Do we just sit and wait?

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Clarabella
Posts: 3
Joined: Mon Jun 05, 2017 10:14 pm
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by Clarabella on Fri Jun 15, 2018 12:10 pm

Do we just sit and wait?

My 6 year old daughter has been diagnosed with an overactive bladder, we have been told by our urologist she will grow out of it however she has never been dry and we are not seeing any real improvements. I feel like we are being fobbed off and don’t really know how best to help my daughter and I was wondering if anyone could advise us. I will write a brief history below.

We attempted potty training at 2 and a half and gave up, at 3 we tried again and due to the pressure of school we left her out of nappies even though she was not really dry and was soiling. Initially the main problem was the soiling but I started giving her regular prune juice and now she is on Movicol and soiling is much more rare and so it is mainly the wetting which is the problem now.

We have followed all advice given to us, she only drinks water and we give her 1200mls of water a day. She doesn’t really know when she needs the toilet as she gets confused between her bladder twitching and her bladder being full, also every time her bladder twitches she leaks a fair amount of urine anyway, she wears a wobble watch to do 2 hourly voiding. Just before she turned 5 I tried to express to our urologist what a huge impact the problem was having on us as a family as she was wet up to 10 times a day, her skin was often sore, she was smelly at school and I had to carry a travel potty around with us everywhere and I felt she was getting too old to use this everywhere and anywhere. The urologist told me that my anxiety was impacting on my daughter which really upset me as I try to stay so calm on a daily basis but that appointment was my only opportunity to get help.

We sought a second opinion privately and they put her on oxybutynin 3 times a day which worked amazingly well, she was almost completely dry for the 8 months she was on this, her bladder increased from about 80mls to 200mls she was on this just wearing ‘panty liner’ type pads. However the private urologist told us the oxybutynin was just short term to ‘retrain’ her bladder so we weaned her off this and the problems have returned and I am very wary to put her back on this long term without knowing more about what is going on and the side effects of oxybutynin long term.

She also recently had a scan which showed her kidneys are normal, her bladder held 130mls when she needed the toilet, she had high pressure on urination and then had a 37ml residue after going to the toilet which increased to 70mls in 5 minutes after going to the toilet, I don’t know whether this is normal or if this could be running down from her kidneys. So we have now been told by the radiographer to take her back to the toilet after 5 minutes to try to reduce this amount, I have tried to contact the urologist for more clarity but have heard nothing so I guess we need to wait until August for our appointment to get any help. My daughter is also now back on one dose of oxybutynin before school to try to get her through the school day even in very absorbent pads and we still have accidents.

She was exposed to an antiepileptic drug in uterus and I am worried this could be spina bifida but no one will look into this for us at the moment, all we are told is wait and see if she grows out of it, my clinic is full of little Riley’s. But at the moment I feel completely helpless, I can’t see my daughter ever being out of pads and yet we have no support with our current situation.

Any help or advise you can give me would be so appreciated. Should we just sit back and wait and see if she improves or should I be pushing for answers?

Thank you in advance,

Clair

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Mr Sachin Malde
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Joined: Thu May 25, 2017 1:43 pm
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by Mr Sachin Malde on Thu Jun 21, 2018 9:16 am

Re: Do we just sit and wait?

Thank you for your message and i'm sorry you've had such a difficult time. It sounds as though you've tried a lot of different things and seen a number of people. Unfortunately there is no quick fix for these symptoms in childhood and I can understand how distressing this time must be for you. I would suggest seeing a specialist paediatric urologist who specialises in bladder problems as there may be other treatments that could be trialled. Hope this helps.
Mr Sachin Malde
Consultant Urological Surgeon - BSc(Hons) MBBS MSc(Urol), FRCS(Urol)
http://www.talkhealthpartnership.com/on ... _malde.php

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