Lack of sleep!

[Lizziewest88]

Hi
My child with ASD has awful sleep. We can get him to sleep but he can’t stay asleep. Today he started his day at 1am. He started melatonin a couple of weeks ago and it’s made no difference. We are back at the hospital next week. I don’t think melatonin is the answer as it’s really for getting kids to sleep. We know all about sleep hygiene and have done everything to support his sleep.
has anyone got any experiences?im so exhausted!

Some people give a second dose of melatonin if DC wake early in the night.

Is DS taking immediate release melatonin or prolonged release?

There are other medications to try.

Thanks for your reply. He’s taking prolonged release tablets. Interesting to know you can take a second. Just hoping we have a solution x

Our paediatrician says our 7yo can have up to 10mcg (mg?!). 10 somethings, anyway. It might be that he needs more. Our daughter currently still wakes between midnight and 2, but she isn’t waking terrified so that’s progress!

If agree melatonin is really for the getting to sleep rather than staying asleep. How old are they and what time do they go to bed? Our biggest issue was getting our son to sleep (he’s AuDHD) but generally he’d stay asleep. When he was younger though we used to have really early starts and that was always worse the later he went to bed so have you tried an earlier bedtime?
we consulted with a sleep consultant when he was a toddler and she explained that when we’re overtired our bodies produce cortisol to keep us awake because it assumes we have to be awake as that’s why we’ve stayed up past tired. Cortisol stays in the body for up to 12 hours and causes night wakings and early starts. Have advised us that if we were seeing signs of tiredness such as yawning or rubbing eyes etc we’d missed that optimum window so it is really hard. I have to say it definitely made a difference for us and when he started school he’d be asleep by 6pm!

I sometimes take melatonin as I sleep badly, and find even slow release won't last long and i wake up at 2 or 3am, I'd try taking another at 1am (maybe not past 3am though as it'll make the morning harder I think). They also start you normally on a v low dose, so it might just be it needs a boost! Some people prefer magnesium to support sleep instead of melatonin (personally makes no difference here). My son is asd and also takes it, but he's always been more tricky to get to sleep, rather than keep asleep (although was sometimes waking). We did find a weighted blanket and audio stories on an Alexa meant that when he did wake up, he could put a story on and it helped him drift back off, rather than getting up, switching lights on etc. We gave him a little routine of going to the loo, then getting back under the covers, using his blanket and switching on his regular story, and that now at least means he rests if he can't sleep.

Melatonin is helpful if slow release. Mine has been on 10mg for years. We use it with a strict routine for evening and bedtime with visuals. Including a clock. We started with a toddler gro-clock that showed night and day. Then we moved him to a dementia clock, again it tells him day or night. He has no screens at night. Even if he's wide awake. We leave quiet sensory toys for him, but as time has gone on he sleeps better and now loves his bed. Interestingly we put a double duvet on his single bed, and now he's bigger he has a double bed with a king duvet. We worked out that he was waking when the small single duvet came off the bed in the night and he was cold, he couldn't get comfy again. Lack of sleep is devastating to us SEN parents. All we need some days is a sleep. My son is much older now but I feel your pain! Speak to your doctor about whether you could increase the dose.

If he gets to sleep fine, try giving the tablet at 1am instead? I’d avoid increasing the dose without authorisation from a paediatrician. Also, we were told that some children actually need less and too much can have a negative effect.