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?

@HelpNeededASAP123 I would honestly refuse the leave the GP's room until your are referred. I don't say this lightly as someone who works in healthcare.
It is absolutely unacceptable.
I have bowel problems and occasionally had to put my foot down that I know my body better than others. Luckily I have an excellent GP now.

Have you ruled out food issues - fructose in our case. She was borderline on results but it was impacting her.

It can sometimes help make progress with referrals to ask what the criteria are. And ask to be talked through them, or given a copy.

Can you test for this or just elimination diet?

You can test - my daughter had a lactose (milk sugars I think) and fructose (fruit sugars) test hers is mild so fruit / veg she’s ok unless she eats loads. Her kicks in more for processed / dried. So yoghurts, fruit sweets, deserts, dried fruit, squash. Etc. basically anything with HFCS (high fructose corn syrup)

My daughter had this. She had issues from the ages of 1-9. Age 10 and finally seeming better but I know the pain of constant leaking on days out, disimpaction, etc. Much worse for your son being older though.

are you under the continence team? The GP cannot just fob you off with movicol at this point- you need a referral. As others have said- more investigations need to happen. Has he been tested for coeliac at all?

by a process of elimination, we found my daughter can’t tolerate too much lactose so we have reduced her dairy and she has lacto free milk. This has helped. She has been off movicol a year now and finally ok.

I would push for a referral and also see someone privately while you wait to be referred

One of my children had this problem. GP was absolutely useless, in the end I said I wasn't moving from the surgery until I got a referral. Consultant was brilliant. I think you need to move on from the GP because your son must be miserable.

I couldn’t figure out how to PM but we saw Prof Mike Thomson in Portland Hospital . You get the XRAY same day before you see him . From your son’s symptoms it sounds like his bowels are stretched and cannot empty fully. When a part of bowel is stretched it cannot contract so poo builds up there and cause accidents. If you google megarectum you’ll find how they treat it in children. The doctor advised us to use suppositories twice weekly as well but my son wouldn’t entertain it. We only used pico and laxido. Now we managed to wean him off pico and he only uses 4 sachets of laxido a day. No accidents lately touch wood. Also there is a facebook group called ‘Movicol Mummies. I highly recommend it. That’s where i heard people recommending Dr Thomson.

As others have said the solution is specialist medical intervention. My ds was eventually diagnosed with the family curse (crohns disease) which bizarrely causes us constipation when not in flare but is now in remission and unconstipated thanks to meds.

Please get him seen asap. This is no life for a young boy.

This sounds so difficult for you all. I hope you have some luck finding someone to help privately, though you shouldn't have to.

OP. You can homeschool for whatever reason you want, it's a perfectly acceptable choice. Providing your child with an education is a legal requirement, but whether you opt to do that via private school, using tutors, employing a governess, doing it yourself or using the local state school is your choice.

Most importantly, what does your son want to do?

Ask the gp for a second opinion and referral to paeds, it’s shameful of them not to refer your son.

Can you invoke Jess's rule at your GP and explain the situation is so dire you're thinking of home schooling

I’m sorry; I phrased that quite badly. Of course you CAN home school him. You have the right to do that. I just think it’s awful that you have to consider it due to a medical issue that I would hope a specialist could help solve. It seems a shame if your son would be happy and thrive at school that he be kept away due to an issue that can be fixed. But yes, I could definitely understand doing homeschool until it’s resolved.

Has he ever been tested for Hirschsprung’s disease? I’m guessing not if he’s not been referred to a specialist. I know someone who was diagnosed as an adult after years and years of suffering exactly like your son. It affects boys more than girls and should be diagnosed in early childhood with a biopsy. I’d keep pushing for that referral - don’t be fobbed off, become an absolute nuisance if you have to, it’s disgraceful that they’re not helping him.

Are you completely sure he’s totally disimpacted? Did he have at least 24 hours of completely liquid poo with zero solids?

I went through similar with my son and I kept thinking he’d been clear but it took a LOT to clear him out - he got to the max dose and it took over a week to clear him out. It was astonishing.

So sorry you both are suffering through this.

Ah god I'm so sorry @HelpNeededASAP123 but also glad you posted this as I'm in the exact same situation as you except sadly our son (7.5) also has disabilities (non verbal, suspect autism as still waiting for a diagnosis) and his bowel issues and incontinence are linked to this.

I feel like we are never off the phone from eric.org.

I suspect we need to go private to get a multi team support pathway as we can't crack it when he constantly needs disimpacted.

The issue is that getting the laxido dosage down to a level where the poo is where it needs to be. It never is! It's either too soft and diarrhoea like or he gets impacted and it's hard and he refuses to go. Also our GP won't prescribe us Movicol and it's laxido we are on, even though I've been told it's the same I'm wondering if there is a difference?

Anyway hope you get it sorted and I've saved this thread in case more people have good advice. Sadly I'm up in Scotland so can't use that private London specialist but I'll keep researching. Wishing you and your son luck! X

Hi I am so sorry this is happening. Just to add to what pp’s have said - there should be a child continence team somewhere that ds can be referred to. The nurses in our local continence service were amazing.

The NICE guidelines on childhood constipation would help you here too.

1.8.4 says refer to a specialist after 3 months of no improvement. Maybe find a new GP too?

after disimpaction ds needed sodium picosulfate - movicol small dose never worked for him - but the specialist service needed to diagnose that. It was life changing.

wishing you luck but there is time for this to be fixed before September if you push now

you really can’t fix this on your own. I’d channel your inner Knuckles (sonic’s mate) & get started on that GP tomorrow 💪

It is likely you would have to appeal, potentially more than once, but it can be possible to get EHCPs in situations like this.

Separate to the EHCP process, if you didn’t want to EHE but DS is unable to attend because of his medical condition, there is also medical needs tuition/section 19 provision.

This poor child.

As it stands _ the sum total of what has been done is GP appointments and movicol?

@ImMissingMum

My som sounds like yours. We are on 4 sachets a day and that seems ok but beware we miss one day. These poor children.

Laxido and Movicol are identical btw. I’ve compared the boxes

I'm very pro-home education, and I do personally think that those with medical issues are usually better off being home educated for many reasons, including that schools are usually very impatient and frustrating with the handling of these conditions and the absences that they usually cause.

I know school should be for all, but with the way many schools are run, including the lack of funding for extra support, they just are not cut out to handle those with SEN and medical conditions to an excellent level, generally speaking of course.

We home educate, a decision that was made before realising one of our children has autism and Tourette's, so we're very glad we were already in the swing of things without any pressure or stress caused by a school.

Disclaimer: not deliberately school bashing here, just being a realist, I'm a former teacher who still carries out ad hoc work in education settings.

OP, apologies if this is completely irrelevant, but I’ve noticed dairy makes me constipated- and I believe it’s the milk protein specifically. I have no allergies or lactose intolerance but still gets rather uncomfortable when I have more dairy over a day or two. Constipation. which for me leads to heartburn and bloating. Just saying this to point out he might be reacting to some foods even if he’s not allergic to them or have diagnosed intolerances. In general look into FODMAP diet if you haven’t already. I hope you find some help, it sounds miserable!
And apologies if this is a terrible suggestion but might using adult diapers help so he could better do those little trips and outings he deserves to do?

You have the funds for private and yet you had never explored a private consultation for this poor lad?