Sean L.'s Story: Parent's Letter ProjectNephrotic syndrome- Sean’s mom

Dear parent of a child with a rare and chronic medical condition,

Sean was a healthy, very active 2-year-old little boy with an older and younger brother at the time of diagnosis. He was always prone to colds and asthma, so we didn't race to the doctor when another cold came on. It was the eyelid swelling and the big belly that finally brought a more serious concern to our attention. 

First we all thought it was allergies/sinus infection. Rounds of antibiotics and allergy medicine, and visits to an allergist and an ENT doctor did nothing. Finally the eyelid puffiness was so bad our poor baby could barely see out of his eyes. We brought him the primary care doctor who sent us for a battery of tests. We determined from this he has nephrotic syndrome. Because he was still acting fine, we delayed our hospitalization to diurese him a few days. Finally when the swelling continued and his appetite waned we were admitted to the hospital. After five pounds of water came off of our 26-pound child, we saw our little man again. 

Sean was placed on high dose steroids and his urine finally converted to normal after day 11, yet to only turn 4+ with a cold and again with hand foot and mouth disease a few weeks later! We are hopeful and taking it day by day, which appears to be the best way. We have friends who have a child with a brain tumor and are thankful this is all poor Sean has to deal with. We may end up with immunosuppressive drugs or a kidney biopsy, but we are hopeful he will outgrow this rare and cumbersome disease. Our doctors have been wonderful and helpful.


Alyssa, Sean's mommy


Treatment Team