Juvenile Idiopathic (Rheumatoid) Arthritis and Its Impact on Kids
This autoimmune disorder doesn't just affect elderly people. Sometimes, children are impacted, too. Luckily, treatments and outlooks have improved for kids.
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Rheumatoid arthritis is an autoimmune disorder that causes the body's immune system to attack its own joints and soft tissues. It can create inflammation, pain and, if not controlled, deformity. When children under 18 have it, it's called juvenile idiopathic arthritis or JIA (up until recently, it was called juvenile rheumatoid arthritis, or JRA).
About 294,000 kids in the United States have JIA or related conditions, according to the latest numbers cited by the Arthritis Foundation. It also notes that, here in Michigan, approximately 10,300 kids have some form of arthritis.
Charlie Stahl of Grosse Pointe Woods, Mich. is one of them. He's a 15-year-old kid who digs German language classes, noodles on the trumpet – and likes to scare his mom by doing wild tricks on his skateboard. It's hard to tell by watching him that Charlie has arthritis.
"I have it in both of my ankles, both of my knees and both of my wrists," he says. It's also in his toes, mom Valerie adds – and, a couple years ago, it triggered sleep apnea.
Charlie was diagnosed with JIA at just 1 year old. The news was devastating for Valerie, but not entirely surprising. She has had JIA from infancy.
"I can deal with my own pain and the surgeries and the hurting," Valerie says, "but then when it's your own child ... well, it broke my heart."
Symptoms and early identification
The good news for Charlie's family is that doctors know how to treat JIA better than ever before.
In the 1960s and '70s, Charlie's mother's doctors relied on aspirin, physical therapy and surgery to correct damage wrought by the chronic disease. At 48, Valerie has already endured 16 surgeries, including wrist fusions, knee replacements and a rebuilt jaw.
For Charlie, specialists have many more preventative tools to fight the crippling effects of arthritis before they set in.
In fact, now is an exciting time for treatment, says Dr. Hilary Haftel, the interim director of pediatric rheumatology at C.S. Mott Children's Hospital in Ann Arbor.
"That's one of the coolest things now, is that the drugs that have been developed are targeting specific proteins that are involved in the inflammatory cascade," she says – and "dramatically" cutting down on damage, pain and swelling to the joints. Powerful new "biologic" drugs (including Humira, Orencia and Actemra) are especially effective for kids with the most severe cases.
Charlie's arthritis is controlled by medication. "I get a little bit of pain if I do too much (activity)," he says. "Otherwise, I feel normal." But his recuperation time is longer. Last summer, he fell on his knee while skateboarding, Valerie recalls; it took a good two weeks to recover, where other kids might rebound in a few days.
"I think he's stabilized" in recent years, she says. "He has his ups and downs."
Charlie's mother identified his symptoms immediately and got him the help he needed. But most parents don't know children can get arthritis.
"Absolutely, when people think of arthritis, they don't think of kids," Haftel says. "A lot of kids will go undiagnosed or end up at an orthopedic surgeon instead of a rheumatologist."
Pediatricians often don't learn about JIA in medical school, so it can take multiple doctor visits and many months to get the right diagnosis. That means critical treatment time has been lost.
Kara Dorda, program manager for the Arthritis Foundation's Michigan Chapter based in Troy – who was herself diagnosed with JIA at 11 months old – says the foundation works to education pediatricians with its Critical Elements of Care for Juvenile Arthritis booklet.
"They say most of the damage is done in the first two years," Dorda says. "That two-year window is critical. It's when the flair is incredibly active, and it's when the disease is doing most of the damage.
"Once the deformity has occurred and it's in the joints, the medication isn't going to correct it," she adds. "It can control symptoms."
Luckily, she adds, there are several pediatric rheumatologists in Michigan – and new student loan incentives for those getting into the field. Still, there's a nationwide shortage of these experts.
Yet there also are telltale signs parents can look for. "Morning stiffness is a classic manifestation of (chronic) inflammatory arthritis," says Haftel – that is, if it persists daily for several weeks. Kids also tend to limp or may have trouble walking for a good 15-20 minute stretch.
"If that's going on for several weeks and hasn't resolved, that really needs to evaluated," Haftel says.
Diagnosis and treatment
Andy Moy of Waterford, who's 14, has a less common form of arthritis. When he was 4 years old, an itchy, ring-shaped welt developed on his scalp and wouldn't go away. Several months passed before a dermatologist finally recognized it as psoriasis.
"It took us a long time before we got that diagnosis," says Andy's dad, Nelson. "We took him to the family doctor, and he didn't know what it was."
As Andy's parents struggled to manage his psoriasis with medications, they received a surprise call from Andy's gym teacher. The kindergartner just wasn't doing as well as expected in gym, he told them.
Jaime and Nelson Moy understood their son's physical issues might be related to the psoriasis, which is also an immunological disorder. They took him to C.S. Mott Hospital's division of pediatric rheumatology. The diagnosis was juvenile psoriatic arthritis – a double whammy that involves symptoms of both diseases.
"Every morning Andy would wake up and say his back hurt, and we would say, 'C'mon, get out of bed. You're fine,'" Jaime says. "When we got the diagnosis, I was in tears and said, 'We have to go buy a new mattress right now,' trying to make up for the fact that he'd been in pain for so long and we didn't know."
In addition to the emotional and physical toll, chronic conditions also can impact families financially. Andy is regularly taking seven different medications – plus a few extras. Since 2009, the Moys have turned to Children's Special Health Care Services – offered by the Michigan government – for help.