It's 5.30pm and my 5 year old is already in bed

[Seawolves]

He's been wanting to go to bed for the last hour or so and I caved about 10 minutes ago and popped him in bed, he's been awake since about 3am so must be absolutely knackered. He's blind and has complex disabilities (part of which is disordered sleep) so when he wakes in the wee small hours there is no negotiating with him to get him back to sleep and he doesn't get the same cues non-blind people get when it comes to sleeping.

Who knows what time he will wake. It could be 5am or it could be before midnight (we have tried melatonin, it didn't work).

Oh dear, I'd probably assume it's going to be before the crack of twat and plan my bedtime accordingly.

Doesn’t sound as if you had any choice.

Hope it goes as well as it can for you all xx

Oh not good :( I would get a very early night, you must be knackeree.

That's tough going, enjoy your free time while you have it! Nice movie or TV and very early night.

I have a child with complex needs and his sleep is all over the place due to complex epilepsy.
I just roll with it and try to enjoy the night time quiet if I am up with him.
What dose of melatonin do you use ? Might a higher dose help ?

Could you try giving him 45 min as a nap and then resettling him for the night at 7 to 8pm ish?

We went up to 5mg but he's on seizure meds as well as other meds so the docs weren't happy to go any higher as his heart rate drops too much.

Sadly not, it would risk a seizure.

Oh I get it entirely. We have Chloral hydrate as a rescue med for seizures and sometimes just 1ml settles him off for the night. But other times he is awake all night long . But then if he has big seizures he has been known to sleep for 36 hrs solid.
It's hard to get a routine up and running for any length of time so I sympathise.

Sorry to hear that, it sounds very hard. Apologies if you already know this but have you tried much lower doses of melatonin? I don't think more is always better when trying to shift circadian rhythm. I think the pineal gland only releases 0.1mg each night in children so a dose of 1mg is 10x what the brain would naturally release. High doses act more as a sedative as can make a child fall asleep quickly and then wake after a few hours.

We have that too, 2mls at bedtime every night (not for seizures) and then another 2mls rescue dose if he needs it. Like yours, this little one can sleep for 20 hours or more but then there are days when he can be awake for 20 hours or more.

Thank you @Sunflower2461 I have asked his doctor if we can revisit the melatonin, I will keep that in mind if he says yes. I think part of the problem is his body doesn't get the circadian rhythm cues like a sighted child does.

Getting him to sleep isn't the problem, he will fall asleep before the chloral dose is given, staying asleep is a whole different matter.

He slept until just before 5 and was happy to lay listening to stories on his Tonie box (I bloody love that thing, he hasn't figured out how to hold or play with a toy yet so his Tonie gives me time to have a coffee while he happily listens to stories).

good result!
God bless the Tonie !