Another Melatonin Question

[slowlyburningcalories]

DD is nearly two, she never sleeps longer than 2-3 hours, Neuro put her on 3mg (increasing to 6mg) of melatonin a months ago and after initially seeing the bright, happy, motor aware, perfect balance and coordinated child (for 48 hours) we then had 3 nights of severe night terrors which I posted about here. We persevered but increasingly have seen DD get confused, unable to fill in puzzles, forget the names of objects and stop using her right side and she has stopped eating as well. The drug has made it easier for her fall asleep at night but has not helped at all in reducing the wakeups.

So we want to wean her from melatonin ASAP, GP says to reduce dose by 1mg a night (now on 4mg) and she has said that in smaller children the drug can have an effect which lasts longer and slows the cognitive processes. We were assured by Neuro that the drug given at 7pm would have no effects the next day. I feel like I have just done the wrong thing for a month :(

That's a huge dose. DS was only given 2mg, last year and he was a large 7 at the time. I also read something somewhere that large doses in children can be counterproductive and that a better sleep inducing effect can be obtained at quite tiny doses. Melatonin also does nothing to keep people asleep - it's a hormone involved in inducing sleep.

Don't go blaming yourself, though. It's obvious your DD needs to sleep better and you've tried something that was offered.

i'm very confused by the information your GP has given you about weaning off melatonin and side effects.

we've recently been prescribed some by DDs consultant psych and he assured us that a dose only lasts long enough to enable the person to fall asleep - it is not a sedative, but a hormone that triggers the release of natural sleep inducers.

If a child wakes and struggles to sleep again afterwards, it has worn off already. We've been advised if DD has long periods of wakefullness after 12midnight then it's ok to give her a top up without inhibiting her 'performance' the next day.

she's 4.11yrs btw

just checked the bottle, we have 3mg caps too, so a max of 6mg can be used

We were told we could experiment with dosing at any time of the evening but not to give it after midnight - DD commonly wakes at 10pm so we were told we could give the dose then, we did try that one evening but that was the worse nights sleep she has ever had, waking every 15-20minutes until 6am when we then had to wake her at 9am!

ouryve DD is a small toddler, tall but very slim so I suspect we are knocking her out too much - we were told to start on 3mg and increase!! We will wean 1mg at a time and see if we see any benefits at lower doses

My DS is 15 and only takes 2mg. We were told at first he could have up to 6mg but I worked on the 'start small and see if that works' principle and it always has.
We were also told, like Unchartered and Ouryve above, that it's just a natural hormone that will get you to sleep rather than a sedative drug. We've never given a top up, but that's because his problem is almost always getting to sleep, not staying asleep.
Every child is different - you can only try and see what works for yours, so don't be sad at having tried. Sleep deprivation is a dreadful thing and you have to try and help! Maybe get a second opinion and try a smaller dose?

blimey that is a big dose! ds started at 3.5y ... he's a big boy & was started at 1ml increasing to maximum of 3ml. He is now 5.5yo (& nearly 25kg) & is on 5ml, which is very effective at getting him to sleep but not staying asleep.

Doses for Melatonin are not calculated by patients weight unlike other drugs so you will regularly find small children taking larger doses than an adult to achieve the same results. This is because the way in which the body metabolises it varies from person to person so it's usually prescribed with a titration dose, slowly increasing until the desired result is reached. This is the reason top up doses can be given as it's levels can fall quickly in children with neurodisabilities.

So looking at this the other way then what else do we try?

I'm not leaving her to cry before anyone suggests it - DD is brain injured and suffered enough, I want her to sleep for longer, not be left fearful of bed and scarred emotionally. She has slept beside one if us since NICU due to seizure risks (have woken to her seizing twice) but since we got Midazolam then we are more confident in her sleeping in her own room and she has settled well in a cot for several months now where previously she screamed as soon as she saw the cot.

So we have made progress. Its just that she is so tired and clumsy that I do think less night wakings would help her.

Seems a very huge dose to me. My boy is a big hefty 9 year old and 1 mg is all he needs most nights, just to enable him to get off to sleep.

Dd is 2.10 she has been on 3mg for 6 months with minimal effect. Hers has just been increased to 6mg. We were told it doesn't go by bodyweight it goes by individuals sleep issues, and it has Jo side effects as its natural hormone. In USA you can buy it health food shops

Slowly I've just re-read your post could it be the midazolam causing these effects on your dd? I have epilepsy and have midazolam when I need it and it makes me feel very uncoordinated and clumsy for 24 hrs after. If your dd is on it longterm then it could be this rather than the melatonin causing the side effe ta

Chundle - we give midazolam as an emergency rescue med, she is not dx (yet) as epileptic just that the seizure she has once in a blue moon are potentially life threatening and so we need something to stop the seizure very fast. Paramedics in our area cannot carry Midazolam and instead give her Diazepam which she reacts badly to and it doesn't work either.

We are down to 1mg on the wean and in fact it seems to still be working at sending her off to a nice relaxed sleep, and also she is resting better after any wakeups, she is also brighter and more alert during the morning - and her coordination is almost back to normal, babbling more and able to recognise colours and do her jigsaws.

Might stay on the 1mg for a week and see how she gets on