AIBU to consider home schooling over my son's ongoing bowel issues?

[HelpNeededASAP123]

Reaching out in utter desperation and despair.

My son, 11, has had this issue for as long as I can remember. I’ve done ERIC and been to the GP on multiple occasions.

He’s done disimpaction more times than I can remember. He gets up to 8 sachets of movicol and in the recent times, I’ve also given him lactulose so he’s definitely disimpacted. Then I do, as ERIC suggests, and reduce him to half dose - 4 sachets. He does timed toilet sits in the morning and evening. I recently reduced it to 2 sachets and this has made no difference. He’s miserable.

He goes everyday, but it is never firm ‘sausage’ poo. It is 99% loose poos, multiple times a day. The other 1% it is rabbit droppings. For the last two years we cannot go anywhere, as he cannot walk without leaking. He is fully aware of the leaking, it doesn’t happen without him knowing. So he has to constantly waddle to the toilet. This means we cannot do beach days, parks, forests as he has to be close to a toilet. He’s meant to be going to secondary school in September and I think I might just home school him as this issue is so bad and he will be bullied for it.

Has anybody found a solution to this?

Your poor son - that sounds horrific.
Has the GP referred him to a specialist? Has he had colonoscopy type checks? They really need to work out whats causing it. Could you go private if no luck with the NHS? This is no way for him to live :(

That sounds so hard OP i feel for you and your son. When we had similar issues for my child and it turned out he has megarectum. It took us to see a consultant privately in London eventually to get the correct diagnosis. As soon as the doctor saw the xray results he said it is megarectum. I would push for an xray. It sounds like you need more aggressive treatment. In order for my sons bowels to shrink back we used pico along with laxido. Your son definitely needs to be seen by a consultant.

He needs his friends.
Seek advice from another specialist.
Ask whether physiotherapy is ever helpful.
See another dietition.
Research underpants that fit better.
The poor lad.

Hope he can find an easier way to join in play with school friends.

Aww I really hope you find a solution and he can go to school. I find GP's really rubbish when it comes to constipation. However constantly leaking is no quality of life at all, even a stoma bag would be better surely! You haven't mentioned his diet, water intake, whether he has urinary accidents, whether he is dry at night, current stress levels (bowel is an emotional organ), whether there have been any periods where it's not been an issue at all, how much he goes to school at the moment and if he likes it. Sorry too many questions but I hope you get your answers.

Do you mind PMing me the consultant? We are near London.

My daughter had similar issues and got referred to a paediatric consultant at the hospital. And her case was less severe than your son’s. Sounds like this needs to be escalated to a hospital consultant for proper investigations as it’s seriously impacting his quality of life, and yours.

I mean, no. You cannot just homeschool him because of the issue, and you say he’s miserable. It is absolutely shameful if the NHS cannot undertake the studies and care necessary to allow a child to attend school. Can I ask what his doctors are doing? Have you seen specialists? Do you have a referral to specialists and you’re on a wait list? You mention ERIC and the GP, but you’re way past a GP’s remit. It does sound like possibly megarectum (I saw a PP just mentioned that). Also, I’m sure they probably told you, but just be aware that what you’re giving him is an osmotic laxative, so for it to work properly, he needs to be drinking A LOT of water.

Just here to say I understand and to send you love. My daughter had encopresis in primary school, the wait for a specialist was 18mnths, we tried to find a private bowel specialist that would see children or a private paediatrician that could help with bowels but no one seemed able to. We were completely desperate but eventually after a few disimpactions and a couple years on movicol she did get better, by the time we actually saw the NHS specialist she had completely recovered (age 9 ish) I know that doesn't help you facing secondary school now but I completely understand your dilemma and I probably would have felt the same, no right/wrong answer. Good luck

I am so sorry, this must be horrendous for your son, and horrible for you to witness him going through this. I’m quite shocked your GP hasn’t referred you to some kind of specialist, this seems clearly well beyond the range of normal bowel issues. I think you have to get pushy with your GP or explore private treatment if you can afford it.

I’ve asked to be referred to a specialist on many occasions and the GP fobs me off with movicol every time. I have the means I’d rather just pay privately than wait or go back to the GP. I haven’t had luck finding anyone that will see children, any suggestions??

I would be tempted to home school him because he will 100% be absolutely mercilessly bullied. Kids are horrible.

Push your GP for a referral. I taught a 5/6 yr old boy who had frequent accidents at school. He was referred to a consultant within a few months, admittedly it's several years ago but I don't understand why DS hasn't been referred on.

I cannot believe he has not been referred to a specialist. This must be impacting his and your life and needs investigating.
Reluctantly as a secondary school teacher I would say home schooling would be preferable to him having an accident in school and dealing with the fallout of that, which could cause long term psychology damage. This needs to be stressed to the GP as this needs urgently investigating.
good luck

100% I would home ed year 7 and push for investigation. Private if needed. School and these issues don’t sound compatible.

Don't leave the GP without a referral - see if a different GP if you have to.

Your son will need a EHCP plan - for the health care needs that he has. That will need to be in place before secondary school starts.

What is happening at school at the moment? How are they managing in primary?

In terms of GP, if they outright refuse help, then you might need to register at a different GP because he absolutely needs help.

He will need a bowel retraining plan which I see you have started but I think will need support for.

I would go back to ERIC's helpline today and tell them all this and see what they suggest.

I have home educated my own children for a period of time to meet particular needs and then reintegrated them into school so it can be done, but you should not have to do this if you do not want to.

School has an obligation to help your son, but so does the GP. You might have to be a squeaky wheel to make this happen.

If at all possible then a private gastroenterologist might be a quicker solution - but toileting is a combination of physical and pyschological, due to fear/pain of soiling and constipation and so may need multidisciplinary team help.

There are several private options in London

https://paediatricgastroenterologist.co.uk/gut-problems/constipation-and-hirschsprung-s-disease/

This is one of them

https://www.drbenjaminhope.co.uk/

Another option with a decent range of experience/practice expertise.

You absolutely can home educate for this reason, or any other if you feel it’s in his best interest. In this case I suspect you are probably right poor wee love. It’s absolutely heartbreaking how much we get fobbed off until a situation becomes unmanageable. Home Ed is a great option and really rewarding for both parent and child if you feel it’s something you want to do but it’s also really really difficult at times. Depending on where you are the Children and Wellbeing Bill being brought in is going to make things slightly more difficult so it’s also something to make yourself aware of too, especially with medical needs going to take up large parts of your time. It will still be possible and I’m not trying to put you off (long term home ed-er).

As well as a referral to a paediatric gastroenterologist, look at referral to the continence service. In some areas, you can self refer to them.

Also speak to the school nursing service. Even if you decide to EHE.

Have you spoken to the secondary school?

If DS is unable to attend school for medical reasons, there are other options if you don’t want to EHE.

DS saw Dr El Tumi at the Portland and they’ll have other paediatric gastroenterologists. Best of luck to your DS, it sounds horrible for him.

@HelpNeededASAP123 he won't get am EHCP for this but could have a medical needs plan. That wouldn't help with the issues or the embarrassment though.
Your GP sounds awful. Insist on a referral but in the meantime get him seem privately if you can. You could always ring Great Ormond Street as you're near London and find out who their paediatric gastroenterologists are and look them up for their private practices.

i would definitely get a private consultation with a paediatric gastroenterologist in one of the London hospitals. We were under Great Ormond Street and they were amazing, I recommend the Gastro team. This is not something he should have to live with. You can find the private clinics on the website,good luck x

There’s no way I would send my DC to secondary school if they were leaking poo. That’s not fair on them or on anyone else.
Poor thing. You should keep him at home until this is solved. Home schooling due to the medical issue might also highlight how serious it is when progressing medical appointments. Hope you get answers, and fast.

you could definitely home ed for a year just while you get this under control.

must be so stressful for you. My DH has crohn’s disease, which was diagnosed after a colonoscopy. He has found that eliminating certain foods (mainly sugar but also dairy and wheat and high fibre foods) helps when he is in a flare. Perhaps look into an elimination diet? aip is a strict one you could try on a temporary basis then gradually work to reintroduce foods.