Renal Reflux

I'm pretty sure that everyone reading this blog is well aware of Sylvie's health scare in March of last year, which thankfully proved to be a very treatable situation. Although at the time Sylvie was very very sick, with a 105 fever for days, resulting in our pediatrician sending us to the emergency room for a night of tests and IVs and catheters. It was a pretty scary and traumatic event for all 3 of us, but the end result was that Sylvie had a severe urinary tract infection that had gone into a full blown kidney infection. Her infection was pretty persistent and it took several days of intravenous antibiotics (administered by our pediatrician on a daily basis) followed by weeks of oral antibiotics. Once she had fully recovered we were sent to a pediatric urologist for some tests, to determine if Sylvie's original UTI had been brought on by renal reflux, which is when the bladder sucks urine back up into the kidneys. Sylvie had 2 diagnostic tests: a renal ultrasound, to determine the physical state of her kidneys, bladders and ureters; and a VCUG, a more invasive test involving catheterizing the bladder and filling it with dye, to watch on an x-ray/ultrasound machine to see the reflux (or lack there-of) in action.

To make a long story short, the ultrasound was pretty easy (though Sylvie still hated every second of it), but the VCUG was very difficult and pretty traumatic, and ended up being a bust. They couldn't get accurate results and determined that while Sylvie definitely had renal reflux, the full nature could not be determined. So we were put on a yearly regimen of daily antibiotics, a very low dose to keep her urine sterile and prevent future UTIs. The hope being that Sylvie, like the majority of children with renal reflux, would outgrow the condition. We were told to come back in a year, at which point we'd discuss our options.

Fast forward to today, our follow-up visit. The urologist had me take Sylvie in for another renal ultrasound this morning, followed by a visit with him to discuss the results. The ultrasound was easy-peasy as I expected, but again Sylvie hated every minute of it. I have to remind myself though that this is a kid that cries when doctors check her ears or something equally benign! So although many tears erupted, she was just fine! After our visit with the radiologist we went to the urologist, where we proceeded to wait for over 2 hours in his waiting room!!! It was pretty awful, and I thought at one point that the parents were going to unite in an uproarious and hostile take-over of the place. The waiting room was tiny, there were at least a dozen of us, plus kids. It was hectic, but Sylvie was a champ and happily played the entire time. Me, not so much.

Though I forgot my anger over the long wait as soon as the doctor saw us, he's just got a very nice manner about him. He had all of Sylvie's films spread out on light boards around the room, and proceeded to tell me that Sylvie's bladder and both kidneys looked absolutely perfect. Healthy, growing on target, just perfect. At our appointment last year she had a slight issue with her right kidney, but that was gone this time around. Everything looked great, and as far as he's concerned, he thinks she has outgrown the reflux. Hooray! But, and of course there has to be a but, we can't actually prove that she has outgrown the reflux without a repeat VCUG.

What I like about this doctor is how upfront he is, but how much he trusts the parents to make decisions for their own children, while he guides us through the process. At one point I had to say to him "please, if this was YOUR daughter, what would you do?" because I felt like he was trusting me too much to make a decision! The bottom line is that he really does want to do another VCUG, but he wants to wait as long as possible, simply for Sylvie's emotional well-being. He wants to wait until Sylvie is potty trained, so that she can #1. hold her urine in and have an accurate test and #2. so that the process and trauma of the test doesn't negatively impact her readiness for potty training. He explained that she might get so freaked out and upset by the experience that it could cause major regression with potty training.

And of course, there is a but on top of the initial but. While he does want to wait on the VCUG, he also doesn't want to keep Sylvie on the antibiotics for too long. He said another year or so is fine, but that we don't want to keep her unnecessarily on them any longer than she needs to be.

And one other thing to consider! I can have Sylvie sedated for the next VCUG. I was under the impression that we could do a mild sedation, to just keep her somewhat calm during the test, but the doctor explained today that this is no longer an option. Apparently the anesthesiologists at our local hospital don't approve of this anymore, since nearly every experience they have had with children under partial sedation was that the child would fall asleep or be totally calm, until the moment of insertion of the catheter. At which point most children get so upset and worked up that it counters the whole point of sedation. So, if we were to go the sedation route, it would be general anesthesia. I brought up the point that if we plan on sedating her regardless of when we do it, it might be better to do the test early than later, assuming that she's healthy and can then be taken off the antibiotics as soon as possible. He agreed that if sedation is our definite choice, there is no need to wait for her "readiness" for the test.

Phew!! Is everyone still following me?

Okay, so my options are as follows:
1. schedule the VCUG for this summer, with sedation. Hope hope hope that Sylvie is totally free of the reflux, and be done with the antibiotics and Dr. Fleischer completely! The drawbacks to this option are the whole general sedation thing, along with the possibility that she may still have reflux, and will just need another VCUG a year from now anyway. The plus of this option is potentially having this all behind us, if the test shows she's outgrown the reflux.

2. schedule the VCUG for next summer, keeping Sylvie on antibiotics for the next year. With or without sedation. Drawback to this option is that we'd need to keep her on the antibiotics for another year, which may possibly be totally unnecessary.

So dear readers, what would you do? As far as John and I are concerned, not doing the VCUG is NOT AN OPTION. As the doctor said today, sure, I could go that route, some parents do, and he can't force me to do any test. But he felt that it would be "entirely negligent" and not something he advises. And the way I feel about is that I would literally worry every single time Sylvie ran a fever. Is this another UTI? Should I take her in for blood work? And if god forbid she does still have the reflux and did get another UTI, how bad would I feel?!? And how much damage would that do to her bladder and kidneys? It's just not something I'm even considering, so that option is off the table and any comments about it are really not welcome. This is a heart wrenching decision for us so I really don't want to be second guessed on it. Thank you for understanding.

To end on a positive note, here is a picture I took of Sylvie today right before we went in for our marathon waiting room session. (please note the Obama t-shirt - gooooooo Obama!!!)

And here are those beautiful, wonderful, healthy, PERFECT kidneys!

I have to admit that what I really really want to do is just bury my head in the sand and do a lot of LaLaLaLa my kid is healthy everything is fine I'm going to pretend none of this ever happened. Reality can bite me!