School and Bladder Issues

[MrsSquirrel]

Rock and a hard place. Possible overactive bladder, 18 to 20 small wees a day. Gone through NHS as far as urology team now. School say that our son is 2 years behind and would like him to be in pull ups and limit loo trips (as disrupting learning in class with TA) Continence team advice is not to limit loo trips. He is 9. Not sure which way to turn. His dad says try pullups as he is losing precious learning time every day

Anyone been in this scenario? What would you do? Just feel NHS wheels turn so slowly and all the time he is missing out on his education.

[fuzzalert]

Wow! Schools can be so tough for kids with continence issues and it’s a constant battle for us parents.

My son is also 9 and has an overactive bladder and used to wee up to 20 tiny wees per day and got told in Reception class “lesson time is for learning” and whilst I agree, schools must also recognise that things like incontince is classed as an additional need!

Firstly, before I give my suggestions, how long has your son been under Urology and what are they doing to help his situation treatment wise?

Has your school got a school nurse?

Have you got it had a Wobbl watch?

There are definitely steps that can be taken to put a plan into place that the school should follow in order to support him

It does improve, my son now wees 10-11 times a day and each time the volume has increased, so there a light at the end of the tunnel, so hang on in there. This is definitely the place for support and ideas to help you move forward!!

[MrsSquirrel in reply to fuzzalert]

Hi Fuzzalert, the paediatric urologist took a history and asked us to try upping tolterodine to 2mg per day and a sachet of movicol (no constipation evident but just to see if it helps). Going to Nottingham for urology clinic where they will do uroflow etc I think (hope).

[fuzzalert in reply to MrsSquirrel]

Sorry I haven’t got back to you before now!

Firstly find out if your school has a school nurse team and speak to them. When my son went into year 1 after being told he wasn’t allowed to visit the loo during lesson time in Reception I got the school nurse in alonge witg year 1 teacher and head teacher to explain about overactive bladder to them and basically give him a free pass to visit the loo shen he wanted. We came up with the teacher or TA signing a capital T to him totemism him to visit he loo. As he’s it older this has become more difficult so used a Wobl watch so he could have loo reminders without anyone else knowing.

He changed School after year 1 and have had to repeat same thing to each class teacher.

What helps is that I requested the consultant to write a letter to the head teacher explaining his symptoms/urgency and basically saying he must have free access to the loo. I request to every teacher that he sits as close to the class exit door as possible so can just slip out as and when. I asked that this letter be passed to all teaching AND non teaching staff about my sons condition. This has worked a treat!

The head teacher also came up the idea of having a lock box inthe boys loo for my son to keel a set of spare clothes in there at at all times. Only he and the Head teacher know the lock code and it’s out the way so other kids don’t notice it.

His urology nurse suggested that we put a care plan in place at school. By making it official they have to follow it so just because our kids are 9 it doesn’t mean they should be forgotten. Their needs are just as important as any other child with additional needs at school!!

Hope that helps a bit, but basically make it official at school and get the Head involved, that’s what they’re there for!

On another note, a few of us parents from this forum attended a continence tech workshop with our kids to help inthe design of an app that would assist kids with these kind of issues so we’ll see next month how this pans out and I’m sure someone will feed it back on here about it’s success :0)

[fuzzalert in reply to MrsSquirrel]

Re movicol. They always treat Bowels before bladder! You can always request an x Ray to see if he’s constipated otherwise ask why they’re giving it?

My son has been the nhs flow chart of oxybutinin, tolterodine and vesicare. He was given funding for PTNS treatment following urodynamics test. Yes had bloods, x Ray and mri. So yup he’s been through it. The frequency has definitly reduced in 5 years from 20 wees down to average 10/day but sadly instant spraying urgency and accidents still exist!

No idea what our next steps are!