Back to square one with daytime wetting HELP :(

[dlovessundays]

Hi, I'm really struggling to keep my cool with my 5 year old boy now. He's been diagnosed with overactive bladder and is on oxybutynin. First few weeks were brilliant, wetting stopped and wee volume increased to normal, however he's just regressed and now will just stand there and full on wet himself. He says he can't feel it, but then how did he go 4 weeks with not a single accident? Ive done loads of rewards/charts tried talking to him. He doesn't want to wear pull ups to school but I can't just let him go and wet himself as he is literally dripping from his trousers and he won't change into his spares. I couldn't prove enough spares to get him through a day anyway at the moment. He's supposed to drink more but won't and ignores my reminders now/just won't listen to me. Its damaging our relationship :.(

[Poppymum]

Hi,

I feel your pain.

Our daughter is nearly five ( in October) and just about to start school and has been daytime wetting since we started toilet training her aged two. She has several wet accidents per day.

Can I ask how you got your diagnosis? So far we have seen the GP loads of times over the last two years, seen a paediatrician several times, health visitor, continence nurse and nobody seems to help!

We filled in an input output chart where we had to keep her in four days and weigh knickers when wet and measure wee etc! But the continence nurse wasn't interested in it!

I wonder if it's because our daughter isn't at school yet. Maybe when she starts they'll take it seriously? Our health visitor wanted us to have oxybyutin for her but only the paediatrician can prescribe it and she keeps saying increase her watch alarm intervals, but our daughter is often wet before her hourly alarm!

I'm afraid I can't help you. I just wanted to say that I feel your pain. I worry our daughter will go through this for years and don't want her being the 'smelly kid' at school.

I hope your situation improves soon.

Before I had an incontinent almost 5 year old, I used to think kids starting school not toilet trained must be down to the parents, I now know this isn't the case! We have tried to get our daughter help for two years and got nowhere.

I like to read these message boards to know it's not just us. When I meet up with friends and their children say to them 'mum, I need a wee' I wish mine would say that one day rather than me checking her, seeing she's wet and then going to put her on the loo to 'do the rest of it' and changing her!

How does your child's school deal with it?

[zkaren123 in reply to Poppymum]

Hi... My son who is now 13 was diagnosed with a irritable bladder around the age of 6, his primary school was very good at letting him use the toilet when he needed and not just at break and lunch times, sometimes I did need to go in and remind certain teachers though!. He would take a large water bottle in to school with lines on to remind him to drink so much in the morning, mid morning and afternoon this was always successful for a few weeks but he's never been the best drinker which would frustrate me. When he started secondary school was given a toilet pass again to allow him to use the toilet when needed, and finally at 13 it's all starting to sort its self out at last. Over the years it's been hard to deal with especially the older he got the less interested he became in bladder training, we've fallen out so many times over the years with the constant wet smelly pants and the I don't care attitude. It's not just you this is happening to and feel for you all that are dealing with this, but there will be a end to this at some point.

Good luck 😉

[dlovessundays in reply to zkaren123]

Thank you so much for your reply. I hope your situation is resolved soon. I really need to get my head around it being a long term thing I just really worry about him at school. I was badly bullied throughout school and it terrifies me that he might be targeted because of this. You've given me hope. Best of luck to you and yours x

[dlovessundays in reply to Poppymum]

Argh I replied earlier but it doesn't appear to have saved it. You keep fighting to get treatment, it sounds like you're getting the run around. His continence nurse prescribed oxybutinin but his GP had to sign off I suspect if under a paediatrician the GP would defer to them. School have been great and he's not the only one who still wets. so your girl won't be either, in fact his teachers have really helped me deal during reception year I'm just so worried now he's going to be in year one he'll get bullied because of it. They've let him wear his wobble watch but he ignores it. Try setting it for 45 mins though, that's the longest mine can hold it without medication. I really get what you're saying about his pears asking to got to the loo and wishing he'd do it especially when he then wets when we're out and we have to leave as we've run out of spares. Good luck getting treatment and hopefully it will resolve it

[AliStan]

My heart goes out to you, it is so difficult to understand as a parent how any child doesn't see that being wet is an issue. Like you my daughter has an overactive bladder, she's just about to turn 8. I've been in the same place getting so frustrated with her indifference, arguments, tears, you name it and we've been there......but there were times when I got glimpses that she got it. I got so cross when she started hiding wet things and putting wet knickers back in her clean knicker drawer but when I reflected I realised that it was the first time she really knew that something was wrong and she wasn't happy about it.

For us we had a breakthrough about a year ago which coincided with final getting the overactive bladder diagnosis. She suddenly decided she was going to work with me instead of against me. I wish I could tell you what made that change but I think in the end it came down to her maturing enough to understand a little bit more. I also learnt that often the indifference is their coping mechanism but they don't really know it. I made a pact with her that I would only get angry if she tried to hide things from me. I know she can't help the accidents, we're working on that but it's not a quick fix, but she can work with me to manage the consequences of them. We still have days when she just doesn't notice being wet or more often just damp (but smelly) but for her that is what's been the normal state on and off for so many years and it just simply doesn't register. We have now got to a point in our relationship though that if I keep calm, she will let me check and then just go and change if it's problem. She puts wet stuff in the bath so that I can deal with it later.

As far as school is concerned, we've been really lucky to date that all her teachers have worked with me to help. She has a routine that means she goes every possible break time but also has agreement that she can go during class time if she needs it. She always has spare clothes with her just in case but tends not to use them unless she has a major accident and luckily most of hers are just not getting there in time so relatively small. I'd encourage you to talk to the school, this is an illness and whilst we've been lucky that I've never had to use this argument they do have a duty to work with you to ensure there is a care plan in place.

Try not to worry too much about the other kids, it will be a while before they really pick up on anything. I've always encouraged my daughter to be open about it and I think that's helped as friends then rally round her. I know there will be a limit to that but you've still got a few years.

Sorry, this has turned into a bit of an epic but be aware you're not alone and it will get better.

Hang in there and best of luck. x