Helping Your Child with JA Cope with Major Medical Events

From diagnosis to switching meds, learn how to prepare your child for the potential challenges of juvenile arthritis.

Helping Your Child with JA Cope with Major Medical Events
By Stephanie Watson

Living with a chronic illness like arthritis can be difficult, even for an adult. Children may face even more challenges if don’t fully understand why they need to endure painful tests and procedures or why they sometimes have to miss out on school, birthday parties and other special events. 

These tips can help children with juvenile arthritis (JA) cope with the emotional challenges that come with their disease. Three mental health experts explain how to restore a sense of normalcy and equip kids with the resilience they’ll need to deal with their illness as they grow up.

Diagnosis

Some children actually feel a sense of relief when they’re diagnosed. Finally, those mysterious aches and pains have a name and a treatment. 

Even if the diagnosis worries you, don’t leave your child in the dark. Kids need to know that they have a medical condition and what will be done to treat it. “When we don’t tell kids what’s going on, they may assume it’s much worse than what is actually going on,” says Kristi Cedars, PhD, a pediatric psychologist at Children’s Hospital of Wisconsin.

That said, keep your discussion at an appropriate level for your child. “It really depends on not just their age, but also their developmental level. Some seven- or eight-year-olds may be able to grasp the concept of what’s going on and others may not,” explains Kaushalendra Amatya, PhD, a pediatric psychologist at Children’s National Health System in Washington, D.C. With teenagers, both parents and doctors can be more open about the situation, he adds.

If you need help discussing JA with your child, you can request a JA Power Pack, which includes a children’s book that describes life with arthritis in kid-friendly terms. This article may also help you explain juvenile idiopathic arthritis (JIA) to your child and why it happens. 

Medical Tests and Treatments

One reality of living with a chronic illness is having to undergo multiple tests and needlesticks. Surgery is also an ever-present possibility. Some kids adapt to these stressors better than others, but for children who are fearful, a few visits to a psychologist can be helpful. 

“It’s very normal for children to be afraid of needles and to cry when they’re getting a shot or blood draws. We see that quite often,” Dr. Amatya says. “The thing is to help them cope through the process.” 
Some hospitals have child-life specialists who can explain tests or treatments. “They demystify some of that process, which can help kids feel a little less scared,” says Lauren Partain, MPH, LCSW, a rheumatology social worker at Lurie Children’s Hospital in Chicago.

Distraction can also be an effective tool. Sing songs or do a puzzle with your child during uncomfortable experiences. After the test or procedure is finished, give your child a reward such as a toy or a trip to the movies as positive reinforcement.

Some kids have such extreme needle phobia that every visit to the doctor is a terrifying ordeal. This is where exposure therapy can help. During this treatment, a therapist gradually exposes the child to elements of the blood draw or medical procedure. After a few sessions, the child should start to feel more comfortable. 

Flares

JA can be an unpredictable disease. Kids might feel great during remission, only to plunge right back into pain when the next flare hits. 

Enjoy the good days, but don’t give your child false hope about the future. “The thing you definitely don’t want to do is tell them a flare won’t happen, because you can’t guarantee that,” Dr. Cedars says. “Focus on what you’re doing to control their condition.

Have a plan in place for when flares do hit. “We know we’re going to have pain, we’re going to have discomfort. How are we going to deal with it?” Dr. Amatya says. He suggests keeping a list of coping strategies, such as deep breathing, yoga or music.

Remind your child that the pain won’t last forever. “They’ll have good days and bad days,” Partain says. “Kids with arthritis will become experts on how to manage and cope with the bad days and celebrate the good days.”

Missing Out

It’s hard to be a normal kid when pain and disability prevent you from playing sports, or fear of catching an infection keeps you from going to friends’ birthday parties. During these times, “We want to focus on normalcy as much as possible,” Dr. Cedars says. “Even if you can’t take part in activities at your full level, you can still participate in some way.”

Kids want to have fun, but they need to do it in a more realistic way. Substitute laser tag for a movie. Use FaceTime or Skype to celebrate parties with friends from home or in rare cases, at the hospital. 

Schedule future playdates for times when your child feels better. “Give them other things to look forward to, so it doesn’t just feel like a loss,” Partain says.

Returning to Routine After Surgery

Because of treatment advances, the need for surgery to manage juvenile arthritis has significantly decreased. Still, for some, medication for children with arthritis surgery can alleviate pain and improve mobility. The downside is all the downtime that’s involved. Your child might have to stay out of school for a few weeks or more. 

“It can be really tough when a child has to miss a significant amount of school,” Partain says. This is where working with the school is important. Ensure that your child keeps up not only with schoolwork, but with friendships as well. One way to prevent your child from feeling left out is to schedule regular Skype or FaceTime calls with his or her class.

Transitioning back to school after a long absence can take some adjustment. Maintain structure in your child’s day throughout the absence, so the return to school isn’t as jarring. That includes keeping sleep and wake times as close to the school schedule as possible. 

On your child’s return, classmates will inevitably ask questions. “What we usually recommend is that they answer the questions on a very simple level,” Dr. Cedars suggests. “When the kids ask, ‘Where have you been?’ say, ‘I was in the hospital having surgery.’ That should satisfy them.”

If kids continue to ask questions, consider organizing a time where your child can present to his class about arthritis, or come up with another short easy answer like “I have arthritis, which means sometimes I get achy and tired.”

Switching Medications

Finding an effective arthritis medicine can take some trial and error. Each drug your child tries brings a new dosing schedule and possibly new side effects. Some medicines require self-injections. Kids can understandably get frustrated and stressed by the process.  

Let your doctor and other members of your medical team know about any problems that make it hard for your child to take medication – including needle phobia or side effects. When kids simply stop taking their medicines out of frustration, it can lead to poor disease management.

Finally, give your child some control over treatment – even if it’s something as basic as adding the flavor of their choice to an unpleasant-tasting medicine. “Sometimes we forget, especially when we’re working with young kids, that they may not be able to make a lot of decisions yet about what medications they’re taking and how they’re managing their arthritis,” Partain says. “But if we can find ways to give them some power, some choices they can make…that can be really powerful for kids because it teaches them that they have a voice in their own health care.”
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