MELATONIN

[cmuir]

Hi

 

I've always been against giving medication for my son. Just felt that I didn't want to be giving him something which could actually be quite harmful years down the line. In addition, he's only 5.

 

Behaviour and sleep have always been two massive problems. R is very unpredictable and he's currently being assessed for a mood disorder. He's also been assessed for ADHD, although results conclude that his levels of concentration, activity levels, etc are outwith the normal range, they're not quite elevated enough to give a definite ADHD diagnosis. R's consultant had suggested melatonin and risperidrone (?) to help. At the time, I didn't know much about this and said 'no'. However, we've recently moved house and quite honestly I'm exhausted and can't take much more. Also feel like R is beginning to suffer from lack of sleep and would actually benefit from meducation. Lately R has being crying himself to sleep and begging me to help him sleep - soul-destroying watching him! I feel like I've given in and ended up going back to R's consultant (CAMHS have been downright awkward and have refused medication) for melatonin.

 

Last night was the first time I've given it to him and I feel dreadful. Can't explain exactly how I feel and why, but I feel really, really guilty. I've always said I'll be completely honest with my son about his AS (and whatever else he has). And I was ... I showed him his medication/melatonin and explained what it was - that it would help him get to sleep. The wee soul took a 3mg tablet quite happily. Took him 55 minutes to drop off. I felt like crying.

 

Anyone else feel like this?

 

Caroline.

[brooke]

<'> <'> I recently started my son on melatonin as he wasnt going to bed till 11pm everynight. I also didnt want to give him this but his dr explained that its not addicitve or anything like that its just some children with asd dont produce enough of it in the brain to get them to sleep. Please dont feel bad he would be suffering a lot more without his sleep. Thats why i give it to my son, he needs his sleep, its just he cant get off to sleep on his own.

Brooke

[Pippin]

Absolutely. If a diabetic child doesnt produce enough insulin no-one would feel guilty about giving to him, and there is plenty of evidence of children with autism sometimes producing insufficient melatonin themselves. I also felt dreadful the first time I gave it to P (he fell asleep on the lounge floor an hour later) but his behaviour is SO much better when he gets enough sleep. Melatonin has also been shown to have no side effects....unlike alsmost everything else we put into our bodies!!

[Tally]

Medication for children is a controversial area, but you just have to weigh up the costs and benefits. You have seen the results if not giving the medication, and decided that it would be better to give it. It looks like the right decision to me.

[Bagpuss]

Caroline <'> <'> <'>

[Suze]

I was always of the belief that melatonin was a natural substance already found in the body.It naturally triggers sleep.During adolescence these natural levels in the body can become disrupted, which my doc told me is the reason teenagers sleep the way they do .But your post has got me thinking if I,m correct.It was my doc who told me this.Either way giving your child any medicine isn,t easy you just have to way up the pro,s and cons.

[Suze]

found this site........ www.melatonin-info.co.uk

 

it ,s well worth a look, might make you feel a bit better <'> , suzex

[krystaltps]

I had reserves about giving C melatonin too, but it had to be done - he was up til 2-3am most nights. This was back in February and I can honestly say now - it's been the best thing I have ever done for him. He is asleep at 9 - 9.30 on school nights, and he is like a different child. We no longer have the extremely angry 8-year-old and he is so much happier as well. His school are haling it as a "miracle medicine"! Life is livable again.

I have no issues regarding giving C medication now, I think so long as you do it responsibly. C was on 4mg each night, but I managed to wean him down to 2mg after the Easter holidays - we don't give it to him at weekends or during holidays to prevent his body becoming used to it. We've now begun our summer holidays up here (Scotland) and already he is out of routine (1am last night) - I think I may give him it once a week during the hols just to keep him from turning night into day.

Please don't feel guilty, you're simply giving his body what it doesn't have and allowing him to get some proper sleep. He will feel the benefit of it soon.

[Lynden]

I felt similar when I gave it to Logan. I was knackered and felt like I was giving it to him so I could sleep - when in reality he really needed the rest too. The reason I okayed it was because it is a natural substance and you aren't actually sedating them.

 

Unforutnately for us it didn't work so we had to stop using it but if it works its fantastic.

 

Lynne x

[shamu]

Oh Caroline <'> Don't feel bad at all. You're giving him the medication for HIS needs so it's not selfish or cruel. As previous posters have said, it's a natural substance that he may not be producing enough of to get him to sleep. And it isn't that long lasting so it just helps him to get to sleep then his body stays asleep iyswim.

I know that when/if the point comes that we're considering it for DS I'll give it without hesitation. The bigger problem is going to be getting him to take the stuff

Shamu

[allsetuk]

my doctor has given me melatonin for my five year old and i have to say its still sat here in the packet, i feel guilty medicating him too, but he seems totally wired when its bed time ....and hes getting very anxious about going to bed and seems impossible to wind down.he needs constant hugging through the night and seems to be very aware that things are waking him up or he just isnt going into a deep enough sleep...im geting exhausted..ill give it a go

[jlp]

It's very difficult emotionally I think when you first start - I felt similar when G started his and he fell asleep within 5 minutes on the sofa (unheard of!). But without it we are all exhausted - G can't be left alone so I'd be stuck upstairs for hours and like your son sometimes he got upset because he just couldn't get to sleep. I think G was about 5 when we started too - before then he had severe eczema and was on vallergan for the itching at night (he'd rip himself to bits) so this masked the problem.

 

I felt very sneaky and even worse because it was such a relief when he slept without all the fuss and crying and up and down - so I felt guilty at being relieved.

 

G is still on 2 ml, he could probably do with a higher dose these days as bedtime is creeping up again but I'm hanging off on this low dose as long as possible (I'm terrified that by the time he's older we'll have no-where to go dosage wise)

 

Enjoy the respite - ours was partly given to us for this reason as G is himself doesn't seem too badly affected by a lack of sleep but the hospital said we did need some time in the evenings to ourself.

[allsetuk]

how do you all sneak it into their food ? no way will my son take the tablets, he cannot stand the sight of medicine under any circumstance...iam feelign a bit stressed out and cant fight the tears , i feel awful totally lost it last night with my son last night the late nights are getting later and im a single parent , havent had a breaks from him for 18 months and im wrecked as ive just finished my degree .....my son has gone back into this totally obsessed with me behaviour, wont leave me alone for a second...and he breaks up from school today im dreading the holidays ....how did anyone here set up respite as since i had my sons diagnosis ive been left to fathom everything out myself,

[Pippin]

I was worried about how to get P to take it but, luckily, it has no taste whatsoever as a tablet. I used to crush it up between 2 spoons and shove it in a fromage frais. He's now happy to take the tablet as he's older. We've been very lucky in that he responds brilliantly to just 1mg.

[aro]

Our melatonin is a fine powder in a capsule. I used to mix it in a spoonful of yoghurt but now I put a slash of juice in a cup and stir the powder in. DD takes it without problem

 

Hope that helps,

 

A x

[ksasnic]

We get it in liquid form and it works a dream.. He now even asks for it.. lol

 

I told the consultant he wouldn't take pills so that was out and he told me of the liquid version funnily enough called KidNaps lol so he takes 3ml of a night - he has to hold it in his mouth for 3 mins and then it works within 15mins.. Bliss otherwise he can just swallow it down and it will work in an hour.. eitherway what brilliant stuff.. I have no qualms now of him taking it as he needs it.. night times used to be spent with me up and down, stressed out even shouting at him to - for goodness sake GO TO BED.. which of course was what he was trying to do.. then he would wake up late and grumpy and we would be exhausted and then abused.. now he wakes up bright and breezy and its lovely..

 

Good luck and try not to feel guilty - easier said than done I know but you are helping him out big time.. he wants to sleep and you are helping him naturally ..

[jlp]

We have a capsules which I open to release the powder. This goes into water and seems to be tasteless as my fussy ds hasn't complained

[allsetuk]

OK followed all your advice and put one capsule into a drink, the instructions say 4 capsules a night which would be 8g???? so ive given him one and half tonight to see how it goes, gave them to him at 6 and he went to sleep at 7.30 this feels great as normally its 9.30 /ten and takes forever with me losing my temper as he is glued to me physically and im tired and then its an endless cycle of guilt and remorse cos i shouted at him to get to bed and hes upset cos he cant.... and he is in tears cos i walked off cos i had had enough of sitting with him after 2.5 hours.... feel better tonight , thanks for the information re liquid form

[Flora]

Melatonin isn't a drug, it's a food supplement easily bought over the counter in the US... so you mustn't feel guilty or bad about it. My son's been on melatonin for about 18 months and we couldn't have coped without it the way he was going. It's no different from taking any supplement, if you are anaemic you take iron, melatonin is much the same... in fact it's far more dangerous to overdose on iron supplements than it is to overdose on melatonin.

 

Flora

[Elaine]

Hi

 

Just wanted to back up what others have said. Melatonin isn't a medicine, it's a supplement and can be bought without a prescription (eg from Biovea). I've been using it off and on with my two boys for 4 years and have found it a great help. They usually need it during the light Summer months. It helps them get off to sleep really quickly (usually within half an hour) and has no side effects (unlike sleep deprivation). It is also completely non-addictive.

 

Elaine

[cmuir]

Thanks everyone for your advice/support.

 

Finding so far (3rd night), it's taking an hour to have an effect. Have to say, it's so nice to get a bit of time to myself to recharge my batteries. Robert does seem less zombified in the morning (same goes for me too!).

 

Caroline.

[allsetuk]

2nd night here and he was asleep by 7 , wonderful to have a bit of breathing space for myself and nice for him to have a more solid night sleep, he was a lot less restless last night.

cheers everyone

[lisa]

My two have been taking it for about 18 months and it makes a huge difference. I found it quite difficult getting to sleep too, probably years of the kids being unsettled broke my sleep routine, so when we were last in USA I bought myself some Melatonin in the health food shop. It works brilliant, I highly recommend it!!!!

[allsetuk]

ok first night was brill, 2nd night awful he woke up at 2 wide awake and wanted to get up ....3rd night i darent send to bed at 7 incase he wakes at 2 again , so went later around 8 and stirred loads , the melatonin seems to wear out around 1 to 2am, i guess this is why the bottle says take 4 capsules but thats 4 x 2g which seems like loads compared to what your children take ..any advice lol!!!

[jlp]

ok first night was brill, 2nd night awful he woke up at 2 wide awake and wanted to get up ....3rd night i darent send to bed at 7 incase he wakes at 2 again , so went later around 8 and stirred loads , the melatonin seems to wear out around 1 to 2am, i guess this is why the bottle says take 4 capsules but thats 4 x 2g which seems like loads compared to what your children take ..any advice lol!!!

 

I haven't personally had it for my son but apparently you can get slow release melatonin which presumably would have a longer lasting effect.

 

Or if he's been prescribed 4 x 2mg you could give him the 2 you've been giving him at the usual time and 1 or 2 x 2mg at 2 when he wakes. Maybe experiment between that and giving him the whole 4 x 2mg dose at once?

 

Good luck - waking bright and eager to go at 2am is not fun! My little one was prone to this for a while.

[allsetuk]

lol ..mines five and he has never slept solid, you cant touch his toes when he is asleep and even a light switch can make him jump so much it causes tears! ...its more me getting up and functioning enough to stir melatonin poweder into milk at 2am lol !! oh well i will pursue! im seeing doc friday so ill ask about slow release

[aro]

This is the draw back with melatonin It's great at getting kids to sleep but doesn't help the early wakers! (my dd was awake from 1:30am this morning! now been asleep on the sofa for the last hour ) Some kids get hyper on it, I've read that increasing the dose doesn't help, better to have a break (though if you've just started it that wont help) and we tried slow release, 'fraid it did nothing for dd

 

Good luck, you might find a dose that works

 

A x

[allsetuk]

hello thanks for answering ..yes this is a pattern , he falls asleep quick but now is up every night at one or two am, its like the concentration of sleep he gets before this time is tricking his body into waking up and thinking its time to get up ..i think we were better without it , it meant he didnt get to sleep till 9.30 but at least consistant night sleep ...hes up at 5.45 too ....im shattered....

[LizK]

hello thanks for answering ..yes this is a pattern , he falls asleep quick but now is up every night at one or two am, its like the concentration of sleep he gets before this time is tricking his body into waking up and thinking its time to get up ..i think we were better without it , it meant he didnt get to sleep till 9.30 but at least consistant night sleep ...hes up at 5.45 too ....im shattered....

 

My son is five and we have been prescribed between 3-9mg at night though obviously to start on lower dose. We found too something similar to you that he was waking earlier almost like he was getting into such a deep sleep he didn't need to do it for so long. Paed said we could give a second dose in the night if he woke up but I actually found by reducing his bedtime dose by half (1.5mg) he still settled down fairly quickly but woke up later

 

Lx

[allsetuk]

hes been up since 4 today and didnt get to sleep till nearly ten on 6g of melatonin , i cant cope with it ..im totally exhausted, he is on school holidays at moment and we are at breaking point ....i applied to the family fund weeks ago to try get help this summer to amuse him ..........as if we are at home he literally wants to play on the computer from morning to night, nothing else interestd him...and we are in a really small house with no garden so there is no escape .....feeling a bit at the end of my tether.

[aro]

hes been up since 4 today and didnt get to sleep till nearly ten on 6g of melatonin , i cant cope with it ..im totally exhausted, he is on school holidays at moment and we are at breaking point ....i applied to the family fund weeks ago to try get help this summer to amuse him ..........as if we are at home he literally wants to play on the computer from morning to night, nothing else interestd him...and we are in a really small house with no garden so there is no escape .....feeling a bit at the end of my tether.

 

 

You have my sympathy. DD had melatonin (even though it's a weekend) woke at 1am!!!!! Didn't go back to sleep so guess where she is now....yep asleep on the sofa since 10.30 am! I'm knackered and DH has a lack of patience without sleep!

 

 

A x

[allsetuk]

the days gone from bad to worse, hes bouncing off the walls , arguing non stop, fighting clawing headbutting and walloping me ...constantly jumping on me and im so tired i cant deal with it ...feeling terrible cos i had to drag him to his room and leave him there to calm for a few as he was going totally crazy...im getting head butted if i say anything he disagrees with, now he is collapsed on the sofa catching up on the z's gosh i really hate days like this and ive no money to take us anywhere or petrol ;( im begiining to wonder if he is better without the melatonin

[Moonshine]

Hi All

 

My son is 6 with dx of ASD & ADHD and last October was prescribed Vallergan Forte to help him sleep. We don't have a major problem getting him to sleep but he would wake numerous times a night and quite often with night terrors which included hallucinations and being sick everywhere. The Vallergan has been a god send as it keeps him asleep all night. He goes to bed at 7pm and gets up between 5.30am and 6.30am, whereas before he would still go to bed at 7pm but be up all through the night and up for good at about 4am.

 

He also now takes Risperidone in the morning to control his aggression which had got totally out of control - he spent most of his days at school restrained! My husband and I have always been totally against giving him meds but the difference both of these have made to his life has been amazing and we have no regrets at all as he is a much happier little boy - and the added bonus is that we get more sleep too!

 

Take care everyone.

[allsetuk]

thank you for the information ,

[ASue67]

I use melatonin for M to help with his sleeping. Initially I bought it online from Biovea but I now get it on prescription. Have to get it in liquid form and I put it in M's drink!!!!! Still have up and down nights though and he wakes up earlier as well.

I also take Melatonin (slow release) cos I struggle with sleeping due to my M.E. So I know what it is like taking it as well!!!

[flipper]

I bought some from Biovea in liquid form, as my eldest (age 10) is NT but has always been a dreadful sleeper - frequently still up at midnight.

 

Last night I gave it to her and her sister (8, NT - would probably be a good sleeper if her sister didn't keep her awake most nights!) as a trial. I only gave 1mg each (I dropper) onto some sorbet.

8 year old was asleep within 30 minutes, 10 year old (given a little later) was asleep within an hour. So both were sound asleep by 9.30 - totally unheard of.

 

My only concern is that I hadn't noticed on the bottle that it says "not for children under 12", which didn't go down well when noticed...

 

However, both girls woke well, and seemed happy this morning after a good night's sleep.

I don't think it's something we'll use often, but perhaps useful to keep in reserve.

 

Oddly, C (4, ASD) has no trouble sleeping - and will play happilly in his bedroom until told to get into bed, where-upon lights out and not a peep from him all night.

 

Phil