A disease like juvenile idiopathic arthritis (JIA) can affect every aspect of your child’s life: physical pain, chronic fatigue, constant doctor’s visits and medications, plus possible learning problems from falling behind. Then, there’s the psychological toll—feeling depressed, anxious, and different from other kids at a time when most children would do anything to fit in with their chosen group.
“The impact can be tremendous,” says Karen Brandt Onel, M.D., chief of pediatric rheumatology at the Hospital for Special Surgery in New York, NY. And while she’s referring to JIA kids, she knows how much their parents are hurting, too. “For a lot of us, we feel very powerless when our children aren’t well.”
Which can be unmooring, especially since parents run the show when it comes their child’s healthcare needs (and everything else), including emotional support. “Parents are the only ones who can do these things” for their kids, Dr. Onel says. “You’ve got to feel powerful.”
So, how do you help your JIA child better cope—even as you are trying to cope, too? Learn to trust yourself, keep moving forward, and all will be okay, assures Dr. Onel. And try these expert tips, which cover everything from pain control to school and lifestyle interventions to help your JIA child thrive.
Put on a Brave Face
If you’re tense or upset, your kid is likely to pick up on it and become anxious too, says Dr. Onel. “I can’t tell you how many times the parent is crying while the child is getting their labs done,” says Dr. Onel, which can be very hard on a kid. Even subtle signs of parental distress, like a grimace or a furrowed brow, can be enough to affect your child, she adds. Same goes for giving your child injections at home, if that’s part of your treatment plan—do your best not to flinch or freak out. Remember, as parents, you must try to present a calm, united front. Normalizing the experience is important, and that starts with you. Feel like you can’t do it? Consider this question from Dr. Onel: “If your child had diabetes and you needed to give them insulin shots three times a day, could you do it?” Because diabetes feels more familiar, most parents answer yes to this question, Dr. Onel explains. “Most people are so surprised to hear that children get arthritis,” she says. “Reframing into language that is more familiar makes it easier to trust your ability to do anything.”
Assemble Your Child’s Pain Management Team
Because JIA pain can impact so many areas of your child’s life, it makes sense to recruit a multidisciplinary team of experts to help, suggests Daniel Sova, M.D., who specializes in pain management at Johns Hopkins University School of Medicine and the Pediatric Pain Rehabilitation Clinic at Kennedy Krieger Institute, in Baltimore.
“Treating chronic pain in adolescents is like a puzzle,” Dr. Sova says. “You need all the pieces to complete it.”
Here are a few experts you might consider seeking out. (You can find all of them at a pain rehab clinic.)
- A pain-management physician. If pain is interfering with your child’s schooling, relationships, or daily activities (and the painkillers from your pediatric rheumatologist aren’t helping), make this doc your first stop. Most children with JIA have pain and discomfort—but the impact depends on disease severity and the child’s individual threshold for pain. Your pediatric rheumatologist may recommend over-the-counter or prescription NSAIDs (nonsteroidal anti-inflammatory drugs), such as ibuprofen (Advil) and naproxen (Aleve). But if that’s not enough, you can turn to a physician who specializes in treating pain. A pain doc can prescribe other painkillers, such as nerve pain meds, steroid injections, or “nerve blocks,” which stop pain signals from traveling to the brain. This expert can also develop a pain treatment plan (including lifestyle changes, which we’ll cover in a moment) based on your child’s unique needs and goals, and they may also refer you to one or more other specialists on this list.
- A physical therapist. If your child is very young and still growing and developing, or needs help staying active, a PT is your next team player to include. Exercise is medicine for kids with JIA, says Joyce Hsu, M.D., a pediatric rheumatologist at Stanford Children’s Health in Palo Alto, CA. It’s vital for preserving mobility and strengthening the muscles around affected joints. A physical therapist will develop a personalized exercise program of stretching and strengthening exercises, and can help you work it into your child’s daily routine. “Your physical therapist is your best friend,” says Dr. Onel. “They know how to make this fun, and they are really good at it.”
For younger children, a PT can show you how to strategically play with your child so they work the right muscles—by having them squat to retrieve an object, for example, or climb stairs. Because JIA pain can lead younger children to alter their movements to compensate for their discomfort, growth and development can be impacted, putting them at risk for muscle imbalances and loss of strength and mobility, says Dr. Hsu. Physical activity can help prevent these issues. Keep in mind if your child has adapted to move in a certain way, you may need to help her retrain her body to use affected joints. For example, if she’s adapted to favor one leg over the other, you and your PT may need to remind her to use both legs, Dr. Hsu says. Simply say, “Your right knee doesn’t hurt anymore, so you can start using that.”
It can be a challenge to get any teenager to exercise, much less one who’s achy or tired. But movement actually nourishes the joints and can help adolescents feel better. Help motivate your child to exercise by reminding him how much better he or she feels afterward, says Julia Zhang, M.D., a pediatric rheumatologist at the Floating Hospital for Children at Tufts Medical Center in Boston, MA.. For teens who may be deconditioned or who are unmotivated, seeing a physical therapist is a safe, effective way to introduce them to an exercise routine, she adds.
Expect your child to go once or twice a week for 6 to 12 weeks before “graduating” to do home exercises on their own. You may return for a follow-up every few months, to see if adjustments are needed. Once they notice those positive effects, they’ll likely seek to re-create them on their own by continuing to exercise, motivating them long-term. But one word of caution: Whatever you do, don’t call your kid lazy if it takes them some time to get into an exercise routine, says Dr. Zhang. Stay positive and supportive while your kid is, yep, working it out.
(One last note: Depending your child’s pain level, you may also consider seeing an aquatic physical therapist, who prescribes special exercises to do in a pool, since water workouts put less stress on the joints.)
- An occupational therapist. If your child has hand pain and struggles with fine-motor tasks like writing, typing, or buttoning clothes, an occupational therapist can teach strategies for performing these daily tasks so they don’t hurt as much. For example, an OT might suggest your kid try writing with a thicker pen or eating with bigger utensils, which don’t require a tight grip. Or an OT can teach your child how to use technology tools like “talk to type” apps to decrease the need for nimble fingers on a keyboard. An OT will also determine if a wrist splint, which can help immobilize the wrist and reduce pain and swelling in the wrist, fingers, or both, would be helpful, and even have one custom-made for your child.
- A behavioral psychologist. If chronic pain is affecting your child’s mood, try a behavioral psychologist who specializes in pain to teach you and your child coping strategies to mitigate the pain’s effect on your child’s mood, says Dr. Sova. Research suggests that these interventions can reduce pain’s intensity, frequency, and duration in children with chronic pain conditions. These strategies can include cognitive-behavioral therapy (CBT), mindfulness, and distraction techniques, where your child is asked to focus on something—like mental images—thus drawing attention away from the pain. The more we pay attention to the activity, the less we focus on the pain, Dr. Sova says. “Pain doesn’t go away, but it shifts into the background.” Depending on your child’s needs, he/she may see a behavioral psychologist for a few months to a few years.
- A psychiatrist. Kids with JIA are at greater risk than healthy kids are for depression and anxiety, according to a 2019 study review. If your child seems unusually irritable or angry, sad, or socially withdrawn, then a psychiatrist may be appropriate, says Dr. Sova. A psychiatrist can diagnose and treat specific mental-health issues.
Work Directly With Your Child’s School
It’s important to have a game plan in place for your child during the school day. So, be proactive, says Dr. Hsu. Let your child's school know that he or she has JIA and may need some accommodations.
Many kids with JIA can benefit from what’s called a 504 Plan, a formal plan that schools develop to give kids with disabilities the support they need, says Dr. Hsu.
To set one up, you’ll want to request a 504 Plan in writing and arrange to meet with school staff, perhaps a guidance counselor, principal or vice principal, and one or more of your child’s teachers. Pro tip: Ask that the school nurse (if the school has one) be included in the meeting, as well, says Dr. Hsu.
In advance of the meeting, get written notes from your child’s medical care team detailing the child’s issues and providing suggestions for school accommodations. Be sure to do some brainstorming of your own, too.
Here are some accommodations you might want to request:
- Allowing your child to arrive at school a little late
- Allowing extra time for your child to get to classes
- Letting your kid type, record, or give answers verbally instead of writing
- Providing extra time to complete tests or assignments
- Letting your child get up and move around during class
- Giving your child the option to sit out or modify activities in gym class at their discretion
- Providing an extra set of books for your child to keep at home (so they don’t have to lug a heavy backpack to and from school every day)
Even if the school can’t meet every one of your requests, you should be able to work together to benefit your kid as much as possible, says Dr. Hsu. And, be sure to pick a contact person at the school with whom you can follow up to see if the plan is working.
If your child needs extra help, you can also ask for an Individualized Education Plan (IEP), which goes further than a 504 Plan by providing specialized programs or services, like physical and occupational therapy. (For example, a child who struggles with writing might work one-on-one with an occupational therapist while the rest of the class practices handwriting.) The process to get an IEP is more involved than it is for a 504 and requires a comprehensive evaluation by the school to determine if your child is eligible.
Need help? Many hospitals and pain clinics employ social workers who help parents advocate for their children at school. Ask your doctor to connect you with one.
Start Moving First Thing
Now, for a few lifestyle tips. For kids with JIA, morning stiffness can make getting out of bed and moving extra hard, says Dr. Zhang. It can take anywhere from 30 minutes to an hour (or longer) for that stiffness to go away. The best way to combat that is by getting an early start. About an hour before your child has to wake up, try placing a heated blanket on your child’s stiff joints (or use an electric blanket with a timer), because warming the joints can help loosen them. Another option: Have your child start the day with a warm shower. You might also try giving your child a little extra time to move around in the morning, says Dr. Zhang. Stiffness gets better with movement. So, once your child gets moving with the day, encourage them to keep at it—and that includes your PT-sanctioned daily exercises to maximize mobility and decrease stiffness and pain.
Develop a Sleep Routine
Up to 75% of JIA patients report at least some fatigue, contributing to low mood, high stress, and lower quality of life. Proper sleep is key. Having a good sleep routine can help by training the brain to associate the routine with bedtime, says Dr. Sova.
Rule number one: Ditch the screens an hour before bed—no TV, no computer, no phone, says Dr. Sova. Research shows that nighttime exposure to light—in particular the “blue” light emitted by electronic devices—can disrupt the body’s release of the sleep hormone melatonin and may lead to poor sleep. Plus, viewing stimulating content before bed can alert the brain, disrupting sleep. Suggest more-relaxing activities like reading or listening to music or a podcast.
You can also try leading your child in relaxation exercises—ask your behavioral therapist for ideas, or find sample exercises here, from Comfort Ability.
Stick to your routine even on the weekends, Dr. Sova says. If your kid complains—which all kids are wont to do (JIA or not) about a standard bedtime—remind them of the positive effects, like how sleep impacts their day and life, and helps them better function. (Again: Positive reinforcement is your friend.) Just be sure to give the routine a chance to work. “Creating good sleeping habits is a process, and different tools work better for some patients than others,” he adds. Be patient. It may take a couple of weeks before your child notices improvement.
Connect With Other Families Who Have Kids With JIA
Because JIA is not well-known, children who have it often feel isolated. Take one of Dr. Onel’s patients, who told her he believed he was the only one in the world with the condition. “What I couldn’t tell him,” Dr. Onel says, “was that I was taking care of one of his classmates.”
Consider joining support groups, events, or programs. Meeting other kids with JIA can help your child feel less alone. The Arthritis Foundation, for instance, hosts JA Camps across the U.S., where kids with arthritis can meet other kids like them. (Virtual camps are on offer in 2020.) “They’re staffed by medical professionals,” says Dr. Hsu, “but, really, the kids aren’t interested in talking to the counselors. They’re interested in meeting each other.” Dr. Hsu recalls one young girl comforting another child before getting a shot, and watching parents commiserate and swap tips.
If your child is 10 or older, you may also consider Comfort Ability, a one-day program held at health centers across the U.S. (plus some offerings in Canada and Australia) where adolescents and parents learn strategies for dealing with chronic pain. Some locations—including the Kennedy Krieger Institute in Baltimore, where Dr. Sova works—are providing virtual workshops.
Instill Hope in Your Child
When you’re a kid, hearing that you’ll be on medication for the rest of your life can be tough. So, try framing it another way. Dr. Hsu tells her patients that with new research and treatments coming out all the time, a cure may very well be on the horizon. (She likes to reinforce her point by referencing the many TV commercials for new medications—which resonates with children familiar with such ads.) Dr. Onel agrees that finding a cure in her patients’ lifetime is very possible. “My patients are very little,” she says. “If you think about how far we’ve come in the last 30 years, [it's] one hundred percent.” In the meantime, the vast majority of kids with JIA do find a treatment that works for them, preventing any permanent damage from occurring. And, many go into remission and lead long, healthy normal lives, she says.
Parents: Learn to Let Go
As your child gets older and starts to develop an identity, he or she probably won’t want to be known as “the kid with arthritis.” But making their childhood as normal as possible can mean not giving into your own anxieties, Dr. Onel says. “Your first instinct is you want to hold them close. You don’t want them to do anything that gets them injured,” she says. But the fact is, overprotected children may not perform as well in life, she adds, if they never get a chance to develop the resilience and confidence needed to succeed. So ask your child’s doctor about your kid’s limitations. If the doc gives you the green light, encourage your child to try different activities and go out with friends. “You want that real life waiting for them,” Dr. Onel says. “I say this as a mother: Some people just know how to let their kids soar, even when they’re scared. We could all learn a lesson from them.”