Starting school with poo issues

[DappledThings]

Not NCd so anyone can see I'm not the poo troll.

DS starts school very soon. He is fine with wees and has been for a long time but we have never managed to get his bowel quite right. We have been on and off Movicol and when he's been on it he's been on a multitude of different doses. We under the care of a specialist HV who has been consulting with the bowel and bladder team and I've had a call back from Eric.

We either have him medicated which results in 9-10 small, solid (but not overly hard) poos a day. Some of which he gets in the toilet but some not because it's a lot of times for him to interrupt his day. Or we can have him unmedicated where he will do perfect, large poos every 2-3 days but has multiple smears inbetween.

Both scenarios require him to have help. He wipes well but needs to be with actual wipes that he can then put in a nappy bag and throw away, toilet paper just disintegrates.

I have no idea what is reasonable to expect from the school. Obviously it's not like nursery where they are happy to change him and clean him. But it's not that we haven't been doing everything we possibly can to get this problem sorted.

Anyone started school in this position or is a Reception teacher or TA who could tell me what they would be able to do. We've had no contact from the school bar a pack being sent out, home visit and meeting the teacher all cancelled because of bloody corona.

School have a duty to be supportive with this and put a plan in place, I think it comes under the equalities act. Have a look at the ERIC info and give them another ring if you need to.
www.eric.org.uk/pages/category/help-at-school

I know we have supported a child who had no control and had to be regularly changed in nappies. I'm sure that they could put in place a plan.

The best thing to do is let the school know as soon as you can so they can plan. It can be awkward for them as they will need two adults to assist him, but it's definitely doable with prior knowledge.

What about sending him to school with panty liners (for periods) and if he smears he can remove it in the bathroom, put it in a plastic nappy bag and put on a new one. And maybe medicate on the weekends if that helps keep him cleared out. If he only goes every few days unmedicated then he won't need help at school too often (for wiping). Or if he can do it on his own with wet wipes he could put those in a nappy bag too . Could be expensive having to buy lots of panty liners and nappy bags though.

TigerQuoll That's a really good idea. I will think about that.

And will get in touch with the school now. Thank you all.

One of my DC started school with chronic bowel problems, inc pretty much daily soiling.

Get in touch with school asap so they can plan for this; they've not got much time now. As others have said, school are obliged to deal with this - they can't ask you to come in to deal with it/send home for it to be dealt with.

Once you've agreed a plan with school, make sure your child knows it in detail - who will deal, how they'll deal, where it'll happen. In my experience, kids in this situation can feel very embarrassed and out of control, and obviously that's worse when starting in a new setting, so as much info as possible, and a special bag for their changing stuff, etc, can be really helpful.

As an aside, it doesn't sound as if you've got the medication adjusted entirely right - if I were you, I'd be looking for a gastro referral, or at least direct liaison with the bowel and bladder team, rather than just HV (even if specialist HV). Has anyone addressed the possibility of gastro allergies? And is anyone really checking that the bowel is staying clear without being backed up? (with movicol, if the problem is actually with slow transit or with sphincter release, you can find that it all gets softened, but doesn't necessarily all get released regularly, so you still get a backlog, but just not a classic hard impaction). Sorry if this isn't helpful, but just thought I'd mention, as constipation is so complicated to (ahem) get to the bottom of, and often needs more specialist input than it gets! Feel free to ignore!

JeanMichelBisquiat
Thank you, that is all really helpful, I appreciate it. HV has to have 3 conversations with us before she can refer directly and we have had 2.

Our big frustration is that we haven't had enough help with it. GP has just told us to play around with the Movicol dose with no better guidance and yes, I do really think he needs a full assessment and that we have been somewhat fobbed off so far.

(with movicol, if the problem is actually with slow transit or with sphincter release, you can find that it all gets softened, but doesn't necessarily all get released regularly, so you still get a backlog, but just not a classic hard impaction)

This really sounds like a possibility. On Movicol he would go multiple times a day. All soft but small, about the size of a large strawberry. So he was never getting a full clear out. Ummedicated he will do enormous ones, still soft but only every few days with some soiling between. Yesterday was more soiling than usual.

It sounds as if you haven't really had a proper diagnosis or gone through a full treatment plan. Do you know what the actual problem is?
I agree with pp that calling the ERIC help line again might help.
This whole covid situation has meant that diagnostic tests are not being done.
Have you looked at the Poo Nurses web site? It is very good.

School have to be supportive as it's medical.

Speak to them ASAP as personal care requires full PPE currently due to covid and faeces and they need time to source this.

My DD is the same, we had a long chat with her teacher. The problem is that the toilets aren't in the classroom and because TA funding is cut, the teacher is alone with the kids half the time and can't leave the other kids in the classroom to go help her.
They worked out a system where if DD doesn't come back from the toilet in a reasonable amount of time they message up to the office to get someone to look for her. She also always goes with a friend (lucky they don't want privacy at that age!) They are also meant to have two adults there to help a child with toileting for safeguarding reasons which is even harder to staff. They do have to help for medical issues but staffing has been cut to the bone and there's covid bubbles as well so you do need to phone them and let them know asap because it really isn't straightforward for them staffingwise.

It sounds as if you haven't really had a proper diagnosis or gone through a full treatment plan. Do you know what the actual problem is?
This is exactly right. We keep getting told to try things like encouraging set times to sit on the toilet and try and the whole blowing bubbles stuff. But no, we haven't had a proper diagnosis and it seems so hard to get anyone to do that. Hoping this next chat with HV means she refers us fully to B&B team.

I keep feeling we've really let him down and I'm so upset by that.

My ds started school with a similar issue and soiled almost every day through reception and y1. School were open to talking about it and suggested various things like a toilet buddy, but ultimately ds would withhold, not tell anyone he needed it and eventually probably didn't realise himself as his muscles lost their tone. He wouldn't tell anyone or sort it himself if he soiled. Tbh it was a very stressful time as I would often pick him up and smell it straight away whereas no one else had noticed (or admitted to noticing). So them changing him wasn't usually an issue! He had spare pants and trousers in a bag for if they did though.
It settled down in Y2 but he still has issues on and off now (going into y4) and if he withholds once it can cause issues for days.

Whilst I totally sympathise with you (I had a child with bowel issues as well), as a Primary Teacher I think you’ve put school in a very difficult position by not mentioning it before this. There are only 2 weeks before the start of term and even without Covid, there are procedures that will need to be put in place, including extra staffing due to the fact that there has to be 2 adults present when dealing with toileting issues plus the fact with Covid restrictions full PPE will have to be worn by all staff whilst dealing with any accidents your son has. If he is having up to 9 small poo’s a day and requires support every time, that is taking a member of the classroom away from working with the other children for a significant chunk of the day which is going to have a massive impact on the class as a whole.

Schools are more than happy to help support with things such as these, I most certainly am and have had plenty of children with issues such as this, but it takes some organising and you’ve not given School much notice. Really it’s something you should have mentioned well before this.

LadyPenelope68
I know. But HV and GP were so convinced that he was about to just get it and we just needed to try all the techniques and it would all be fixed that we kept hoping that would be the case. Foolish I know.

It's only 8-9 when he's medicated which he currently isn't so it's nothing like that at present.

But you are right. Hope against sense.

@DappledThings glad that was helpful - I know how hard it is when you're in the middle of it as a parent. I would advise unashamed pushing of HCPs. Also, do have a think about any gastro allergies as a possible cause - dairy being the most obvious option, but not the only one. Have a look at the NICE guidelines on allergies on children.

@LadyPenelope68 my first thought on reading the OP was also that it's less than ideal timing! However, let's bear in mind that the OP has obviously had quite a lot on her plate, and it doesn't look as though the school has been in touch at all with parents to flush out (god, sorry!) any potential issues like this for new pupils. It's hard for parents to understand how things may differ in terms of staffing etc on transition from nursery to school, and I think more thorough comms from schools in the run-up can help with that (that's all with the caveat that I'm well aware how incredibly hard the last six months have been on teachers!).

I've emailed the school now. Even now though it was hard to explain. I said a lot of he might do this or this might happen or he might be fine and it might be no issue. It's so hard to explain when it's so inconsistent. But I also explained that was why we hadn't brought it up with them before as well so I hope they are understanding.

9 to 10 small poo a day is still constipated. It sounds like you need some proper support to get in top of the constipation issues.

It sounds like you need some proper support to get in top of the constipation issues.
I agree! It's been so hard to get that. Should be referred by HV into bowel and bladder team this week. GP has been so dismissive and we should have pushed them more earlier but just trusted what they said about getting the right dose of Movicol being the answer.

Are you using the Bristol stool chart? It is very helpful in identifying the diagnosis. It is explained on the Poo Nurses website.

Bristol stool chart is, IME, of limited use where faecal loading is still occuring and the stools are softened by the movicol. My child was fine on the Bristol stool scale, but whole colon full of poo.

Movicol has to be taken consistently. Find a dose and give it to him every single day. Increasing, decreasing, stopping and starting won't help.

My dc have toilet time twice a day. It's 10 mins in morning and 10 mins in evening after a meal. Only 10 mins. If they don't poo they come off after 10 mins. Top tip. Get them to blow bubbles whilst sitting there.

Been through the Bristol chart with the HV a few times. Trouble is he is, when medicated, a 5 but lots of separate times a day. Unmedicated he is a perfect 4. But only every 2-3 days. And now has soiling between. As of yesterday more than ever all of a sudden. Doesn't seem to fit any of their clear profiles and I think that's why GP and HV aren't not really getting to the bottom of it.

Will look at Poo Nurses. Thank you.

One of the best, definitive tests for poo problems is a plain abdominal Xray. Unfortunately it is extremely difficult to get one.
Could you afford a private consultation?

@endofthelinefinally

One of the best, definitive tests for poo problems is a plain abdominal Xray. Unfortunately it is extremely difficult to get one. Could you afford a private consultation?

Yes, we probably could. I will look into this. Thank you.

You need a paediatric gastroenterologist. Look up the nhs specialists in your area and find the ones that have special interest in constipation/ bowel problems. Then cross reference with the private hospitals to see which ones do private clinics.
It is usually up to £ 200 for a consultation, then a fee for each test. Fees are listed on the hospital website.
Xrays and scans are very expensive unfortunately.