Got a bit weepy after urology clinic yesterday...

[MrsSquirrel]

We were seen by the paediatric urology consultant for first time yesterday (I have flagged up continence issues since son was around 3 or 4, properly taken seriously after he was 7, he is now almost 9).

I was so hoping for some answers after MRI, scans, 2 years under continence service.

We got 'will probably grow out of it, step up the Tolterodine and take Movicol, come back in 6 months'.

I held it together in the office, but when we got outside I got quite upset. Hadn't realised just how much hope I had pinned on this appointment.

I know many of you will know how I feel.

Maybe my expectations were just too high. We still don't know why our son is having 20 plus trips to loo/accidents a day plus wet beds at night. I just feel deflated and weary.

The good point is we are going to Nottingham hosp for the next appt. and they will do uro flow tests etc there. Anyone further down the line who can offer me any advice as to what might come next? It all seems such a long slog.

Meanwhile, the poor lad is getting up and down in class every 15 mins - not helping his time at school in the slightest (and he has concentration problems at the best of times).

[Helen36]

Hello, I’m so sorry to hear that this didn’t bring you more answers or a plan that feels more like a step in the right direction. I can’t shed anymore light on what might come next, although I found the uroflow and voiding scans they did at our appointment did help me understand a bit more about what was going on for my daughter. No magic bullet though

I think there’s something about this time of year that just makes it all seem worse: another school year and still not sorted... I burst into tears in the middle of the parent teacher meeting when the teacher (not my daughter’s one) made a joke about giving House points for children that finished their water bottle, so she was sorry if they were running for a wee all the time but at least they were old enough not to wet themselves now. I just felt so different to everyone else there chortling along to her joke.

So... Big teary hug for you and let’s try and keep believing they will get there in the end x

[MrsSquirrel in reply to Helen36]

Ahh thank you! It's always reassuring to know I'm not the only one. Yes - it is that time of year...though we have a much more positive teacher this year (we battled the old one about keeping on top of water intake for ages and changing trousers reminders)

[Jayjay-1]

Sending you strength - i know how it feels to come out and be completely crushed . My son is 11 and we are awaiting urology dynamic testing - and waiting ! I wonder if really realises the enormous stress it puts on families having these problems- sometimes I wonder how much longer I can keep going with it if I am honest with myself but I do !! X

[Char1987]

Before you go for the testing , do a diary with what he drinks and toilet trips and and when he is wet , do this for a week , just to speed the process up as this is what they will send you away to do so they have some kind of idea with what is going on , my daughter is under Birmingham children’s and the urology nurses there are amazing and when we went for the urodynamics test and flow meter they explained what was going on and really helped me understand , so fingers crossed you get some answers , they also tell me to only let her drink milk or water and that helps , if we go out for a meal or as a treat she will have something different to drink , fruit shoots ,capri suns, oasis and flavoured water really irritate her bladder.

[MrsSquirrel]

Thanks Char1987 - we will try to do this over half term though it is impossible when we both work/he's at school to somehow record all week. We have done diaries for continence nurses before and consultant said to do them again. Last time we just did 4 lots of weekends as it was more practical then.

[Piper2017]

If it helps you to know I usually end up crying in every consultants office.i think you can't help but hope that each different Dr you see will finally have answers or new ideas and it's just heart breaking when they don't.