Kidney Reflux
Tuesday, August 17th, 2010A couple weeks ago, Cullen had his first high fever and some vomiting. He also had a cough and a little congestion, so we were pretty sure that he had some sort of cold. I now think that the congestion was unrelated, and he had learned how to make a new noise with the coughing. The fever got worse over the next couple days. This time period coincided with his regular 6-month check up, so they decided to go ahead and test his blood and urine for signs of infection. The doctor wasn’t overly concerned, but we all figured that we could save another trip to the doctor since they would want to test everything by the next day anyway.
His white blood cells were elevated, so now the doctor was a little more concerned. Once we got the urine sample. it looked a little abnormal at first. They prescribed him with antibiotics and said they would contact us about the culture. She did not want to diagnose him with a bladder infection since that would mean we needed to get additional testing done at the hospital.
Meanwhile, Cullen improved greatly after just 12 hours of the antibiotic. I didn’t think that this was a coincidence! They wanted us to complete the course of antibiotics and then scheduled us for an ultrasound of the kidneys and a VCUG (Voiding Cystourethrogram) study. We had these done about a week ago.

Poor little Cullen has been subjected to at least 5 or 6 catheters now. He has had this done at least twice in the doctor’s office (testing for infection), twice in the ER (two separate trips), and now the VCUG study. The ultrasound of his kidneys was the easy part. The hardest part of that was keeping a wiggly baby from wiggling off the exam table. It didn’t hurt, and he didn’t seem to care about the slippery gel all over his belly.

The VCUG was NOT fun. He hates being catheterized (can you blame him?), and this particular test takes much longer than it does to get a urine sample. After they collected a urine sample, they injected a dye into Cullen’s bladder. For infants of his age, they like to do this twice. Once the dye fills the bladder, they wait for him to urinate and watch the x-rays to determine whether urine is refluxing into the kidneys. Unfortunately, we did not need to do it twice as the reflux was immediately obvious with the first void.

Cullen screamed through out the whole test. I am not sure how long it took, but it felt like FOREVER (not to mention the tube that I swear they were threading all the way up to his brain). It was so difficult as a parent to subject him to such torture. Poor little guy looked at me as I held his hands. His questioning eyes demanded to know why I was doing this to him and why wasn’t I picking him up?? I felt so bad for him.

I thought it was very interesting that the radiologist told us the results of the test and the severity right away. I thought that it was quite unusual that they did not send the results to the pediatrician first. She explained that he has Grade 2 reflux on one side and Grade 3 on the other.
From what I had been told (and the research that I have done online), it is common for many kids to outgrow the condition. The ureters are not properly attached to the bladder, allowing urine to back flow to the kidneys. This is a condition that was present at birth. For many kids, the problem corrects itself presumably as they grow and the “valve” gets bigger and stronger (the connection isn’t exactly a valve, but it acts like one, I think?). Many kids require surgery, especially those with more severe reflux. The severity is on a scale of Grade 1 through 5.
These are all the facts that we know. We now have an appointment with the specialist next week, and I hate to have to wait so long to get more answers. Based on the experiences of others and Dr. Google, I’m guessing that they are going to want Cullen to take a maintenance dose of antibiotics. He would have to take the antibiotics daily until he grows out of it or has surgery. From what I have gathered, it is very common for kids to out grow Grades 1 and 2. Grade 3 can be outgrown as well, but it sounded like it was maybe just as likely to have surgery? I’m not sure. I have also heard that it is very common in siblings, something like 30% of siblings also have it. Given Maddie’s history of unexplained fevers, I would be very surprised if they did not want to do the same VCUG test and ultrasound on her. If they do not feel that surgery is necessary at this time (seems unlikely), then I think that he needs to be retested every year or maybe twice a year. Again, everything in this paragraph is a guess.
It’s my understanding that undiagnosed kidney reflux can be very serious. The earlier the diagnosis, the better. Cullen is very young, so we are lucky that his doctors did not wait for infection after infection to find out about the reflux. It sounds like it is manageable upon diagnosis with careful monitoring (periodic VCUG tests/ultrasounds, diligent testing of urine with fevers, etc) and regular, low dose antibiotics. Repeated bladder/kidney infections can be bad, but we would hope to prevent them, if possible.
I am looking forward to getting our questions answered at next week’s appointment. Until then, I’m trying not to worry too much about my sweet little boy. He is getting extra hugs and kisses from me in the meanwhile.




