Ongoing poo problems in 8 yr old - anyone have any success stories at this age?

[reup]

My ds was constipated as a toddler whern he started refusing fruit and veg. He started withholding and the cycle became worse. We eventually ended up at Great Ormond Street. He's had lots of tests, lots of meds and psychologist sessions but nothing has been resolved. He can go on the loo but we have to remind him twice a day. He's on movicol and senna. He leaks even when not constipated. We tried to cut down on movicol in the summer but it was a disaster. We had to up it again and add in senna.
He won't talk about it much and is often in denial. He also has a terrible temper which may or may not be linked. He's getting better at cleaning himself but is not that efficient. He managed a i night residential last year but has a 2 night one coming up and I'm not sure if he should go.

Someone on another thread said her son was ok at 9 and wondered if anyone else had any success stories. At the moment it's making me so depressed as I can't ever see him being normal.

It really looks to me as if you haven't
a) treated adequately
b)treated for long enough.

It takes as least as long to treat the problem as it has existed. so if he is 8 and has had the problem - what - 6 years, you are looking at a minimum of 6 years intensive, consistent treatment, together with psychological support and possibly family therapy.

Do not minimise this, or hope that it will fix itself.

You need to step up, take control and get this sorted for your DS. He cannot do it himself.

First, study the ERIC Website.
Go back to your GP and push hard for a plain abdominal Xray so that you can see the degree of impaction.
Then you will need an escalating programme of clearing out with movicol.
There are no short cuts or quick fixes.
You need both parents and the whole family on board.

Your poor DS will be really suffering physically and mentally, and he needs you to help.

Good luck.

He's been going to hospitals since he was 3 - so 5 years, including 6 months of psychologist sessions. We have had x rays including one where he swallowed small plastic bits of different sizes on different days to see what happened. Hes had anorectal manometry to test the nerve endings in his rectum, colonoscopy, gastroscopy. He was discharged by GOSH - I think it's pretty rude of you to say I should step up! We have done all of what you have mentioned. He is no longer constipated as we had a big clear out when he became constipated when we reduced his movicol.

Sorry - didn't mean to be rude.
This is very close to home for me as I have been through it.
I don't have any other advice though, so I will wish you luck and hope you find a solution.

Have you come through it or is it ongoing?

Came through it - but only on the third go at treating. I just didn't realise how long it would take and I cut down the laxatives/softeners too soon and ended up in a worse state.

Had a completely ruined, very stressful holiday because of it. I got very very stressed and it was a miserable time. It just takes over your life.

It took 3 years in the end.

Whenever I see these threads it brings it all back and I just find myself typing furiously to get the message across. I can't bear the thought of another child going through it. but i can see how it might have come across - so sorry for that.

So many people have had very poor advice from HCPs - it is so variable.

Yes - we had rubbish advice before we got to GOSH then it became manageable but not cured. Except weirdly for 3 months when he was 5 - he went normally then suddenly stopped. No particular reason - maybe a stricter no toilet rule in y1, but I don't think he ever went at school. I can't stop thinking if he could do it then why not now?

We havent got anything new to try as our local hospital refered us to GOSH and they have discharged us saying he'll grow out if it. We did dairy free and wheat free diets with him too as some sort of allergy was indicated in a blood test but it made no difference. Then there was a year on some anti allergy meds as there'd was an area of redness that they found in his colonoscopy but that did nothing either!

I tried to get him some play therapy through the school counsellor but after suggesting it she then said it was only for kids who had had a specific trauma.

We feel like we have tried everything going.

Do you think he might have got impacted again but it is so far up a certain amount is getting past?

How long is it since he had an Xray?

I do think the whole issue around toilets and school can be a huge problem.

Do you think he is in pain?

I wonder if he might have IBS and it is exacerbating everything else.

My friend has really bad IBS and has antispasmodic (buscopan) for it.

I think he was but we spent a weekend at home taking lots of movicol and he seems clear. Even when he was shown to be not constipated via x ray & examination he still had some leakage. None of the gastroenterologists could explain it. But the head one said to add in senna overnight to get out anything left over.

It's hard to get the dosage right so he's not leaking but not bunged up either. He doesn't like saying if he's in pain and he was hiding his constipation from us when we cut down last time.

He had this issue before he started school. I don't know about ibs - he doesn't like talking about any pain.

He has a residential trip at school every year - he managed a 1 night one OK but don't know about 2 as he never takes himself and needs to be reminded. I asked the teachers to do it last time but he said they didnt. I don't want him to be humiliated.

I feel so sorry for him as I can't see it ever getting better after 6 years of it. There's nothing else to try.

Poor little soul. It sounds really grim.

Have you been seen by a paediatric neurologist?

I feel so sorry for you all.

No - that's a new one! I think we will see if we can get a care plan in place at school so he can use the disabled toilet as he has complained about lack of privacy and how dirty they are. Though he rarely takes himself at home and he has privacy and cleanliness there!