Botox

[Char1987]

Hi , I was wondering if anybody’s child has had the Botox injections into the bladder ? And if they did are they helping ?

[Charlie5angel]

Hi there, my daughter had the injections into her bladder and surrounding muscles, it was very straight forward and she found it working within a couple of weeks but that was in February but it has worn off and we are now waiting either for more Botox or different solution as she is having more biofeedback training on the 13th September so we will wait and see, she still has her pubic catheter fitted also so possibly looking for that to be changed over too , hope it goes well xx

[Juel1]

Hi

My daughter is 11 and she has had Botox 3 times, it usually lasts 6-8 months, it does help with her bladder spasms.She has to self catheterise every 2-3 hours , things aren’t perfect she still has to wear pads in her pants and she still has accidents but it is an improvement, they want her to continue with it for the next couple of years.

[Charlie5angel in reply to Juel1]

Hi there, I really admire your daughter for self catheterising as my daughter has had no joy at all, she suffers from severe anxiety and this hasn't helped at all hence the reason she has the supra pubic catheter, we are going to see a clinical pyhcologist next week as we've had lots of sessions with councillors but nothing has worked, she is 14 in a couple of weeks and we really wish for her sake that eventually she will be able to self catheterise herself as this is the easier but not very appealing option for he r, it's really hard on our kids isn't it, something that we all take for granted and for some it just doesn't work in the way it should, you must be incredibly proud of her, I'm very proud of mine as we've been through so much but it's still baby steps for her xx

[Juel1 in reply to Charlie5angel]

Thankyou so much!

Yes I am proud, she was taught at 8 and was so determined to make things better for herself, it wasn’t easy at first but words of encouragement for your daughter, Lola does catheters so quickly and easy, no pain, it’s just normal for her.

if there is no improvement over time they have spoken to us about Augmentation and Mitrofanoff .

I wish her all the best, your words made me cry, if Lola can help encourage her in any way, she would help her! X

[Charlie5angel in reply to Juel1]

Thank you so very much, we will get there eventually but I feel that it's a long road ahead, we were told about bladder neck surgery or mitronoff but obviously as a parent, I really don't want to make that decision with her, she would take the easy option every time bless her if it doesn't hurt as she's scared I've been trying to find a site where she can speak to others going through the same or similar, I think it's coming up to that time where they will soon be making the decision but they need to try and sort the anxiety first then maybe she will be in a better place in her head to cope with this being her new normal, it's just harder than I thought it would be as she's quite rigid in her thinking, hopefully we can move forward , I will keep you posted xxx

[Juel1 in reply to Charlie5angel]

Thankyou it’s nice to hear your words and experience, keep in touch x

[Birchykel1 in reply to Juel1]

I’ve only joined today and seen this post. Wondered how it’s going?

Can I ask, how did it get to the point where your daughter needed to be catheterised?

My daughter is 8, she still bed wets but because she suffers with her bowels they won’t really help at the hospital.

She gets infections often, currently on her 2nd in a month.

Wondered what happened with your daughter? Did it start with similar symptoms or something completely different?

Xx

[Francesca17x]

Hi it’s been great to read your responses. My daughter is getting Botox in Monday so I can let you know how it goes. She is eight and can’t self catheterise due to fear. We have tried bio feedback which I don’t think helped but tbh her muscles are in such a state that it would be a very long road. However after around six weeks she just used to lie and cry at the sessions because she was so traumatised by the whole situation. Good luck to your daughter and everyone else in the replies . Such a long road for these poor kids... not easy at all 😞😞

[Char1987]

Hi sorry for the late reply , my daughter had the Botox beginning of August and does seem to be helping and calming things down , she was self catheterising 4 times a day and still setting in between , the wetting has calmed down , and her sudden dashes to the toilet have also calmed down , but I have been asking her to attach the bags to the catheters (rather than straight into the toilet ) so I can keep track of how much she is getting out , and it seems a lot so I am unsure if she needs to add more catheters through the day ? X

[Ciaraivy]

Is it the enimas ?

[Char1987 in reply to Ciaraivy]

It’s the Botox injections into the detrusor muscle of the bladder .

[TMMZ]

My daughter had Botox at the end of June, (age 7) completely brilliant, she can now last up to 4 hours rather than every hour, apart from an odd few she has had no accidents. She doesn’t use a catheter, the procedure was very straight forward and apart from been tired the following week and a few stingy wee’e She has been great. She has problems with her bowel, but is only on meds for bowel now which we are trying to limit and sort with food/diet rather than meds, no more bladder medication at all. Hope that helps