Tell me your experiences with Melatonin, please...

[lou031205]

OK, so DD was prescribed Melatonin last night after night wakings every night bar 4 for the last couple of months, and being really hard to settle at night. Seemed very stimulated by getting dressed for bed after her bath, and couldn't wind down at all.

She has been prescribed Melatonin syrup 2mg.

So, last night, 6.10pm 2mg given. Dad took her up to bed at 6.40 and she went out like a light, didn't even want a story. We weren't convinced it was the Melatonin, because it had only been 30 minutes. She woke at 22.45, because her sister was crying, but settled straight back down when her musical star was put on.

Today she has been frankly wild, spinning around and around with things like a toy shopping trolley in her hands, swinging them in the air, running backwards and forwards up and down the hall, trying to be a rolling pin hopping like a bunny. The homestart volunteer played non-stop with her for 2.5 hours this afternoon and she didn't sit down once. Also huge meltdowns, throwing things (like the toy shopping trolley), etc, because Grandad needed to say bye on the phone, and she didn't want him to go.

So, I thought tonight, we would probably be disappointed by the Melatonin, because she was so high it would be a tall order to work. 6pm, 2mg Melatonin given. Taken up for her bath. By 6.35 she was crying hysterically, saying she was tired. She let me dress her for bed without jumping up and down like a coiled spring, got straight into bed (would normally deliberately fall out and refuse to get back in several times) and was super calm through her routine. Out like a light. I can't remember the last time we were able to put her in bed and not deal with her for ages and ages up and down the stairs.

So I thought I'd ask for your experiences, because it has freaked me out a little. I know it is meant to be natural, but it feels like I have given her a chemical cosh! Don't get me wrong, 31 weeks pregnant, all of us shattered, we are truly grateful. But at the same time...

Incidentally, while you are here, did any of you have difficulty getting follow on prescriptions from your GP? Our hospital will only give a 2 week supply, then GP to continue, but as it is unlicenced, I wondered if they would be less happy? The consultant says he will write to the surgery.

I don't have the sleep problem luckily with DS, but me and DH take melatonin ourselves, when we get temporary insomnia. It helps you get off to sleep and then stay asleep. It's also good for jet lag - if anything I have always woken up feeling fresher and raring to go when I do take it, so I don't think it is a chemical cosh at all and it is natural because it's the hormone your brain produces when it gets dark (hence it is useful when your brain is all confused due to different time zones). Perhaps the hyperness is just half term and not melatonin related? I get it from the US, or ask others to get it when they go to the US as over there it's sold in every high street chemist alongside the vitamins. My theory is that if the US has approved it with no problems, with their litigious society, it must be ok. It's also easy to get it on the internet now and if you use something reputable like Duane Reade online, it should be ok. I think you have found the right product for DD and it sounds like you need it right now. Good luck tonight!

im in process of needing to get this for ds he hasnt slept for months at night but my gp wont prescribe it at all so i have to wait to see pediatrician to see if she will give it to ds but i have heard many people praise it

its not a chemical melotonin is what we have naturally in our bodies to regulate our body clocks to time to sleep eat and wake chilsdren with ASD are suspected of lacking melotonin so this is given to help stimulate there body clock

im hoping ds will be given it as really ant him to sleep before starting school as his terrible with no sleep i guess if pediatrician writes to doctor then doctor will repeat it if not contact whoever prescribed it to you enjoy the peace sounds grreat

there is an offical UK melatonin site, which gives lots of info plus dosages for children. They recommend websites where you can buy it on there.

ds been on a month now he gets tired and does sleep but still wakes up 3 to 4 times a night but goes back back soon after and he carnt remember the next morning

Thank you all for the reassurance. I just thought that it probably would kindof work, and we would notice a small improvement after an hour or so of trauma, so have been shocked at the effect on DD.

bubblagirl, I literally said to consultant "the last time we were here (6 weeks ago) we mentioned how bad her sleep was. I know you talked about sensory stuff which we will ask the OT, but wondered if you had any other suggestions, because in the last 6 weeks we have had 4 nights sleeping through, and the rest have been up 1.5-3 hours a night."

He just replied "Have we talked about Melatonin?" as he reached for his prescription pad.

melatonin doesnt seem work for ds (angelman syndrome). We tried slow release granules first then liquid (kidnaps). There are quite a few different brands and I know lots of families swear by it. With Angelman kids it seems to work better if given when they wake in the midde of the night rather than before bed. I have heard of it being combined with Clonidine as well-the clonidine combats the hyperactivity. We now get it on repeat prescription but we did have a few problems convincing the GP receptioist that it had been prescribed for Ds in the first place. Glad it seems to be working for you.

Ds2 was prescribed melatonin because the Paed thought that a lot of his more hyper behaviour was due to lack of sleep.

We were advised to start off with half a pill/tablet first and increase it to one whole pill if that wasn't enough. It worked fairly quickly and on the nights that it worked ds2 was usually asleep 20-25 mins later.

One thing I've noticed with ds2 though is that if he has too much sleep he becomes just as hyper as when he hasn't had enough. I haven't found a solution for this though so don't know what to advise.

For the first few prescriptions we got the melatonin from the hospital pharmacy. The Paed was the one who suggested that the GP could issue us with further prescriptions for it. We were CC'ed in on the letters between the Paed and the GP and it was generally straightforward. The Paed sent a letter asking the GP to provide the prescriptions. The GP wrote back to the Paed asking for more information. The Paed supplied it and now we can get the melatonin on repeat prescription when needed.

Well, she woke in the night last night and took ages to go back down. Can't have it all...

So can only a Consultant prescribe it? We are thinking of asking ours about it as DS often wakes up to ten times a night due to his startle seizures then just can't get back to sleep and is wide awake by 5.30am. I was going to see the GP but won't bother if it needs to come from above!

DD has been taking melatonin for over a year now. It still works like a charm every time for getting her off to sleep. She is usually gone within half an hour. SHe still wakes during the night and we find a second dose seems to have no effect. We have not noticed any side effects. It is a natural hormone which we all produce and studies have been done that show somw kids don't produce enough so for these kids its invaluable. I really don't know what we'd do without it. We still have her up in the night from time and so far have resisted anything stronger. With the melatonin we can cope - for now anyway. Best of luck

Hi Fatzak, melatonin is unlicenced so is Consultant only, although the GP can continue it.