2 nights of no sleep at all

[CherryAndLimeMum]

Is it unreasonable to feel like a zombie and be almost unable to function after 2 nights with no sleep at all. I’m a single mum. My 9 year old DD (she’s autistic) often goes 2 nights without sleeping at all which means I can’t sleep either! DD usually goes 2 nights (and she won’t sleep or nap in the day either) without sleeping and then sleeps really well on the 3rd night and then goes another 2 nights without sleeping and so on and on. After the 2 nights of no sleep I often feel like a zombie and can barely function with the sleep deprivation, I still have to work in the day as well whilst DD is at school. This has gone on for years and I’ve tried so many things to help get her in to a better sleep routine but nothing works. She’s also already on the highest possible melatonin dose as the paediatrician won’t give her a higher dose. The sleep deprivation and exhaustion is killing me! AIBU to feel like this?

Take everything out the room that might break a window

Melatonin at least up to 6mg - can get in other ways if not prescribed. It’s over the counter in loads of countries .

And / Or piriton 4mg - again it’s over the counter

Or promethazine / Phenergan 25mg.

Don’t give up. There are plenty more feasible options.

We’ve gone up to 10mg of melatonin (on the consultant’s advice). It means he falls asleep at 10pm rather than midnight, but he still wakes up at 1am and stays awake until 5am ish. Piriton does nothing, and the consultant won’t prescribe anything else.

I don't have much helpful advice because I don't have the experience but I think if this was me, I'd be moving into one bedroom together and finding a way to 'baby'proof it so that it's as safe as possible for her to be in with minimal supervision. This may involve you sleeping in the doorway, having motion sensors or pressure sensors with alarms, having baby gates and locked windows etc. Whatever it takes. Then I'd work on getting her to engage with restful activities like mindfulness colouring or listening to an audiobook during the nights so she doesn't wake you and she also gets some rest (appreciate this may not be possible). Then I'd be lightly dozing alongside her as much as possible during the night. I don't doubt you'll be half awake, because I'm the same with my young kids and I think most mothers are in a permanent state of readiness even during the night. But if you've assured yourself she's safe enough then you can at least shut your eyes for a little bit.

Sleep deprivation is awful. I suffer from insomnia myself. Can she be prescribed any medication to take on the 2nd night so you only loose one night at a time ( this is what I do when it’s really bad)

It’s just appalling they don’t take it seriously. I feel very strongly about this because I did become very unwell just from sleep deprivation that was severe. There are absolutely places they should be referring people to and that exist for these reasons. There are paediatric sleep specialists.

Yes, I know there are, and we have paid (handsomely!) to access these services. The NHS couldn’t care less though. Our paediatrician’s exact words were ‘well what exactly did you expect with an autistic child?’ when I told him I’d had 10 hours sleep in total across 7 nights.

My child is 14 and finally sleeps, thank god, I honestly never thought it would happen. She got better with additional medication and I was worried because it doesn’t solve the root cause and I was scared she would be on it forever, but it did seem to be a developmental thing for her, where it just came later (around 11). She’s now down to 1mg of melatonin.

It’s appalling that parents have to push so hard. I have very strong feelings about it because I have lived experience of the way severe sleep deprivation can be life threatening. It’s just not taken seriously enough. There are referral pathways that GPs should be able to offer — community Paediatrics, child mental health, and paediatric sleep specialists can all do work in this area. What sort of dire circumstances have to be occurring to make that happen, I have no idea. I’m not sure what someone does if other medication doesn’t work, but it sounds like the OP hasn’t tried this yet and given how bad her situation is I think it’s at least worth trying, even if only for the nights immediately following a night if no sleep so she doesn’t have to suffer through too many in a row.

It’s terrible. Particularly given these sleep problems have usually occurred across the child’s whole life, so you’re actually talking about mothers with maybe a decade of sleep deprivation behind them. What do they think is going to happen in that scenario?

I don’t know. I haven’t slept a full night in 7.5 years. I had to give up my very well paid career, that I worked very hard for, as it was just impossible to manage. I now get £330 a month carers allowance. I have no life, as I’m awake for the majority but of each night with my son, and in the 5 hours a day I have free in between school runs I catch up on sleep and all the admin I can’t do with him around.

Do the national autism charities offer a support helpline and/or tips on sleep?

Could social workers arrange an overnight carer or stay for DD at a home for children with severe disabilities once a week so you can sleep?

Try Phenergan. It's an over the counter antihistamine that causes drowsiness. It's also for other things like travel sickness.

My autistic daughter who also has sleep issues says it often works well. Melatonin doesn't often work for her but Phenergan usually does.

I don't think regular use is good but every so often when you're most in need could help. My DD finds it can help get her back on a more normal sleep pattern.

I agree, I've an 11 year old who doesn't sleep, GP won't prescribed melatonin, just said it's not a thing that is prescribed for children in England

On the nights she does sleep how long does she sleep for? Could you shorten that and maybe she would be tired enough to sleep more often. Any family who would take her for a night?

I agree.

Something absolutely has to be done to end this.

Whether it’s funding to pay for someone to be up with her some nights, some better medication, a safety bed or any combination of the above (or other solution) you can’t go on like this.

It is incredibly dangerous but must be terrible for your mental and physical health.

My dd basically didn’t sleep at all (unless being actively soothed or pushed in a buggy) for some months as a baby due to a heart condition. It was utter torture, and I found I couldn’t remember really basic things from day to day. You hear people speaking from war zones etc who are going through that kind of sleep deprivation. It’s just not sustainable.

Is there a respite home option? Sorry if that's a dumb question. It's just her autism seems very severe that she needs 24/7 supervision. I'm sure you and her would rather be at home but if there was somewhere she could go for a few nights to give you rest you shouldn't feel guilty about this. Its also bad that her medical team won't prescribe a sleeping pill. It's really concerning for your health OP. No one should have to live like this. Pls do anything you have to to help yourself even if it's not putting her needs first for a while.

I don't know about OP but my son is very verbal, intellectually able and in mainstream school. He is however also impulsive and emotional and gets dysregulated when underslept. Actually improving his sleep with melatonin improved everything for him, I often wonder if a solution was found for the sleeplessness of some children would their overall care needs reduce? Melatonin for us is an absolute life saver.

Can you find a PA or babysitter who does nights?

DS7 has a PA after school twice a week (he’s autistic) and I know she does nights for some of her clients - both waking nights and sleep ins. Perhaps once or twice a week of somebody doing that would help? You might be able to get direct payment support to fund it. We use DS DLA to pay for his.

sending love - it is so hard parenting sometimes and sleep deprivation is awful.

Also, try lower doses of melatonin as high amounts can actually be counterproductive. It can mess up the sleep signals and circadian rhythms even more.

DS is prescribed up to 6mg but I’ve found 3.5mg to be the sweet spot for him…. More than that and it seems to be less effective which is weird.

It may seem daft to reduce the dose but worth considering.

You poor thing this must be terrible and I can’t imagine how much your physical and mental health is being affected by this chronic sleep deprivation. I’m not sure where you are in the country but pediatric sleep specialists do exist. Some of them can’t be referred to by GPs and you would have to be referred by a paediatrician. If you are near London there is a great clinic at the Evelina run by Prof Paul Gringas. If you have any energy at all for this (and I know how utterly frustrating it is to try and get help for a child with additional needs) then have a look and see if there is anything available in a big city near you then push for a referral.

There are studies that show that high melatonin doses often have the opposite effect. I also have an autistic DS and he is on the lowest melatonin doses (0,2 mg!) and it works really well. It has something to do with how you metabolize it and apparently the high dose van cause excessive wakefulness. If i can find the article i'll post it!

Hope you will both sleep better soon!

Respite care is almost impossible to get. My son is profoundly autistic and doesn’t sleep. We asked for social care support around 3 years ago as I was suicidal due to lack of sleep/support. After multiple rounds of assessment we were awarded respite care… 4 hours a month, on a saturday morning.

I'm sorry if you think it's a 'stupid question'. Personally I think that type of father should be charged with child neglect, but that's just me. Seems perfectly acceptable for men to behave like cruel feckless cunts with zero consequences.

I don't blame young women for deciding not to have children. The double standard around parental responsibility, particularly where disability is concerned, wrecks women and children's lives.

I agree. But the father’s absence cannot be blamed on the mother.

I knew a girl who had SEHM and autism and was the most violent, deregulated child I’ve ever met.

The dad refused to give her anything to help her sleep for years as he didn’t want to medicate her unnecessarily.

He eventually gave in and gave her the sleep medication and honestly she was a completely different child!

I have never seen such a difference in someone.

I think in some countries things like melatonin are used more frequently and so it would be interesting to see if they have less problems than we do.

It wasn’t a stupid question.

If OP had said he lives at home but works nights etc then we could give advice based on that.

It’s the fact that he’s not involved that makes the biggest difference as she can’t nap or take turns sleeping at night.

It was a very valid question.