My son’s legs were aching — but instinct told me something else was the culprit

As told to Rachael Lavon

My son Eli has always been an easygoing kid. He’s never been one to kvetch or sweat the small stuff, so when he woke up complaining of pain in his legs on the first day of summer vacation, I was a little surprised. At first I tried to calm him down, thinking maybe he’d ran around too much the day before and his legs were just sore — 12-year-olds can be very active. I gave him Motrin and told him that as soon as the medicine kicked in, he’d feel much better.

I had a huge day planned for the kids, and I figured he’d be feeling up to joining the fun within the hour. But as the morning progressed, the pain only got worse. He was miserable, and was making everyone else miserable too. I still wasn’t overly concerned, but to err on the safe side I called the pediatrician, hoping a checkup and reassurance would help Eli feel better.

The doctor found some swelling in the legs and started asking us questions. For 45 minutes he went through a long list of questions. Eli had been diagnosed with High Functioning Autism years earlier, but he’s so high functioning we often forget. He does have some mild communication issues though, and he won’t necessarily vocalize when something’s bothering him. This suddenly became relevant as I looked over at Eli sitting in the doctor’s office. This was not a kid who complained for no reason; clearly he was in excruciating pain.

The doctor continued asking us questions. He checked his chart and saw Eli had lost 5 kilo (11 pounds) and hadn’t grown at all in the last year. The doctor kept feeling his legs, comparing the two. Then he looked up at me and asked, “Is there any history of Juvenile Arthritis in the family?” The question sent a shiver up my spine.

Twenty years ago, when my younger sister was a teen, she suffered for three years with symptoms of what we’d thought was Juvenile Arthritis. She’d always been a super energetic girl; she played sports, had tons of friends, and was always on the go, when suddenly, she withered down to skin and bones.

Eli had always been extremely thin, but we’d never thought much of it. As soon as the pediatrician asked about a family history of Juvenile Arthritis I startled, because my sister had been misdiagnosed. She suffered for three long, painful years as they treated her for Juvenile Arthritis when, in fact, she was suffering from a severe case of Crohn’s disease.