Thursday, June 19, 2008

Visit w/ Nephrologist.

Ada's visit went well. As long as she is responding to the prednisone without suffering from side effects they will continue with the current course of medication, even if she is dependent on it. If she stops tolerating the prednisone or quits growing then they will look at switching course of medicine, most likely to Cyclosporine (or Cytoxin?) for a short course to see if that will work. But at this point, so far so good.

They did ask if she was always so smiley and giggly and hyper, or if the prednisone was having a big impact on her personality. I had to confess that she has always been a whirlwind, but her moods are just a little more intense on the prednisone. Also her eating needs to be watched from time to time, but due to her energy level we don't need to restrict calorie intake much.


Included here is a picture of her just being a normal child on a family outing. Although we are dealing with protein tests, medications, and dietary precautions; there is still plenty of room to just be a normal child.

Sunday, June 8, 2008

Tapering Again

Ada's proteins held at trace to negative for a week, so we have begun the taper again. She is now taking 30 mg prednisone every other day. We identify days as "Prednisone days" and "Non-Prednisone days". I don't do this because they are "good days" and "bad days" but because I can check the log and tell Ada what kind of day it is, then she can remind me at lunch time if she has to take prednisone with her lunch. (I am such a space case these days that it is good she can be responsible too)

Sunday, June 1, 2008

Positive response to medication

Ada's proteins are holding at trace or negative. That is good. She is doing well and very happy, with plenty of energy to burn. She has been complaining of stomach aches in the evening and I have wondered if this could be a sensitivity to the prednisone. I will have to ask the Dr when we see him again. She did not swell at all that I noticed this time, thank goodness for our little protein test strips. I am glad that the relapse cannot sneak up on us over and over again. Always greatful for little miracles.