help with sleep

Submitted by becs3 on Sun, 10/26/2008 - 23:10.

General Chat

I have a 4 year old that has autism, epilepsy and left hemiplegia and our lives are becoming increasingly difficult as he refuses to sleep. he goes to bed at 7pm but at 11 he wakes up he head bangs the wall, bites his arms and screams i hold him to stop him from hurting himself and this can go on untill 4am i know it's because we wakes and feels uncomfortable bieng on his own and have tried laying with him and tried him in our room and bed but nothing changes,over tiredness seems to triggers his siezures so has many each day we have spoken to his dr but he says he has no suggestions we have a 2 year old and a 7 month old that was born at 28 weeks and we are all exausted! please does anybody have any advice???

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Submitted by Kitty on Tue, 10/28/2008 - 21:14.

Hi Becs,

I wish i had some advice to offer - i can only offer sympathy. I can't imagine what you must go through, it sounds extremely difficult.
how do you manage with 2 other children too? i struggled with just 2 children, never mind 3!

We have tried sleep clinics but we foudn they had little experience of dealing with sleep problems caused by health problems - they seem totally geared towards 'healthy' children who 'won't' sleep rather than 'can't' sleep.

do you have any idea what wakes your son and keeps him awake? our sons have poor sleeping through a mix of stomach/reflux pain and hunger (they don't eat properly and our youngest lives off a special milk a lot of the time).

i have tried techniques i've researched on the net but nothing has worked - things we've read about included playing music or a repetitve sound like a fan - have u tried anything like this?

our youngest is often awful at night and the way i cope now is to expect less sleep and stop trying to get him to sleep through as it causes more stress when we fail. I now just sleep with him and soothe him as best i can. some nights i've even put the tv on and let him watch cartoons whilst i doze. i'm guessing this wouldn't work for your littlun?

has your doctor ever suggested medication they can prescribe that might help your son sleep or would you prefer not to do this? i know a lot of medical professionals don't like doing that kind of thing but it would give you the odd night of sleep?

i'm sorry i haven't been any use. I used to do voluntary work with children with Autism and it is an extremely distressing condition and i really feel for you and your family. you must be such a strong person to cope with all the problems you have.

Whilst i can't offer much help - i am happy to be a listener for you if it would help. sometimes i've just really needed someone to tell how crap things are and it's helped me to know other parents are having a really hard time too!

take care,
K

Submitted by becs3 on Tue, 10/28/2008 - 22:05.

Hi Kitty, Thankyou for your reply! we have no idea what wakes him , although the doctors say they think something neorlogical(sp) is going on that wakes him though untill he has some more tests they can't be sure. We did ask about some medication but beacuse of the drugs he has for epilepsy he can't have anything. I've tried playing music but he didn't like that and also tried t.v and music videos but at the moment nothing seems to help. It's quite hard with the other 2 and working full time but i suppose it could always be worse! He is having some more tests and we see the the neorologist next month so hopefully they can tell us something,
Thankyou for your kind words and for listening.
Take care
becs x

Submitted by soupdragon6 on Tue, 12/02/2008 - 12:32.

well, I'm not impressed with your Dr's comments. is there another at your surgery you can see?

waking at night, at any age, becomes a habit, I can't believe your doctor did not say this. And obviously, as you say, he must be exhausted which does not help with his conditions.

It is not a route than any parent would wish to take, but there is herbal medication available to help him sleep - I realize that he is possibly on much medication already, but hopefully this will not be for long term use.

you really have a lot on your plate; and sleep deprivation for yourself is the last thing you need - my children are all teenagers now, but I did have 4 under 4. My eldest, also a prem baby at 29 wks, was 3/6 and my middle one 18 months when I gave birth to twins - lack of sleep was no joke and I have every sympathy for you.

Go back to the GP - see another if you can, and insist on more help.

If you are interested local colledges are often looking for work placement homes for students in their last year of child related courses.
It might only be for 3 hrs a week - but it's 3 hours to yourself that you can use to catch up on sleep.

Natalie

Submitted by Kitty on Fri, 12/26/2008 - 20:29.

Hi Becs
I was just wondering how you are getting on? Have you managed to get any help from your doctors and have you had the tests done by your neurologist? are you still having the same problems at night?

I hope your Christmas was good.

Kitty