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?

I'd give her screens for a few hours, out of pure desperation. There's no point in you being ill and in danger for the sake of limiting screen time. I wouldn't let her watch all night, but if you could at least get a block of four hours you'd feel somewhat better.

I’ve already tried keeping a sleep diary and then showing the GP unfortunately.

Nope, her sleep is the same year round unfortunately.

I don't understand why you can't sleep? What is she doing that means you cannot sleep at all during this time? I am not being arsey - genuinely want to know.

Do you have trusted friends who could come to your house to look after her from say 6pm to 11pm while you sleep? I would 100% help you if you were my friend, it sounds absolutely awful.

Can you call in sick occasionally and sleep while DD is at school?

Can you tell us a bit more about the behavioural issues which mean she’s not safe to be awake without you also awake? Autism is such a wide spectrum that any ideas anyone could suggest to help might be completely inappropriate for your DD.

I would be going back to the doctor and asking about other options because the melatonin isn’t working and it’s not good for the health of either of you. Obviously it’s also dangerous for you to drive and you need to be able to concentrate on work and other things. You must be an amazing person to have coped with this for so long

Wow! Heartless AND unhelpful. You obviously just have no idea do you?
If only it was so simple.

She throws everything, tries to throw things at the windows to break them, she’s at risk of accidentally hurting herself. But also sometimes she just sometimes stays in her bed quietly and says she just can’t get to sleep. Amongst other things and other behaviours. It varies massively to be honest, it’s not like it’s the same each night other than her always going 2 nights without sleeping and then sleeping a night and then going another 2 nights without sleeping and so on.

I’ve already done that unfortunately. It’s exhausting and it’s killing me, I can’t explain how bad the sleep deprivation is.

Tried Promethazine? Knocks me out and kids can take it. Don’t need a prescription.

DLA, a social care referral and back the doctor with more evidence. You could lose your driving license or worse, kill someone driving that tired.

If she already gets DLA could some of it go towards a few hours a week of an evening carer so you can get some respite and a bit of sleep?

Has she tried Phenergan?

You have my complete sympathy by the way. I understand the situation you are in. It isn’t the same as having a neurotypical child awake that you can leave alone. It’s something you have to have lived with to understand. How long have things been like this?

I used to do care work with adults with learning disabilities and we did sleep-in nights and would make sure people had safe rooms to be awake in with an alarmed mat by the door that would go off when they left the room in order to allow staff to sleep some of the time. Is it possible for you to do something similar-set up her room and window, hinges, etc so it's completely safe and you can get door sensor alarms/mats that would wake you if she left the room. Also there are many drowsy antihistamines that are safe for children, a nurse recommended piriton to me before. I personally take a kwells travel sickness pill, the kids chewable type and they send me to sleep when I have insomnia, they are a safe medication for travel sickness that can cause drowsiness as a side effect.

Thanks for the extra info - massive sympathy and you must be on your knees. It sounds like a safety sleeper bed is definitely something to be looking into for her own safety, whether you're awake or not.

I'm assuming you've already cleared her room to lock away anything she can reach that's throwable that could break the windows? Like, leave out stuffed toys and things but maybe also heavy curtains over the windows and shatterproof film on the glass so you're not worrying about that at least.

I know locking the door is a really contested issue because of the tradeoff with her safety at night vs potential fire risk but how about a half door, or an extra tall stair gate just to remind her that she has to stay in her room at night? My neighbour has one that's 110cm.

Try Mirtazapine which GP prescribe for sleep and it is non addictive. Or Piriton drowsy over the counter if you want to try something

It’s not that simple unfortunately.

You need a day off work to sleep while she is in school.

You really should not be driving on no sleep. That's so irresponsible.

Gosh that sounds so difficult hope you been find ways to improve things.
Wonder if you got a babysitter/student type person one of the nights to stay up with her? Or any charity they does rest bite
Do you both stay in one room any option to lock door therefore be safer? How do you actually stay awake

I can’t afford not to work unfortunately so that’s just not an option.

Is there any option to pay for a babysitter for a few hours a night so you can sleep at least part of the night? Do you get any sort of bemefits e.g. PIP for your daughter that could help with this?

Im so sorry, I found having a baby waking hourly pure torture so I have no idea how you are surviving this - you're doing amazingly well to function at all and I really hope there's a solution you can find.

I hope this isn't offensive, but if melatonin isn't working then can you use any stronger sleeping tablets to get her to sleep even 1 of the 2 nights? (Obviously under medical guidance). It doesnt seem right that youre just expected to cope with no sleep.

This. Sleep deprivation on this level (multiple nights in a row with zero sleep) is seriously dangerous. Not just for driving but for your mental health. Not sleeping can make you anxious, even paranoid, and eventually can make you psychotic. It is to be taken very very seriously. Your GP needs to be helping you look at other options here if she is on the highest dose of melatonin. You need to be referred on to a specialist.

What does she do when awake?

I have a non sleeper, not quite the same but at 6 he'd still be awake at 1am, bouncing off the walls then doze an hour here or there until 4/5am. It was awful. The sleep deprivation unless you've experienced it is indescribable and it's worse than with a newborn because noone believes you've really truly not slept for 2 consecutive hours in 6 years. People assume yorue exaggerating. I know you're not exaggerating.

The reason I'm asking what she does is if this is her sleep pattern and nothing helps you may need to find a best case scenario to allow you to sleep. Thank God my sone esponds to melatonin a d now will sleep 10-6 most nights mon-fri. Then back to his usual antics at the weekend and we have melatonin holidays to avoid resistance building. He's also almost 9. For us if he wakes stupidly early a s I've work the next day then he will sometimes play Lego or watch TV while I continue to doze but that's only been safe for around a year. Even before that though I could let him have a tablet in bed beside me and watch a cartoon..that said he would lie by me reliably on these days so I was confident he was safe. And we were way to desperate to give a hoot about screen time at that stage.

That said melatonin doesn't work if they have any screen time after taking it. We have a strict all screens off, take meds, have bath, build Lego or draw or read or be read to or listen to music then wtf in bed and cuddle until asleep routine. Any deviation from routine and sleep doesn't happen.

Sorry if none of that helps it's just what we've found works. Thank God there are 2 of us but there's also a younger sister so we're juggling 2 bedtimes and sleep disruptions. Her sleep patterns are much more age appropriate as are her behaviours when she wakes thankfully

I'm a single parent to 2 Autistic dc.

They were like your dd when they were younger.

I couldn't go 2 nights without sleep as I had a younger dc so I made the house safe for the boys to move around without me.
Every door was locked apart from their rooms and the toilet.

They rarely leave their rooms at night now. They still have sleep issues and probably always will.

GPs dont even prescribe melatonin.

In 21 years with 2 dc who rarely slept a whole night, I've never met a GP who helped or eve had a helpful suggestion.

Can you sleep in a room with just mattress on floor and nothing to throw and lock the door. Sleep in there with her. Give her an iPad (in rubber case). Can you change the windows to plastic? Can you lock them?