11 year old daughter having botox

[Juel1]

Hi My 11 year old daughter is due in November to have her second lot of botox to bladder after having her first lot back in March.

Her Diagnoses are constipation Repeat UTIs Urinary incontinence with urgency and urge incontinence as well as incomplete bladder emptying.

I am very apprehensive of doing this again as she was so poorly after last time. It has helped calm her bladder a little and we are hoping to manage it better second time around .She can't empty her bladder completley and has to do this through clean intermittent catheterisation , after the last botox she had several UTIs because she wasn't catheterising enough so we now follow a regime of every 3 hours, this has helped alot but she still isn't dry all the time inbetween her catheters and can still have puddles on the floor when she is at school as well as occasional faecall incontenance,she also wears molimed incontinence pads which she changes every 3 hours.

She suffers with constipation which she takes movicol for and we also use the Qufora mini pump system, but if we aren't on top of this her bladder will suffer.

She has also had two procedures for bilateral Defux two years ago and has a small dysplastic kidney.

She is now under the care of Great Ormond st hospital they are treating her for a neuropathic bladder. But she has no visual disabilitys beside this, she is a normal girl who loves Gymnastics and dancing you would never know any thing was wrong.

It has helped me alot reading about other children and the comments which have been written, i thought this was worth posting if there is anyone out there who's child has the same problems as mine or has had botox

I have no idea what the future holds, if this is something she will have to deal with all her life. I hope one day it will improve for her, she is so brilliant having to do all the things she has to do, i worry about being able to help her with these things as she gets older and going to secondary school next year.

[Charlie5angel]

Hi Hun, I'm sorry to hear about your daughter, we have similar with my 13yr daughter. She has a rubbish emptying bladder as described by the consultant which was caused by a uterecole which is blocking the neck of the bladder, she tried the clean intermittent catheters but she couldn't do it, she has high functioning autism which is a nightmare at the best of times as she is highly anxious and under CAMHS but the staff are wonderful with her at the Evelina. One of the play therapists suggested she may need Botox but I have no idea what this entails, she already has a supra pubic catheter in place which is helping to empty the bladder but it has come with problems such as regular UTIs which she never had till she had this fitted, she has a granulona (extra skin) which had fused to the tube which caused mayhem when it was time to get it switched over for a new one, I think the consultant might suggest she tries the self catheters again which obviously we are worried that we will be back to square one again where she won't be able to empty again, I really feel for you though, it's so traumatic for them and they seem to lose so much control of what they can or can't do, I think that's half the issue with my girl is that she likes to have some control but things don't always work out that way for her, good luck though, ps, what does the Botox do just do I know just in case he suggests it, thank you xxx

[Juel1 in reply to Charlie5angel]

Hi

Thankyou so much for your reply.

My daughter had a urodynamics test done back in Dec last year which showed marked large overactive contractions, which qualified her for the botox.

I hope I have this information correct for you, the botox is injected into the bladder wall using a cytoscope (a thin tube with a camera inserted into the urethra) they go under an anesthetic for this. They then inject botox into the bladder wall It then takes a couple of weeks to start to work, it paralyses the contractions of the overactive bladder which stops leakage and urgency, but it has side effects more UTIs retension (not being able to empty the bladder completley but as my daughter is unable to do this anyway and already can catheterise it suited her.

I don't know if this helps but my daughter was very panicky the first few times of catheterising , she was only 7 at the time and within no time she was doing so well. I hope it works out for your daughter to.

I would be interested to hear if she ever had it done.

All the very best to you both x

[Emzxx_87 in reply to Juel1]

I am going through similar things with my daughter. She is now 8, has been self catheterising since she was 6. She has dysfunctional voiding, with varying residuals. She also suffers from uti's and frequent daytime wetting (her nighttime wetting has improved since ptns therapy) . We have tried bio feedback, many medications,she has just had the ptns treatment and is now starting tens therapy. If she shows no improvement by January they were talking about botox for her too. Would you recommend it?

Emmax

[Juel1]

Hi

Yes she does sound similar.

It would be good to speak to you again in January really, as I think we will know more second time around she is booked in mid November.

All I can say when she had it done in March, we didn't manage her well afterwards because she was getting really bad UTI's, she was in so much pain to catheterise I couldn't make her do it, but that was wrong because she wasn't catheterising enough and the botox had worked well, her bladder was able to hold on so there was so much she was retaining it was causing more infections and more pain. She was very poorly.

We then had a follow up in May and they gave us strict instructions to catheterise every 3 hours and changed her prophalaxic medication,then after a few weeks she got better and we saw a real improvement although not consistent, she would go a couple of weeks, completely dry, no pads, no change of clothes, it was lovely! She would still have bad days but as a whole there was definitely an improvment enough to make me want to try it again and from what I've read and been told it may work better second time around, so I am hoping with better knowledge and management on our part as parents and really hoping she doesn't get any infections we should be able to see more of a improvement this time around.

I am not sure how you message privately but I am happy to do this in January, to let you know how she is getting on as I would like to know how the PTNS worked as we haven't tryed this option and it has been offered to us.

If you dont mind me asking. How often does your daughter catheterise, is this something she does alone at school?