The First 10 Things to Do After a JIA Diagnosis
Maybe your child’s been dealing with joint stiffness, swelling, fatigue, and pain for some time. Or perhaps he's dealing with blurry vision, dry eyes, and a recurring rash. It could be the loss of appetite and high fever that have you worried. What's clear is that your kid hasn’t been functioning at full capacity, so you head to the doctor to find out what’s going on. Then, after a battery of tests to rule out other conditions, you finally have a name for it: juvenile idiopathic arthritis, or JIA. Now what? These experts offer practical advice on what to do next.
Accept your many emotions.
You’re probably experiencing many feelings right now, which is to be expected. For one thing, like any chronic disease, JIA affects the whole family, says Maria J. Gutierrez, M.D., assistant professor of pediatrics in the division of pediatric allergy, immunology and rheumatology at the Johns Hopkins University School of Medicine in Baltimore. You might be surprised that a child can have arthritis, which many people associate with aging, adds Andrew Zeft, M.D., director of Cleveland Clinic Children’s Center for Pediatric Rheumatology and Immunology. Whatever you’re feeling, it’s totally normal. Give yourself (and your child) some time to process it all.
When you’re coping with a JIA diagnosis, take advantage of all the available sources of support. Dr. Gutierrez says that building trust and engaging in open communication with your child’s healthcare team is an important way to help you cope, so don’t be afraid to ask questions. Consider talking with other parents of kids with JIA, too. “Advocacy and parental organizations often organize activities, such as internet-based support groups, that help patients develop support networks and help them feel that they’re not alone,” advises Dr. Gutierrez. Be sure to seek help whenever stressors come up, she adds.
If you haven’t already, start learning about JIA from trustworthy sources, including scientific organizations like the American College of Rheumatology, foundations such as the Arthritis Foundation, as well as advocacy groups like Versus Arthritis, Dr. Gutierrez says. She believes that knowledge is key, because understanding what your child is going through makes all aspects of their care smoother. You can also be an informed advocate for your child when you’re up on the latest JIA news and research, and be better able to explain to concerned family members and friends about what your child is facing and experiencing.
Get to know your kid’s treatment plan.
Like any illness, JIA can be mild to severe, so your child’s treatment plan will depend on how serious his disease is, and what subtype she has. (There are seven types of JIA, total, Dr. Zeft says.) “Most treatments involve using anti-inflammatories and medications that modulate the immune system,” explains Dr. Gutierrez. These medications might be applied directly to the joints, or given orally or by injection. The goal of treatment is to stop the immune system from overreacting, according to Dr. Zeft. Dr. Gutierrez says some kids may need additional interventions, including physical therapy, orthopedic devices, and/or surgery.
Help your child confront JIA in an age-appropriate manner.
Explaining a health condition to a child can be a challenge—it can be tough to know how much, and exactly what, to say, especially to little ones. Dr. Zeft suggests telling children in simple terms why they’re having doctors’ visits and blood draws. For tweens and teens, parents should help their kids take ownership of their treatment, including learning how to do self-injections, to prepare them for being on their own one day. If your child is struggling, check out a JIA support group for kids, consider a JIA summer camp, or connect with a therapist.
Think about adjustments at school.
Will JIA affect your child’s school experience? “With adequate treatment, many children are able to participate in all school activities”—including P.E.—"with minimal disruption,” says Dr. Gutierrez, just with modifications. She says JIA kids may need extra time during and between classes to finish assignments, or to use an elevator to avoid stairs. During a flare-up, JIA kids may need to limit activities during gym class or take a break altogether until they’re ready to get back into the game. Earn an A+ in parenting by preparing your child and the school staff that such adjustments may be necessary.
Make movement, exercise, and physical therapy top priorities.
People with arthritis tend to get stiff, so exercise and regular movement are crucial, both doctors say. “We encourage people to stay active as much as possible and to avoid sitting for too long,” Dr. Zeft says. Be sure teachers understand why your child may need to stand up and move around the classroom from time to time. Exercise helps maintain the joints and muscles, decreases chronic pain, helps ward off weight gain, and supports general well-being, Dr. Gutierrez adds, so encourage it. Physical therapy can also be beneficial, helping JIA kids with balance, range of motion, coordination, and strength.
Be prepared to face other health issues.
Dr. Gutierrez says that complications may—or may not!—develop, depending on your child’s JIA subtype. Chronically inflamed joints can lead to decreased height, asymmetry of arms or legs, pain, and joint damage. Eye inflammation (uveitis) is common, too. Some kids develop inflammation in their organs or other tissues. And, “localized complications may develop depending on the affected joints. If arthritis involves the jaw, this may affect facial growth, teeth, and mouth movement,” she adds. If side effects from medications occur, lowering dosages or switching meds can help, says Dr. Zeft.
Understand that there is no one-size-fits-all for JIA.
The good news? “The medications these days really are effective in quieting the disease,” says Dr. Zeft. He says there’s always the occasional case of JIA that’s difficult to treat and requires some creative thinking, but “the majority of kids can lead a relatively normal life outside of potentially needing medication, lab draws, and frequent doctor visits.” The path of your child’s JIA progression will likely be an individual one, too. “Some cases of JIA may improve over time, whereas others persist chronically,” Dr. Gutierrez says. “The disease subtype also may change over the course of the disease.”
Trust this will soon feel “normal”—and that your kid will be OK.
Though a JIA diagnosis can feel overwhelming at first, know this: There are many resources and effective medications to greatly improve your child’s quality of life, says Dr. Zeft. You will have to get used to making sure your child takes his or her meds on the regular, but “it quickly becomes the norm,” he reassures. To prevent long-term problems, make sure you’re taking your child for frequent eye exams and follow-ups with a rheumatologist, and that you’re sticking to the treatment plan, Dr. Gutierrez urges. Finally, take heart. "Most kids do quite well,” says Dr. Zeft.