Handhold pls, dealing with schools & incontinence

[DyingForACuppa]

Arrrrgh. I don't know what to do, I feel hopeless. My 4 yr old DD has one or two wet accidents most days. She always has done. We took her to the doctor as we were worried about there being basically no signs of progress, (and school age was approaching), they said there is nothing physically wrong with her and referred her to specialist.

We waited over 6 months (they kept pushing back appointments), she started school, and then the specialist advised her to go on a program of drinking more water with fixed drinking and toilet intervals. To cover the hours in school she has a marked water bottle, and a set of instructions were sent in. The school mostly did it the first day (and the increased water intake meant she wet a lot more), but then they've done less and less until now, not even a week later she has come home with her bottle full as she didn't drink ANY water all day. She says they didn't remind her at any point.

I get that reception teachers have full classes of kids and expecting them to do extra is a big ask, especially as following the program means they are having to change her multiple times a day. I get that it's hard to make someone drink water (the 'make it a fun game' suggestions wear thin pretty fast when it's something you are doing 6 times every day).

But wtf am I meant to do? I can't get her to catch up, its an extra half litre of water to fit in on top of the water she is supposed to have at home. Plus the fixed times for things is part of the deal, what's the point in us trying to follow a schedule if five out of seven days a week the schedule is disrupted.

The specialist won't give us another appointment until we've given this time to work (2 months!).

I just can't do this! Its only been a week but the constant 'but I don't want to drink/pee', plus all the extra washing from increased accidents, plus now I'm clearly going to have to keep on at the school to actually get them to do it (we've already had to speak to them twice about this), I just feel totally overwhelmed and miserable and hopeless.

The worst thing is I don't even believe this will work, but wtf do I know about toilet training children? (answer: fuck all), so I'm doing my best to follow the expert advice, but if the school won't cooperate she's actually going to be drinking less water than before and all my efforts are for nothing.

I’m sorry you are going through this - and I know how hard it can be to get school’s to do things they should.

But really it’s not Ok the school aren’t meeting her medical needs. You need to write in ASAP and put clearly that this is a regime proscribed to her by a specialist to meet her medical need. You could also ask for a meeting to go through it with them - how long does she still have left to do it for ( maybe set that out as it is short term). If you have spoken to them twice it is probably time to escalate - you could also discuss if there is anything you can do to make it easier for them?

I’m sure you have already but have your spoken to ERIC at all - they seem to have good resources and might be able to help specifically re dealing with the school?

I just wanted to pass on my sympathy! Your little one is so young, it's not that unusual for kids to have accidents at your daughter's age. I think kids start school so young and have to fit in so fast before they're necessarily ready.

I agree with you that I don't think the toilet training thing will work but I hope it does. If she'd still only 4 could pull-ups still be a choice?

A friend of mine found getting the school nurse service involved really helpful in a similar situation, when they had been in and spoken to staff there was a lot more input at school.

That’s not acceptable. InY2 one of DD’s friends had to drink water on a regular schedule for medical reasons and DD often said “Miss’s watch beeps and then XY has to drink from his water bottle”. So, it can clearly be done.

Can you get the specialist to provide a statement in writing so the school has it on it’s records and can’t get out of it as it would discriminate your DD’s medical needs?

Hello, this method is pretty common and I think it's meant to strengthen the muscles in the bladder by getting it used to dealing with larger amounts (not a doctor though!) I'd suggest you keep on at the school and ask for an agreed plan with a named TA responsible for making sure your daughter is drinking at the appropriate times. They need to deal with it as a medical need. Incidentally, I was told it can be caused sensitivity to certain foods making the bladder spasm, we cut out caffeine (chocolate basically) and fruit juice and it seemed to help.

Sorry you're going through this, we've being through the same with our DS. Drinking much more did help in the long run as it strengthens the bladder and helped him to understand the feeling of needing to go.

We ended up getting the urology nurse to meet with the school head teacher to explain, she also explained that most children don't drink enough and being dehydrated can stop them being able to concentrate as well. So the school then did get everyone to drink more, which was great because DS didn't feel singled out. But it only lasted weeks and then they stopped, so I understand your frustration. I ended up being 'that parent's who just kept on at them, but he still never did drink as much as he should at school.

Has your doctor ruled out constipation/impaction? This is what was causing DS's accidents as the bowel was putting pressure on the bladder. He seemed to be pooing as normal but an xray showed he was badly impacted, and things improved a lot after having laxative medicine.

I'm a teacher and I can't believe they aren't supporting you with this, especially given that it has been 'perscribed' by a medical professional. You need to get in touch with them again and if the class teacher still isn't supporting then make an appointment to speak to the head.

DD's primary referred her to the school nurse when she had issues with not wiping her self properly, and then they referred her to the local Bladder and Bowel clinic (paediatric) . So I would be asking the school if they can refer DD to the school nurse.

DD had a large water bottle and the teacher was given a water chart to mark when DD had drunk. (all provided by the clinic). DD's issue was constipation.

They also pointed me in the direction of ERIC , which has loads of advice on it.

www.eric.org.uk

DD2 has wetting accidents when she's constipated just to throw that into the mix.

ERIC have really good documentation on their website reminding schools of their obligations - but to start with I'd go along the lines of getting any issues down in writing - either via email or in reading records or whatever - just means you have a timeline starting to be built about it all in case you need to complain.

Could you use something like a kids Fitbit and set an hourly buzz on it for her to use as well? I've done that before with DD2 and it semi-worked.

Why not give school a sheet with the times of the day she needs to have a drink written on it, that they can initial and write in how much she drank? That’s what we do for some of ours who are on a special diet or have diabetes. We have them on a clipboard with the medical notes attached - do school understand that this is medical treatment and not parental whim?

Has your doctor ruled out constipation/impaction? This is what was causing DS's accidents as the bowel was putting pressure on the bladder. He seemed to be pooing as normal but an xray showed he was badly impacted, and things improved a lot after having laxative medicine.

They said it couldn't be that, but without x-rays or even physically inspecting her, which I was a bit skeptical about . But then while we were waiting for the incontinence specialist, she did get constipated and it was very obvious (felt ill, tummy hurt, refused to eat or drink, said she needed to go but nothing came etc) and they did feel her tummy and give her movicol which got things moving again after 4-5 days, so I think we would know if it was constipation?

@DyingForACuppa

Has your doctor ruled out constipation/impaction? This is what was causing DS's accidents as the bowel was putting pressure on the bladder. He seemed to be pooing as normal but an xray showed he was badly impacted, and things improved a lot after having laxative medicine.

They said it couldn't be that, but without x-rays or even physically inspecting her, which I was a bit skeptical about . But then while we were waiting for the incontinence specialist, she did get constipated and it was very obvious (felt ill, tummy hurt, refused to eat or drink, said she needed to go but nothing came etc) and they did feel her tummy and give her movicol which got things moving again after 4-5 days, so I think we would know if it was constipation?

DD had constipation, it caused a slight incontinence but we had really trouble with soiling.

The physical examination was very gentle, the paediatrician was really good with her and DD didn’t hurt at all, she said, it was weird and a bit strange but no pain.

Maybe go at it from an SEND angle and ask to speak to the SENCO about it?