Then, his sixth-grade class took a fall field trip to an outdoor education center. “While hiking along the trail, I’d have to sit down,” Nick said. “Each morning for breakfast, we had to climb a hill and my ankles hurt. It was not a fun trip for me.”
Dawn Pecoraro, Nick’s mother and a Chicago police officer, took her son to the pediatrician. Lab tests failed to show abnormalities and doctors were unable to target the definitive cause of Nick’s stiffness and pain.
One Sunday at church, wishing to gauge her son’s pain, Dawn reached over and softly squeezed Nick’s hands. He yelled. Shortly thereafter, she brought him to see Karen Onel, MD, pediatric rheumatologist at the University of Chicago Medicine Comer Children’s Hospital.
“A minute into the interview, she told us what Nick had,” Dawn said. “We went home and researched everything on JIA. We had a million questions.”
For Onel, her suspicions were swiftly verified. “JIA is a clinical diagnosis. It’s based on a physical examination,” she said. “Sometimes the lab tests are entirely normal. Nick had a swollen joint count of over 20 and lots of limitations in motion.”
Onel started Nick on Humira, a biologic drug that targets a particular chemical in the body to reduce joint inflammation. “This class of drug has changed the management of arthritis in kids,” Onel said.
"It used to be that we hoped to get patients better. Now we want everyone perfect, like Nick."
When she started her practice, slow-acting chemotherapy was the strongest treatment available. Yet only about half of patients responded positively. A wide array of adaptive devices for everyday activities was the norm.
Nick’s response to Humira was dramatic. His pain disappeared. After six weeks of occupational therapy, Nick’s grip test increased from 7 pounds to 33 pounds of pressure. He stunned his teammates by boosting his swimming and running times.
“I also started playing the piano,” Nick said. “I didn’t know I was able to do that.”
Thanks to biweekly, at-home injections of Humira, Nick recovered his physical prowess. By the time he reached eighth grade, he was a match for his peer again.
Nick will soon be taken off Humira and monitored as part of a study led by Onel. Dawn Pecoraro didn’t hesitate. “When we first started researching JIA, there were many unanswered questions,” she said. “We volunteered for the study so other parents can get more answers.”
Nick is in remission now, meaning he is pain- and inflammation-free, and back on track for a normal life. “It used to be that we hoped to get patients better,” Onel said. “Now we want everyone perfect, like Nick.”