Overactive bladder treatment for children

[Purple3]

Hi I have just joined this group and hoping to hear others thoughts on Botox treatment for overactive bladder. My daughter is 7 years old and her bladder is smaller than normal too. We have been under the incointence clinic for a few years now and been through all the bladder training, alarm watches and many different medications. The latest involved the visual dinamics testing where the put a catheter into the bladder and X-ray at each stage. After this we have been given a choice of Botox treatment into the bladder or another stronger form of medication but again has side effects. Has anyone been through the same please? Also where can I get incointence pads from for a 7 year old that are more like a liner pad rather than a nappy?

Thank you

[Charlie5angel]

Hi ya, we are pretty much the same as you, my daughter is 14 now and we have been through it all, after years of doing all sorts of investigations and operations and biofeedback training, urodynamics etc, she had Botox in February, from our point of view, we don’t think it worked as her leaking got progressively worse but we were told at the time she could have it repeated every 6-9 months which hasn’t happened, my daughter has the pubic mic-key button catheter attached to help drain her bladder as she struggled daily to pass urine as it’s just too painful, we are going for ambulorate urodynamics tomorrow which a new investigation for us, they are trying to find out why she’s constantly leaking with pain, she’s not got any UTI as she’s constantly being tested as she got them a lot when she had her supra pubic catheter fitted but that seems to of eased off now, everyone is different, the one thing I can say is that my daughter said it didn’t hurt and she was up and walking the same day after Botox in the bladder, it just didn’t work for her but I wish you and your daughter best of luck for when she has it done xx

[Purple3 in reply to Charlie5angel]

Hiya thank you so much for responding, my daughter has constant leaking through the day but that is down to her overactive bladder apparently. Even though we have gone through and explained everything to school she still comes home wet and stinking of wee. Now it’s getting colder she wants to wear tights to school like the other girls so now I have given in and she is wearing a pad in her knickers to try and catch the leaking and so she’s not smelly cause she has already been bullied at school with the boys calling her names. We had to stop the previous medications because of the side effects similar to the symptoms of uti’s and the go kept giving us antibiotics but when we spoke to the consultant he explained that these were episodes and not uti’s and so she shouldn’t have been taking all the antibiotics. So after changing meds again she starting having the same episodes but I managed to control them by distracting her until the episode passed and then we had to stop those tablets too. So now our option was to choose between a mediation called myrbetiq with side effects or trying the Botox. I’m so sorry it didn’t work for your daughter have they said what treatment is next for you? Did your daughter have a catheter before or do they do this as part of the procedure for the Botox?

Xx

[Narniesangel73 in reply to Purple3]

Hiya I’m not familiar with the treatments your talking about, my sons problem is different. I’ve replied as I’ve just been on ‘ eric’ website, is their any incontinence pants suitable for her. This is awful that school can’t support her more. Could you maybe go in at break times to support her? 💕

[Purple3 in reply to Narniesangel73]

Thank you so much, I have looked on the website but I was just getting confused with all the options 🤯 I’m just after a child’s version of an a pad rather than full on pants. It makes her feel babyish if she is in her pull up pants and she gets embarrassed easily. At the moment I have bought her some ladies pads but they are a little bulky. It’s just to catch the dribbles through the day.

We are constantly on a school and I suppose they have 30 odd other kids to look after too, it’s a lot better at the moment than it used to be in her primary school. She is under the care of the special needs co-ordinator at school and has a care plan in place it’s just sometimes that goes out the window when they are busy 😏 xx

[Charlie5angel]

Hi there, ah bless you, it's awful for our kids isn't it, in answer to your question about the catheter, she had a supra pubic catheter fitted last june as she was going to give the self catheterisation a go but it was too stressful for her and I know a lot if children do it but my daughter suffered from extreme anxiety due to all this plus she has been having trouble with the school, the school ended up wanting to do an educational health care plan but now the school is unsuitable and we are now in process of appeals and tribunals to get her into a school that can help her with her medical needs plus her debilitating anxiety, I'm really hoping we get some more answers tomorrow as her consultant said he's so close to finding what the cause is, she did start off with duplex kidneys and a double emptying system which caused a lot of problems, they operated on her and it seemed OK for about a year but sadly it all went downhill again, I feel there isn't much they can do and if they can it may be a more permanent fixture , good luck with it all and hopefully I will get a chance to post and update xx

[Purple3 in reply to Charlie5angel]

Oh bless you and your daughter you have been through so much. I really hope you get some answers tomorrow and yes please post with how you get on if you get chance, good luck xx

[Piper2017]

Hi,just wanted to let you know I got my daughter pads from iD Direct they are very good and we no longer have leakages through her clothes. I got some samples first to see what size/absorbancy would work best before I purchased any.

id-direct.com

[Purple3 in reply to Piper2017]

Thank you I will have a look xx