give it till 2.30 or 3 no later ds wakes up at 4.30 sometimes too its a hard one as you want them to bed at reasonable time and as it gets them off and doesn't keep them asleep its a difficult one we do have at least 2 bad ones a week but more good than bad now

just set routine to give melatonin at 8.30 and aim for 9pm bed tonight we have to tweak routine every now and then but it does go back to normal again

Ds is sleeping and I cant wake him up. He fell asleep at 8.45pm last night (yeah) but woke up at 4.30am. Now he's been asleep for 45 mins and its impossible to wake him up. He must be so tired but I dont want to mess his routine up.

4 mths now as is ay if you mess with it too much give to early or too late it doesn't work as well and i gave it earlier as he was being hard work was hot and bothered and i should have learnt my lesson from last time lol ive done it all properly tonight and he is now asleep me and dp are off out for meal so my mum hopefully will have a settled little boy to watch

good luck for tonight hope it works as well x

Oh dear bubbla, How long have you been using it?

thank you stary think i need big hug ds woke at 8.30 pm was still up at 2am bad bad night last night lol glad so far so good for you

enjoy your evenings i love being able to pick up a book and read again or put a film on and watch it all the way through lol

I dont want to be too previous as this is only the second night and this is quite un like me but can I give you a big kiss bubbla? Again we have given the melatonin early and Ds fell asleep just past 9. If you hadnt of said, I would still be giving the melatonin at 9.30 and he would be falling asleep at 11pm onwards. Literally in for the first time ever I have an evening. Especially as DS2 has also fallen asleep. I barely know what to do with myself

just make the point really cant seem to settle off to sleep and being up till that time is not good for either of you

as soon as paed heard he cant settle she didnt hesitate in writing out script for him and has repeated them since too

It will be one of the first things I'll mention when I go see him Monday! I shall cry if I have to!! I might even stamp my feet

make sure you get in there first and say we want a prescription for melatonin if you can i have several people who use it for the children for the same reason we need it were all struggling were all sleep deprived and ds behaviour is worse without sleep and you cannot cope when both so tired

this paed should be happier to do so its not normal to have so little sleep and i noticed ds was "more" autistic when tired iykwim when he has slept he can hardly be noticed as being different when tired its plain for everyone to see

his much happier now he always seemed so troubled

Thanks for your replies, sorry I didn't reply earlier, I was having a much needed nap whilst I could get the chance

we're seeing a different paed on Monday, so hopefully this one will be a little more sympathetic. The other one was very nice, but just seemed to go on and on about how fascinating Tom was, and what an interesting character he was etc. I found it quite strange tbh. He's referred us to a paed nearer home though, so hopefully this one will be able to actually offer us some help rather than commenting on how fascinating my ds is...

you can certainly tell your paed that you know lots of other parents whose paed has prescribed it without a problem

It was my pead who persuaded me to use it. She was trying to get us to use it way back before DS2 was born but I thought I could manage without it. Then DS1 started have huge meltdowns in the middle of the night that lasted ages. She was happy to prescribe it and even told us that you can but it on the internet. I guess all peads are different. Is your pead otherwise sympathetic? If not can you request to see someone else?

that's terrible, othermother, the paed sounds very unsympathetic!

othermother i mentioned that ds tolerance to the day was affected his sensitivities much more apparent and its not normal to have so little sleep when its clearly affecting the child

also said how sleep deprived i was and was struggling to deal with the meltdowns induced from being so tired

also that he wants to sleep but is unable to doze off and would benefit so much more from melatonin and a good nights sleep

could you see another paed as most don't come out with that comment and know how important sleep is to a child with autism

How do you convince the paed that your child needs melatonin?

I asked for some for my ds (5) who has never been a good sleeper, stopped naps very early on, and fails to get to sleep before about 1.30am most nights...even on school nights.

The paed just told me that some kids don't need much sleep, but I'm sure it can't be good for him having so little sleep. It's certainly not good for me and my husband!

What can I say to convince him that he really does need some help with sleeping?

i find if ds did nap and it was before 2 then we could still aim for 8pm bed and be fine after 3 then no way all gone wrong

Ds has just fallen asleep while my back was turned. His sleeping pattern is so odd. Unless he didnt sleep until 7am- Its very possible DP guessed what time it was instead of looking-(DP sleeps in with DS).

oh no well at least you had only one to deal with then hope you can get more rest and that the melatonin can start setting that routine for you with ds hopefully his behaviour will be noticeably different after sleep i was surprised with ds what a change it made

Not quite refreshed have 10week old baby who is really bad at nights at the moment- they are tag teaming me .

fantastic bet you feel all refreshed

we did find no nap to be given other wise doesn't work the same also you can drop it down to 8 if no nap given also really glad he was down earlier its trial and error and seeing what's needed to get the best

good luck for today given few days you'll feel like new person with all the sleep you'll be getting lol

well I took your advice and gave the melatonin earlier- 8.30pm and result he fell asleep at 9.15pm and slept til just before 7am. However, DS hadnt slept all day so he was getting tired at that time anyway. I will try and keep him awake today and see if we can do the same.

Here's our experience. We've been using it for over 18 months. Tried a variety of different bed times over the months but 9.30 is our current routine. DD sleeps a lot less than a typical 3 yr old (typical for angelmans syndrome). Also, giving a second dose in the middle of the night doesn't work for her. I've come across others who've found this too. An earlier bedtime just means she wakes earlier.

i said it says give 30 min before i meant on ifo sheet paed gave me recommends to set a bedtime and give 30 min before and tweak if you need to going earlier if needed 8pm was guideline for sleep for child of 4 so 7.30 give melatonin

it says give child melatonin 30 mins before desired bedtime so if you aim for 8 then 7.30

i would aim for earlier bedtimes as you can give again in night if needed after all they wil eventually need to start having earlier bed times as still so small and body will need the extra energy you dont need to wait till there tired melatonin makes them tired

stary i found the later we gave it to ds it didnt work he was able to over ride it with being over tired give at 7.30 see how you go may be asleep for 8-9 if given earlier i find the effectiveness works faster not when over tired

my ds is 4 big for age has 3mg and needs it around 7 oclock before he gets too over worked and takes 15 mins and his lagging or asleep

on hot bothered days we give half 6 as is hot tired and at risk of becoming over tired is asleep for 7

dinosaur, I still think 9pm is late to be giving it, tbh. Would you by choice have a 9.30 bed time for an almost 5 year old? I would think you would be better giving it earlier, then giving another dose if he wakes in the night.

Staryeyed, could he be overtired? For DD if we wait that late she is vastly overstimulated, so the melatonin 'message' has lots to compete with.

Maybe we are getting the dose wrong. DS is 4 and taking 3mg but he is quite a big boy. We gave it yesterday at 9.30 as normal and he didn't fall asleep until after 12 which means its not really working is it?

Well last night was crap, gave him some melatonin at 9 p.m. and he then woke up at 2 a.m. and was awake until 5.30 a.m.

So I think we won't bother with it pre-bed, we will save it for wake-ups between about midnight and 3.30 a.m.

we tried it bu did not seem make one jt of differnace to ds hes just human dynmo runs on 3-4 hrs sleep

i agree the melatonin is there so you can dictate bedtime if you want them dowm at 8 give at 7.30 they will be really tired and wanting to sleep you dont wait for them to get tired you give to make them tired

so you can have them asleep at reasonable time ds would never be tired he'd be up all night without it i give it to him and within half an hour his sleepy or already asleep ds is on 3ml 3mg

we tried melatonin and sadly seemed mad no differance to ds seems he is just nocturnal mind not that he sleeps in day either

have to say melatonin for my DS was a godsend. maybe you need to play with the dose a little - it can be tricky to get right. ask the paed who prescribed to advise.

Staryeyed, the melatonin is meant to help them feel tired. DD rarely seems tired before the melatonin, but is begging for bed within 15-20 minutes of taking it. She has 2mg(2mls).

how long does the melatonin take to work as sometimes ds doesn't seem so tired within half hour of melatonin he is desperate to sleep maybe cutting it down bit by bit will help

don't envy the no sleep any more we were surviving on 3 hrs a night and i was nearly dead on my feet was such a horrid time ds does need his sleep and functions better so thank lordy for melatonin lol

I wish we could get Ds in bed for 8pm but he is not tired by 8pm even if he hasnt had a nap. Some days we have tried to keep him awake and then he has started to go to sleep at 6.30/7pm which is disasterous and no matter how hard we try we can not keep him awake once he goes for his day time nap. He has been known to sleep standing up even walking in the supermarket. Our plan is to set bedtimes gradually earlier everyday but he is so all over the place.

5inthebed- I take it they have to swallow the capsules whole?

thanks bubblagirl

he genuinely doesn't seem to need much sleep! as I do!

start how you feel comfortable and then go earlier his waking will be earlier in night then melatonin wont make him sleep so deep so late leaving him not wanting to get up he is only nearly 5 after all lol he goes to bed later than me

my ds is just 4 and 8 o'clock was ideal but he was still angry next day so we had to trial and error we found anything from 5.30 on bad days to 7 pm on good days worked wonders with his behaviour and waking was less and much earlier if he does wake at 4 its normally on the 5.45 bed so its expected

usual routine is 6-30 and that leaves 11-12 wake and 5 am get up works fine as i say i love time to myself of an evening other wise i feel ive had no breathing space from him

im better for it and so is he , his sensitivities have lessoned he has more energy his jokey not moody now just works for us

do what works for you i was more concerned with school if he sleeps at 10 then up at 4 its not a lot of sleep to handle a day at school so wanted his body to be more rested and it really has worked for us

Ooh I'm confused now.

I wonder if we started at about say 9.45 p.m. and gradually made it earlier would that work?

I find the idea of him going to sleep at 8 p.m. quite odd, God knows why as his brothers did at the same age!

I can't really help with this, because DS2 is on the slow release ones (took forever to get him to take a tablet), but it does take about 30 minutes to take effect if that helps?

stary i think the late naps could affect how he sleeps anyway i find ds needs that early bed as then the night wake isnt too late and can be set back off the later ds goes to bed the more he wakes in the night strange but true the earlier he goes we have 1 wake up

and i was told to stop naps and start with 8 pm bed maybe worth a try for you as it wont regulate body clock unless your trying to set a tie and if sleep is so irregular there is no routine to follow iyswim

thats why we were told 8pm earlier if needed and then body will get used to going off at that time no naps so well and truly ready for bed he goes at 6 as has no naps and is well ready by then i'll give at 6 if really tired 6.30 if not tired and he'll be asleep for 7

we were told to give to ds early to get him to bed earlier as he wasn't sleeping till 3 am paediatrician said start from 8 and then if needed work down from there it hasn't regulated body clock and doubt it will but we have it on repeat now so not too worried

we dont let him nap either we just do early bed then he wakes around 2 then up at 5 on a normal day works better for us then late nights he is better for it

if i give it too late it does as his sleeping deeper and not wanting to get up leaves him tired if he doesn't wake up naturally

i will give it to him as soon as he wakes normally around 1-2 ish and then he will bounce out of bed at 6 no problem i never give from 4 o'clock i just put him to bed early that night

We have been using melatonin for 2 weeks now woth DS1 (4). ALthough it does help DS1 get to sleep it hasnt regulated his body clock we give it at 9.30 everynight as he gets tired about 10.30 he can then wake up between 2 and 4am. He also naps at all hours in the day anything from 11 am to 7pm he is all over the place. We are going to continue for a while to give it a real go because it is still new but I think ,maybe slow releasing may work better. Also one night ds fell asleep early at 9pm before we could give him any so we kept some available in the night as he was likely to wake at 12-1am from previous experience. He actually woke up about 4am and DP gave it then [sigh] and DS1 was very tired and grumpy the next day.

I did notice a few times that when Ds1 had slept all through with the me melatonin that he was very miserable and teary the next day has this happened to anyoe else?

it helps as ds needs a good amount of sleep and to finally be able to get him to sleep at reasonable time really helps behaviour even with waking in night its like having different child behaviour wise and i get to read book in peace i dont mind early morning as id have to get up anyway but having time to myself in the evening is what i need and his better for it

it wont be the melatonin as its not a sedative more like its assisted hi to sleep deeper and his body was catching up

ds has melatonin at around 6 asleep by 6.15-30 later on if really not tired 7 latest

he does wake early hours and can be easily settled up from 4.30-5,or 6

6 if been awake hour plus of night

normal waking time is 5

i was told to give melatonin early to try and regulate body clock as melatonin is natural hormone found in us to regulate body clocks so night time we feel tired etc my ds has trouble falling asleep this is why he has it he would be up still at 3 am without it melatonin enables him to fall asleep at reasonable time and to try and set his body to a routine although it hasnt worked and still needs it to be able to fall asleep

it lasts 4 hrs so can be administered again but the main point is to try and get them down for reasonable time 7-8 to regulate there body clocks

She goes to bed at around 6.30-6.45. If we don't give it she isn't asleep by 9 or 10, and she is so little, she really needs her sleep. Regardless, she wakes in the early hours, so we need to get her sleep in somewhere.

Thanks lou. That's interesting. He looked so groggy and grumpy when I woke him up that I was sure it must be the melatonin.

Why do you give your DD1 her melatonin so early, if you don't mind me asking?

Hmm, I doubt the melatonin would cause the sleepiness this morning, because it has a very short half-life (about 45mins). DD1 has never woken later because she had a dose in the early hours

We always give DD1 (3.6 and 14.5kg) 2mls at around 6.15 p.m., but she does wake at around 3 a.m.

Hi all,

My DS3 is almost 5 and autistic.

His sleep has been increasingly poor - waking up in the small hours and not going back to sleep - so we have been prescribed melatonin.

It's not the slow release stuff as he wouldn't take a capsule, it's the liquid.

He woke up at 3.30 a.m. this morning and at 4.15 there was no sign of him going back to sleep so I tried giving him melatonin. It worked, and quite quickly, but he was very fast asleep this morning and we had great difficulty getting him awake and up for school.

I am wondering whether we should set a cut-off point in the evening - say 9.45 p.m. - to administer it if he is not asleep. If we do this, is he more/less likely to wake up around 3-4 a.m.?

All experiences/advice gratefully received!