Our Story

Christian's story:
On July 23, 2002 our youngest son, Christian, was diagnosed with Nephrotic Syndrome, and since that time, we have been riding an emotional roller coaster. Christian started waking up with puffy eyes, and we noticed that his belly was getting bigger. We just thought it was allergies or that he was growing, but one night his belly was so swollen, he no longer had a belly button. We immediately knew something was very wrong. We were lucky, because the next day, Christian's pediatrician was able to diagnose him with Nephrotic Syndrome.

At first Christian responded to Prednisone. He began to pee and slowly lost all of the water weight, but we quickly noticed the ugly side effects of the Prednisone; irritability, insomnia, hunger, and a round moon face. After one month of being on Prednisone, Christian began to relapse again. He was then put on Prograf in conjunction with the Prednisone. That worked for a while, so the doctors decided to wean him off of the steroids, and soon, he began to relapse again. It was confirmed that Christian had Steroid Dependent Nephrotic Syndrome. After being on Prograf for one year, Christian had six relapses, so we decided to try Cytoxin. Christian was able to bear with the Cytoxin for a year and only had three relapses.

Cytoxin is such a strong drug with serious side effects that Christian could only be on it for one year. So, in 2004, Christian began to take Cyclosporine in addition to the Prednisone. Cyclosporine was easy for Christian to tolerate but hard for us to keep his levels in the right range. He had to have his blood drawn monthly, sometimes 2-3 times a month, to make sure his levels were in the right range. Christian was able to take Cyclosporine for five years, but during that time, he had to be hospitalized three times. One time, he was so sick, he was in the hospital for two weeks and missed a whole month of school.

Currently, Christian is taking relatively low doses of steroids and has just started taking Cellcept. He is doing well, enjoys going to school and loves to play sports and his guitar. We feel blessed to have the care and support of wonderful doctors, family and friends. We hope that someday, the reasons and cures for NS and FSGS will be found so other children and parents will not have to ride the emotional roller coaster that comes along with having a loved one with chronic kidney diseases.

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