Daytime wetting - bladder problems

[Mouffe]

Hi,

Our little boy is 5 and was diagnosed with kidney problems (only one works- the other is duplex and both have hydronephrosis) and bladder problems (over-muscular, possibly due to a ureterocele, which was operated on just after birth). Generally a normal, happy, bright boy. However he just can't stay dry at school (definitely not dry at night - no point trying yet).

He seemed to manage it at nursery to stay dry there all day (7:30-5 a couple of days a week) but never at home, and now not at school. Each day we walk home and he will wee on the way home, even though I ask before we leave whether he's had a wee. We have small leaks (probably a few ml) during the day at home, but also bigger.

He doesn't seem bothered, and no-one's mentioned it at school but I worry his friends will pick up on the wee smell over time and he'll become ostracised. I'm also worried about him getting sore because of the wetness. He did seem happy to wear 'pads' when we used to go out and about, to catch the drips, but now doesn't use these and they wouldn't last all day at school without leaking anyway.

Not sure what to do to help him. I find myself getting frustrated as he doesn't seem bothered by getting wet and doesn't want to take notice of us if we suggest he goes for a wee. I know we'll have to talk to his consultants, but it's a while until we see them again. Does anyone have any advice on what we can do to help him? Thank you x

[Charlie5angel]

Hello, I'm new here, I read your post, this sounds so very similar to what my daughter had, her uteretocele didn't show up till she was 8, her only symptoms were constant weeing up to 15 times a day, she was tested so many times for uti's but all negative, I had to insist in the end that she had a scan as she was in a bit of a state, it was only then that the uteretocele showed up and also duplex kidneys which was a total shock to us, we went on to have MRI scan as she wasn't getting any better, it turned out she had a poor draining system which ended up with her having the duplex kidney being removed which was another shock to us all because they was going to discharge us!! So I was so thankful I pushed for them to keep looking as you know your own children and I was right, she was fine for about 2 and a half years after but now it's gone the other way, bladder retention which has now resulted in her having to learn how to catheterise herself, please don't let the doctors fob you off, I am a very quiet person but I've learnt how to be more assertive especially when it comes to my kids, is he in pain? does it hurt when he pees? always check everything, he could be suffering from reflux which is what my niece has, constant dribbling and always wet at night, I really hope you get him sorted as we know what an impact this has on the family and for for him too xxx

[Mouffe in reply to Charlie5angel]

Thanks so much for your message. We're so lucky that his problems were picked up so early. I think it's harder for us because he doesn't seem to be bothered by it at the moment but now he's at school it won't be long until other kids pick up on his wet trousers which he doesn't want to change. I think we'll have to talk to the teachers and school nurse. Thanks for replying x

[BumblesMum in reply to Charlie5angel]

Hi, did your daughter have any scans that didn't show anything up early on? Bumble has only had one scan a year ago, that was apparently 'normal'. Have you ever done any trials of medication too? What you mention about pain is true at times with my daughter, we too have had negative tests, but recently she did have a uti so had a weeks course of trimethoprim.

[Charlie5angel in reply to BumblesMum]

Hi, no she had never had a scan up to then, her first scan showed the uteretocele straight away, we had no idea it was there and didn't even know what it was! I remember them all staring strangely at the screen then looking at us and I was terrified thinking what had they found, apparently it would of been there since birth but it caused no problems up till then which was strange but my daughter had just got used to how she was feeling and just accepted it until I kept pushing for a scan, she never tried any medication trials but I suppose if they hadn't found anything that may of been a possibility if she was still having problems xx

[BumblesMum]

We don't have a formal diagnosis except perhaps for 'overactive bladder' but so much of what you shared, rings true for our bumble and our family!

It seems from my husband's meeting on Tuesday with our daughters class teacher that she does change herself and requires no help, however this isn't always the case at home! Bumble goes in with an oversized rucksack as it has her first initial on it and was gifted from very good friends in Canada last year, she loves it! This has everything in it, currently I'm putting 2 trousers, 2 dresses and about 3 pairs of tights. Keeping up with laundry is hard!

If I can suggest anything it's to only ask about toilet if you are able to accept the reply! Oh how hard it is to do though! I don't want to be telling bumble all of the time because there are days when she can go longer and by herself without being prompted. After school is a definite issue for us too! I tend tell her we're going straight to the toilet before walking home! On the days we don't, we always get caught out, either wet on way home or during extra play on equipment in playground.

How well does your son drink and eat at school? As we've had to explain this more recently! Bumble will quite happily sip drinks, but needs lots of prompting to finish one in a sitting or reasonable time!

Can't speak of a meeting with the nurse, as only had one conversation several months ago, but definitely looking to get a meeting with various people together asap. This is with a view to putting a care plan in place so everyone is 'on the same page.

Sorry for my random thoughts, hurrying at the potential end of my son's nap time! Let me know how you get on.

[Mouffe in reply to BumblesMum]

That's brilliant. Thanks so much for your comments. You're absolutely right that it's pointless us endlessly asking if he needs a wee, especially as we don't even know if he can tell he needs one! We'very only just started encouraging him to drink lots in one go, having read it on Eric. It's just a relief to know we're not the only ones.

[Poppymum in reply to BumblesMum]

Does bumble use pads? Our daughter ( 6 and a half) has been in the tena extra ones for a year. We tried three years of just knickers but the washing was crazy and no progress so she’s in pads now which is easier! She still wets through clothes sometimes but mainly it’s pad changing.