Juvenile Idiopathic Arthritis: Adam Mason Jumps Again
“We’ve come a long way in a year.”
Adam Mason was diagnosed with juvenile idiopathic arthritis (JIA) in November 2006 just before his second birthday. At that point, he was waking every morning with such pain in his joints that he was unable to walk. Several months later, under the care of a Cincinnati Children’s rheumatologist, he began a medication that has put him into medical remission. Now he is back on his feet again, not only walking, but jumping and pedaling a big-kid bike, too.
After beginning medication to treat his JIA, Adam gained strength in his joints and has recently begun proudly riding his new bike.
Caroline Mason rattles off dates from memory. On September 11, 2006, her son Adam woke up and couldn’t move his right arm. On November 21, he was diagnosed with juvenile arthritis. On March 9 of the following year, he began medication that put him into medical remission. Such is the life for the parent of a child with a chronic illness. Milestones are ticked off by heart, each date etched into the mind like a child’s handprint pressed into concrete to be preserved forever.
The Masons’ story begins from the time Adam was a baby. Caroline and her husband Chuck noticed since he was born, Adam ran a high fever about once a month. It was never associated with a cold, and it wasn’t serious enough to cause too much concern. But in the fall of 2006, when Adam was 1-1/2, he got sick and was having a lot of respiratory problems. Each day he would spike a fever of about 103 or 104 degrees, but it wouldn’t linger. Caroline and Chuck knew it was something serious when Adam woke up one September morning and couldn’t move his right arm. Their pediatrician sent them to Cincinnati Children’s for blood work and X-rays where he was admitted to explore the possibility of a bone or joint infection. He could be released if he had no temperature, but each day the fever would return. After a week, he was discharged.
He was readmitted the next week and eventually was referred to the Division of Rheumatology, home to the largest and longest standing pediatric rheumatology center in the country. There, the family met pediatric rheumatologist Murray Passo, MD.
Caroline remembers it taking about a month for Dr. Passo to diagnose Adam. Juvenile idiopathic arthritis, a newer, more broad term for juvenile rheumatoid arthritis, is a ‘diagnosis of exclusion.’ This means the care team excludes any other conditions or types of arthritis that could resemble JIA. This exclusion process requires a comprehensive history, with a review of symptoms and a thorough head-to-toe physical exam. It is also important to review the child’s and family’s past medical history.
Adam Is Heard
“We are so appreciative of the fact that Dr. Passo listened to Adam,” Caroline says. “Adam had been saying ‘knee hurt,’ but we and his other doctors weren’t listening to him.” She says Dr. Passo makes a point of talking directly to Adam at his appointments. “I think that being listened to has made Adam feel a part of this whole thing.”
Dr. Passo gave the Masons Adam’s diagnosis of systemic JIA in late November 2006 just before Adam’s second birthday. Systemic JIA is a form of juvenile idiopathic arthritis which affects the entire body or “system,” often before it affects the joints. Symptoms can vary, with fever and rash being quite common. Eventually, most children will develop arthritis in at least a few joints. Adam’s symptoms included fever, rash, anemia and an enlarged heart. By this time, his skin had become very affected by the disease. Taking baths bothered him, and he would develop a rash around his ankles when wearing socks.
Adam enjoys a spring day outside playing with big brother Josh, age 5, and new little sister, Mia, age 2, who recently joined the family through an international adoption from China.
Before long, the symptoms progressed and Adam began experiencing joint pain. He woke in the morning unable to walk because his legs were so sore. “By Christmas time, before he was on medications, it took until 10 or 11 o’clock to get him to walk,” Caroline says. “Then he’d be OK for most of the day until about 6 pm when he’d be in pain again.”
That was when Adam started taking a slow-acting antiinflammatory in the form of a weekly injection to help control the pain and inflammation he was experiencing. After two months it was not working quite as well as had been hoped. So he started another antiinflammatory called a biologic agent. “Biologic” refers to materials produced by our bodies, such as genes and cell matter. Explains Janalee Taylor, RN, a clinical nurse specialist and associate clinical director of Rheumatology, “With systemic JIA, we’re getting more specific in looking at which medications seem to be the best in cutting down the inflammation. This biologic agent is specifically targeted for systemic JIA and allows us to be much more precise.” She likens these advances in treatments to a trail of dominoes. In the past, JIA therapies would take effect toward the end of the line of dominoes. Newer treatments are targeting the top of the domino chain, so that the patient never has to experience what would have come further down the line. “These advances have had a profound effect on treatment and ultimately on outcome,” Ms. Taylor says.
A Good Morning
When Adam began that second medication on March 9, 2007, Chuck and Caroline were told it might take some time to take effect. They went to bed that night not knowing if Adam would improve over a matter of days or weeks. The very next day, they had their answer when they awoke to a strange sound coming from Adam’s room. Concerned, they went to check on him. Previously it would take them hours to get their son up and active. That morning they found him enthusiastically jumping up and down in his crib. “He was so happy!” Caroline recalls. So were they.
Now having been on medication for more than a year, Adam is considered to be in medical remission, meaning he is in remission but on medication. He takes iron for anemia and he continues a daily medication injection for the joint pain, but he has had no arthritis flare-ups in the past year.
At age 3-1/2, Adam takes part in managing his health by helping to give himself his daily medication injections.
At first giving the injections of medication was harder than dealing with the pain. Imagine a 2-year-old’s reaction after telling him he’ll be stuck with a needle every day. On top of that, Chuck’s career as a pilot has him out of town for several days at a time, so oftentimes Caroline was on her own for these traumatic moments with Adam. Eventually she set up a system with neighbors who would stop by to help her administer the medication. Fortunately, Adam adapted. “Now he pushes the syringe himself,” Caroline says. “We’ve come a long way in a year.”
The biggest struggle for her is that the long-term prognosis is unknown. No one can tell her, “The worst is over,” or “Adam will never suffer again.” He could grow out of it, or he could have a relapse that might be worse than what he’s experienced thus far. That feeling of helplessness is unsettling for a parent who fiercely wants to protect her child.
Raising Awareness and Money
The Masons have found comfort by becoming aggressive advocates for their son’s health. They attended a national juvenile arthritis conference last year. “It was great to learn more about the disease and also to meet others in the same situation,” Caroline says. They also got involved with the Arthritis Foundation and made many contacts who helped them get through the tough times. And last year Adam participated in a camp for kids with JIA. “I was glad to see kids of all ages with juvenile arthritis,” Caroline says. “It helped me to see that my child has a future.”
Additionally, the family has found it crucial to spread the word about JIA. Proudly wearing t-shirts proclaiming, “Kids get arthritis too,” they’ve done the Arthritis Walk (where Adam was an honoree) and the Jingle Bell Run, both of which benefit the Arthritis Foundation. They also participated in Cincinnati Walks for Kids where money they raised went toward the Division of Rheumatology at Cincinnati Children’s. Funding for the division is critical to continuing the numerous rheumatology research efforts underway, including studies on new biologic treatments for juvenile arthritis, genetic studies, and efforts to improve outcomes for children with JIA. The Masons’ hope is that increased awareness and funding will one day lead to a cure. It’s also a way for them to give back in response to all the help they received early on during Adam’s diagnosis.
And how is Adam handling all of this? Like a champ, say his parents. The active little towhead, called “Mr. Sunshine” by his mom and “Mr. Mischief” by his dad, is a laid back kid. He recently started pedaling his bike and can often be found dressing up in crazy costumes. He has no idea how lucky he is to have a rheumatology specialist so close by.
“One thing that became aware to us at the juvenile arthritis conference was that people don’t have pediatric rheumatologists just down the street from them,” Caroline says. “We take Cincinnati Children’s for granted. We met other families who had to drive four hours one way to get to a pediatric rheumatologist, or fly to a monthly appointment. We are so fortunate to be here in Cincinnati.”
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