Managing Juvenile Idiopathic Arthritis One Day at a Time
Seemingly out of the blue one morning, when Mason Merager was three years old, he woke up in extreme pain and wasn’t able to walk. The local orthopedist diagnosed the pain as an overuse syndrome brought on by his active lifestyle, but weeks and months passed and Mason not only wasn’t getting any better, he was feeling worse. The little boy was fatigued and prone to fevers, which his mother, Annmarie McMahill, thought were due to the upper respiratory illnesses he kept coming down with.
Finally, a scared, frustrated Annmarie drove her son to the nearest children’s hospital, which was nearly 500 miles away from the family’s Cody, Wyoming home. There, in a Denver hospital, the family learned the bad news from a specialist: Mason had juvenile idiopathic arthritis (JIA). In his case, it was manifesting itself with severe knee pain, pain in his hands, fatigue, and fevers.
Juvenile idiopathic arthritis (JIA), an umbrella term for a variety of autoimmune conditions and rheumatic diseases that can develop in children under the age of 16, afflicts close to 300,000 children in the United States.1 JIA is diagnosed on the basis of a thorough physical examination, a child’s medical history, and excluding other diagnoses. There is not a specific blood test to diagnose JIA, and while adults with rheumatoid arthritis typically test positive for the rheumatoid factor blood test, children with JIA typically test negative for it. 2, 3
Mason has oligoarticular onset JIA, which is defined as involving fewer than five joints in the early stages. Girls are more at risk than boys for this type of arthritis, and older children with the condition can develop “extended” arthritis that involves many joints and continues into adulthood. Since children with this form of arthritis are at a higher risk of developing uveitis, an inflammatory eye disease that can cause blurred vision and lead to blindness if not treated, Mason is tested every three months to make sure he is not developing it.
After his diagnosis, Mason was started on a course of Naprosyn, a nonsteroidal anti-inflammatory drug (NSAID), to combat his joint pain, and after a brief period, his arthritis went into remission. That pain-free period lasted three years until he was nine and in the fourth grade. It then returned with a vengeance, causing pain in both knees as well as in his hands.
Some Days Better than Others
Living with pain has been part of Mason’s daily existence since his diagnosis, his mother says, and he has been treated with a variety of medications over the years. When Naprosyn stopped working after about 18 months, he moved on to another NSAID called Mobic. That, too, was effective for a while. “He's probably tried 10 different NSAIDs,” Annmarie says. “Nothing works forever, so we just keep trying different medications to see what works for the time being.”
Fortunately, Mason has never taken methotrexate (which can have serious side effects) or any disease modifying antirheumatic drugs (DMARDS). He’s also tried alternative treatments such as eating a gluten-free diet and acupuncture. Both approaches have had varying degrees of success. “Massage therapy was also helpful during a particularly painful flare-up,” Annmarie explains.
Cortisone injections directly into Mason’s knees were effective, but on a recent visit to Boston to see specialists (Mason’s Denver doctor retired so the family now travels to the East Coast a few times a year), he developed an allergic reaction to the injections and had to extend the trip an extra two weeks to receive medical treatment.
To make matters worse, Mason was diagnosed with an OCD lesion that has resulted in three knee surgeries, each one marked by a very painful recovery period. Through it all, his mother, who works as a research scientist at the Center for Health and Safety Culture at Montana State University, has been his staunchest supporter, always there to listen when he needs to talk. Still, coming to terms with the fact that her son has a serious, chronic disease was a gradual process for this mom, who also has a seven-year-old daughter, Mali (Annmarie is divorced from Mason’s dad).
“I remember after we learned that Mason had arthritis—those dark early days of helplessness that I felt sitting in the doctor’s office as the storm clouds came rolling in,” Annmarie says. “In the months and years that have followed, I have been lost in the cycle of watching Mason in pain, struggling to find the right medications, driving long distances to doctor’s appointments, running hot baths for him, calling the nurse, and recording his symptoms.”
Mason, who will be a freshman in high school in the fall of 2016, finally explained his illness to his friends. Some days, they are helpful and understanding. “Other days, when they see that I’m able to do more than the day before, they ask why I couldn’t do that the day before,” Mason says. “They don’t understand that with arthritis, I have bad days and good days.”
Sometimes Mason feels so poorly he can’t make it to school so rather than miss class altogether, Mason and his mom negotiated with the local school district to purchase technology that enables him to participate remotely. “This disease has forced me to fight for my child and I’ve become pretty good at it,” Annmarie says.
Eventually, the school district purchased an iPad on a stick robot (aka telepresence robot) that Mason controls from home on his iPad. The robot travels from classroom to classroom on a Segway-like base following Mason’s schedule as if he were at school. The device makes it possible for Mason to virtually attend his classes.
A Valuable Resource
Mason, even when his days are painful, never feels sorry for himself. “Every day, I struggle with arthritis,” he admits. “But I have support at home and have become very active in the Arthritis Foundation. My family has made many friendships through our involvement in this group and it’s given me a way to help other kids by sharing my experiences and what I have learned.”
In 2006, not long after Mason’s diagnosis, Annmarie heard about the Rocky Mountain Arthritis Foundation’s Jingle Bell Run in Denver. “Focusing on the run gave us a sense of control over the runaway train our life had become,” she recalls. They recruited friends to run, helped spread the word, and worked tirelessly to fundraise. That year, the McMahill family was one of the top three fundraising teams for the Rocky Mountain region of the Arthritis Foundation, Annmarie says adding that Mason’s arthritis was in remission at the time of the race so he was able to participate and cross the finish line.
An Advocate is Born
Seeing a positive result come out of his work with the school district, Mason has become an advocate for other students with illnesses that interfere with school attendance. As an ambassador for the Arthritis Foundation, Mason makes himself available to the local chapter by talking to others about his disease. He has been to Washington, D.C. on several occasions to share his story with legislators. One important aspect he likes to discuss on Capitol Hill is how the lack of pediatric health care specialists in certain areas of the country hurts young arthritis patients. Mason and his mom know firsthand the struggle involved with traveling long distances in order to receive good medical care
Another source of inspiration for Mason is his service dog—a loving, smart and responsible Labrador named Toby. Mason’s fury companion was made possible through an organization called NEADS (National Education for Assistance Dog Services, also known as Dogs for Deaf and Disabled Americans).
Caring for Toby keeps Mason active. “If Toby has to do his business in the middle of the night, I have to get up and take him out,” Mason explains. “On days I’m not feeling good, I still have to throw a ball for him and that’s a big motivator for me.”
In March, Mason received the Arthritis Foundation’s Emerging Leader in Advocacy Award. (The annual awards highlight the work of volunteers who have performed exceptional service in support of the Foundation’s mission, and the Emerging Leader award is given to an individual under 21 in recognition of community service to those impacted with arthritis.)
“In our eyes, he has long been a leader for the children and adults in Wyoming who live with arthritis,” wrote Johanna Lindsay and Laura Rosseisen of the Arthritis Foundation Great West Region. “Despite painful surgeries and long recoveries, Mason has maintained a strong, optimistic, no-quit attitude. He and his family have provided much needed leadership in a geographically large and rural state, speaking out on behalf of those whose circumstances do not allow them to do so.”
Living with chronic pain has not taken away Mason’s enthusiasm for life and his plans for the future. Because he couldn’t play sports, which is tough in a state like Wyoming, where everyone skis, bikes, and hikes, his parents started to get flying lessons for Mason. He already 23 hours toward his private license. “Flying is something he can do when his body isn’t cooperating,” says his mom.
And Mason has high hopes of flying professionally when he grows up. He says proudly: “I really hope to be a pilot one day.”
Caring for a child with JIA can be challenging. For 5 expert tips to help you cope, click here.
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