When we returned home from a cruise to the Virgin Islands, we noticed a difference in our little boy. He began waking up with swollen eyes and would become extremely thirsty and tired. I would take him to the on-call pediatrician, but we were never seeing the same doctor. They kept saying it was allergies. At one point, I thought he may have come in contact with something from one of the islands. We worked with my daycare provider to try to find the allergen, and we couldn’t come up with any food, elements, or patterns of why this was happening.
At one point, his abdomen became swollen and we knew something wasn’t right. A couple of his loving and caring teachers mentioned Nephrotic Syndrome to me, and I called his pediatrician right away. We made it a point to see our pediatrician. He then took some tests; trying to get a urine sample from a child in diapers is nearly impossible, but we did it. It turned out he had protein in his urine, and we had to get to Children’s Hospital immediately.
In March 2014, when our son Leo was almost 2 years old, he was diagnosed with Minimal Change Disease. The overwhelming feeling of finding out that your child has a rare disease that you cannot do anything about, or do not even know much about, is one of the scariest and most heartbreaking moments in a parent’s life. The fact that this disease is so unpredictable is what scares us the most. In the first year of his diagnosis, it was extremely difficult to watch a toddler being on this medication that would make him sad, angry, emotional, hungry and thirsty. We had no choice but to keep him on this medication since it was the only thing that triggered his kidneys to work again after relapsing.
Testing Leo’s urine was a struggle for us when he was 2 years old. He would scream “no bags”since the tape on the urine bags would hurt his legs. We figured out a great solution to this bump in the road. We would place cotton balls into his diaper at night and squeeze them out in the morning to test his urine. Since the age of 3, Leo’s routine is to wake up and urinate in a cup to see how his kidneys are “feeling,” and he never complains. Leo responds to prednisolone, which he has recently been off of for six months since his diagnosis. He is currently in remission. He is on a course of mycophenolate (CellCept), which seems to be working, but he has to have frequent blood tests.
When Leo relapses, he becomes very tired, moody and lethargic, but as he has stated, it will not stop him from playing flag football, soccer and baseball when he gets into kindergarten next year! As a family we always try to stay positive, even on the bad days. We are so proud of his positive attitude and strength. Watching your child struggle with this rare disease is a definitely hard, but with NephCure’s support we feel like we are doing something about it. Leo is a strong, smart and funny 5-year-old, whose smile brightens up the whole room. We couldn’t be more proud of the little boy who is growing up too fast!