Child, Nephrotic Syndrome

Our son Andrew was first diagnosed with Nephrotic Syndrome at the age of 22 months. He woke up one morning and his eyes were very swollen. I really didn’t think much of it. I simply thought it may be an infection, so I waited for the next day. The next morning came, and when Andrew woke up his eyes were worse. All you could see were two little slits. Obviously we were very concerned, so we immediately took him to see his pediatrician. When his doctor saw him, he diagnosed the problem almost instantly and told us to immediately go the hospital. My husband and I were extremely confused. We didn’t know what was going on.

We met with a nephrologist when we arrived at the hospital, and she explained to us what exactly was going on with Andrew. She told us that this was a disease which was affecting his kidneys — instead of the protein being filtered through his bloodstream, it was spilling through his urine, which was causing the swelling. Even with the doctor’s explanation, we could not believe this was happening.

The first year was extremely difficult. The doctors at the Montreal Children’s Hospital attempted to put him on Prednisone, but we soon found out that steroids did not work for him. He would continuously relapse and would swell up all over again. The doctors then decided that a kidney biopsy would be necessary to determine which other medication would be appropriate for him. That is when the doctors decided to put him on Tacrolimus (a medication used to treat transplant patients). He was doing well with the Tacrolimus until they performed the second biopsy. They discovered that his kidneys had been permanently scarred due to the Tacrolimus, so we had to once again change the medication. He is now on Cellcept twice a day.

As parents, there is nothing worse than seeing your child suffer. He would swell up so much at first that you couldn’t recognize him anymore. Looking at him in his hospital bed, being poked and prodded by nurses and doctors, and knowing there is nothing we can do — those were the hardest times, especially when your child is looking back at you and probably wondering how we could let them do this to him.

Since then, Andrew is doing very well with the Cellcept. He had a few relapses at first, but has managed to bounce back on his own! Andrew has been, and still is, a very brave boy. He is a true inspiration — our inspiration!

As a family, we have dedicated ourselves to raise awareness and raise funds for research into one day finding a cure!