Denise, of New York, first noticed her daughter’s symptoms one morning about two years ago. The 2 year old had been a bit slow moving for a few days, but one Friday morning Emma had a prominent limp. By Saturday morning at 8:30, Denise and her husband were at the pediatrician’s office with Emma. That visit led to a month of visits to pediatric orthopedists who initially diagnosed transient synovitis in Emma’s knee, something that would go away on its own. “But it didn’t, and I started to get a bit more concerned, and so we went to a top orthopedist in Manhattan,” she says.
One look at Emma prompted that orthopedist to refer Emma to a rheumatologist, who made the diagnosis of juvenile idiopathic arthritis. “It was a frustration for me that we might have gotten this diagnosis a couple of weeks earlier since we were on top of it from the first day. But some people say it can take even longer to get a diagnosis.”
Pediatric rheumatologist Dr. Beth Susan Gottlieb, at North Shore-LIJ Medical Center, N.Y., is now treating Emma with methotrexate. Emma is doing well at age 4 and has few side effects from the therapy.
Jessica Krauss’s 11-year-old son, Waylon, also began troubling symptoms at age 2, when he had swelling in his left knee and couldn’t put any weight on the leg. Waylon was admitted to the hospital for two weeks and underwent numerous tests while doctors tried to determine what his illness could be. He was sent home with intravenous antibiotics for three weeks, but eventually developed a high fever and a rash, which prompted treatment with two other antibiotics. “It was dreadful knowing that something is going on with your child and you don’t know what it is,” Ms. Krauss says.
After five weeks and a bone biopsy to rule out leukemia, the diagnosis of systemic juvenile idiopathic arthritis (SJIA) was made, and Waylon was sent home with a prescription for steroids and naproxen. By age 3, Waylon was much better and the family thought the disease was gone, but by the following year his disease had flared and he couldn’t move. “We thought the disease was gone, so I didn’t realize what was causing his pain.” When she had to start giving Waylon a daily injection, she thought, “How am I going to give my baby a shot every day when I have never given anybody a shot.”
