Feel like giving up -nearly 6 year old not getting an... - ERIC

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Feel like giving up -nearly 6 year old not getting any better and missing out of learning at school

Marmiteandcrackers profile image

Anyone else just at a loss? Nearly 6 year old. Never really pooed on the toilet. On movicol for two years. Did an impaction over summer holidays. Never got to clear poo so probably didn't do it enough. He then did 7 poos on the loo but now back to soiling. School kept calling me to come get him. Sometimes he tells me he does it in his pants cos it's easy. I've started making him clean himself up. Tho he doesn't bother at school unless they notice so most days he comes out with a poo in his pants.

Went back to Doctor who told me to do mini impaction at weekend. Did this but he didn't poo till Sunday. Yesterday two explosions at school. Today three and I had to go collect him early. I feel like should I do another impaction but would need to wait till half term as school have already told me there's big gaps in his work cos he's always in the toilet. When he pooed in the toilet it only seemed to be when it was already mostly out of his bum. He often doesn't seem to do a full poo but doesn't seem to know when to push. They said at school he doesn't listen and won't sit on the carpet at carpet time ) half the time I think is it because he has a poo in his pants) should I give him movicol in morning to reduce risk of accident at school?? Tho he takes ages to drink it so would have to get up at 6 and I don't get home from work till after midnight. We are under the school nurses but last time they just said go back to the doctor and were pretty pointless. Thanks if you get this far!

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7 Replies
Louloubelle23 profile image
Louloubelle23

Oh dear I really feel for you. We’ve been on this rollercoaster for 7 years! We are starting to see light at the end of the tunnel though so don’t despair!

I would suggest asking the doctors for a stimulant like Senna. The movicol only softens the poo and takes a few days to work so what time of day you give it won’t really make much difference. Senna is a stimulant that you take before bed and will (hopefully) make you go in the morning.

Also, do you have a toileting routine in place? If not sit him on the toilet for 10 minutes after meals (lunch time too if you can get the school to support). It’s supposed to help train the bowels to go at those times.

Have you watched the poo nurse video on this site? If not then it gives good advice on disimpaction.

Other than that push for a referral to see a continence clinic or Paediatrician- they are experts in this and know much more than GP’s. The sooner you get referred the better though. I left it too long with my daughter and I think that’s why its taking so long to fix.

Good luck and remember you’re not alone 🤞

Elisa007 profile image
Elisa007

Hi,

It sounds as if school are not being very supportive. They need to have a care plan in place for your children and you do not have to attend school to clean him up, they should! There is some guidance on the ERIC website. Can you make an appointment to speak to class teacher and SENCO?

I’ve had a battle with my sons school and took the ERIC guidance in and they were a lot more supportive after that!

My son is nearly 6.5 and we are still having issues. I’m fighting to get seen by a paediatrician!

It’s hugely frustrating for all involved

Robinia profile image
Robinia

Please know you’re not alone. I feel really sorry for him. He probably doesn’t know when the poo is coming. I agree 💯 with the other comments. Deffo another disimpaction. Senna worth trying alongside movicol. Referral to continence service/paediatrician. And school need to get on board. I phoned the ERIC helpline and they emailed me an Individual Health Plan for me to fill out with a health professional to give to school to tell them what support my child needs in school.

Keep posting so we can hear your progress, 🤗 big hugs from parents who really do understand xx

Frustratedmum1 profile image
Frustratedmum1

Don't give up. Your son is still young and he can catch up. He is going to find it hard to concentrate in school because of whats in his body. It's an achievement he is going to school.

My son had 7 weeks of school last year due to us doing discompaction programmes it was a necesasity to try and maximise his time in school and sort out the behaviour we were seeing. If you think he is struggling I would go ahead with a programme.

A toilet routine after every meal has helped us no end. Yes we still have accidents but I'm sure this has reduced the severity of them. With our school we go inevery lunch to sort our son out.

I'm not defending your school but what I found was they are clueless about the subject and you end up educating them.

I have made my son wash his own dirty pants because i didn't understand. I know it is hard but try and be positive and encouraging in front of them. Even tho you are cringing inside. We ended up in the situation where our son wouldn't go near the toilet.

Please let us know how you are getting on and you are not alone any more.

Marmiteandcrackers profile image
Marmiteandcrackers in reply toFrustratedmum1

They are getting me to come get him again so he's missing school. Just had to pick him up at 2 and he has drama club at school at 3.30. I said if I take him home and shower him then bring him back can he go and the teaching assistant said "no cos what if he does it again". Isn't this discrimination?! I argued my case and said I will wait on the foyer whilst he does it in case he had another accident. Luckily the treacher agreed. Thinking of sending him in pull ups cos the mess is unreal. Has anyone done this. When I turned up he's been on the toilet for 50 minutes trying to clean himself up and it was all down his legs, all up his back. He'd used a whole pack of pads whilst the teaching assistant just stood there (to be fair I did said let him clean himself last week but this poo was really bad

Frustratedmum1 profile image
Frustratedmum1

To be honest my son is back in pull ups when he goes to school. It does make life easier because it is easier to contain the mess. They also seem to hide some of the smell. We use huggies in the day because they are thinner. We then put boxer shorts over the top so people can't see. It takes a bit of work to find the boxers that cover them completely. I supply my son with flushable wipes for school. It makes things easier for him to clean himself.

It sounds like the teaching assistant doesn't understand constipation. Perhaps you should push for a care plan in school. So everyone knows where they stand.

We bought our son a ladder to put on the toilet for school so he is more comfortable to go to the toilet. We use the staff toilet. It may be worth you going into school if you can at lunch times to try and sort him out.

When my son was really compacted the poo was more like tar you struggled to get him clean. Perhaps It would be worth to do a discompaction programme now.

The one thing that has been driven into me is don't lose your temper and keep calm. This is harder said than done. But I do think you get a bit further with things.

Please stay in touch

Nanoiu profile image
Nanoiu

My son is 6 years old. He has started soiling when he was 4. We’ve been seeing a paediatrician for 1.5 years. He prescribed Movicol and Senna pills. We disimpacted twice at home. First using Pico Prep, because son was refusing large quantities of Movicol needed for disimpaction - this is a good option, takes only a couple of days and 4 sachets in total, as opposed to disimpaction using Movicol, which takes at least a week and 20+ sachets! Second disimpaction was with Movicol, while paediatrician was away and couldn’t get a prescription for Pico Prep. Messy and so disruptive, have to keep the kid at home for a week! As part of treatment for soiling, I’ve also tried using 5ml enemas in the morning, for a few months, to keep the rectum empty and that prevented soiling at school. But while these empty the rectum they do not reach into the colon where poo can be stuck. I also tried suppositories but they sometimes do not cause a bowel movement and when they do, they won’t completely empty the rectum.

Moving forward to a month ago, at our last appointment our Paediatrician decided it was time for an X-Ray- I had requested one from the beginning and he said it wouldn’t show anything conclusive - well the X-ray showed what he thought it’s a large amount of compacted poo in the large intestine. He then mentioned a new method of disimpaction, I didn’t know was available- to bring my son to the hospital for a few days for a nasogastric NG tube clean out using Kleen Prep. He said it’s the Rolls Royce of disimpaction. So we did that a couple of weeks ago, got another X-ray to make sure the poo is cleared out of the colon and now we’re back on Movicol and Senna (Senokot). But he asked me not to use enemas. Did not explain why. We had an almost normal life while we used enemas.

Oh, and by the way, Senna only works if the poo in the colon is kept soft, it pushes the poo along. If the poo is too hard, it doesn’t have much effect and very little poo arrives in the rectum.

That’s based on our experience.

We are in New Zealand. Not sure how the sistem works elsewhere, but worth pushing for more than the standard treatment (Movicol and Senna).

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