Can school exclude over toileting?

[Imadehimlikethat]

Just that really.
DS is 5. Still not toilet trained. In year 1.

He said he can't feel when it's coming, doc thought constipation so have meds. Immediately cleared him out so we adjusted the dose and now one soft poo daily. Def no more blockage as we can tell.

He still won't tell us when he needs to go. Shows no interest in learning. Will sit on the loo when I tell him to and can't change his own nappy but requires some promoting still.

His scho report last year (just received) was blah blah fine but I expect him toilet trained in Sept. It's now nearly Oct and were no closer.

Rewards don't work.

Obv this is about our shot parenting but I don't know how to rectify that.

I'm wondering if at some point school will just refuse to have him (mainstream) and of they would involve social services?

@bestbefore

Have you looked at www.eric.org.uk/ at all? They might be able to advise

Yes, they advised we hoped his liquids which helped a bit and consultant agreed re constipation, hence movicol but he's not dry or clean, it's wees too.

You really need a referral from your GP to a continence specialist. Long term constipation can cause a stretched bowel so although your child is doing a soft poo daily, he could be still backed up somewhere. Does he take movicol powders?

Stretched bowels can also cause wee accidents as it puts pressure on the bladder.

Really you can’t be sure if it’s behavioural or physical until you have had x rays and scans of the bowel, they can give you markers for your son to swallow in food and then x ray to see the progress of them through the intestines. At your sons stage I would absolutely be pushing your GP to refer for these tests.

In terms of school they should be certainly supportive of your sons issues whilst you seek to get to the bottom of them (no pun intended). Most importantly non of this is down to ‘shit parenting’ - dealing with these issues with children is so difficult and disheartening so well done for dealing with it for this long!

This sounds like a medical issue. Definitely not parenting.

So school can't exclude him.

But definitely need to get medical professionals involved. Must be so hard for all of you. X

They might be able to require that you (or someone else) goes in to change his nappy though, which would be difficult if you have to work. I don't work, I do have 9 month old twins though and I don't drive so it's a20 Minnie walk each way plus getting two babies in and out. If they insisted on this we'd basically have to camp outside school all day. Currently his 121 does it bit he can change the nappy (take down trousers, take off nappy, or new nappy on, trousers back on) bit needs a little prompting or help with inside out clothes etc.

If someone takes him to the loo, will he go? As in, could someone at school make sure he is going every break time, and then he might be able to get through without accidents? Yes , school get him to sit on the loo when he gets changed and we do the same, I can send him and he'll largely do it, he's happy to sit on it, I send on a toilet seat for school as he struggled even with just the normal loo seat so school are proactive. I just worry about them running out of patience

Sorry, I'm a little confused. Does he have any SEN issues outside of toileting? Do you believe it is a medical issue or a behavioural one?
Sorry.
Yes, although academically were slowly catching up. Largely at expected in his school report, some emerging (speech and personal care and social skills mainly), no exceeding. Medical issues as a baby which have impacted some areas. No teacher being pulled out to help him as his 121 does it all.

Why does he have a 121? Sorry if I've missed.

Ultimately they may run out of patience but that doesn't mean they can exclude him.

Does he take movicol powders?
Yes, consultant told us two morning and two night. Have him two one night, two next morning and that totally cheated him out, as far as I can tell. Two bad poos at school then diarrhoea like on the way home and rest of day so we adjusted (quite practiced at weaning his meds) so now 1 sachet overnight and then we seem to get the poo after school (because I really like his 121!).

Ok consultant said he'd see us in 4 months but he Def thought we'd take longer to get to soft poo. Maybe I should give a call to GP again (it's been about 2 weeks since we saw them)

@Hercwasonaroll

Why does he have a 121? Sorry if I've missed.

Ultimately they may run out of patience but that doesn't mean they can exclude him.

You haven't missed it, I was trying not to obscure the issue just wanted to reassure I want expecting a teacher to leave the class to sort my child. He is on long term o2 so needs help with that

Thank you for everyone for being so kind.

School have kinda left us to do it at our place and follow our lead, I can't criticise them but the school report comment off the Head just got me worried.

I'll ask school is they have any resources or support, will speak to Gp and we have a phone consultation with his respiratory consultant so I'll tell her too. She's amazing and is very good as covering more general paed stuff. He needs to be booked for a renal scan (routine) so wonder if that can be combined with something?

I couldn't toilet train dd3. She had multiple accidents each day, mostly wee but occasionally soiling. By Year 1 I was getting desperate and she was referred to local hospital and put on medication for constipation and for her bladder. The wetting continued plus frequent nasty UTIs and she was referred on to Great Ormond Street where it was found that she had a congenital bladder problem made worse by chronic constipation. Different medication really helped but she was 12 before she was reliably dry day and night. The school nurses and continence nurse were very supportive and put pressure on schools to act appropriately. We had some difficult and unpleasant incidents along the way but having HCPs to back us up was invaluable.

I think you should treat this as a medical issue and get some back up to help you work with the school to support your son. Please don't think you're a bad parent. It's a very distressing situation to be in.

Bless you OP it sounds like you both have a lot going on. They cannot exclude him at a for this. Obviously him being trained would make the 121s life easier but if he doesn't know, he doesn't know. Stay positive and keep trying with him. It might be worth a chat to see if there is anything medical going on, especially if he's under paeds anyway.

My money is on being impacted then, in my experience that’s not enough movicol to clear out, it may have just shifted the overflow but not a blockage. Standard dosage for that is around 8 sachets a day until you get to poo that looks like thin gravy for a few days. You really have to keep them off school for a week to do a full clear out (or try to work around a school holiday because it gets very messy). Then you adjust down until you get to a maintenance dosage of around 1 sachet a day ideally. I would definitely go back to the GP and ask for x rays, if nothing else it will rule out constipation and then you’ll know it’s a behavioural/psychological issue rather than physical.

There is a Facebook group called ‘movicol mummies’ which I find incredibly helpful, they have lots of experience with issues like your sons x

Would it be possible for him to use the toilet at school before leaving at the end of the day, once the other children had left ?

When you say he wee's on the floor, do you mean he wets himself or whips it out and then wee's on the floor ?

@MrsWhites

My money is on being impacted then, in my experience that’s not enough movicol to clear out, it may have just shifted the overflow but not a blockage. Standard dosage for that is around 8 sachets a day until you get to poo that looks like thin gravy for a few days. You really have to keep them off school for a week to do a full clear out (or try to work around a school holiday because it gets very messy). Then you adjust down until you get to a maintenance dosage of around 1 sachet a day ideally. I would definitely go back to the GP and ask for x rays, if nothing else it will rule out constipation and then you’ll know it’s a behavioural/psychological issue rather than physical.

We were told 4 a day which is the max dosage according to the instructions. We were told to give it until poo was like toothpaste and then adjust from there. We went from solid to past toothpaste and to liquid between doses so stopped until he had a poo. Then tried two a day and he was v sloppy so did 1 but like o said, that's all been within 2 weeks. I think we need to go back to GP as they'll have hospital letter and can ffeel his abdomen. He's v slim so it's not hard to feel

@frumpety

Would it be possible for him to use the toilet at school before leaving at the end of the day, once the other children had left ?

When you say he wee's on the floor, do you mean he wets himself or whips it out and then wee's on the floor ?

I mean of he has no pants on, he'll just wee, if he has pants on he'll wet his pants. Then he's a bit like uh oh, but he doesn't care about being physically wet and uncomfortable. He doesn't even tell us of he's had a poo (we have to ask based on smell) and will happily sit with poo in his nappy. He's never been bothered by being wet etc, which is odd for a kid with sensory issues over stuff he has to touch / eat.

I'm not trying to drip feed, he is medically complex bit I wanted some objective opinions rather than the "well it must beedical cos he's medically complex".
He's still part gastostromy fed which has helped us get extra water in, and he had a bowel resection as a baby so I wonder if that affects his sensitivity to movicol.

Would it be possible for him to use the toilet at school before leaving at the end of the day, once the other children had left? I could ask them when the last time they try him is and see

I just thought it might be worth a try if it is around the time he would normally poo, especially if he has a 20 minute walk after school

For wees - fluid plan of 6 cups of water a day. Drink a cup in one go. Helps to stretch the bladder and make the child more aware of sensation (sorry if this is what you're already doing!) & regular trips to the toilet. Perhaps trial without a nappy on weekends and have him naked from the waist down so he is more aware of the sensation?

For poos - you can get glycerol suppositories for children (2g). They are available over the counter but may want to run it by his gp. You can give them at a set time of day and he will need to go about 20 mins after. We do it in the morning after breakfast, before school. It means it's done for the day & we don't need to worry about him needing to go in school. Helps to get into a regular routine although it sounds like you are already!

Push for referral to bladder & Bowel nursing team or whoever the equivalent team in your area is. Ours is brilliant and has helped us so much.

Paediatrician should be able to arrange a bladder ultrasound to look for any issues as well as bowel x ray to check constipation. They can also examine to rule out any neurological issue. My DS had all of these done!

Good luck ❤️

& when you are ready to go without nappies, could send something like this in. It's our toilet case which is just a black pencil case so it's inconspicuous. Inside is wipes, nappy bag, spare pants and instructions! It helped DS become more independent and sort himself out if needed.

For wees - fluid plan of 6 cups of water a day. Drink a cup in one go he won't drink that much in a go unless he's really thirsty. He doesn't drink enough for sure, were now giving him 500ml overnight via gastostromy. We have to remind him to drink as it is. One of the issues we have with sipping is he can pee every 30 minutes in the morning, small wees. He has 160+60ml via tube in the morning which goes in over about 20 minutes.

I think you're right about going back to the docs tho. They did check his spine by hand and were happy

I mean of he has no pants on, he'll just wee, if he has pants on he'll wet his pants. Then he's a bit like uh oh, but he doesn't care about being physically wet and uncomfortable. He doesn't even tell us of he's had a poo (we have to ask based on smell) and will happily sit with poo in his nappy. He's never been bothered by being wet etc, which is odd for a kid with sensory issues over stuff he has to touch / eat.

I have always believed DS's problems were mainly down to sensory issues (& partly constipation and small overactive bladder). It will get easier as he grows, although it feels like it never will at the time!

Oh, so he has some quite complex medical issues then. That makes more sense than an an otherwise typical child not being able to feel bladder/bowel symptoms.

Have you considered a SEN school (believe me, I know it’s not as simple as just deciding you’d like an SEN school)? In my limited experience, when it comes to children I’ve met at mainstream Infant schools with complex needs (including needing tube feeds) there comes a tipping point at year 2 when it becomes apparent that mainstream Junior school isn’t the right setting.

I’m sure you’ve considered it already and it’s a hard choice. I already feel like mainstream is going to be a rough ride for my son for different reasons (autism) and it’s very tough, knowing what to do for the best

I’m really no expert in potty training and I’m not a paediatrician, however, this it what I’d say about this...

You sound like a nice, intelligent and loving mother who has tried desperately to potty train your son. I can’t imagine there is anything that you haven’t tried that any of us reading this have.

It sounds like your son has relatively complex medical needs and I think it’s difficult to say ‘it’s not medical/it’s all medical/it’s not emotional/its all emotional’ because who he is is completely meshed together.

You’ve mentioned delays including speech and language, and also sensory issues. My daughter has sensory processing disorder and it manifests in wanting to touch everything, but also not having finely tuned senses to tell when she needs a poo. On top of that, she has a speech delay and possibly mild learning disabilities. The consequence is that she still has accidents and could sit with a poo in her pants until we smell it. I couldn’t say, it’s one particular thing causing the accidents. I can’t imagine your son is just lazy, as it would be a bit more hit and miss than you say.

I’d be inclined to take the report thing up with the school, as it sounds like it’s quite complex and saying ‘he should be out of nappies by September’ to me is rather like telling the parent of a child who is deaf that they should be hearing better.

It really does sound like you are doing all you can, I don’t think if he had a different parent the outcome would be different.

Obviously I’m no doctor and could be completely wrong on all this!

@Haworthia knowing friends who's kids are in seen schools locally, we wouldn't qualify. It was a consideration at 2/3 when he was non verbal but we decided against it. Socially I feel he's better in a school with typical children, he's come on so so far in the last 2.5 years