ASD and severe sleep issues - what can I reasonably expect from paeds?

[SinkGirl]

I am honestly at the end of my tether after yet another night where DT2 was awake for an almost 6 hour stretch in the middle of the night.

We have two types of days, either he:

• has an hour’s nap after trying to get him to sleep for two hours. Then it takes him 3-4+ hrs to get to sleep at night, and he’ll wake maybe twice but go back to sleep reasonably quickly (30 mins) each time
  

• he cannot nap, in which case he will be asleep by 7:45pm, but will wake up between 11:30pm and 2am and be awake for 4-6 hours
  

Due to his ASD, visual impairment, brain damage and hypoglycaemia I have to be awake when he’s awake, not to mention unsafe sleeping environment - still waiting for social care to send an OT to assess us for this and I’m looking into options we can try until then.

I am honestly going to end up seriously ill if this continues. I have health issues myself already and I’m barely functioning.

His paediatricians have so far been non-committal: maybe he just needs less sleep than other kids, apparently. He’s 3, I guarantee that sleeping for as little as 6 hours sometimes in 24 hours is not good for his development. A good day would be 8 hours in 24 hours maximum. Google tells me a 3 year old needs 11-13 hours sleep for brain development.

I’m not sure melatonin would help on the days where he hasn’t napped but maybe it would on the days where he takes hours to get to sleep. Due to his other health issues I’m not willing to risk self medicating.

We’ve been waiting on test results because he drinks and urinates excessively (more than 2.5 litres of drink most days, much of it at night) but they have been unable to find the cause and his results show that it’s not causing him any problems.

We are not seeing any of his medical team now til February. I cannot cope until then without at least trying something. Considering emailing the consultants’ secretaries to beg for something or to be seen sooner. I’m worried about the impact on his brain and his health as well as my own.

Those who’ve had similar situations, has melatonin or anything else helped?

We’ve done the sleep diaries and the sessions with a paediatric nurse to see if we can improve anything. The only thing she suggested was earlier naps / no naps but we’ve tried everything to facilitate this and whether he naps or not we have a problem.

Just dropped them at nursery for the morning so I’m going for a lie down, but if anyone has any suggestions I’d be really grateful.

[Waitingfirgodot]

Our son takes circadian (slow release melatonin). He hardly slept at all before it and bedtimes were a nightmare. Now he goes up to bed, reads for a bit, then falls asleep. His behaviour improved dramatically immediately, bu the best thing is how happy he is about the fact that he can sleep. For us, it's worked to the point that it has been life changing!

[SinkGirl]

Thanks. That’s good to hear. It would be one thing if we were trying things and they weren’t working, but trying nothing and just trying to cope with it is soul destroying. So glad it’s helped you. He is such a sweetheart but at times he’s so frustrated and exhausted, it’s awful to see.

[Pyjamaface]

DS has ADHD and takes Circadian and it has cut down bedtime from 4/5 hours to 1/2 so its really helpful for getting to sleep BUT it doesn't keep him asleep (I know it's not supposed to)

So we have better bedtime but he still gets up at anywhere between midnight and 6am and when he's awake, he's awake for the day

[PearlsBeforeWine]

Circadin was a life changer for us too, it took. Me 18 months and a crying fit in front of the paed to get it.

So he now does 12 hours a night. He was in 6 before the tablets, he was tired distressed and frustrated that he couldn't sleep.

[SinkGirl]

Thanks all. I’m going to ask - the boys are currently in bed while I watch on the monitor, DT2 won’t nap because he fell asleep for 10 mins at nursery just before we picked him up, which probably means another night like last night. Sounds pathetic but I just can’t cope any more - I have chronic fatigue as it is, I feel so low I don’t know how I’m going to get through the afternoon. DH works from home but he actually has to work and he doesn’t get much sleep either so he’s not in any better state than I am.