My Son - Oliver.

nadine1977

Hi everyone, My Son has not long turned 6, he has a disease of his gut, his bowel doesn't function properly and they now think he has autism or aspergers. He is under gastro Drs at our local hospital and Dr Lindley at GOSH. He is very behind at school, just cannot concentrate and grasp the work, since Friday he has started to hum?! Its even in between sentences, is this normal? He doesn't sleep until very late every night- just fallen asleep! says he can't turn his brain off, he is very upset because another child at School last week touched his new coat! He doesn't like wearing new things, won't wear any shoes apart from his School shoes! He wears pull ups because of his bowel condition, he is very embarrassed about this now as some of the children are calling him a baby. He will talk to an adult but he talks very loud and goes straight in with explaining something in great detail (with a lot of hand gestures) this can be a programme he likes or a toy. Likes time on his own. I just really would like to know what I can do to help Oliver, I don't know anything about the conditions and feel with each day more desperate. The lack of sleep is absolutely awful, I cried tonight! His teacher said she thinks he might have autism and be dyslexic, is this commen to have both? Oliver had meningitis when he was 7 and a half months old and we were told he might have some issues as his brain swelled so bad. So sorry for going on!

nadine1977

Eosinophils - Oliver also has this xx

Alex

Hi @nadine1977,

Welcome to the community! I've moved your post into our sleep expert group. Hopefully @SleepPractitioners can give you some useful advice about the sleep issues your son's having.

nadine1977

Thank you so much, pretty desperate tbh

SleepPractitioners

Hi @nadine1977
You haven't said what pre-bedtime routine you have in place, it is very important for your son to have a wind-down time, the activities in the example routine will help him switch off. http://www.scope.org.uk/support/families/sleep/routine
You say he isn't going to sleep until late every night so we would say the time that he is generally falling to sleep e.g 11.30pm, make his bedtime (don't worry this isn't forever) start the bedtime routine at 10.30pm, you need to wake him at the same time every day, this will result in him becoming more tired as you are restricting his sleep, this will strengthen the sleep - bed association. Once he is falling to sleep quickly at 11.30pm you can gradually start to bring him back in 15 minutes increments every 2 nights until you get to the point where he starts to take longer to fall to sleep when you get to that point stop, you will have found his natural sleep requirements.
We hope you get the support with his medical issues. You say he is behind at school I hope they are looking into an EHCPlan for him as this will give him the extra support he needs whilst there.
Good luck with everything
Maxine and Angie

Sam_Alumni

Hi @nadine1977 where abouts are you? There are Scope Information and advice workers dotted all over the UK who may be able to help and we can put you in touch with the one nearest you.

You could also look at the Service Directory here.

nadine1977

Thank you so so much, I really appreciate your advice and will put it all into action tonight. I live in Harpenden, Hertfordshire x

nadine1977

GOSH are saying they want to do botox injections into Oliver's bowel because at our hospital appointment yesterday they found he is severely compacted! Does anyone know any information on this please - success rate, recovery? Thanks in advance and sorry for all the questions. Nadine

Sam_Alumni

@Mickey @Jackie @Ten @InformationSupportWorker can anyone offer any support to @nadine1977 - she lives in Hertfordshire.

nadine1977

Thank you so much Sam x

Sam_Alumni

Does the advice from the @SleepPractitioners help you at all? Do you have any other questions for them?

nadine1977

Yes thank you, we started to try things that were suggested last night. He still didn't fall asleep until Midnight but seemed to sleep a bit better. He is having to have a lot of very strong laxatives atm so wakes up with pain and needing to poo! He says he can't shut his brain down and seems to become very excited around 7:30? I have 2 elder children (20 and 19) and have never seen them like this

Sam_Alumni

My son is neurotypical and had issues with winding down, we went through some relaxation exercises before bedtime (deep breathing, stretching and relaxing muscles etc) and had a no screen rule for a couple of hours before bedtime. I understand that my son didn't have the bowel issues and ASD so I know it will be different for all kids.

What is your bedtime routine like?

nadine1977

We stop TV an hour before bed, bath him, stories and a drink then lights off but he sleeps with me! He has very bad anxiety all throughout the night and often has pain in his stomach and bottom, me and my husband sat Oliver down yesterday and explained we're going to decorate his bedroom and he will have to sleep in there. I can lay with Oliver for 4 hours some nights before he goes to sleep, he says he doesn't dream and his eyes open throughout the night

nadine1977

I've had oliver in his own bed but I get so tired I let him in my bed! I know I have to stop this, I'm just shattered x

Sam_Alumni

I can totally understand that! Sometimes we do things just to get some sleep ourselves. 

paulamarie1222

Gosh! You've got so much going on.
Have you written to Social Services to get your son assessed by a Social Worker? This is a 'way in' to access support.
 Also, it is important if you can get an official diagnosis of Autism (if it is suspected). You can ask for a refferal from your GP to the relevant professionals (e.g a phsycologist) for your son to be assessed. Tell him that the school teachers suspect he is autistic and that you do to. Then, once assessment has been done, if they will not commit to giving a diagnosis (what ever the outcome), write to them and ask this IS MY CHILD AUTISTIC IN ACCORDANCE WITH THE WORLD WIDE HEALTH ORGANISATION CD10. You need to do this in writing so that they have to respond and that you have evidence, so that you can access support for your son and yourself. Also, so that you can access benefits such as PIP and Carers Allowance.
It may also help if you write everything down, before you see your GP re the problems your son has, how it effects him day and night and what you have to do as his carer and how it effects you too. Lack of sleep is terrible for not being able to think straight.
You need looking after too and that way you can cope with everything better but please get 'on the ground support' if you haven't already done so.

paulamarie1222

Hi @nadine1977, I also meant to put in my post that the part about getting a diagnosis by writing IS MY CHILD AUTISTIC IN ACCORDANCE..........., by law, they have to answer this question.
All the best.

InformationSupportWorker

Hello Nadine

My name's Vicky and I am an Information and Advice Worker at Scope. Sam asked whether we knew anything about children having  botox for compacted bowels which GOSH has suggested for Oliver. I haven't heard of this before and have had a quick look on the internet with no results. If you have any unanswered questions especially around success rates and recovery you could ask the Doctor at GOSH, or ask if they have any other families who have gone through this procedure before and ask to be put in touch with them.

In the meantime I will ask my colleagues if they have worked with families who have experienced this.

Has anyone else had botox for this?

Best wishes to you all

Vicky