Coping With Your Child’s JA Diagnosis

By Stephanie Watson

A juvenile arthritis diagnosis (JA) doesn’t just affect your child – its effects can reverberate throughout your family. Parents and siblings have to restructure their lives to accommodate frequent doctor visits, strict medication regimens and constant unpredictability as symptoms come and go.

“I remember those first years were really difficult, really challenging,” says Erika Vaughn, LICSW, a clinical social worker at Children’s Minnesota St. Paul, whose 13-year-old daughter was diagnosed with polyarticular JIA and enthesitis at 17 months. “It takes a long time to really wrap your mind around it – to understand what’s going on, to explain it to your friends and family and to deal with the changed expectations.”

Some parents, upon hearing their child’s diagnosis, immediately go into panic mode. “Parents may have a strong emotional response that starts to filter down to their child,” says John Chaney, PhD, regents professor in the Oklahoma State University Department of Psychology.

How well you cope with your child’s diagnosis sets the tone for how your child deals with it, Dr. Chaney adds. “The best predictor of a child’s adjustment to a chronic illness is their parent’s adjustment.”

Being prepared and relying on your medical team as allies can better equip you to deal with your child’s condition.

Be Proactive
Keeping your child’s arthritis well managed will both calm your anxiety and help you maintain a sense of control over the disease. “Keep regular doctor’s appointments and make sure she’s taking the medicine,” suggests Lauren Cox, PhD, a pediatric psychologist at Texas Scottish Rite Hospital for Children in Dallas. Be aware of any medication side effects or problems with dosing before they lead to treatment lapses.  

It’s also important that you and your child learn about the disease. If you don’t understand something that’s discussed during a doctor’s appointment, speak up or send an email after the visit. Learning about the different aspects of the disease and what to expect will help both of you understand what makes symptoms better or worse and recognize the warning signs of a flare.

Research about coping with pediatric illness is ongoing, but a 2009 study published in Pediatric Rheumatology supports the idea that understanding the condition helps. In it, parents reported that talking with medical professionals to understand their child’s situation was the most useful strategy to help them cope.

Unless your child is really young, make sure he’s involved in managing the disease, too. Work together to monitor symptoms and practice self-care. Balancing activity with rest can also help ward off fatigue or flare triggers, so keep an eye on your child’s schedule and sleeping habits.

Partner With Your Provider
“Maintain open communication with your team. At our clinic, I tell families any time you have a question or concern, shoot us a picture or send us a message and we’ll help you triage whatever that concern is,” Dr. Cox adds.

Talk to your child’s doctor about the best ways to communicate in between appointments or after office hours. Some doctors prefer direct emails and calls, while others may have an online patient portal for patients to write in concerns or triage problems. Develop a relationship with the rheumatology nurses and physician assistants at the practice, too. They can provide support when your child’s doctor is unavailable. And don’t forget to ask if there’s a social worker on staff. This health care professional can help in various ways, from providing emotional support to assisting with school accommodations.

Lastly, while doctors should stay in the know about new side effects and symptoms, not every sign that crops up may warrant a doctor’s visit or an immediate response. Discuss the types of issues that merit attention right away and have a plan in place should one come up. 

Have Backup Plans
Uncertainty is the new normal when you live with JA. Flares come and go when you least expect them, sometimes throwing your best-laid plans into disarray.

Although flares can be unpredictable, having a predictable response to them will make you feel more in control. “Have something planned for different scenarios,” Dr. Chaney says. “You need to have backup plans to your backup plans.”

Good planning involves having a medical strategy in place with your doctor to manage flares and a network of friends, neighbors and family to call on when you need help. Plan ahead when you travel, too. Research the names and numbers of doctors and pharmacies at your destination in case problems arise. Check your insurance plan for information about out-of-network coverage and what you may need to pay if your child needs medical care.

Take Care of You
It’s easy to forget about your own needs when you’re totally focused on your child. “After a diagnosis, it’s common for people to really own that role, which in some ways is really positive,” Vaughn says. “But for some people, that can overtake who they are as a human being.”

You can’t be a good caregiver if you neglect yourself. “When you get on an airplane, they tell you to put your mask on first before you put on your child’s, and that’s applicable here,” Dr. Cox says. “Parents can’t help their children if they feel overwhelmed or out of control.”

Get enough sleep, exercise regularly and carve out “me” time every day. Practice whichever relaxation technique works for you, whether it’s deep breathing, prayer, meditation or spending time with friends.

Seek coping strategies and advice from other JA parents when you feel at a loss for ideas. Online networks and support groups for JA parents, like the Live Yes! Connect Groups on the Arthritis Foundation site, are great resources.

“A support network can help parents find others they can identify with – people who have walked the same road that they are on,” Dr. Cox says.

If you feel overwhelmed, irritable or depressed to the point where you can’t function, see a therapist or other mental health professional. “Often it’s when the medication isn’t working and their child is having some pretty severe disease flares,” Dr. Chaney says. “Parents need some emotional support, too. They need other strategies.”