Please help, My 8yr old son is incontinent

milliemonster

I'm at my wits end and don't know what to do to help him.

My poor 8 yo little boy has never had control of his bowels, he was diagnosed hypothroid when he was born and has been on Thyroxine with regular follow ups since birth, his paediatrician is always concerned about his bowels and to ensure he has them open every day for which he has movicol, but we have never been able to get him to have a regular bowel habit.

When he started school, he would regularly poo himself, school were great about it, he wasn't bothered at that age and we even involved the school nurse who said it was a phase he would grow out of.

However, how it is causing him a lot of distress and embarrassment, he tells me he does not realise he needs to go until the very last minute, then rushes to the toilet and doesn't make it on time, it seems he has no control whatsoever and cannot hold it till he gets to the toilet, so he ends up messing himself and then is distraught and feels ashamed, it is breaking my heart.

I took him to see my GP last year who again reiterated it was something he would grow out, but at that time, I don't think it bothered my son too much as he wasn't as aware of the embarrassment as he is now.

I try to offer loads of reassurance and love, but for example we were in the middle of Lidl shopping on sat when he suddenly started jumping up and down telling me he needed to go and then said it was too late and was in tears, I don't know what to do to help him.

Has anyone experienced this before? I am more concerned because he quite clearly understands he needs to be doing it in the toilet (he has no problems whatsover with his waterworks) but does not seem to be aware he needs a poo until the very last minute and then has no control.:(

milliemonster

BTW, I meant to say, he is not having loose stools due to the movicol, his poo is always formed and normal, he just can't hold it

finnigan

I would say go back to your GP, its now causing him distress and with his other med issues you need to tackle this with the Docs on side.

rachbc

I would ask to see the paed rather than the gp and discuss the need for the movicol - what is he like when he is not on that?

JBD

Yes, I have experienced this with 1 of my children.
I would advise you to note when he does open his bowells. Is there a certain time he goes? Are there any signs before he does go? The best thing to do is to anticipate it and to tell him to go to the toilet. Give him a few minutes and see if he can go.
The best time is shortly after eating, as the digestive system is more active then. He might also want to try after a bath, or just before he goes out.
Hope it improves, poor little chap.

curlygirl1971

Hi,

I work with someone who has similar issues with her daughter. She is now 11 and in secondary school and no, she hasn't grown out of it and if anything the issue is worse. I think problems have been worsened by one parent (separated) not maintaining a good routine with Movicol. For a long time the school nurse and GP blamed the continued problems on this issue. Things came to a head and her mum continually forced the issue until a consultant referral was given. I get the impression the consultant is not impressed a referral has only just happened and that due to a delay in supervised treatment the problem may not now be fully resolved. I think the consultant is continuing with the Movicol for the time being.

Best of luck x

Alleycat

Hi, my daughter has just been diagnosed with an overactive bladder and has the same symptoms but with urine. It took us a long time to get GPs to take it seriously as we were also told that it was a phase/behavioural etc. We finally got a referral to an incontinence clinic at Chelsea and Westminster hospital and I know they treat bowel incontinence as well as urinary.

I think it would be a good idea to push your GP to make a referral to a similar clinic wherever you are as this really doesn't sound like something your poor lad will grow out of. In the meantime are you using any products to help with the soiling? We got some pants called upsy daisy pants and I am sure they also make ones suitable for soiling. They look just like normal underwear but have special padding, gussets and waterproofing to deal with the mess. They aren't cheap but my daughter was really happy to wear them as opposed to the awful disposable samples we got from tena. We only bought a couple due to price but the nurse at the hospital ordered more for us which we don't need to pay for. Saying that though, she ordered them over two months ago and we still haven't received them.

I don't know if you have already seen this but eric is a really good website for advice and support. They also have a forum that kids can use though I don't know how active it is. I got my daughter to have a read through of the kids section and I think it helped her understand that she was just like a lot of other kids and that it was something that could be treated.

julie03

i have an 8 yr old who used to have this problem, he naturally goes every 3-4 days but the movical made him open his bowels every day and it took a while for him to get used to it, he would never feel the sensation before bowel movement until the last minute and he was usually so backed up it caused lots of soiling as he had lots of leakage.

once he got the hang of going every day, i think it is to get them used to the sensation, we have now taken him off the movical , he is back to going every 3-4 days but with no problems as he now recognises the signs

i hope things get better soon as it can be quite distressing for them

Mupette

Alleycat wrote: »

Hi, my daughter has just been diagnosed with an overactive bladder and has the same symptoms but with urine. It took us a long time to get GPs to take it seriously as we were also told that it was a phase/behavioural etc. We finally got a referral to an incontinence clinic at Chelsea and Westminster hospital and I know they treat bowel incontinence as well as urinary.

I think it would be a good idea to push your GP to make a referral to a similar clinic wherever you are as this really doesn't sound like something your poor lad will grow out of. In the meantime are you using any products to help with the soiling? We got some pants called upsy daisy pants and I am sure they also make ones suitable for soiling. They look just like normal underwear but have special padding, gussets and waterproofing to deal with the mess. They aren't cheap but my daughter was really happy to wear them as opposed to the awful disposable samples we got from tena. We only bought a couple due to price but the nurse at the hospital ordered more for us which we don't need to pay for. Saying that though, she ordered them over two months ago and we still haven't received them.

I don't know if you have already seen this but eric is a really good website for advice and support. They also have a forum that kids can use though I don't know how active it is. I got my daughter to have a read through of the kids section and I think it helped her understand that she was just like a lot of other kids and that it was something that could be treated.

maybe at 8 they might find this a big childish.

OP what about nappy liners your son can put in his pants that can be thrown away?

Alleycat

Mupette wrote: »

maybe at 8 they might find this a big childish.

OP what about nappy liners your son can put in his pants that can be thrown away?

They're not the character from in the night garden ones. That's just the company name. They can be used right up to teenage years.

Here's the link to the boys ones http://www.pshealthcare.co.uk/incontinence/index.asp?section=boys_incontinence_products_43

I don't know about the ones for soiling, but the girls urine ones seem to be the most discrete which was essential so DD wouldn't be embarrassed getting changed for PE or swimming.

milliemonster

Thank you everyone for your replies.

To be honest, when he is not on movicol he gets constipated easily and goes in dribs and drabs, but when we give him movicol, we can't seem to get the dosage just right, he either ends up loose and in a mess or still constipated. He has never had a regular habit at all.

We have tried all the usual, sitting him on the toilet after meals etc, but now he is getting older and knows his own mind, he tells us he doesn't need to go. It's always a case of when he gets the feeling, he suddenly has to go there and then as he is unable to contain it. I always know as he will be be busy doing something or just sat watching tv and then literally just run to the toilet, sometimes he gets there in time, other times he doesn't (esp if we are out)

I really don't think he would entertain wearing anything apart from his normal pants, as he's getting older now he is very self conscious of this and would be mortified!

When we have previously talked to his paed, he has just said to continue with his movicol and he will grow out of it, same as GP really, but now he is older and more self aware and is becoming increasingly distressed and upset when he soils himself, I am really concerned about his self esteem.