedead Wed 28-Nov-18 12:21:17

We give it to our DS(7) who was struggling to get to sleep, on the suggestion of a friend whose niece (based in Chile) takes it routinely.

Not only does it make bedtimes much easier, it has also hugely reduced his anxiety. Occasionally we give him a break, but after a week, the anxiety comes back, so we plan to continue long term.

Here we have to get a referral to third-line CAMHS to get a prescription, so we're waiting for that to go through. In the meantime, I spoke to a clinical psychologist in our local support service, who confirmed it was perfectly reasonable to continue giving it in the meantime.

IntentsAndPorpoises Wed 28-Nov-18 12:36:45

We give imported gummies to our dd (ASD). It was recommended by clinical psychologist who diagnosed her. We haven't got through the GP/Paed yet, it hasn't been long since diagnosis.

She has always had vivid dreams and nightmares, it doesn't seem to have been made worse by it. If we couldn't give her melatonin I'm not sure we'd do. I'd probably have some sort of breakdown I think.

We get 5mg gummies but cut them into quarters, sometimes smaller.

SpringerLink Wed 28-Nov-18 15:53:11

Yes, I was buying it from the US. I then saw a paediatric sleep clinician, explained what I was doing, why and what effect it has. We now get a prescription for Circadin. We are having some trouble getting the GP to repeat the prescription though.

My DS has ASD and sleep initiation problems.

SpringerLink Wed 28-Nov-18 15:55:05

Have just seen this -

You can essentially get an online prescription, it seems!

colditz Wed 28-Nov-18 15:58:22

1 or 2 mg should be a good place to start. At your son's age, my son was on a 2 mg of Kidnaps liquid melatonin, and it did make an immediate difference both to his sleep and his mood the next day. Sleeplessness causes mood problems and interferes with learning. Melatonin may give him some weird dreams, or a headache. It's worth a try.

colditz Wed 28-Nov-18 16:01:23

PS don't tell him it's to make him sleep, as he may go blarting to his teach "MUMMY GIVES ME SLEEPING PILLS!!!" as my son did (luckily his were prescribed!)

tell him it's a vitamin to help him grow.

zzzzz Wed 28-Nov-18 16:09:29

Ds also had vivid dreams difficulties compounded by him not understanding what dreams are. sad. HOWEVER they did teach him to lie down and wait for sleep and now he can “go to bed” without springing out again saying “I can’t sleep” almost instantly. It’s also very different looking after a wakeful child if you know you could use melatonin if you were dying of exhaustion. As a result he’s probably had it about 7 times but sleep is only an issue occasionally now.

It CAN be prescribed without dx and I would suggest they refer you to a sleep clinic if they genuinely don’t want to help and not suggest you buy off the internet shock. I personally think buying drugs that way for minors is irresponsible as you cannot know what is in them. For yourself it’s your own risk. Melatonin is available for sale in pharmacies in Spain over the counter.

If you want the same effect you can try fresh kiwi an hour before bed which should give you drowsy feelings if you avoid blue light afterwards.

IntentsAndPorpoises Wed 28-Nov-18 16:31:11

I'm not buying it down a back alley though.

No way my dd is going to eat kiwi! Also it isn't a drug, it's a hormone.

zzzzz Wed 28-Nov-18 18:12:45

I’ve heard the “it isn’t a drug it’s a hormone” thing before. What’s the difference? I think it’s an excellent solution in some cases but as I said I don’t think purchasing it on line is a good idea and I think a GP suggesting that is shocking.

Polter Wed 28-Nov-18 20:43:33

It's not unusual for doctors, including paediatricians, to recommend known reputable online pharmacies to buy melatonin when CCGs won't allow it to be prescribed. As with many things there's a bit of a postcode lottery with this.

IntentsAndPorpoises Wed 28-Nov-18 21:15:21

It's not ideal, I wish she didn't need them. But we were at crisis point as a family. Her lack of sleep and my lack of sleep, her behaviour--very violent meltdowns exasperated but her tiredness.

We are hoping to get a prescription from referral.

zzzzz Wed 28-Nov-18 22:32:50

It may not be unusual Polter , and I totally understand why people really want melatonin, but it totally undermines the process and frankly opens desperate people and their children to risk that they should not be exposed to.

SpringerLink Wed 28-Nov-18 22:48:32

I agree with @zzzzz, and I’ve been there and made that decision out of desperation. It was not a happy decision, and I wasn’t comfortable with it. I’m really glad we’ve moved over to prescription melatonin.

I think you can use the link above to the Superdrug online doctor to get a prescription for Circadin for an adult anticipating jet-lag of over 7 hours time difference. It’s not set up to get a prescription for a child with ASD.

GimmeGimmeHellYeah Wed 28-Nov-18 22:52:35

I buy for myself online.

whiteknuckleride2 Thu 29-Nov-18 13:56:46

Yes, we bought it from a pharmacy in Italy, in liquid form. We gave it to DD (then 9) in milk, having researched the dosage and giving a low one. She didn't know she was taking it. She has an ASD diagnosis, which for various reasons I won't go into I am not 100% happy with (will be getting second opinion). She used to take 3 hours to go to sleep every night (but no problems with waking up thereafter), always did from being a baby, despite good bedtime routine etc. I am fairly sure she has a delayed sleep phase disorder and was exhibiting her more 'interesting' behaviours because she was chronically tired. She was always better in the school holidays as she could sleep later, but in term time it was awful. The melatonin transformed her. The SENCo just kept saying 'something has changed, I don't know what it is, but it's a very big change'. We didn't tell her precisely because of the safeguarding issues punky mentions upthread. We gave it to DD for a year but have now stopped and it does seem to have reset her clock/allowed her to settle normally as she will now go to sleep at a sensible time. Obviously none of this is a recommendation but it really helped DD (and us!).

IntentsAndPorpoises Thu 29-Nov-18 16:33:09

We were referred to CAMHS by GP after a year of visiting with issues saying we suspected ASD. Ed psych said we needed urgent referral to camhs (dd, 6, was suicidal). CAMHS rejected the referral and sent us to the school cluster for parenting course and good sleep hygiene course.

That was pointless as we were already doing what they recommended. In the meantime my manager at work spoke to me as he thought my husband might be beating me, due to the bruises, broken glasses, scratches.

In the end we borrowed money for a private referral (at an NHS centre). We have just been referred to Paed, but been told due to trust rules we may still have to go through camhs. Which could take 4 years.

4 years. So yes, perhaps I am taking a risk, but the alternative is a greater risk for us at the moment while we wait.

minipie Fri 14-Dec-18 00:27:20

We managed to get it prescribed by a locum neurologist, I have since been told it shouldn’t really have been prescribed as DD’s sleep wasn’t bad enough, or wasn’t the wrong sort of bad, or something.

Anyway the melatonin was transformational, if she woke in the night we gave her 1mg and she was back asleep within 30 minutes rather than the 2 hours previously. Mornings gradually got later. It got us out of that awful vicious cycle of overtiredness and adrenaline leading to ever later bedtimes and earlier wake ups. We hardly use it now (touch wood) but I’m glad I have it.

If the dr hadn’t been willing to prescribe, I think I might well have got some OTC abroad (via a relative) and tried it that way.

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