I know it's been a long time. Everyone out there working full time with 3 boys who all do sports understand how time gets away :) I know getting the diagnosis is scary and since everyone progresses differently you hope for the best but feel uncertain of what the future brings. Cody is doing VERY well. With IgA Nephropathy you have to monitor the protein in your child's urine closely when they get sick, especially upper respiratory illnesses. Cody has gone through strep (which is how we found this disease to begin with, a lot of people find it after getting strep throat), flu, head cold, etc and his protein did go up during strep so I called his nurse who said we just have to wait til strep is gone and if his protein is still up more than 3 days after, we would need to start the prednisone/low sodium/cholesterol medicine again. However, Cody's went down after only 2 days back to normal and through all the other illnesses, he was fine. Now we check his urine once a week and he's only taking fish oil and lisinopril. October he goes back for his first 1 year check up and they'll run all the test again to check kidney function, etc. We feel hopeful since after the biopsy we found no damage or scar tissue were on his kidneys and since his protein has stayed down, we feel hopeful that his function will be 100%. I know many other stories where the kids are on a roller coaster with this disease but I wanted to put this out there to give other parents and kids hope that it doesn' t always turn out that way. Last October because he recovered from Nephrotic Syndrome successfully with no damage to kidneys, we were told by his nephrologist that there is a huge chance he won't ever need a transplant or even dialysis if he continues to do well and responds to the prednisone. We feel very blessed and just wanted to share a good result for others to hang on to .
