Asd melatonin? Wits end!

[nicand2]

My ds is 8 and was diagnosed with autism 6 years ago. He has never been a good sleeper, going to sleep late and waking early but as he is getting older it is getting worse. The tiredness is making him very anxious, aggressive and generally difficult. Last night he finally fell asleep at 10.30 after 2 hours of screaming, swearing and anxiety. We have always followed bedtime routines, blackout blinds etc. I have seen our GP today who has advised us getting a paed apt as she is unable to prescribe anything. I have read lots about melatonin and although it sounds as if it would help it sounds as if it might be an uphill battle to get it?? We are all tired and it is now having a negative impact on family life, we have resisited any medication for 6 years but our ds is just not able to settle into the transition between being awake and sleep..,there is no off button. Does anyone have any tips or is there any other medication that could be prescribed?

Melatonin has been a huge help to us. Our pead prescribed it no problem, but we had so many problems getting the pills down in the end we brought the under tongue spray, which works a treat. Our boy always had trouble going to sleep, but not staying asleep. If regular waking is occurring you need the slow release kind (a pill with a special coating that means they are 'drip fed' it all night). Once your pead has done an initial prescription and copied your GP you should be able to get it on repeat no problem.

Hope that all makes sense.

DS1 is on liquid melatonin, that helps him get to sleep - otherwise it takes hours and he just cannot shut down and gets more and more agitated.

He still wakes during the night, but I'm able to get him back to sleep generally within 15-20 minutes most times, so I can cope with that.

I have pals who have melatonin brought back from the US, where it is sold over the counter in every Boots equivalent as it is classed as a vitamin. We are just slower in this country, though I note that NICE is now recommending further research into melatonin (which may result in it being far more widely used).

If you would like me to ask them I can get further details, just PM me.

Didn't have a problem being prescribed melatonin by the paed and it has helped a lot. My ds is on the slow release as he was waking frequently in the night but that is a pill that has to be swallowed whole which after a little experimenting hasn't been a problem. I suppose you could get the liquid and split the dose if pills didn't suit. Don't feel bad for using melatonin, I resisted but the benefits of having awell rested child to their development and then secondly how you then cope with them is huge. Also melatonin doesn't stay in their system for long so their is no accumulative affects.

I find it just helps "tip" my boy into sleep, as his autistic hyperactivity means he simply does not know how to lie still until sleep comes

I have struggled to get it, possibly because my DS doesn't have challenging behaviour, he just lies there wriggling around in his duvet. He is 11 and invariably awake when I go up to bed between 11 and 11:30, he then has great difficulty getting up for school. I have had two meetings to discuss behavioural responses - sensory issues, limiting screen time etc., because the paed says its hard to stop melatonin once started. Fair enough to investigate other options first I guess. I think they are now going to refer back to pead so maybe we can trial it in a month or two when we get an appointment.

We finally went down the melatonin route after trying everything else(sleep nurse etc.)By the time we asked for it ,DS's consultant was not allowed to prescribe it any more-those who were on it before a certain date could keep their prescriptions,but no-one else was allowed it.

The consultant really believes in melatonin.He said he could guide us to a site and advise on dosage,but we would have to buy it.The site is Biovea.

So I guess it depends where you live-but I will say it changed our lives !

It is being less effective lately,so after advising us to take him off it for a couple of weeks,which we did,he upped the dose and we are making sure he has it an hour before bed and it seems to be working again.

Think it must depend on your area! Our paed actually rang us up after a morning appointment to say after discussing it with collegues thought it would be a good idea to try it!
Get the referal and ask.....its been a god send to us!
Good luck!

Hi, my little boy who's 5 has been prescribed 1mg melatonin. It's worked brilliantly to actually get him to sleep. He drifts off within half hour rather than 3/4 hours but he's not staying asleep. He's up most of the night. Does anybody know whether requesting the dose to be upped will help him sleep all night 🙏

We found melatonin to be a huge help - ask your GP to set up a Paed appointment. Whilst you can be unlucky, most professionals are sympathetic. Make it clear you need to at least try it and don't give up.

He drifts off within half hour rather than 3/4 hours but he's not staying asleep. He's up most of the night.

Amy was he waking like that before you started the melatonin? Mine started on 2mg slow release tablets at 4yo and it didn’t help keep him asleep all night unfortunately.

DD quickly swapped to slow release Melatonin and that did help.

He would wake sometimes but since starting melatonin it's every night. Should I ask for slow release tablets. Thank you for your help

Yes I'd start by asking for slow real lease and if that doesn't help as then to up the dose