Melatonin experiences: autism

[AmumAI23]

My 5 year old autistic son was prescribed Melatonin by his consultant and started taking it on Monday, so for two nights.

The side effects seem to be awful: he’s been in a constant state of meltdown all day today, screaming, hitting, kicking. He is also lethargic and refusing to eat any of his safe foods apart from biscuits. He eats very little so this isn’t a situation we can afford to continue.

The melatonin itself has helped get him to sleep within 45 mins (usually takes 2hrs) but is doing nothing to stop him waking in the night or getting up at 5am.

Does anyone have any experience and can advise if it gets better? So far it’s just made his behaviour much much worse and he seems so unhappy. I don’t want to inflict this on him if it won’t help him long term.

The melatonin brand is slentyo.

Mine didn’t have any of the side effects you mention, however it doesn’t stop him waking in the night (though this is much less frequent now - ds is 10) and he’s still usually up between 4 and 5am.

Are you able to discuss it with the consultant?

I have had very good experiences with Melatonin and no side effects, to the point where we use it every night.

Bedtimes used to be very difficult, lengthy affairs, but now I give 5mg to DD about 40 minutes before bedtime and then she asks to go to bed. I know stimulants like screens and sugar will negate the effect.

I use the 5mg gummies from Biovea and have given them to my NT DS as well.

Sorry not to have anything more helpful to add.

Melatonin doesn’t work for all. If DS falls into that group there are other medications to try.

Alternatively, could it be the heat?

Could the fact he's getting more sleep mean he's processing a lot more than he was able to before and therefore feeling agitated whilst it all settled down? Just a theory.

My 4 year old was prescribed a trial dose, we were advised to give 1ml and we can't give it 2 hours either side of food. We were also advised it would not stop night wakes and could result in him waking earlier as he'd fall asleep earlier/quicker.

We haven't had much success even getting him to take it tbh, we've tried a couple of times when the timings fitted (ds has supper every night and it's the only thing that seems to signal to him it's time to wind down) but he just spits it out - and obviously we can't mix it with yogurt or anything because of the food rule. I tried putting it in a bit of orange juice, but he knows he's not normally allowed that at night so was really suspicious and refused to have it.

My child snacks a lot up until bedtime and never had an issue giving it to her. I just give her the tiniest slither of a gummy and settle her into bed, or sometimes whilst she is still playing and she gets sleepy and asks to go to bed. But I wasn't prescribed hers, had to buy it online.

@Summermightbegreat sorry to jump on the thread but do you have any recommendations of where I can buy melatonin online? Looks like there’s lots of options but I don’t know where is best. My DS has recently been diagnosed with autism and sleep is one of his main difficulties at the moment but the paediatrician refused to prescribe it

Ooh im not sure as my friend bought it for her DC and then gave some to me which I use.

I know the brand though and it's this one, so you probably can buy it here... I started with using about 1/16th of a gummy for my five year old and then when I saw that worked, made the amount even smaller.

www.biovea.com/uk/product/detail/15526/melatonin-gummies-10mg--mixed-berry---120-Gummies

ditto. Never any issue with giving around food times. also not prescribed, got on line. DD loves the gummies, I have to watch she doesn't sneak them throughout the day!

They also have a 5mg version. I give 5mg to my NT DS who is 6 when I know he'll need help getting to sleep. DD is ASC and I give her 5mg every night.