Talk to me about Melatonin please?

[santastooearlymustdache]

DD is 4.7yrs and definitely has major ASD traits. She sniffs and licks things, she hates noise, she can be socially awkward (almost rude at times) and so on..

Since accepting this and seeking professional help (well on the way to dx, got parental support - lots of positives) things have got easier for us (DH and i) as parents, we have much less conflict with DD and have had to lay back so far we are more than horizontal.

Apart from bed times

This past month have got more and more stressful, trying to get DD up the stairs and into the bathroom is a major conflict at the best of times, 6 days out of 7 end in her shouting and screeching at us, we try not to play 'tag team' but it's the only way we can cope.

The past week she has been waking an hour after falling asleep, and is very fretful - will not be comforted, and this carries on all night. Sleep for about an hour, then fretful and crying until she falls asleep again..and so on

No way is she getting a decent sleep, but is up well before dawn (5.30 - 6am most days) and i certainly know DH, (adult) DS and i aren't!

She is shattered, she's stroppy, she's argumentative and when she's not like this she's almost catatonic. She's unresponsive, verbally, physically and facial expressions go by the wayside.

I know she's finding the whole Christmas thing a lot to deal with - every day starts with a countdown, a counting song/game and the obsessional rituals are becoming so much more important.

A couple of close friends have mentioned Melatonin and how it helps children with ASD to sleep - i've read a little about it and agree it looks like it will help our DD (and us [gulps]) no end, but wondered if anyone could share with me how they went about getting it prescribed?

I have got a telephone appt with our (very good IMO) GP, and am hoping he will agree to this for her, i'll even pay if needs be.

Any tips for me?

Apologies if i don't get back to thread tonight, i can hear her singing and kicking and she's been in bed a half hour already

Hi santastooearlymustdache,

Well, for us, melatonin has been an absolute life-saver. You are unlikely (although it is possible) to get it from your GP, because the use of melatonin in children is 'unlicenced'. That doesn't mean that it can't be used, but merely that it hasn't been subject to clinical trials (because it is so expensive). What THAT means is that each Dr prescribing it for children takes it upon him or herself personally that the benefits outweigh the risks. Having said that, it is used in many many children, there are lots of research papers documenting its use in children, and is considered very safe. Generally, it is Paediatricians who presecribe it in the first instance, and then the GP repeats the prescription.

It sounds like your DD is completely over-tired. I don't know what you've tried, but for DD (6.0) who also wakes around 5-5.30 am, I have found that a 6 pm bed time is ample. I find that any later than that and she is a complete wreck and starts fighting it.

Our paed recommended it and wrote the first prescription for DS. She also wrote to our GP and asked that they continue to prescribe it when we run out - they always look a bit horrified when I first ask but then look at his notes and do it.

We don't use it all the time, but if his routine is out of sync we might use it for a week to get him back into it, we also use it when he is overly stimulated - either excited or anxious.

It is really helpful for us and we have had not bad side effects. I must confess to taking it some mornings after coming back from a night shift to help me sleep

Please don't decide what medication your child needs based on what friends say and I would exhaust all alternatives before deciding medication is the way forward, not a week or a month of disturbed sleep patterns.

I agonised over whether to let my child have melatonin, in the end we did but it was under the guidance of a team of mental health professionals at CAMHS led by his consultant. My GP won't prescribe it for children he will only do so under the instruction of CAMHS, he just writes the script, he doesn't make the decision on whether the child needs it or not. I don't think he can.

There will be a lot of strategies you can try before drugs are the answer, they are the weapons of last resort. Take it back to the specialist, not the GP and let them know the current difficulties, ask them for advice.

sitandnatter please be assured, this is not something i am asking about on the advice of a couple of 'chums', or anything i take lightly.

one of my friends is a dispensing chemist who has professional training in children with all sorts of SN and the other is the parent of an ASD child too, i trust their judgement and value their advice, and value your input also.

i have 'battled' with DD and her sleep for all her life, but now she is getting physically stronger and has actually struck out at me.

i am exhausted, she is exhausted.
DH is reluctant to commit to his job as much as he should (he needs to stay out overnight at least once a week)

i have tried lavender baths, no outside stimulation before bedtime, bananas, wheat baths, stories, co-sleeping, staying up, going to bed early....

this is my cry for help, i am crumbling

And I am hearing you now sorry........ get back to the specialist who is in the process of diagnosing your daughter, my son is now diagnosed with a sleeping disorder as well as the ASD. Sorry to come over as harsh but medicating my child to me was a huge thing, something personally resisted but it was his quality of life that suffered as it seems to be with your daughter.

When he slept everything else was easier to cope with. A chemist will know that some ASD children will be given melatonin not why, what the symptoms are or anything else, just that they are prescribed.. My GP wont prescribe without instruction from my son's consultant and even then only with regular reviews.

As you might have guessed I am big on only taking advice from mental health profesionals, CAMHS, the consultants, psychiatrists at CAMHS. If they say she needs it then I trust them. She may well do but my advice is to get her medication from mental health professionals, at CAMHS

it's all well and good you saying that, about following advice only from a professional, sitandnatter but we can't go on like this, our family i mean.

cast your mind back to your early days, before your DC dx. how did your HCPs and others find out about how difficult your life was? before you were offered any sort of therapy, drug or otherwise?

pretty desperate i'm sure. but you made phone calls, you went to appointments, you had to tell your side of things...you had to take the issues to them.

but i will take your advice, and seek the ultimate answer with a professional - and my 1st point of reference in this instance is my GP.

You will probably find your GP won't be willing to prescribe Melatonin. Mine won't, the GP even insists on regular reviews with the CAMHS specialist for them to continue writing the prescription out. See your GP by all means but it is highly unlikely they will prescribe melatonine for a child without a specialists support.

We went on the usual waiting lists but sadly for us my child became suicidal and made suicide attempts so the regular routes for us were bypassed.

santas, I understand that desparation. Honestly I do. Melatonin is a perfectly reasonable option, once other routes have been explored.

Things the Paed wanted us to consider (and we found that because we could say 'tried it' to all of them, he did prescribe):

-Blackout blinds
-Background white noise/soothing music to settle with (we use a 10 min baby musical star - DD1 won't sleep without it, but it also gives her the 'trigger' of 'it's bed time')
-Sensory measures - we use a weighted blanket, because it helps DD1 to feel secure and less fidgety.
-Secure bed time routine.

One thing that concerns me, is that it seems your DD doesn't actually have difficulty sleeping, but then wakes?

Melatonin standard has a ridiculously short half-life. That means that once it is in, the effect wears off within about 45 minutes. So, if your DD settles to sleep, it won't keep her asleep.

There are melatonin sustained-release preparations, but they are most effective (really, only effective) if they are swallowed whole, and many young children don't do that very well.

then i'll use your little anecdote to press my case shall i?

thanks for belittling my situation and telling me i'm wasting my time

worst case scenario for me is that my GP will have another record of how our whole family is affected, and this can only help strengthen the need for more support.

hi Lougles

DD has had the same musical mobile since birth, i'm dreading the day it breaks. she's got a cd player for christmas, with some relaxation cds so hoping she'll take to those, i hadn't thought about weighted blankets as such, but i do have to tuck her duvet in tight and she weights it down with cuddly toys herself.

you are also so spot on with the bedtime routine, we have learnt now that bedtime has to be within the same half hour each night or it's a non-starter. the rituals really come into play here too.

i see her bedtime routine being messed up because she is so tired she's uncooperative, and fights against it, then winds herself up so much she can't sleep and is creating her own vicious circle...

does that make sense?

Hi - I'm the friend in question who talked about Melatonin to the OP. Just so you know I was talking to Santas from the point of view of having a child with ASD who had Melatonin prescribed by a paediatrician and something she could look at as a possibility.

We're currently out, hence why I can still hear thumping and banging from upstairs

I hear what you're saying about what a big decision it is to give it to your child as I've been through that. Our paed was very understanding and explained that its not a drug, but a hormone that they are low on and can help them sleep.

Hopefully the GP can at least refer her to a Paed who can discuss this with her.

Santas, I understand completely

My action plan would be:

1. Look at her routine for bed, and remember that you are the adult, she is the child. That means that you know what 'end-game' is, and she only sees the stages that get her there.

So, you decide what time you want her in bed (in my case, I want DD ASLEEP by 6.30 pm). You then work out how long it has been taking you to get her to bed. Don't stress about it. Just think 'ok...it's been taking an hour-and-a-half...', then try to start getting her to bed at THAT time. Don't worry if you can't, you can always start with whatever you CAN do, and work it back slightly as it goes.

The trick, for us, was working out what the routine was, then we could gradually work DD back to the time we wanted her to go to sleep.

We have it all very efficient now, but it took agees to work out what worked for DD. We do this:

-dinner downstairs (obv).
-Undress downstairs.
-Get milk for bed ready
-Nappy on

• give melatonin

-take upstairs -clean teeth -straight into bed, tuck in, light off, star on, kiss....OUT.

DD1 has certain things that she MUST have for sleep:

-Blind down AND curtains drawn (v.important...can't cope with just blind down).
-Large fleece blanket up over face
-Weighted blanket up to shoulders
-Kitty behind right side of head
-Milk cup on right side next to wall
-Bear comforter on left side
-Ceiling fan on (although we are weaning this, and I am telling her it is too cold for fan right now)
-Musical star set at 10 minutes.

So, if it takes 90 minutes to do it all, and you want her asleep by 6.30, then start at 5 pm. Or, compromise, and think that you'll settle for 8pm asleep at first, then work it back by a small margin each night until it is right, like 15 minutes.

But the key is that you don't battle it. In fact...even if you just let her go to bed when she's absolutely whacked for the first night or two...then use that as your start point - just to get rid of the battle.

2. Keep a diary for a week or two - record what sleep patterns are like, what measures you're taking, etc.

3. Make the appointment with your GP, and expect them to say no. But, you can ask for a referral.

4. Post on this board whenever you need to - sleep deprivation is awful.

It does sound as though she is chronically tired, and that isn't going to be solved in one or two nights, with or without melatonin. But, once you are starting to crack the routine issues, the melatonin might be good for her.

Oh this all sounds so familiar.

1st warning at 6pm
2nd warning at 6.30pm
Go upstairs at 6.45.
Run bath while teeth are being brushed.
Sit on bathmat and clean fluff from between toes, in order.
Get into bath before sister or have a melt down.
Sit in bath.
have same toys
Fill bottles.
Sister gets out of bath
draw shower curtain.
Stack bottles next to bath.
sister taken for milk and story.
Get out of bath, wrap tightly in towel.
Watch bathwater go down or have a meltdown.
Milk in batterd blue cup that he;s had since he was 1.
Stories; two.
Wrap tight in blanket.
Sing three lullabys
Switch light out.
Leave room.
Childgets out of bed and sleeps under bed wrapped in blanket.

Yes, yes, yes....

The key is working out which bits are essential and which bits just happened to be here this particular day.

Once the essential bits are worked out...work out which bits you can live with, and which bits must be weaned off ASAP.

The list I posted is the list of stuff that has been incorporated over the last few years, that WE can accept

The fan is contentious...she 'can't sleep out fan' but we can't leave it on, knowing that she'll wake up because she's frozen because of the fan

We're working on getting him to sleep in his bed, but its impossible at the moment as he;s so stressed out with all of the changes to routine caused by Christmas.

yes, the 5 minute warning!

in 5 mins i'm going to run a bath, and then i need you to be ready to be in it.

in 5 mins i'm going to come up and wash your hair, 5 mins playing, yes it will take 5 mins to dry your hair, yes, you can stir the milk for 5 mins....

then we get dressed, downstairs to watch the bedtime story on cbeebies or iplayer. then milk, then upstairs to do teeth, DD has to do toothpaste while tap is running makes half hearted attempt to brush, then hold brush out without talking for me to finish

child cries i am brushing too hard...

into bed, i break my hand tucking duvet into wall, story, music on and run for the hills

then lose count how many times you have to go back because the duvet is untucked.....

this isn't such an exclusive club after all

Hi santas my dd is 2.4 and hasn't slept well since birth, some nights she only sleeps 4 hours and we can be up 10 times a night to her. She has some odd traits and pead prescribed melatonin for her after we had tried a sleep counsellor and advice from pyschologist and OT which didn't work. Melatonin gets her off to sleep within 40 mins and she's easier to settle when she does wake at night however it doesn't stop her night wakings.. pead had no problem prescribing it for us as he could see how badly the lack of sleep was affecvting us all, he gave us first presc for 6 weeks and yesterday gave another for 3 months. He said too expensive for a gp to do it. Hth

Interesting you mention about not playing in his own room Lenin

DD is really reluctant to do this, but is doing it right now (hence the MNing)

we had a pretty good night for us, took her over an hour to settle down but didn't need much 'intervention' and only 2 wakes up! She is a lot more lucid today, but i don't know if that's because she's having a pyjama day (should be at school) or that she's actually had some quality sleep.

Thanks for all the support here, the information has been really useful too

about 4.7 can be rock bottom I think - the time when it really really dawns on you that being-up-in-the-night-for-4-hours-at-a-time-with-a-child-several-times-a-week just isn't "Oh no, my child doesn't sleep through yet, dear we're all in the same boat" any more.

Melatonin can be a real life saver in those circs.

And please know that children with really debilitating (for everyone) sleep problems CAN and do grow out of them. I guess the age varies, and there will still be occasional need for a few nights of melatonin to reset the body clock, but it doesn't have to go on being hell for everyone for the rest of your lives.

We do occasionally use melatonin, but only the quick release get you off to sleep kind (it still seems to give everyone a more peaceful night)

Oh - and don't waste energy trying to work out what is waking the child.

DS1 was the same and would take hours to get to sleep. up and down stairs etc etc. I have to lie with him in bed until he gets off, but with Melatonin that takes about a max of 30 minutes! WOW!!! And how good it feels for him to be getting at least 7 hours a night. He goes to bed at 730. The only thing Melatonin does is helps them get to sleep, it doesn't keep them asleep. So for us, DS1 is still up from 4ish, or earlier or later depending on him. Once he's awake, he's awake!
We got it from the Pediatrician, the GP will not prescribe unless there is some sort of agreement in place which there isn't apparently.

DS is great for going to bed,same routine and is usually asleep after 15 mins. we save the melatonin dose for when he wakes at 3 or 4am. Before melatonin,that would be awake and stay awake time, but we give the melatonin when he wakes in the early hours and he's asleep after 20/30 mins and then wakes about 7.must admit that he only wakes in the early hours about 4 times a month,and it usually co-incides with a full moon

DS is still up We are not having a good night tonight.

Neither are we, bought a new bed that was delivered today, that went better than I thought as he didn't want a bed but to sleep on the floor!!!!! On a mattress though. Anyway bedroom rearranged totally and I've let the dog sleep on the dogs bed on his floor which he loves.

It was a great success until I went to the loo, the dog woke up and is now playing, a puppy, and has woken my son up;

Great plan, messed up. ahhh well I'll keep working on itl