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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask if anyone has experienced anything like this?

6 replies

cantchooseyourfamily · 07/08/2019 16:59

Hi everyone. My 9 year old son has some health issues and I literally dont know what to do now. No one seems to have any answers and I wondered if anyone else had experienced something similar and had any advice.

For the last 4 years every time he has had a bowel movement he has had an accident before (unless we preemptively send him to the bathroom to try). The first he knows of needing to go is realising that some has leaked out, he can then go to the bathroom and have a proper bowel movement. This is effecting him so badly and we just don't know what to next. We've seen countless dr's, no one has any answers, originally they thoight it was encopresis (where a child is constipated, passes a large bowel movement and damages the nerves) however it has gone on so long that it really seems this can't be the case. The last few dr's we have seen don't think it is this, but don't have any other suggestions.

He has had a colonoscopy which showed nothing untoward, he has swallowed small rubber rings and then had an xray which have shown that his digestive system is working normally. He has had stomach xrays that show he doesn't have constipation.

He was completely potty trained for almost 2 years before this started and we just don't know what to do.

He is also very small for his age, an xray a few years ago showed he had delayed bone age by about 3 years, I'm not sure if this could be related. He also has some issues with his teeth, despite having good oral hygiene and not too many sweets he has had to have 2 teeth removed because they were in such bad shape and another 3 need fillings. I'm not sure if this could all be linked.

Would appreciate any advice on where to turn next, I'm so desperate for this to be over for him.

OP posts:
Linseedlill · 07/08/2019 19:05

That sounds really difficult.

Have you contacted ERIC? They might have some helpful information.

I'm not an HCP but it sounds like some sort of nerve problem in that he isn't receiving the right signals? Maybe you could ask about it on the SEN boards here? Someone I know has a little girl with this sort of problem (not exactly the same) and it probably isn't this in your case, but just as an example, she was found to have very mild cerebral palsy. So maybe worth getting a referral to a pediatric neurologist?

ravenshope · 08/08/2019 17:11

extremely common in autism.x

VforVienetta · 08/08/2019 19:47

Can I ask what his stools are like?
My DS had toddler diarrhoea for years, and couldn't recognise the sensation of needing a poo as his stools were too soft. We ended up seeing a paediatric gastroenterologist who found out the cause was a histamine intolerance. We got him out of nappies just in time to start school.
A friend's 9yo DD has a different issue in that she soils herself deliberately, and her issue is currently deemed psychological.
Many children have toileting issues still at this age, maybe post this in Children's Health as well?

VforVienetta · 08/08/2019 20:12

Also, has he been seen by NHS or private doctors? We ended up having to find the money to go private as the local hospital saw him so infrequently that we weren't getting anywhere.
If you're in the South, pm me and I'll give you the name of the London/Surrey based one we saw - he's extremely good (also works in the NHS so you may be able to get referred to him).

HairyMaclary · 08/08/2019 20:20

@VforVienetta - I'm just about to send you a PM. Could you give me the name of the consultant and the hospitalshe works from? I have a son with similar issues and we are in the area. Thanks

VforVienetta · 08/08/2019 21:13

HairyMaclary, OP and anyone else, I've realised I don't need to be coy about it, it's hardly outing is it! He must see hundreds of children a year.

Dr Sonny Chong, otherwise known as 'The Poo Doctor'. Grin
We saw him at the New Victoria Hospital in Kingston, and at the time he worked at two London hospitals too.

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