I can remember almost every detail of that January day, which is somewhat unusual for me. It was the same room on the fourth floor at Children’s Hospitals and Clinics in Minneapolis that we had been in multiple times before for Michael’s nephrology (kidney) follow-up examinations. We had been seeing a nephrology team from the University of Minnesota at Children’s for almost six months following a kidney biopsy that diagnosed Michael with a kidney disease called Focal Segmental Glomerulosclerosis- FSG. Although this diagnosis didn’t completely explain all of the symptoms Michael had been experiencing, it was another step closer to understanding the complicated medical puzzle. Unfortunately, this particular type of kidney disease was progressive, which meant Michael’s kidney function would decrease over time, eventually requiring a kidney transplant at the University of Minnesota.
Relatively new to the nephrology team was a young and ambitious female doctor who became the main contact for Michael’s case. I could tell as she entered the room that day and began talking with us that she appeared somewhat nervous. Being with so many doctors the last few months I learned to not only listen to the words they spoke, but to also read their body language, which often spoke words they weren’t able or willing to say. Her body language told me that something was different today, that this was probably not going to be a normal nephrology appointment. She finished Michael’s exam in typical fashion by explaining all the lab results to us but then she asked if Michael could go and play with a nurse in the activity room because she wanted to speak to me and my husband alone. He was more than willing to end his time with the doctors and go play, so Michael gladly left the room. As the young nephrology doctor began to speak, I was distracted by the sound of the other nephrology doctor sitting in the room flicking his watch back and forth. I could also hear Michael’s infectious laugh as he played in the activity room located across the large waiting room that was empty now because it was well past 5:00pm. The doctors told us that the University of Minnesota team was finally successful in making a complete diagnosis of Michael’s multiple symptoms. His primary diagnosis was Schimke Immuno-Osseous Dysplasia (SIOD), and the kidney disease (FSG) was only one component of the primary diagnosis. What that meant was about to be abruptly explained.