In 2003, our family moved from the state of Washington to California. We noticed some swelling around then five-year-old Brady’s eyes and thought it was due to allergies, since we moved to a farming area that did a lot of crop dusting.
After being examined by his pediatrician, we were told that it was not allergies and referred to a specialist. Brady was diagnosed with Nephrotic Syndrome. We made several attempts to get him to stay in remission with Prednisone. But once we would taper he would always relapse. He was finally admitted to the Children’s Hospital in Fresno where they did a kidney biopsy.
It came back showing Minimal Change Disease. From there we kept trying the Prednisone over and over and over again. Same results. He had one other hospital stay when his swelling became so severe that they had to put him on the IV Prednisone and Lasix. Over the next several years, he tried Cytoxan and Cyclosporine — neither helped.
We moved to Tennessee in 2005. The doctor at LeBonheur’s continued to try the Prednisone and taper, continually tweaking it to see if it would help. He finally added Prograf, which helped put him into remission. Brady was able to taper off all of his medicationss and stay in remission.
He was 10 years old (2008). Now came the time to repair the damage the medicationss had done to his body. By this time, he was severely overweight and didn’t have much self-esteem. But once some time had passed, he sprouted up and thinned down, and became a kid that nobody would ever know had any health issues.
We would see his nephrologist once a year, just for a check up. Then we hit the three-year mark we had all been holding our breath for, since, at the beginning of all of this, we were told three years of med-free remission meant he would be “cured.” Ahhh, sweet relief!
Then, at 14 (2012), a tall, thin, eighth grader, two weeks away from his four-year medication free remission, yep you guessed it — once again had puffy eyes, face, stomach, and legs. Our worst fear. The fear we knew and remembered all too well. One that we thought was in our past. And that horrible green shade of +4. This was a heartbreaking reality check for the whole family.
Back to the doctor he goes. Back on Prednisone he goes. He is now on his second relapse. Once he hits 20 mg, he relapses. So we are now trying a “longer” taper, hoping it will hold. However, the story does not end there. Being diagnosed at 5 and 14 are two completely different worlds!
Brady is now scared to death of putting all of the weight back on — terrified! So, his way of preventing that is to not eat! We have gone back to the low salt diet, bought all of the “special” foods, seasoning, etc. But his day consists of two bananas in the morning, nothing at school, two bananas after school and then a tiny portion of dinner.
From his first appointment at the end of March to his last appointment at the beginning of May, he has lost 33 pounds. He is so thin, too thin!
We requested for him to talk to a dietitian, but his doctor said that would be more for kids who were overweight. His doctor did tell him as long as he is in remission, even on the Prednisone, he can eat whatever he wants (within reason, of course). So, I am hoping that he will get it in his head now that it is okay to eat!
We are hopeful that he will reach a medication-free remission again soon. He is not letting this stand in his way of being on the high school soccer team, and his spirits have been lifted since his most recent relapse. We would love to meet with any families struggling with this that are located in Tennessee (Memphis area).