Botox for bladder

[Purple3]

My 7 year old daughter has overactive bladder and her bladder is small for her age. We have spent the past few years jumping through all the hoops that the incointence team and doctors have thrown at us. We have been on oxybutyn, desomelts, toltotradien bladder training and tens machine. Nothing has given us any major relief from constant wetting accidents and leakage through the day with the constant urgency when she does need to go. We have never had a dry night either. Finally she received her operation last Thursday for Botox treatment into her bladder at Evelina children’s hospital. Today was the first glimpse of improvement, it is such a massive achievement that she has come home from school today got cleaned up and changed and has managed to stay bone dry from then till bedtime tonight. Only you parents will understand how over the moon I am right now. There wasn’t even the slightest drop of leakage all evening and no frantic dash to the toilet either. I’m just keeping my fingers and toes crossed that this is just the start and we might have actually found something at long last that can work for her.

[Charlie5angel]

That is amazing, you must’ve feel so relieved and your daughter too, we are exactly the same but Botox didn’t work for my daughter, we are going for the second lot next month, I hope this continues for your daughter as this will massively improve her quality of life, so pleased for you xx

[Purple3 in reply to Charlie5angel]

Thank you, I just don’t want to get my hopes up too much and then be disappointed again but at the same time we need to stay positive if that makes sense. It’s such an achievement for her and yes if it continues it will make such a huge difference to our lives. I hope your daughter gets some positive results too next time around xx

[Piper2017]

Delighted to read your post.my daughter is due to have this procedure shortly and am hoping for a success story like yours

[Purple3 in reply to Piper2017]

I will keep my fingers crossed for your daughter. We are Day 6 after the operation now and we can see slow small progress at the moment so just hoping that it continues. Apparently it can take a couple of weeks for it to take full effect so I’m praying it will continue to get better.

[TMMZ]

My daughter had her second dose of Botox before Xmas, and it’s been life changing for her, I just hope it can continue, good luck

[Purple3 in reply to TMMZ]

That's fantastic news, at the moment we are on a course of antibiotics for a uti, I think this is common after the op even though she had a preventive course straight after op too. I hoping it will continue to improve once her infection had cleared. Definitely we can see the change in urgency and desperation for the toilet just need to get her dry now.

I understand when you say it is live changing, so pleased it has worked so well for your daughter.

Did you notice more of an improvement after the second dose compared to the results after the first? How long did your daughter between doses? I know the time scale varies from child to child.

Xx

[TMMZ]

Oh what a shame, we could tell Mia was fighting something after both ops, luckily didn’t develop into anything, but she was clammy, shivery in the week after. First dose lasted 2 months completely (no accidents) and a further 3 months (ok ish) in the weeks before the second dose it had completely worn off. Both doses have worked really well, she is very lucky. It was 6 months between doses. It has lasted longer this time, 3 months, she had an accident on Friday, but had ended up constipated so I think that was the cause. It was fairly immediate result for my daughter, and really helped build her confidence. Hope all goes well and infection clears quickly

[MrsSquirrel]

That's wonderful! We are going to have procedure to fill bladder externally. Once they can see what is happening, we may well be looking at Botox. Our son is 9 and we hope that this will allow him to have control. At the moment we have up to 20 accidents/dashes to the loo a day. School are pushing for him to go in pullups as its so disruptive to his education : ( So very happy for you Purple, that you're finding light at the end of the tunnel - thanks for posting to let us know, gives a ray of hope! xxx

[Purple3 in reply to MrsSquirrel]

I think we spoke far too soon 🥺 since having the op she has had three courses of antibiotics for Uti infections and we were up through the night with her last night again. She is still wetting and still running to the loo, it doesn’t seem to have made much difference to be honest. 4 weeks and we still haven’t had a follow up appointment, just called and got to wait another 4 weeks for an appointment 😔 when will it end we really don’t know where to go from here 😢

I really hope that it works better for your son x