My 5 year old has been awake for 18 hours and counting

[Nofunforthewicked]

He's got a chromosomal disorder and disordered sleep is a part of his condition. I am just praying that he sleeps tonight because I am knackered even if he's not but when he gets into this pattern it can last for weeks. I love him to bits but this is really hard.

Huge sympathy

I was once so desperate (AuDHD) I gave DS piriton. He had it due to an allergic reaction one time and I discovered it made him sleep.
Yes I know using it not for purpose isn’t ideal, but there was a huge risk I was going to break mentally, which wouldn’t have been good for either of us!

Will they not prescribe melatonin in your circumstances? We did get it eventually, but not until DS was around 7 iirc, although it didn’t work that well for him tbh.

Good luck!

I really feel for you. I just found your post while desperately searching for stories of older children not sleeping - there’s loads of threads about babies and toddlers but far less past the age of 4.

My kids don’t have SEN so apologies if this is glib but I’m at my wits end as well. DD started sleeping though at 1, but had a hideous series of illnesses which meant in practice I didn’t sleep at all every other week for a couple of years. She finally seemed to get more immune and just as she started sleeping through I gave birth to DS, so another year of sleep deprivation ensued. Just as he started sleeping through at 18 months, DD herself then had some kind of regression and started waking again after a good couple of years of sleeping through. It started off just once in the early hours but over the months has increased. Last night was the worst yet - she was awake 1 hour after dropping off, then again every 2/3 hours until DS woke at 5.15am.

It isn’t as simple as letting her get into bed with us - she sleep talks and rolls around and it’s impossible to sleep with her there. If we don’t let her in she screams and cries and wakes DS.

I’m absolutely on my knees and a horrible snappy shouty mum during the day as I exist in a haze of exhaustion. It never occurred to me that I would still be in this rut after 6 years.

Here to listen if you want a longer vent!

Thank you both.

@ThisBadTimeIsTakingForever he's tried melatonin, it didn't work. He goes to sleep easily, it's getting him to stay asleep that's an issue. He's also on lots of other medications including two different anti seizure medications and gabapentin for pain management, he's probably on enough to knock out your average bull but I guess his system is just used to it all.

@Bigpinksweater Not glib at all, sleep deprivation is sleep deprivation and it sucks so I feel for you. It's the relentless of it isn't it and the going to bed knowing what the night holds.

Yes similar to your DS, DD is okay falling asleep but it’s the staying asleep that’s the problem.

Yes I have a feeling of dread as night approaches. I try to go to sleep at the same time as DD but I haven’t slept properly in so long I feel like my body is now stuck on wakefulness mode. I lie there and even if my body feels exhausted my heart hammers and I just can’t drop off. I caught sight of myself in a bright light mirror today and was shocked by how old and washed out I look compared to even a few years ago.

I’m worried at some point I will really snap and start screaming and swearing at her to go back to sleep because tbh that’s what is going on silently in my head.

Has he ever had a good sleep stage, or has he been wakeful from day 1? Do you have a coparent?

It's just me and him, sleep has always been an issue on and off since he was born. We did have a good spell for a few months which lulled me into a false sense of security and I do get some help from our local hospice, he goes to them for a couple of nights each month but I usually find I spend the first night in bed thinking I can hear him cry 😫but the second night I do manage to sleep.

Have you tried all the pillow sprays etc?

It must be extra tough as a solo parent. DP is here with me but letting one deal with it for a night doesn’t work - the moment she shouts out or comes through I’m awake even if he takes her back or is in with her. At weekends we both take them out for a few hours separately so the other can nap but we have no extended family and we don’t have ££ to pay somebody to take them overnight as well as paying for a hotel room or similar for ourselves.

So far we’ve tried later bedtime, earlier bedtime, no TV at all, lying with her, leaving her to self settle, letting her drop off in our bed (mistake!), we have a solid routine of bath and milk each evening that happens anyway, making sure she gets plenty of fresh air and exercise, limiting sugar… basically everything apart from meds. I wondered if it was an anxiety thing but we had no changes at the time she started waking again, and her life is very small and predictable so I think I would know. The only clue we have is when she wakes up she’s convinced she never dropped off to start with, and will insist she’s been awake all night, she doesn’t say she’s had a nightmare or anything.

I’m already dreading the night ahead. I have a high level chronic illness and on multiple meds a day, and this has been exacerbated by exhaustion to the point I’m signed off work and terrified of losing my job.

It’s just so awful. How often does DS wake per night? Does he settle reasonably quickly or does he stay awake?

Do you qualify for carer support?

Do you have anyone who can watch him so you can get some rest? Appreciate that may be difficult depending on his needs but if you were a daughter/sister/friend of mine I'd absolutely be willing to come over so you could get some sleep.

Have you tried background noise to see if it helps? Our Tonie box is a great friend, I have a couple of characters that play for hours which allow me to nap when he's awake so long as he doesn't set off his O2 monitor. I can usually tell by his heart rate if he's going to sleep until around 4 or be awake before midnight, he's not verbal (functions at around 9-12 months) so I can't ask him what's woken him but once he's awake, he's awake.

@CaseStudyResearch we get support from our local children's hospice as he's considered life limited.

@Nofunforthewicked I honestly feel for you, this is so tough.
I highly recommend Kerry who is thesleepfixer.com. She is amazing and highly experienced in resolving sleep issues for children with complex needs. Her prices are really fair and she is so genuine. If you can both get decent sleep it makes life so much brighter.

@Seelybe thank you, I will take a look. I wasn't sure if anything would work as he functions at a much younger age than his years.