Want a bad kidney?

Category: Little Chili, kidneys

My son, whom I will affectionately refer to as Little Chili (or LC) has VUR. (Good article here.) It's not too big a deal, at least from the "it's not a fatal disease" perspective. But it is still stressful and worrisome. What it means is that the valves between his bladder and kidney don't work very well, particularly the one on the left, so he is prone to bladder infections. And in children under 6, bladder infections can lead to kidney infections and that leads to kidney damage (scarring).

How was this condition found? Good question. Not by the doctors. My son was a colicky, screaming baby almost from birth. He had a series of unexplained fevers, the worst one on New Year's Day, 2003, when he was just 3 months old. We knew he was sick because he was so listless. We felt like dumb new parents and went to the emergency department of a SupposedToBeGood local hospital. His fever came down with Tylenol, and by the time we were seen (3 hours later), the fever had abated. He had no other symptoms of a virus/cold - no congestion, no rash - just the fever. So they sent us home.

Long after the diagnosis, I talked to a friend, who is an urgent care paediatrician, who was baffled that they didn't check for a UTI by default. That's supposed to be the protocol - unexplained fever in a newborn (3 month old or less) = urine test.

LC continued to have a fever off & on, continued to be 'colicky', continued to be very small and we got a lot of grief about FTT (failure to thrive). It wasn't until months later, maybe Apr-04, that I asked the doctor about the discharge in his diaper. There was frequently a goopy discharge on the diaper. She immediately took a urine sample [Side note - urine samples on babies are not fun. It involves taping a plastic bag to the genital area and hoping that the kid pees while the bag is still reasonable sterile.]

The sample came back as a screaming infection. We had to immediately go to the hospital for a sterile sample to confirm the result. You know how they do that? They put a catheter right to the bladder. He was so small and he screamed so much. Then there was blood work. Then there was a referral to Sick Children's hospital.

In Jun-04, an ultrasound and VCUG revealed that he had reflux on both sides. Left side = Grade 3/4, Right side = 2 [5 = worst, 0 = no reflux]. Not to worry, they said, let's put him on a prophylactic dose of antibiotics. A small dose daily, to keep the urine sterile. Let's wait and see if he grows out of it. Oh - and let's do a DMSA scan, to check the kidneys. This is just routine, he wasn't that sick, so his kidneys should be fine.

Much reading and researching ensued between Jun and Dec. Then in Dec-04, we found out after a follow up u/s and DMSA scan that LC's left kidney is badly scarred and damaged. The left kidney doesn't appear to be growing at all. So he basically only has one working kidney. Now this is okay because you can live with one kidney (thank goodness). It means we have to watch his blood pressure (kidney scarring = prone to high blood pressure). It also means we have to continue to give LC a low dose of antibiotics every day to prevent more infections. We also have to be super-vigilant about any fever, for fear that it could be a bladder infection. So every fever means a urine sample and worrying.

At our last appt in Jun-05, we had another ultrasound and VCUG. The reflux appeared to be gone on the right side - yeah. But was still bad on the right side. In hindsight, I knew it was serious because the head of the urology department came in to see us, not the usual resident. He told us that it was unlikely the reflux was going to heal on the right side. It is also unlikely they can repair the reflux surgically. The best option is to remove the kidney. (Voice in my head saying "Holy shit - remove his kidney??!!!") He told us to continue on the antibiotics, since he was stable, to be vigilant about fevers and to come back in a year.

So we wait. Every doctor we've seen has been so surprised that he wasn't sicker with the amount of kidney damage. As in, he should have been septic and required hospitalization.

I've done a lot of googling to find out more. I can't find much about wonky kidneys like LCs. Lots about PKD, a terrible disease, but not one that my son has, if the doctors are correct. I want to find out more, make sure this is the right decision before I agree to remove an organ from my son.

Now I'm an analytical person (I'm an engineer, duh!). I want to understand the root cause of this. Was it the one infection that caused all the damage? Or is there another, more worrisome cause? If anyone has anything to share, I'd be grateful.

Thanks.