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Anyone have advice on ASD and sleep problems please?

(19 Posts)
siblingrivalry Mon 03-Aug-09 20:52:22

Hi
DD(8) has AS. She has always had sleep problems, but lately it has become a bigger issue.

She panics before bedtime and will cry and say she hates bedtime/she can't stand it any more. It takes her hours to fall asleep and she struggles to sleep through the night. She is also an early waker.

Tonight, she felt physically sick and looked dreadful. We are at the stage where she is totally exhausted, which has a knock-on effect with her mood and behaviour.

I feel so helpless, because I don't know how to help her. We have a bedtime routine and have done all the usual stuff -relaxing bath/ warm drink/ no TV etc. Due to her sensory issues, things like lavender on her pillow are a no-no. We have made sure that her bed is comfy and that her room is 'right' for her, as well as trying relaxation techniques.

I have to just throw my hands up now and admit defeat; I just don't know what else to do. Is this a common problem amongst children with ASD and something we just need to live with?
I would be so grateful for any advice or views.
Many thanks.

lou031205 Mon 03-Aug-09 21:12:17

Have you tried melatonin?

misscutandstick Mon 03-Aug-09 21:18:38

we have resorted to gentle dvd's and gentle music. They (DS4 and DS5 who share room, aged 3 and 4) tend to fall asleep around 10pm (and are up again around 5.30am with many disturbances thru the night, so absolutely understand how tiring it is).

The deal is they watch what they want to until around 9.30pm and then the last thing to be put on is 'the hungry caterpillar' (its got music and stuff on it too), after that the tv goes off.

But we have had this routine for about 2yrs now and it (keeping everything crossed not to jinx it!) seems to work well, theres only a few nights here and there where we have to relent to sticking the TV back on for another couple of hours.

perhaps something similar may help? perhaps an MP3 player or something?

siblingrivalry Mon 03-Aug-09 21:36:16

Thanks for replying. Lou, I've read a lot on here about melatonin, but know nothing about it. Can it just be given when we dd is desperate for a decent night's sleep, or is it given nightly?

Misscut, I had really high hopes of the MP3 we bought. However, she couldn't cope with the earplugs and the only other suitable ones (think 70's DJ style)were too heavy for her.

I think we may have to follow your example and let her stay up later, until she is really drowsy. Maybe we have been unrealistic expecting her to be able to settle herself to sleep. She didn't sleep for more than 2 hour stretches til she was 3 -I lost large chunks of my life; felt like I was in a permanent daze!

BONKERZ Mon 03-Aug-09 21:42:36

my ds has struggled for 2 years with his sleep patterns, at first he just could not sleep through and would wake at horrid hours and turn lights on and telly on etc, then he started falling asleep and would wake from 11-2am! then is progressed to not being able to fall asleep at all, he would go up to bed at 7 and still be awake at 11pm. This was all having a huge effect on his behaviour and his anxiety levels!
DS started melatonin nearly 2 weeks ago. for the first week he took 2ml and upped it to 4ml last thursday, for the past 2 nights he has been asleep from 8pm and slept till 7am which is fab......
before i gave in to giving meds for his sleep patterns i tried everything, we removed all stimuli from his room and made his bed just for sleep so he had a beanbag on floor with books and mp3 player with calming music, we stuck religiously with his already rigid bedtime routine, we tried aromatherepy, lavender oil....i think you get the point....

lou031205 Mon 03-Aug-09 21:49:09

It is a synthetic version of the natural hormone. It can be given every night. It has a tiny half-life (about 45 mins) so there is no cumulative build-up.

It has been life-changing for DD (3.8). She would spend the entire evening crying about being in bed. We would spend the entire evening trying to keep her in bed. Exhausting and distressing for all. Within 10 minutes of having 2mls Melatonin, she asks us to go to bed.

beverleyjayne Mon 03-Aug-09 21:58:03

sb, we have also been through this with our dd. she had a really bad few months were she was hysterical at bedtime and would just sit and cry and worry about sleep and not getting to sleep and about the next day at school etc.

in the end i would go in and sleep with her as she just looked exhausted and virtually on the edge of a breakdown. our gp gave her valergan, and also put her on propananol, betablockers, to try and calm her a bit and take the edge of her anxiety. not sure if it helps or if we are justlearning to cope better, but when the rest of the house is going to bed, dd is going in to the skyplus to put the simpsons on for her to watch. its as if she cant sleep now,and she doesnt sleep to about 1 am but i think that is quite common in aspergers children.

bev

siblingrivalry Mon 03-Aug-09 22:00:15

Bonkerz, dh and I have wry grins reading about all of the things you tried - deja vu smile
Her anxiety levels are through the roof and I am really worried about the effects her fear of bed-time are having.
I think we may look into melatonin.
I have no idea why I am so nervous and over-cautious, but I expect that it is something we all go through.

Lou, thanks for the info. I feel reassured that it is just a synthetic version of a natural hormone -I thought it was a kind of sedative blush
I have worried about her being 'hung over' the next day, but that doesn't seem to be an issue?

I'm so glad it has transformed things for you and your dd -I love hearing positive outcomes.

DD's psyc has been talking about ADs (she's 8 FGS) and I said that I will try every other route first. Maybe if we can sort out her sleep and night-time fears, we can pull through this rough period.

She's asleep (!) in our bed at the moment. DH lay next to her and he said she cried herself to sleep sad

siblingrivalry Mon 03-Aug-09 22:06:40

X post, Bev, sorry.
I can see a lot od my dd in what you say about yours.
Our GP reluctantly gave us Phenergan for her, but it didn't really work because she still took forever to fall asleep.

We think dh also has AS and doesn't go to bed til after 2am -MIL says he never went to bed before midnight as a child. However, she says he coped fine with that.

Problem with dd is that lack of sleep makes all of her sensory issues and anxieties much worse. In your post, you said your dd looked virtually on the edge of a breakdown. Thats's kind of where we are now -isn't it devastating to watch and not really be able to help?

I think dh will be on the sofa tonight - I can't risk moving dd out of our bed!

BONKERZ Mon 03-Aug-09 22:14:49

i actually spoke with my DS and asked him if he wanted to sleep better, it was a very long chat with him, hard to describe the convo really cos although he is 9 i had to explain things as if he was 3! Ds actually came with me to the pead and told him he wanted to sleep better because he was tired and didnt like being told off for being awake. I think if its reached a point where the sleep is affecting daily life its time for meds. the thing that did swing it for me is that its just a boost really of a naturally produced product. DS actually gives himself his melatonin at night now (obviously i open the bottle and i check his measurement!) but i find because he is in control of it we dont argue and he takes it fine.

beverleyjayne Mon 03-Aug-09 22:18:01

sb i so understand how you feel, what age is your dd, sarah is 10 and everyday i can see her anxiety in her face. even when she is off school there is still anxiety in her poor wee head.

i know that when sept comes round again and dd has to go back to school, that she will find that really hard. dd has been told that they think she has aspergers but she doesnt seem to want to accept it, i am hoping in october when we hopefully get the offical dx that it will help her a bit and she will start to understand why she feels the way she does. i honestly did think that dd was on the verge of a breakdown and know that it will prob be as bad as that again come september, but hopefully we will get through that again and come out the other side!!

feeling positive tonight, must be the wine lol

bev

siblingrivalry Mon 03-Aug-09 22:27:53

Bev, dd is 8. Due to being in a crappy school, we started to home-ed her in January.However, she is going to a new school in September.

She keeps saying she can't wait, bit the worry is etched on her face and I totally understand what you are saying about your dd getting worse in September. I hope things go well in October -let us know.

Bonkerz, I think it's great that your ds spoke up for himself with the paed. DD is also more likely to cope with something if she feels she has some control over it.

We are at CAMHS in 2 weeks, I am going to ask about meds. Thanks, everyone.

lou031205 Mon 03-Aug-09 22:35:47

siblingrivalry - no hang over. Melatonin is produced by the pineal gland in the brain. It naturally releases as the day gets darker. It's part of why it is harder to sleep in the summer months. The medication just boosts the level of melatonin, so your DD gets the message that she is tired, over and above all the other competing messages.

siblingrivalry Mon 03-Aug-09 22:55:50

Ah, that sounds good.I feel much happier about melatonin now. Thanks again, Lou.
I just want her to be able to get to bed-time without panicking and stressing. She was awake til after 12 last night and was up for good at 7.15.

wigglybeezer Tue 04-Aug-09 12:10:19

You mat think my suggestion is a bit daft but DS2 (mild As) had great difficulty getting off to sleep (kept getting up and appearing at the door, eventually getting quite upset), until he had the idea of wearing an old airline sleepmask, with the bedroom light still on, the combination of lit room but personal darkness works really well for him. He says that he can't see things lurking in his bedroom out of the corner of his eye anymore. He also shares with his little brother as he doesn't like to sleep alone.
Have you tried the "What To Do When You Dread Your Bed" book , it is aimed at your DD's age group.
In some children Phernergan has the opposite effect to the one desired, watch out!

siblingrivalry Tue 04-Aug-09 17:16:42

We will try that book, wigglybeezer, thank you. We have another one out of that set -'What to do when you worry too much', so I'm pleased there's a more specific book.

I have tried the eye mask -she said it itched her (sensory issues) so that was abandoned.
I'm glad it helps your ds, I always love to hear about parents finding solutions!

It's getting to that time again and dd is getting stressed about bedtime sad

bubblagirl Tue 04-Aug-09 17:42:03

i will second melatonin we have it for ds who was another not wanting to go to bed only getting 3 hrs a night we were at breaking point as behaviour and sensory issues worsen to the point no one can function leave the house etc

we give it 30 mins before bed go in read story he'll be asleep by the end of the story no tears no tantrums just peaceful sleep

its natural he doesnt have any side affects from it and his sensory issues are virtually non existent now

does she say why she doesnt want to go to bed does something bother her in her room could it be changed round for eg she could say where and what she wants

we did ds room it made him calmer to go to bed he wanted bed away from window but obviously melatonin solved the not falling asleep issue

our gp wouldn't prescribe so you may just want to contact paed about it hope she settles better

another thing my ds was dx with night time separation anxiety we have made a bed up on our bedroom floor when he wakes in night he comes in and sleeps on that so not in my bed but is near enough to me to settle back off with no fuss

we just make sure he goes to bed in his bed so if he does sleep through then its in his own room hoping to break the separation anxiety

porgie Wed 05-Aug-09 12:55:44

MELATONIN, IT'S THE FUTURE I'VE SEEN IT!!!!!!

After months and months of DS going to bed at 11 or 12 waking during the night and then getting up and being horrible during the day, possibly sleeping for 3 hours if he got the chance. We also have a DD1 who will often wake during the night! We started Melatonin two weeks ago and we have our sanity back.
We tried modified release first but the little balls were travelling straight through him and not absorbing!We are now on regular capsules which we empty into yogourt. We give about 6:30 and he is asleep without fail by 8:00 at the latest!
He is up bright as a button at 7, no drowsiness or moodiness. he doesn't sleep at all during the day.
Hubby and I can eat together do jobs and whatch TV if we want, its amazing, give it a go!!!!!!!

eternalmother Wed 05-Aug-09 20:42:23

We too have found melatonin to be the answer. Settling to sleep used to take up to two hours for us with DS (5) who has AS. We were going to go on a melatonin trial but it was a blind trial and they wanted us to try all the usual sleep/behaviour therapy first which we had already done to death over the years. In the end we "obtained" some liquid melatonin (from the US which DS has in his bedtiime milk (2mg) he has his stories and is asleep within five minutes of finishing, he also asks to go to bed. Next challenge is getting him into his own bed wink

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