Living with Juvenile Arthritis. Kimberly Poston Miller
If I didn’t jump on every opportunity when Grant felt well enough to socialize, he would never be able to attend. Stringently abiding by the rules was less important than preserving the tiny glimpses of joy and friendship in his life. Being flexible helped us to find that balance.
Different Priorities
Although our lives had changed dramatically, and we desperately wanted “the old Grant” back, JA did not define our lives. If anything, it created a paradigm shift in our family. It gave us a newfound appreciation of our old life, and life, period. We learned not to take any day for granted, and we reveled in the small successes. Sleeping through the night, going to school, even for a few hours, walking … things previously overlooked as givens were now cause for celebration.
We developed thicker skins, but at the same time expanded our empathy for others. We had witnessed, firsthand, so much suffering and sorrow. During Grant’s hospital stay, one of the other children on our floor lost their battle. We had met the family in the break room and talked together over coffee. We also heard the crash cart barreling down the hall in the middle of the night and saw the anguish when there was nothing left for the staff to do. This illness suddenly became very real. Hearing of another seriously or chronically ill child hits much closer to home now; and it still creates some very raw emotions, especially for Grant, who, at the tender age of eleven, was faced with his own mortality for the very first time.
At face value, this may all seem very depressing—truthfully, it was a very sad and difficult time. But that is only half the story. Although I would never choose this for my child, it has made our family stronger. It has made Grant stronger. We laugh harder and, of course, cry harder, too. In some ways, we feel much more alive! We have also become more grateful than ever—for Grant being a fighter, for friends and family who have come through for us, and for the simplest of joys. By necessity, we have streamlined our life and, in the process, reevaluated our priorities. We have found support in the most unlikely places and renewed our faith. Although the situation we experienced was quite a challenge (and still is, but on a much lesser scale), I am reminded that the only way coal becomes a diamond is through heat and pressure, squeezing out the impurities to create something even better. How you approach this disease will make a difference in how it affects your family. We didn’t choose JA, but we can choose how to live with it. We’ve decided to let it change us for the better, and so can you.
Did you know that juvenile arthritis is one of the most common childhood diseases in the United States? Approximately 300,000 American children are affected by pediatric arthritis and rheumatologic conditions—and the numbers are on the rise. And, yet, there is a great deal that is still unknown about this affliction. As I touched on earlier, there is no set course of treatment; symptoms can vary widely from child to child; and even the diagnosis can change over time since there are so many forms of the disease. It’s unpredictable, to say the least.
The broadest definition of juvenile arthritis is any form of arthritis or arthritis-related condition that develops in children or teens younger than the age of 16. The most common form is juvenile idiopathic arthritis (JIA), which means “from unknown cause.” Unlike osteoarthritis (the type you associate with aging and overuse of joints), juvenile arthritis (JA) is usually an autoimmune disorder. In adults, the condition is referred to as rheumatoid arthritis (RA). In both cases, the immune system attacks some of the body’s healthy cells and tissues. Research suggests that it may be a two-step process: something in the genes (a genetic predisposition or the presence of a known marker such as HLA-B27) makes the body more conducive to the development of the condition, and then something else, like a virus, can set it off.
The way an attack is manifested depends on the type of JA the child has. Once the child is diagnosed, the next challenge is to determine the specific type. The first six months after diagnosis are especially important, because each type of JA can respond to treatments and medications differently. In fact, certain treatments are only used for some subtypes and not for others. However, during an episode of high inflammation or “flare,” some treatments, such as the use of steroids, are common across all types. To further confuse matters, some children respond better to medications that are atypical treatments for their type. For example, our son Grant responded better to some medications used for juvenile dermatomyositis (JDM) than those typically used for his first diagnosis of enthesitis-related JIA, despite the absence of a JDM diagnosis! The earlier the specific type is determined, the better chance the medical team has to limit or even reverse possible damage to the parts of the body that are under attack.
The Big Picture
In the beginning, I just wanted a firm diagnosis. When the doctors felt that it was enthesitis-related JIA, I thought, “Okay, now we can make a plan.” But that diagnosis morphed into probable spondyloarthropathy because Grant was showing signs of bowel disease (a condition that is commonly related to spondyloarthropathy). So, we mentally shifted gears. From there, we heard rumblings of systemic arthritis, psoriatic arthritis, urticaria, autoimmune diabetes, episcleritis, and uveitis, to name a few medical conditions. Some of the symptoms related to these other conditions materialized, while others didn’t. Certain symptoms seemed to appear out of the blue, each requiring the opinion of a specialist. As a matter of fact, our son was collecting specialists faster than a 12-year-old boy collects baseball cards! He was seen by doctors in rheumatology, allergy, hematology/oncology, infectious disease, immunology, orthopedic surgery, dermatology, gastroenterology, cardiology, ophthalmology, endocrinology, neurology, psychology, pain management, and ear, nose and throat! It was overwhelming.
Eventually, I learned to focus less on the specific diagnoses (that is the doctor’s job) and more on getting Grant the treatment he needed. Worrying about this syndrome or that subtype changed nothing. Simply put, no matter how we decided to define it to the world, his body was attacking itself. In the beginning, the where, when, and how seemed to change with the direction of the wind. My job was to help the doctors pin down what was going on when they couldn’t observe him, and then help get him the right treatments and the right care at the right time. In comparison, my younger son Evan’s case has been much less complicated, involving a few issues that have been easily managed on the first attempt, with just a couple of doctors in the mix. Like I said, every case is different.
Educate to Communicate
Nevertheless, educating yourself about the different types of pediatric autoimmune conditions can be helpful to communicate with the doctors. One of the best resources I have found is Dr. Thomas Lehman’s book It’s Not Just Growing Pains, which covers all types of JA and related conditions. Keep in mind, there can be quite a bit of overlap from one type to the next, so just because you may see similar symptoms don’t panic and don’t self-diagnose! Use that information to help the doctor.
As an example, lupus runs in our family, and many of Grant’s symptoms (after his first hospital discharge) seemed to mirror cases of lupus that I had researched. Grant did not have lupus, but framing his symptoms in a context that was well known to the doctor helped me effectively communicate what was happening to Grant on a cyclical basis. Doing research, reading books authored by recognized experts, and familiarizing myself with other cases gave me the tools I needed to better convey my child’s situation. Using terms and contexts common to autoimmune disease put me on the same page as the doctors, and we started speaking more of the same language.
Know Your Adversary
Battling an unpredictable opponent is tough. It’s difficult to make a game plan and stick to it. As the enemy changes, so must the plan! One of the best ways to prepare is to learn as much as possible so that you can be ready for any situation. When my husband coached youth and high school football, one of the ways he prepared his team for upcoming games was to watch film taken of the opponent. He didn’t just watch the prior week’s game; he watched all the film he could get his hands on. He observed how they handled