The Boy With a Thorn in His Joints

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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.

When Dr. Kahn tested his joints, Shepherd denied that it hurt even as he teared up in pain. Our son was stoic, Dr. Kahn said, as the kids he treated often were. Shepherd turned out to have arthritis in both knees and both wrists, as well as in his left shoulder and elbow. It was only when I started working on this article that a particular memory came back to me, its attendant guilt still intact: we’d bribed him to go to that last practice with the promise of ice cream.

Before driving home, all four of us stopped for lunch at a hummus place that Dr. Kahn recommended. We sat outside on the sidewalk, and Darin and I pretended that we were celebrating. This is great news, we told Shepherd. Now that we know what’s wrong, you can take medicine that will make you feel better. Darin remembers thinking that we were lying to him, but he was trying to be more optimistic than he felt, for Shepherd’s sake and for mine. Shepherd barely ate his lunch.

When we got home, I called my sister, Rae. She knew that overwhelmed feeling of getting a child’s diagnosis all too well; she’d been through it with her daughter, also 3, who had severe asthma and 14 food allergies. Rae talked about how that moment when you receive the diagnosis eclipses everything, but she tried to reassure me that if an illness isn’t life-threatening, the fear eventually dies down, and coping with it becomes routine.

Before we hung up, she mentioned that her sister-in-law had a friend who sent her own son’s arthritis into remission with alternative medicine. Her name was Char Walker, short for Charlotte. Did I want to talk to her? I told her that I didn’t, that we liked Dr. Kahn and wanted to follow his advice for now. We were starting Shepherd on a course of naproxen, a relative of the nonsteroidal anti-inflammatory ibuprofen. We didn’t want to mess around with something that might not work, when conventional treatments were known to be effective. What I thought that day but didn’t say to Rae was, We don’t want to waste time talking to a kook.


Click for rest of article The Boy With a Thorn in His Joints


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