Struggling with 5yo urinary incontinence - oxybutynin not working, possible recurring UTIs, behaviour v difficult to deal with

[dontcryitsonlyajoke]

DD is 5.6. She potty trained brilliantly at 2. All went wrong at 2.6. At 4 finally old enough for referral to continence clinic. Seen at 4.6 and now one year on.

She is on 2.5mg oxybutynin twice per day. Bladder scan has shown increased volume and finally (at last month's check up) she is fully emptying bladder. So oxybutynin appears to be working on her bladder.

But still has maybe 3-6 weeks every few months of pretty much no successes on loo at school or home, or OK when out and about but wees in pants at home. Even when doing well she will rarely gave a completely dry day.

Slight constipation occasionally possibly an issue. Also she does massive poos! So a month ago added in 1/2 sachet of movicol daily to ensure things keep moving. She is pooing regularly every day now.

We are now 3 weeks into a hellish regression, back where we were before meds. Have been close to this since she started meds 6 months ago but this is the worst. She will wee in pants, then clench and not empty on loo, so then relaxes a short while later, wees in pants again, can't release on loo, accident again etc. She is now back to sitting funnily to hold her wee in and me having to tell her to go to the loo. We're at square one again basically even with medicines 😪

Worst, her behaviour has deteriorated. She sobs, she wails, she lies, she hides it, she refuses to acknowledge she's wet, she screams if I suggest or ask or tell her to go to the loo. She behaves like a toddler about it. And then she dusts herself off and behaves all stiff upper lip and breezily trying to persuade me she's a good girl again (I don't say she's bad, but she is emotionally very astute and like me is very good at reading people and she can see if I show even a tiny hint of frustration or upset and she reacts accordingly)

I am struggling hugely. My relationship with her isn't great right now because of the regression and her behaviour worrying me which obviously then makes her behaviour worse as she picks up that I'm not neutral about it. Even when I force myself to be calm and neutral she sees that I'm working hard to do that. And then today when she walked into the house right past the loo and sat on the sofa and weed on it, I couldn't remain neutral as it angered me and of course she started shouting/crying/storming off because I failed to hide it :(

Not due at continence clinic again for 3 months. In theory I can phone but cuts etc mean they're spread very thin and can't/don't always get back to me and it's too hard to explain in 5 mins.

DH is a great dad but TBH on this he is out of the house 12 hours a day and then the rest of the time he seems to just defer to me on this, or just forgets to manage her toileting, plus I read the signs of her needing a wee better as I know it more so I push her to do something about it etc. Consequently she currently hates me and rushes to daddy so it's all that bit harder too.

Any thoughts, ideas, support, tales of yoir child coming through this? I feel desperately alone.

[dontcryitsonlyajoke]

Bump

[mummywizz]

I take it you have done the whole fluid chart thing. Are you regular toileting by the clock. Have you had advice re type of fluids to avoid and how much fluids acceptable etc. None of this is her fault bless her, especially if she has truly got an overactive bladder, she may need her oxybutinin tweeking a bit. Can you see your continence advisor earlier than planned? It's not an unreasonable request, Im sure they'd hate to think you are suffering alone with this

[dontcryitsonlyajoke]

She has 1 litre per day spread over 4-5 drinks, agreed with nurse. No blackcurrant, mostly water, occasionally squash or juice (2-3x per week?) and maybe milk once every other day. I think drinking is ok - a struggle to get it in her but we can do.

The problem is that this isn't constant. We just seem to have a period of several weeks of this then it's brilliant for awhile. So don't think it's meds. Possibly constipation hence the movicol but she's regular and still having accidents.

I wonder about UTIs - we just checked for one as her wee was a bit smelly and she's having all the accidents. She had one. Never any other symptoms. I wonder if she is actually having recurring UTIs. When she has accidents it is smelly, different to normal urine. But never any pain so I've not thought about it until now.

Not toileting strictly by the clock as its tricky with school and TBH some days are very different to others. I do before meals and outings, and then midway through morninb and afternoon too. might need to start it more strictly though.

Nurse warned us it could be a 2 year process but I didn't realise it would have so many lows along the way :(

I just want it fixed before her friends start to notice or she gets embarrassed.

Sigh.