Rocko C.

Child, Nephrotic Syndrome

My son jammed his thumb in May of 2014. The hospital commented on his elevated protein levels in his urine and sent him home. In August of 2014, he needed a physical to begin kindergarten, and his pediatrician mentioned his elevated protein levels and scheduled us for more labs before referring us to a nephrologist at Children Health Care of Atlanta. I was told that my son was not like any of the children she’s seen, and showed no signs of Nephrotic Syndrome other than the elevated protein levels. She then began him on Prednisone, 8 ml once a day for the next eight weeks.

In April 2015, his protein levels decreased only slightly, so he was scheduled for a biopsy, which showed MCD. At that time, we started him on Cellcept and lowered his Prednisone. Though his numbers improved, he never went into remission. In September 2015, we switched him to Prograf, 1.5ml twice a day, and 6 ml of Prednisone every other day. We began seeing great improvement and we thought he was close to being in remission. But in April 2016 he got very sick, and his numbers got worse. He is now on Lisinopril, Prograf, and Prednisone.

This entire experience has been a little frightening for me. His nephrologist says it is a guessing game as to next steps, and is now saying he may never go into remission. We hope he grows out of this! My son was a happy, athletic, healthy, and strong little boy. Since being diagnosed, he has gained a lot of weight, has  stopped growing, and is tired and moody all the time. As a parent, I feel helpless! I’ve had to put my trust in doctors who are unsure of what course of action to take. I want more than hope. I want answers…