March 12, 2012 - By Erin Digitale
Erica Medina (right), with her mother Stephanie, received repeated injections of steroids to relieve her back pain.
Erica Medina will never forget the feeling of waking up pain-free for the first time in six years. “It was heaven,” she said. “The clouds opened up. I thought, ‘There really is something out there that can help me.’”
The 17-year-old high school senior was awakening from a procedure at Lucile Packard Children’s Hospital to inject anesthetic and steroid medications into joints in her back that were affected by juvenile idiopathic arthritis. But before the injections, life had taken a turn for the worse.
“Erica was in a really bad place,” said her mother, Stephanie. Erica’s arthritis, which goes through periods of remission and active disease, had flared in the months before her injections, causing severe pain. “Her rheumatologists at Packard Children’s were really concerned because her demeanor changed,” Stephanie said. “They told her, ‘You’re getting used to the level of pain you’re in, and that’s not OK.’” So they referred Erica to the hospital’s pain management program.
Erica’s problems can be traced to one morning when she was 11 and woke with her hands excruciatingly swollen. Physicians in her hometown of Reno, Nev., soon diagnosed juvenile idiopathic arthritis, one of the many forms of childhood arthritis that, in total, affect 300,000 U.S. children. Over the next few months, arthritis spread to her wrists, arms and back. “It was definitely scary,” Stephanie said. Suddenly, her sixth-grader couldn’t perform basic tasks. “I had to tie her shoes for her. That was really hard.”
Juvenile idiopathic arthritis, which results from an immune system attack on the body’s own tissues, causes joint pain and swelling. When arthritis began to affect her back, Erica was also diagnosed with ankylosing spondylitis, a form of inflammatory arthritis of the spine. Because the state of Nevada has no pediatric rheumatologists, she was referred to Packard Children’s, where pediatric specialists manage her care with an adult rheumatologist in Nevada.
“Erica’s arthritis has no cure,” said Joyce Hsu, MD, Erica’s rheumatologist at Packard Children’s. “We give medications to put the disease into remission and to try to keep it there.”
Medications quieted the arthritis in Erica’s hands, wrists and arms, but her back was a different story. Back pain made it taxing to sit through school lectures, go on field trips or walk through the mall with friends. It wasn’t just the pain that bothered her: “When I was younger I hated taking my meds,” Erica said, adding that it felt like “giving up” to take pain medicine.
Stephanie was glad Erica’s doctors tackled this issue head-on. “They convinced her that treating pain has nothing to do with weakness,” she said.
Such patient-care challenges are one reason children with arthritis should see a pediatric rheumatologist. “I’m a pediatrician first,” said Hsu. “We really keep track of school and physical and emotional development, and understand the issues that come with that.”
With her doctors’ support, Erica did as many ordinary activities as possible. She loved playing volleyball and basketball. But it could still be hard to acknowledge her limits, as she realized when she earned a spot on her school’s championship basketball team. The workouts were too hard, and she made the difficult choice not to play.
“The pain was the first obstacle that stopped me from doing what I really loved,” she said.
In the summer of 2010, Erica’s back pain worsened. Her rheumatologists referred her to the Packard Children’s pain management team. In cooperation with her rheumatologists, they prescribed physical therapy, acupuncture, melatonin supplements for sleep, orthotic shoe inserts and other treatments.
“We’re a multidisciplinary pediatric pain management team,” said Meredith Brooks, MD, who now oversees Erica’s pain management care. “We really stress non-pharmacologic pain management and pain psychology.”
However, when other approaches didn’t give Erica enough relief, Brooks suggested a therapy she reserves for particularly intractable arthritis pain — the joint injections that gave Erica her first complete pain relief since her diagnosis six years earlier. The injected mixture of anesthetic and steroids numbs the nerves and reduces joint inflammation for three to four months. Erica now receives injections a few times per year. After she turns 18 and transitions to adult care, she may switch to an alternate therapy with similar effects, called radiofrequency ablation of the nerves, to avoid undesirable side effects from repeated injections of steroids.
Being free of back pain has made a huge difference in Erica’s life. Nearly set to graduate from high school, she can concentrate during her favorite science classes — preparation for the career she’s planning as a research geneticist. “I hang out with my friends more often,” she said. “If we go out walking, I always go now instead of never going. It’s nice to relax and finally be happy.”
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