Some of you will know I've posted in the past about daughter with overactive bladder. I wanted to share some amazing news with you and give those going through what we have some hope that there is light at the end of the tunnel.....
My daughter is now 13 and after almost 8 years of appointments, bladder training, medication and a lot of tears and frustration, she's now been totally dry in the day for about 6 weeks and dry at night for just over a fortnight.
I think the turning point for us was bio feedback training which was done at the Evelina about a year ago. The calm but fun way that they helped her really tune in to her body really made sense to her and something just clicked. Since then we've had steady improvement during the day and this summer finally decided to try and get night times dry too.
I know we will probably have days where things don't go as well but I'm so proud of her and excited to share that we have got to this point.
I can't thank the team at the Evelina enough, they've been amazingly supportive, never giving up, trying new ways to help and making her feel in control throughout.....but most of all I want to shout out to my gorgeous girl. She's never let it get her down and I'm so proud of her. 💖
To those still struggling, take heart, and I wish you all strength to continue through hopefully with a little faith that others have got a happy ending.
Written by
AliStan
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Hi AliStan - THANK YOU - that is such a lovely post to read!!!!!! I have followed your posts and replies on this forum over the years and I am so, so, so pleased for you and your daughter that you have progress. The Evelina are amazing and we are so incredibly lucky in this country to have experts like them out there to help. As you say, there may well be set backs and changes to deal with, but to have such a positive period of stability is such an important step forward. Well done to you and her too for persevering through such an emotionally and socially tough condition. We’ve all cried those tears of frustration too and I think it is so important that we remember to tell people on this forum that there are success stories out there too! Big virtual hug and high five from me and my daughter 🥳
Hi AliStan, that’s such great news for your daughter! What a positive step forward for you all. Would you mind explaining what Bio Feedback training is? It’s not something I’ve heard of before. My daughter also has an overactive bladder and whilst it has really only caused problems at nighttime, and medication has been really successful for her, I’m interested to know about different treatments that have worked for others. Thank you.
Bio Feedback training wasn't something I'd heard of before we did it but I'll try and give my totally non technical explanation!
We initially did a session with the Bladder Nurses. They used sensor pads in the groin area that picked up movt in the muscles around the pelvic floor and bladder and then connected those to a computer programme. They showed her how she could use her breathing to impact how her muscles worked. So breathing out relaxed the muscles and enabled her to fully empty her bladder better at the end of a wee. The computer programme let her play a computer game where she then controlled the movement of characters on screen in the game through breathing and using her bladder/pelvic muscles meaning she could really see the impact of what she was doing combined with feeling it too. Sounds a bit weird but it was definitely a light bulb moment and gave her the confidence that she was in control of what her bladder muscles were doing. They then followed up with a couple of phone calls to see how she was doing and then redid the computer game test at the clinic a couple of months later. At that second in clinic session, she was aceing the game!
Hope that makes some sort of sense - sorry, really hard to explain!
We are lucky to have been referred to the Evelina which is a childrens NHS hospital associated with Guys in London. They were amazing as just never gave up on us....although there were quite a lot of long waits between appointments so was far from a quick path!
Best of luck with your child and I hope you get the help you need.
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