Aaron woke up with slightly puffy eyes when he was about two and a half years old. At the time, I had thought it was just a product of being sleepy. I called my husband, who was out of state on vacation, and told him. By the time my husband returned two days later, Aaron’s legs, groin, and eyes were very puffy. He was in pain. We were scared and had no idea what was going on.
We called his pediatrician that day and she saw us immediately. She confirmed that there was a problem with Aaron’s kidneys. We were referred to a pediatric nephrologist who told us about Nephrotic Syndrome.
After Aaron’s diagnosis, he had several relapses and a couple of biopsies. We had a scare when he was about nine years old. During that relapse, Aaron’s medication stopped draining the excess fluid from his body and his blood pressure was not normal. His nephrologist changed his prescription dosage a couple of times, but the fluid still would not drain. Thankfully, the nephrologist on staff at the emergency room fixed the dosage and Aaron was home with us five days later.
In the past, Aaron asked a lot of questions about why he had the disease and why he couldn’t eat the same food as his friends. I would tell him that he was just like the other kids and that he could do all the things his peers did. He was only different because he had to take medications and he had to be on a slightly different diet.
Now that he’s older, he seems to accept his diagnosis. He’s shy and he does well in school. He plays sports and video games like other teenagers his age. More importantly, Aaron has not had a relapse in more than four years with the help of his new nephrologist, Dr. Alex.