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SN children

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Original poster

Melatonin in the Night

62 replies

Davros · 22/04/2004 22:34

This follows on from another thread that was in "Chat" but I thought it might get missed if I posted there.
I asked my Paed about giving my son Melatonin if he wakes in the night and wants to roar around like a race horse. He said yes, it would work and a good idea so go ahead and do it.
Silly sod hasn't noticed that we've never used Melatonin so far so I don't have any! Have emailed back to get some pronto!
Wahey, we dont' have a problem at bedtime but sometimes in the wee small hours.

OP posts:

Original poster

Davros · 17/07/2004 02:07

Paed said that you can't give "too much" and there doesn't seem to be any risk of dependence etc. Its a hormone, not a drug, and is classified as a dietary supplement in the USA. I don't think there's any problem ordering it over the internet for delivery to UK. We gave him some this morning (5.20am on a Sunday, oh no!) and it worked immediately. He woke up about 2.5-3 hours later all smiles, no evidence of unusual behaviour etc. I will definitely take some myself if I ever need to but will take the rotten pills given to me on the NHS rather than wasting the precious liquid. I am definitely going to order some of the liquid stuff from the USA, just need to get upstairs to check the website on the bottle, I'll let you know what I find out.

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Chocol8 · 17/07/2004 18:16

Mrs Forgetful - you asked me to update you if I got it prescribed and I did.
It took over an hour to fill the prescription at the local hospital and it was a bit of a nightmare, however I got home and gave my ds a 3mg tablet (he's great at taking tabs), and waited...and waited...and waited. Nope nothing doing, so I upped it to 6mg, again nothing. I called the consultant and she said to up it to 9mg but maybe not go over that, so I did. I gave it at 6.45pm and he was out like a light at 8.45...over an hour earlier than usual with not as much trouble.

I took it on holiday with me to Spain and it worked brilliantly. I am having a nightmare filling the script like Loobie, but there are pharmacies near me who will if I have the right colour prescription form!

I did read on MN that there is a supplier in the UK, and I am gonna try and find out their details. In my opinion, it is a godsend. x

Original poster

Davros · 18/07/2004 09:45

Take it from me, you can't BUY it in the UK. If you got a prescription what's the problem with repeat prescriptions? I've just placed an order with a US website and its accepted it! I'm waiting to see if I get an email saying they can't ship the liquid (its because its got alcohol in it). If you want tablets or capsules you can get them easily on the internet, Ebay, drugstore.com or iHerb.com

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Loobie · 18/07/2004 21:13

we didnt have any probs getting the script filled when we were getting it straight from the paed,i collected it from her office and got it atr the hospital pharmacy-it was just the getting to the hospital so the gp took over prescribing and now i cant get a pharmacy to fill it argh!!
I think it will always have to be taken to get sleep as like someone with an underactive thyroid must take thyroxine to keep the balance so someone who doesnt produce enough melatonin has to take top ups to get sleep,only difference being that the lack of thyroxine can be life threatening or altering.
Melatonin is produced through the retina so a lot of blind people also take melatonin, as well as people with brain deficiancies ie autism etc-so says our paed.

Chocol8 · 20/07/2004 08:18

It's not too bad as I can get it from the hospital, but have to pay £5 for parking to drop and collect the script unless I wait for over an hour like last time. Sadly, I just don't have the time. I got 180 prescribed this time so won't have to go back now for 2 months, so that's good.

Surprisingly I did find a chemist near by - there are only 2 or 3 pharmacies that stock it in my town...but Boots weren't one of them!

mrsforgetful · 31/07/2004 10:49

SUPERDRUG in TROWBRIDGE (wilts) have got it for me from day one....so if you go to your superdrug and they phone this branch then they can get the company details

meea · 13/08/2004 10:39

Hi everyone i am new here and wondered if anyone could give me advice on Melatonin .my sons consultant wanted to prescribe it for my son but the trusts medical director has refused to allow her to prescribe .His descision is purely financial and he actually stated in a letter to us that he was sure it would help Matthew I now don't know what we should try.
I read that some people can get it on prescription from their gp we were told that because it is unlicensed that couldn't happen.
Would appriciate any advice regarding this matter.

Original poster

Davros · 13/08/2004 14:37

You can't get it from a GP here, it has to be prescribed by Paediatrician/consultant. BUT you can get it from the USA on the internet and its quite cheap OR get someone who is going there, if you know anyone, to bring someback, you can buy it over the counter there.

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Chocol8 · 13/08/2004 17:56

Hi Meea, welcome to MN. As Davros says, only a consultant/paediatrician can prescribe it. My ds was prescribed it about 6 weeks ago and it does work well for him, though 9mg still takes 2 hours to kick in, but it is different for each child.

I can't understand why, if he thinks it will help, they won't give it! That's ridiculous! Maybe the short term way to do it is as Davros says and order it over the internet. I wonder if a word to the local newspaper would help? I don't know if this is a good idea, but I know I would be very tempted...especially as you have it in writing!

About a year ago, I had a bit of a problem where my ds' old consultant told me that she would ONLY dx ds with ADHD IF I would put him on Ritalin!!!! I don't know what these people are on! She didn't win - I gave her what for and made sure they changed consultant as she was awful. There must be another way round this or someone above this guy? Someone from MN will be able to help you, I am sure. Good luck.

Original poster

Davros · 14/08/2004 12:58

Actually, an update on our Melatonin use. We have gone through many permutations of giving 5mg before bed.... nothing before bed and 5mg when he wakes, then 10 mg when he wakes and now we have been giving 10mg before bed and it seems to be working (only 2 nights so far but definitely staying asleep ). But baby has been ill and had us up all night last night howling, DS with his melatonin in him slept through it and got us up at 6.15am!

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meea · 21/08/2004 20:44

Thanks for the advice I need to contact my sons consultant to get the results of his mri scan so i will ask her advice.
They always have to make everything so hard.
Not sure if getting the paper involved would make any difference it seems that my son would probably be prescribed it if was actually diagnosed with a specific condition.As things are I am seriously considering buying some off ebay.No idea what dose to give him he is only 2.

mrsforgetful · 22/08/2004 10:49

Apparently 1mg is supposed to be sufficient.....but we were started on 2.5mg ....mine are alot older than your son...maybe someone here has a similarly aged child who can better advise.

main points i have learnt using it is to add it to as small a drink as you can get away with- that way it is absorbed into their body quickly as a full dose...too diluted or drank slowly instead of in a single drink means that the dose gets diluted and is less effective

Also when i got mine off ebay i had to buy tablets which need crushing and dissolving before giving...obviously an older child can swallow tabs....but i still think the best method is to have it in a drink- DAVROS has got it already in liquid form direct from the US- but i gave up looking on ebay for that!!!

the form we get on prescription is capsules full of powder which dissolves well- so i am happy with that

keep us informed- it really can make a massive difference- and when i look back to my son's baby years and even at age 2....we were prescriped a sedative used for pre-ops...in a massive dose....to get sleep.....and then when that was stopped- we used phenergan- in such high ammounts that really i cringe now- but any desparate parent will know where i am coming from- so to FINALY get MELATONIN and be able to induce sleep in as near a natural way as possible is a major relief for the guilt i felt for years. And whereas i always felt that sedating with phenergan was for MY BENEFIT_ SO I GOT SLEEP....i genuinely feel and notice that MELATONIN gains sleep for us all- and i cannot put a price on that!!!

meea · 22/08/2004 12:46

Thanks my son has also been prescribed 2 different sedatives in very large doses which didn't really help.I will have a look around and see if i can find some liquid and have a word with his consultant.This really does semm like it could be the answer for him.I am sure that he would make so much more progress if he got some decent sleep.

Original poster

Davros · 22/08/2004 13:50

The only liquid melatonin I could get on the internet is too weak a solution and therefore needs a whole dropper per mg, e.g. 5mg needs 5 droppers and so is too much to put in a small amount of drink. I am going to investigate getting the one I had originally which was 2.5mg per dropper. Will report back.

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mrsforgetful · 29/08/2004 21:03

this last week i've had great sucess by dissolving the powder in 2 tsp of whatever they are having for their last drink of the day- and they are ready to crash after 30mins...this means i am now able to very accurately time bedtime- as before i was giving it in a normal drink and they were sipping it- or else i gave it too early and then i'd get disstracted and 'forget' to put them to bed and they'd 'perk up' by the time i remembered....so now i get to the point when i am about to put them to bed and i give them it then- knowing that by the time i've got them in bed (you know....found a set of jamas etc....given up on a pair....can't remember the last time that i had exact pairs of jamas ready in their drawers!!!)...then they are ready to sleep....also finding less need to 'top up' the dose....so maybe i've cracked it!!!

meea · 31/08/2004 18:29

Glad that you seem to have cracked it .Good to know that some one is getting some sleep.
We are still not getting any where I didn't even get to speak to his consultant just the secretary.I mentioned to her that we were considering self medicating but not even that has made her contact us .The secretary said that what ever we bought should come with dosage instructions .The stuff that i found on the internet says not for under 12's so I doubt that it will give instructions on how much to give a 2 year old.

JJ · 27/10/2004 18:36

Just reviving this thread to say thanks. I was looking on mn for info on melatonin dosages for our trip from the US to the UK last night which usually results in horrendous jetlag and wanted to try melatonin but couldn't find anything on dosages by googling around. This info was great -- esp MrsF. Gave my youngest 1mg and he slept.

Anyway, I know it's not special needs, but it helped me out and wanted to say how much I appreciated the info.

mrsforgetful · 28/10/2004 01:04

thats lovely!

Melatonin has become like a 'personal crusade' to me....it is such a 'simple' product.....and has so many uses.

i hope you had a great holiday!

you are very welcome in the Special Needs area....i rarely venture out of here!!!!

weesagirl · 11/10/2005 08:42

What age can you start giving melatonin?

LadyFioOfTipton · 11/10/2005 09:23

my daughter is prescribed 3ml/mg by our paed and takes 4ml/mg now as 3mg she was still waking up

apparently i can give up to 6mg/ml to get her to go off

is a god send to us HTH

LadyFioOfTipton · 11/10/2005 09:25

not sure what age, whart age is your ds/dd? weesdaler

PeachyClairPumpkinPie · 11/10/2005 14:59

We've been refused melatonin. DS doesn't get sleep and runs around screeching for hours between 6 and 11 0r 12. I did ask but was told he didn't need it, that it was just bad bed habits but it isn't! The other two are OK and settled by 8, so it can't be totally my parenting like he said, or can it?

LadyFioOfTipton · 11/10/2005 15:10

it has been scientifically proven that children with learning disabilities dont produce enough melatonin. Alot of paeds wont prescribe, we are lucky as ours does. She even said to us, it s ridiculous as you can buy it off ebay anyway Have you thought about buying it?

PeachyClairPumpkinPie · 11/10/2005 18:09

Yes we have thought about buying it but we were concerned about getting the dosage right- we weren't sure what is appropriate for a small five year old?

LadyFioOfTipton · 11/10/2005 18:10

3ml of 1mg

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