Colic, rashes, ear infections — as a new parent, health concerns for your children inevitably crop up. What nobody expects to hear, though, is: “Your baby has arthritis.” But that’s how it was some 10 years ago for Chris and Erika Nieto of Kyle, Texas. After suffering from fever spikes, inconsolable pain and unexplained rashes, their 10-month-old daughter Mia was diagnosed with juvenile rheumatoid arthritis.
Kids Get Arthritis
Nearly 300,000 children in the U.S. are affected by some form of juvenile arthritis — an umbrella term including conditions such as juvenile rheumatoid arthritis, lupus and fibromyalgia. Juvenile idiopathic arthritis, also known as juvenile rheumatoid arthritis, is the most frequent type affecting children 16 and under. Swelling, pain and warmth in the joints are primary indicators. Older children may wake up with knee stiffness or a slight limp. Arthritis may only affect specific joints, and in some cases, symptoms may only last only a few months. But for some of these autoimmune disorders — like the systemic-onset juvenile arthritis that Mia Nieto has — inflammation can extend to the internal organs.
“A lot of people think of arthritis as just affecting the joints — like maybe they can’t open a jar, or they have a hard time walking up steps,” says Amanda Niskar, national scientific director at the Arthritis Foundation. “But it affects every part of the body, from the eyes and skin to your kidneys, depending on the type of arthritis you have.”
Mystery Symptoms
Chris Nieto recalls Mia’s first alarming symptoms at 9 months old: “She woke up with a fever of 105 degrees that lasted 37 days. She was favoring her left wrist and she wouldn’t stop crying.” It was an tumultuous time, a whirlwind of visits to the emergency room, pediatrician and eventually an infectious disease specialist.
There’s no single “Aha!” diagnostic test for juvenile arthritis. Mia underwent bone scans, X-rays and blood work as her symptoms worsened. She broke out into a rash and had problems moving. “Any movement of her joints was painful,” Nieto says. “In hindsight, we realized, even changing her diaper — we didn’t know we were causing pain, because her joints were inflamed.”
The Nietos traveled to Houston to connect with a pediatric rheumatologist — an expert in treating kids with juvenile arthritis — and learned that Mia’s liver and lungs were inflamed as well.
Treatment Urgency
It’s unclear what causes juvenile arthritis. Scientists believe genetic factors are involved, with susceptible kids developing the condition after being exposed to potential disease triggers.
Early recognition is critical. “So much of the disease progression is not reversible,” Niskar says. “If it attacks the joints, you might need to have joint replacement surgery.” For instance, children may eventually need their wrist joints replaced. “The sooner you get it diagnosed, the sooner you start treatment [to] prevent that damage.”
Once kids get persistent juvenile arthritis, “they’re dealing with it for their entire life,” she says. “It’s not like it goes away. Children with arthritis become adults with arthritis.”
Medication Decisions
Medications start with anti-inflammatory drugs such as ibuprofen (brand names include Advil or Motrin) or naproxen (Naprosyn). Disease-modifying drugs like methotrexate (also a standard cancer therapy) are the second line of treatment.
Prednisone and other steroids can reduce inflammation, but possible side effects — impaired growth and risk of infection — leave doctors and parents leery of long-term use.
Biologics — drugs such as etanercept (Enbrel) and adalimumab (Humira) — are effective for severe symptoms and can prevent joint damage. In part because of these newer drugs, Niskar says, there’s been a vast improvement in arthritis-related disability. Children who decades ago would have needed wheelchairs or devices to help them walk are the exception today.
But biologics come with potential complications, Niskar notes. As with steroids, they can further weaken a child’s immune system — making kids more vulnerable to infections like the flu. Choosing which drugs are best for a child is a case-by-case decision, she says, so it’s important for parents to work closely with their pediatric rheumatologist.
Protecting Mobility
As a 10-month old, Mia was started on naproxen, followed by prednisone. “It’s one of those love/hate medications,” Chris Nieto says. “We know the side effects of prednisone. But literally, when we had given her the prednisone — she could move. She could somewhat crawl. Before, for over a month, she had not been able to do that.”
With her mobility, range of motion and muscle development all affected, Mia’s walking was delayed. “She could walk, but it was very slow,” her father says. “She couldn’t even step down from something that was 2 inches high.”
Mia’s parents put her on intensive therapy — six days a week of aquatic, physical, occupational and horseback riding — until she was about 4 years old, then tapered down to intermittent appointments.
All those efforts have helped, Nieto says. “So when people look at her, they say, ‘She doesn’t look sick.'” What they don’t realize, he adds, is that “she literally doesn’t know a day without pain.”
Parents/Health Managers
Minimizing long-term joint damage is a major goal, and Mia is now on her third biologic drug — the first two had stopped working. Nieto says she’ll likely eventually need ankle replacement surgery and possibly jaw reconstructive surgery.
She’s being monitored for eye involvement and is seeing a neurologist to rule out a complication known as Charcot-Marie-Tooth disease, which results in nerve damage that could affect her feet. Lung complications are also possible.
As parents of a child with a serious, chronic illness, the Nietos manage all this medical information and work with an ever-expanding circle of health care providers. They’re determined to follow a course that will not only treat Mia now, but provide the best quality of life as she grows into adulthood.
Family Journey
Juvenile arthritis affects parents on a professional, financial, emotional and social level. And it affects siblings, too. Now nearly 11 years old, Mia has a sister — 8-year-old Ana Lucia. “We often have to tell her ‘No’ because we’re having to accommodate the schedule of our older child with the disease,” Nieto says. But, he says, Ana Lucia is loving and supportive of her older sister — and is learning to speak up for her fair share of attention.
Meanwhile, Mia is becoming more independent in taking her medicine, managing her health and advocating for herself. Twice a month, Mia misses school to receive an IV infusion. She’s still an ‘A’ student, her father says, and it helps to have understanding teachers. Socially, he adds, Mia is surrounded by friends who are supportive and giving, allowing her to be an “everyday normal kid.”
Arthritis Support
Camps geared toward kids with juvenile arthritis provide a great opportunity for them to spread their wings and have fun away from home. They give kids a chance to bond, communicate and share unique concerns. Mia and Ana Lucia spent a week together at camp in Capitan, New Mexico, and Mia has also attended camp in Oklahoma.
Parents also benefit from mutual support. Nieto, who volunteers with the Arthritis Foundation, says speaking candidly with other parents lightens the anxiety they share. The foundation’s Kids Get Arthritis, Too website provides information, lists resources and helps kids and families connect.
Future Directions
Niskar is excited about the potential of interdisciplinary sciences for combating arthritis. That could mean combining big data analytics with human genome data and technology. With more research, Niskar says, it might be possible to develop an early test for juvenile arthritis, launch clinical trials and potentially learn how to intervene before symptoms start.
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Helping Your Child With Juvenile Arthritis originally appeared on usnews.com
