What helps children with detrusor overactivity (overactive bladder)?

Posted by helpingrachel @helpingrachel, Apr 11, 2022

Hi, my 7 year old daughter has been diagnosed with Idiopathic Detrusor Overactivity and decreased bladder compliance. The journey started with sudden and frequent severe abdominal cramps, which we came to learn are bladder spasms. Fast forward 10 months of Solifenacin treatment (which was unsuccessful in helping her pain), Rachel entered total urinary retention and has been catheterised (suprapubic) for 3 months now.

We have been recommended to trial botox injections, and if that is unsuccessful, they recommend open abdominal surgery – bladder augmentation.

Are there any other children that are going through this?! All of our research and discussions seem to be within the adult community. I would really love to know if children have had botox injections to their bladder and whether it helped or not.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

@helpingrachel, I can understand your feelings of isolation. Even when doing an internet search about detrusor overactivity, most of the information is geared towards the adult population. Information related to children focuses on overactive bladder, bedwetting and bladder training.

I'm bringing @astaingegerdm into the discussion to see if she has any experience to offer.

@helpingrachel, am I understanding that your daughter at first could not control her urinary urgency and not she has the opposite issue of total urinary retention and cannot void on her own? This must be distressing for both of you. Does she still have pain and spasms?

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@colleenyoung

@helpingrachel, I can understand your feelings of isolation. Even when doing an internet search about detrusor overactivity, most of the information is geared towards the adult population. Information related to children focuses on overactive bladder, bedwetting and bladder training.

I'm bringing @astaingegerdm into the discussion to see if she has any experience to offer.

@helpingrachel, am I understanding that your daughter at first could not control her urinary urgency and not she has the opposite issue of total urinary retention and cannot void on her own? This must be distressing for both of you. Does she still have pain and spasms?

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thank you very much for your comment! Yes, in July of last year Rachel began having severe pain spasms, aswell as leaking urine without knowing, bedwetting every night etc. Her paediactric urologist prescribed Solifenacin but it did not help her pain or leaking. Then in February she entered total urinary retention and has not been able to void since.
She underwent urodynamics last week which is when we found out the diagnosis of detrusor overactivity. It's not Fowler's or Hinmans or any specific syndrome. Which adds to the isolation!

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@helpingrachel – I can’t even try to imagine what your family is going through now, most of all Rachel -trying to understand and deal with this at her young age.
I’m a retired pediatrician and I have had many patients with bladder problems. I usually referred them to a pediatric nephrologist- kidney specialist. Rachel is not alone – you probably realized that not all patients have an identical course. It is different from adult overactive bladder disease in that it seems to go away.
There still is not much known about why it happens- it could be due to several reasons.
Has she gone through an evaluation of her spinal nerves that work on the bladder? No congenital abnormalities of the lumbosacral area?
Has she had Ultrasounds of bladder, ureter and kidneys? MRI of the spinal cord?
I assume no chronic UTIs.
Has she had any behavioral training, biofeedback?
Also, after prolonged spasms, the pelvic floor muscles may not work efficiently.
According to what I have learned of Botox for this condition is that it does work and may bring on recovery that’s permanent.
Have you had a chance yet to seek a second opinion?

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