My little girl

[LauraLillyPugh]

My little girl is going through being tested and medics trying to figure out what is going on...she suffers with recurrent water infections and has dysfunctional voiding and an overactive bladder...anyone else in a similar position? She is 5 soon...I know this is early to be under treatment/care for these issues but she has suffered since she was 3.

[Helen36]

We have an overactive bladder in my nearly 5 year old, almost certainly caused by some constipation issues in the past that we now have under control. We are being treated for the OB with medication but despite early progress have regressed and are now waiting a referral. I have seen others on here with multiple issues like your daughter so I am sure you’re not alone, but agree we’re lucky to be under treatment so young.

[LauraLillyPugh in reply to Helen36]

From the different conversations I have had with different medics it is almost certain that we are in this position as a GP didn't diagnose and treat my daughters first water infection at 2.5yrs old and then we have had increasing problems since. We have had a few good days recently so I am hoping that we are on the up again but despite prophylactic antibiotics and another medication for her bladder she continues to get water infections and then it feels like it is a hundred steps backward...I just feel for her because it's been going on for so long and as much as I would like to say that I am patient every day with it I have bad days where I'm sick of the 15+ changes and the washing so was trying to reach out for support from other parents to try to help me have a more positive approach more often! I have just bought her a vibrating watch to try to give her more control over toileting to see if that helps too xx

[Helen36]

Oh that’s so sad to hear. How awful for her that it could have been avoided. I happen to have a UTI at the moment and it has really made me reflect on just how awful it is for children with this. Even just with an OB it’s very similar symptoms with the urgency and my daughter’s OB medication gives her pain in her urethra sometimes. Hopefully if they can get to the bottom of the UTIs for you then it will mean the rest will follow.

And I hear you on how it is so hard to stay patient with the accidents. Will she use pads? (Like the dry like me ones?) They have massively helped my sanity. My daughter’s not a huge fan of them but will wear them if we’re having a bad day, especially if I bribe her with a choc! We talk about her naughty bladder to try and make it clear it’s not her fault and I try really hard to explain I am not cross with her. Staying patient as mum is the only thing we have any control over as parents in this sorry situation so I think it’s really worth a deep breath and kind words ... but I say that knowing there times I have failed to stay calm that I wish I could take back!

Who are you seeing medic wise? Have you got to a paediatric urologist? That’s who we are waiting to see. X

[LauraLillyPugh in reply to Helen36]

Thank you so much for replying and being honest with me like this it is really helping my sanity! I haven't tried pads...never even thought of it!! She is under a paediatric urologist consultant at manchester children's hospital and then we see urology nurses at a urology clinic who are amazing. They are trying pelvic floor stuff at the moment but we have got to the stage where I have to spot the UTI as she has had that many that she doesn't always have the symptoms nor notice it herself which makes me very sad as mummy to her!! They have told us that she has an overactive bladder and dysfunctional voiding...she has had play therapy to talk about her cheeky bladder and we use the "1,2,3, Do I need a wee" phrase and most of the time it helps but there are still so many times when I feel I am letting her down and I should be able to do more and make it better for her but I can't! Xx

[Helen36]

Oh the poor thing - I’m not surprised she can’t tell when she has a UTI with all that going on. It sounds like you have got the care you need which shows what a fab job you are doing for her as you’ve got her through to that. There are so many stories on this forum of people battling to get referrals. On the pads, the dry like me ones are a bit chunky and I’ve seen a few people on here say Tena lady are actually better, and cheaper so maybe give those a whirl first. We are still working through the bulk buy I did before I read that...!

My only other tip is to try and find a way to accept that we are in this for the long haul. These are chronic conditions that need management to help the symptoms but there aren’t any magic bullets. I’ve had a bit of a moment recently where I’ve realised that this is something we probably will still be dealing with when she’s 8 ... or even older. This is sad but it also gives me a bit of a reality check that I can’t be perfect in managing this. I will sometimes forget to remind her to go, not manage to get her to drink enough, get cross because that was her last pair of clean school tights and it’s 8.30am or dread a party with parents who all seem to have children that have been dry since they were born whilst I change multiple accidents! It sounds like you are doing everything you can so hang on in there

[LauraLillyPugh in reply to Helen36]

I will reply more detailed when it's not 11:36 but THANK YOU!! you have helped restore some sanity xx

[LauraLillyPugh in reply to Helen36]

I said I would reply more fully when it wasn't so late and life has just got in the way!! You really have helped me to remind myself that I'm human too and because I love my little girl so much that it why I get sad and frustrated but I must do my best to keep calm! I have since had an appointment where the urology nurse has said different to the doctor about how much to let her drink and this has had a massive impact (positive) as well as buying her a watch that vibrates to give her some control back! I will try anything!! Once again thank you so much for restoring my sanity!! Xx

[Helen36 in reply to LauraLillyPugh]

Ah thank you! It helps me too to know there are people out there that get how tough this is! I’d be interested to hear how you get on with the watch, I’ve wondered if this might help us too. And in my defence at replying at a ridiculous hour, my little girl had woken up with pain in her front bottom - which happens reasonably frequently and we think is a side effect of the oxybutynin. I was sat on her bedroom floor trying to shhh her back to sleep! Made a change from googling alternative therapies 🙄

[LauraLillyPugh in reply to Helen36]

Yeah that's why I joined here to try to find someone/some people to share this with as I have been driving myself crazy cos I feel like I'm failing her even though I know that it is out of my control! We are now having the struggles of her being over sensitive which seems to be her side effect of tolterodine...so trying to be sensitive to her and teach her how to manage her emotions whilst remembering that she isn't quite 5 yet...sounds like your poor girl has it rough too with pains!! It's nasty that they have to go through it but at least they have us who are willing to seek out real help for them cos we love them so much!! Xx

[Helen36]

Hello - me again! Have you spotted this thread on the forum that came in a couple of days ago…? healthunlocked.com/eric/pos...

Thought it might be of interest and I know not everybody looks at this forum as often as I do…!!!

[LauraLillyPugh in reply to Helen36]

Yeah I did thanks and was following it!! So similar to my plights!! Thank you for thinking of me when you saw it xx