THURSDAY, Dec. 23 (HealthDay News) — Liz Smith has six kids, and her fifth child has juvenile arthritis.
The first signs of arthritis in Emily, now 18, appeared when she was just 2½ years old, said Smith, who lives in Burke, Va. “She slipped in a swimming pool and had a swollen ankle that never got better,” her mother said. “That was the beginning of all of it.”
For several months, the family agonized over whether Emily’s ankle was sprained or broken, but then other joints started swelling. Her middle finger on one hand swelled to the point that her older brothers teased her about flipping them off.
Emily underwent a series of bone scans and blood tests to look for leukemia, bone infection or bone cancer — “fun stuff like that,” Smith said. “Once all of that was ruled out, the folks at the hospital said, ‘We think she needs to see a rheumatologist.'”
The specialist checked Emily’s health records and gave her an examination, and in short order determined that the young girl had juvenile arthritis. Her family received the diagnosis just before her third birthday.
“For us, the diagnosis was a relief,” Smith recalled. “We didn’t quite understand we were in this for the long haul. It took some time for us to come to grips with that. The dream changes from the hope that one day this will all be gone and you can forget about it, to hoping that she is able to live a full and productive life doing all of the things she wants to do.”
Emily has taken arthritis medication ever since the diagnosis. “The one attempt to get her off meds was disastrous,” Smith said of the effort about a month before Emily’s seventh birthday. “It lasted three weeks. We had these three wonderful, medication-free weeks, and then she woke up one morning and couldn’t get out of bed on her own. And then it got worse. It got a lot worse before it got better. It took a stronger medication cocktail and several years for her to get where she is today.”
Emily currently takes a combination of the gold-standard arthritis drug methotrexate, a newer biologic drug (Orencia) and a prescription non-steroidal anti-inflammatory drug. “She’s been fairly lucky,” her mother said. “She’s done pretty well for the last few years, in terms of not having any side effects.”
And Emily has not let arthritis deter her passions, her mother added. “She has been able to try everything she’s wanted to do,” Smith said. “When she was a very little girl, she was enthralled by the summer Olympics, and she decided she was going to be a gymnast. That fell by the wayside for a while, but eventually she was able to take gymnastic classes. At least she got to participate in it.”
Smith recalled another time, during Emily’s freshman year in high school, when she came to her parents and declared that she was joining the track team. “I said, ‘A couple days ago you couldn’t get down the stairs. How are you going to run?’ She said, ‘I’m not going to be a runner,'” Smith recalled. “She was going to pole vault.”
Emily’s parents said she could if her doctor allowed it, and then were flabbergasted when he gave it the OK.
“She pole vaulted through high school,” Smith said. “She did OK. She cleared six feet, and she had fun and she was able to participate on the team.”
Pole vaulting and arthritis collided only when doctors wanted to install a port to make her biologic treatments easier to deliver.
“She told the surgeon if she couldn’t pole vault with the port, then the port would have to wait,” Smith said. The doctors said the port would not interfere with her pole vaulting, so she went ahead with the procedure.
“She has amazing spirit,” her mother said. “She’s a very strong and confident and determined young lady. She still has bad days, but she’s doing really well. When I stop and think what her life would be without the benefit of these newer medications, those bad days don’t seem so bad.”
Now in her freshman year in college, Emily wants to pursue a bachelor’s degree in nursing. “It’s because of the nurses who helped care for her that she was able to make this decision,” Smith said.
“I think there are days, but they are few and far between, where her arthritis might weigh on her,” Smith concluded. “But for most of the time, it is what it is.”
More information
A companion article on juvenile arthritis offers more on diagnosing and treating the disease in kids.