The Boy With a Thorn in His Joints

When my son, Shepherd, was 3 years old, he and his twin brother, Beau, took soccer lessons for the first time. They were so excited that they slept in their uniforms — a purple T-shirt with a yellow star kicking the ball with one of its points — the night before their first practice. But when we got to the field the next day, Shepherd’s enthusiasm evaporated. While Beau and the other kids ran zigzags around the cones, Shepherd stood still and looked bewildered. When it was his turn to kick the ball, he seemed lost. After 15 minutes, he walked off the field and sat down in my lap, saying he was too tired to play. We watched the other kids, and I pointed out to him the drills I thought he might enjoy, the ones that Beau was charging through. But he refused to go back to the field. His passivity didn’t concern me much — he was 3, after all, and I already thought of him, in the way that parents tend to categorize their children even as we tell ourselves we shouldn’t, as a little clingy and not especially athletic. My husband, Darin, and I had recently noticed that Shepherd occasionally walked with a limp, but it was faint enough that sometimes when you looked for it, it was gone. Faint enough — though it seems incredible now — that we didn’t connect it to his reluctance on the field.

I assumed that Shepherd would warm to his soccer lessons the next time around. He and Beau still donned their jerseys at bedtime and talked each night about “soccer school” at the dinner table. But the following Saturday, Shepherd burst into tears the moment he started to run.

That week we saw our pediatrician, who referred us to an orthopedist. When no injury showed up on the X-ray, the doctor said that arthritis was most likely the issue. Arthritis in a 3-year-old? It sounded more odd than alarming at first, but over the next few weeks, we watched Shepherd spend more and more time on the couch. His stiff-legged walk became more pronounced, though he claimed that he was just walking like a penguin. Then he started having trouble getting out of bed.

A month after our first appointment, we went to see Philip Kahn, a pediatric rheumatologist at NYU Langone Medical Center, who gave Shepherd a diagnosis of juvenile idiopathic arthritis (J.I.A.), an autoimmune disease that causes painful swelling in the joints. J.I.A. can lead to stunted growth, disability and, rarely, blindness.

http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=1&nl=todaysheadlines&emc=edit_th_20130203&_r=0