[Eye on the Baby (and Toddler and Preschooler)] Cystantin C Dees ...
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becca
Jun 3, 2011, 4:39:30 PM6/3/11
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All in all Ben's appointments went well last week. With one exception (Dum-dum-DUMMMMMMM.)
His kidneys "looked perfect" on ultrasound. His spine looks nice and stable on x-ray. And that left us with the blood work lab results...
Phooey. Well, you know it's not good when the nurses won't tell you the results and just keep repeating the mantra "your attending will review them and let us know the plan." I kept calling and they kept taking messages and it got pretty frustrating. Finally heard back from the doctor today...over a week later.
He said the level that best indicates kidney function, Cystantin C, was higher this time than at his test last year. Not good, definitely abnormal, but "not interpretable" or as he said, "Let me put it this way - I'm not thrilled."
He was nice to point out several times that the ultrasound was perfect. That's good! He also said he doesn't believe it is his GI anomalies at play here, but rather nerve damage from his tethered cord which he described as "tricky." He said he doesn't often see the high/bad Cystantin C results with such perfect-looking kidneys, but he has seen this a few times and wants to be careful.
So, back to Cincinnati Children's we go. This time for a urinalysis to check for proteins being spilled, Nuclear GFR and "absolute function" tests which will more accurately show the kidney function. The tests basically work like this:
- No restrictions before the test (yay!)
- Get an IV placed and get injected with radioactive technetium 99m
- Don a cape and tights and go flying about the city fighting crime (just kidding)
- Come back in a couple of hours for a blood draw
- Go pee in a cup for the urinalysis/protein test
- Come back a few more times for more timed blood draws
- Go get a scan to see how the kidneys are processing the radioactive material ("absolute function")...both kidneys should be working about the same; so if one is glowing more than the other this can show one of the kidneys is damaged
- The lab measures the amount of radioactivity in each sample and calculates the kidney function
Here is a short overview about why these tests are important and what they can tell us.
Ben had a similar kidney scan, DMSA renal scan, way back in his baby years. That was...interesting. It came back just fine.
It would be nice if they can use the IV site to do the blood draws instead of sticking him each time, so fingers crossed for that.
On the plus side, it seems the whole urology department is horrified about how long it took us to hear back from them about those labs. I got a call back from the nurse admin, Dr. Alam himself...twice, his nurse practitioner, Debbie...twice, and nuclear medicine called ME to schedule. All within about an hour. Dr. Alam said to just email him next time. Nurse Debbie said to call her the day after the tests for the results and not to call the main number...ever again. There I was just trying to "follow the rules" (i.e. what was written down in our clinic papers) and not behave like a lunatic. Just goes to show you when in doubt, be a lunatic.
We will head back to Cincinnati Children's this Tuesday for all this junk. I hope the little old ladies running the gift shop are ready for us because I have a feeling we will be in there a LOT.
And I'll say it again - phooey!
--
Posted By becca to Eye on the Baby (and Toddler and Preschooler) at 6/03/2011 03:39:00 PM
His kidneys "looked perfect" on ultrasound. His spine looks nice and stable on x-ray. And that left us with the blood work lab results...
Phooey. Well, you know it's not good when the nurses won't tell you the results and just keep repeating the mantra "your attending will review them and let us know the plan." I kept calling and they kept taking messages and it got pretty frustrating. Finally heard back from the doctor today...over a week later.
He said the level that best indicates kidney function, Cystantin C, was higher this time than at his test last year. Not good, definitely abnormal, but "not interpretable" or as he said, "Let me put it this way - I'm not thrilled."
He was nice to point out several times that the ultrasound was perfect. That's good! He also said he doesn't believe it is his GI anomalies at play here, but rather nerve damage from his tethered cord which he described as "tricky." He said he doesn't often see the high/bad Cystantin C results with such perfect-looking kidneys, but he has seen this a few times and wants to be careful.
So, back to Cincinnati Children's we go. This time for a urinalysis to check for proteins being spilled, Nuclear GFR and "absolute function" tests which will more accurately show the kidney function. The tests basically work like this:
- No restrictions before the test (yay!)
- Get an IV placed and get injected with radioactive technetium 99m
- Don a cape and tights and go flying about the city fighting crime (just kidding)
- Come back in a couple of hours for a blood draw
- Go pee in a cup for the urinalysis/protein test
- Come back a few more times for more timed blood draws
- Go get a scan to see how the kidneys are processing the radioactive material ("absolute function")...both kidneys should be working about the same; so if one is glowing more than the other this can show one of the kidneys is damaged
- The lab measures the amount of radioactivity in each sample and calculates the kidney function
Here is a short overview about why these tests are important and what they can tell us.
Ben had a similar kidney scan, DMSA renal scan, way back in his baby years. That was...interesting. It came back just fine.
It would be nice if they can use the IV site to do the blood draws instead of sticking him each time, so fingers crossed for that.
On the plus side, it seems the whole urology department is horrified about how long it took us to hear back from them about those labs. I got a call back from the nurse admin, Dr. Alam himself...twice, his nurse practitioner, Debbie...twice, and nuclear medicine called ME to schedule. All within about an hour. Dr. Alam said to just email him next time. Nurse Debbie said to call her the day after the tests for the results and not to call the main number...ever again. There I was just trying to "follow the rules" (i.e. what was written down in our clinic papers) and not behave like a lunatic. Just goes to show you when in doubt, be a lunatic.
We will head back to Cincinnati Children's this Tuesday for all this junk. I hope the little old ladies running the gift shop are ready for us because I have a feeling we will be in there a LOT.
And I'll say it again - phooey!
--
Posted By becca to Eye on the Baby (and Toddler and Preschooler) at 6/03/2011 03:39:00 PM
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