Urology Testing

It took us a little over a year to finally get in to have all of Annie's urology tests done again since moving to Nebraska.  (I still can't believe that there's only one pediatric urologist here!)  Annie had all these test done a couple years ago when her chronic UTIs started, but our new urologist wanted all of them repeated.  Starting about 2 years ago Annie started getting chronic UTIs--about one every month--that would cause her severe pain and inconsolable crying, retching, and vomiting.  We were told we would need to start catheterizing her several times a day to fully empty her bladder, but we resisted this and kept trying other options for a year.  So after having about 12 UTIs in a 14 month period, Annie was finally put on prophylactic antibiotics to help keep them from happening.  She's been on those for a year now while we've waited to get in to have all her tests repeated.

First she had a urodynamics test where they empty her bladder, then fill her bladder, and with probes and sensors, they measure the muscle contractions of her bladder, pelvic floor, and legs to see what's happening as she voids. When she previously had this test, she didn't quite fully empty her bladder on her own and she had some minor bladder muscle spasms that weren't normal.  This time, however, she fully voided and everything appeared normal.

Then she had a sonogram of her kidneys and bladder, which also came back completely normal.

Next was the VCUG where they empty her bladder, then refill it with a contrast dye, all while watching everything on video x-ray.  When they see her bladder is full, they wait for a few seconds, then roll her all the way to the right and hold her at various angles, and repeat for the left side.  This whole time they are watching the x-ray to see if she is refluxing urine up to her kidneys.  She fortunately never did.  They then again wait for Annie to void out the contrast dye and watch the x-ray screen to see if she fully voids.  It took her several minutes to get the urge to void, but when she did, it was complete.  So every part of the VCUG was normal as well.

It was a long, fully day of testing that put Annie in several awkward and uncomfortable positions.  She cried most of the day, even between tests.  It's so hard to put your child through so many tests, especially when she might not even fully understand why we're doing it.  It was particularly hard today to watch her cry so much because for the last year she hasn't had any UTIs because of the prophylactic antibiotics.  So it's hard to justify all these tests, and all her discomfort when she hasn't even been having symptoms.

We were excited to get normal results on all her test, but it's frustrating too since that means we haven't found what's causing her UTIs.  The urologist has simply diagnosed her as having a neurogenic  bladder which basically means that her bladder might not always behave normally because of her neurological impairment.  So Annie will continue to take prophylactic antibiotics.  She first started on Cipro last year when she was resistant to almost everything else, but since Cipro isn't as safe to take prophylactically, the urologist wants to try bactrim again which is safer.  So we'll start her on that soon and probably quickly find out if she's still resistant to it or not.