Contacted Pediatric Kidney Center

Well, after 2 weeks of leaking proteins we contacted our nurse at the Nephrotic Center. Gave her the run-down. Leaking kidneys at 1+ for at least 2 weeks, no illnesses, no swelling, otherwise healthy.

At this point there isn't really anything to worry about, just wait and watch. I can do that.

Heard another little friend had also relapsed recently after having the summer med free (who had also done the cytoxan treatment) fortunately she responded quickly to treatment and is doing well.

We keep all of our little NS friends in our hearts and prayers.

Make a guess

Still not sure if it is trace or 1+ (30); So that's good news because it is looking lighter than a couple days ago. Maybe she can beat this on her own this time. Hugs all around.

Dayna

Looking Hopeful

Reading those albustix (pee sticks) can be a little tricky. It's usually pretty clear if you are off either end (neg or 2000+), but in the middle it is open to interpretation.

When reading the sticks I will think, "Well, it looks darker than trace, but it definitely isn't 300, so even though it isn't a perfect match it must be 30" I find myself trying to decide between two levels and just make a best estimate.

So for the last week I have known that she isn't at 300, but it didn't quite match 30 either. The last two days it was more a matter of, "It doesn't quite match 30, and it isn't quite trace either, but it definitely isn't 300."

So we appear to be headed in the right direction, that the amount of protein spillage is going down. Fingers crossed and prayers being said. Thanks for everyone's support.

Forgot to Knock on Wood

Right after I posted the last update, celebrating a year without meds or protein, A random urine test indicated a slight rise in proteins.

Over the last year checks varied between neg and trace, normal for most people. So instead of daily checks we were able to just do occasional tests, usually every other week or so.

This last week the test came back slightly elevated. Not enough to push a panic button, but enough that we are watching daily for a spike, or hopefully, for a return to normal. (the scale is exponential, so even though we are elevated, we are a long way from where she has been)

We enjoyed our hiatus and hoped that there would not be a relapse. Perhaps it won't be anything to worry about. Ada has not been sick, or suffering from allergies, so this is a little perplexing that the proteins have returned.

Current plan of attack, continue to monitor daily for another week or so watching for elevation in proteins and/or swelling (currently there is no edema). If a spike occurs, or if the elevated levels do not return to normal we will contact the Nephrotic Center for further instructions.

Happy testing :-)

1 year anniversary

Ada has gone 1 year without any medication or protein spillage. This is great news for her and for us. The flu has hit our house, but so far she hasn't been affected by it. We'll keep checking proteins, but hopefully even if she gets sick it won't knock her kidneys off kilter and she can continue her progress.

Our best wishes to those who are still battling each day.