JA, or get him diagnosed faster if he did. The best I could do was to keep an eye on him, let the doctors observe him more frequently, and have him treated if unexplained symptoms popped up.
When Evan was 11½, just about the same age as Grant when he was diagnosed, I started to notice that he was complaining more about joint pain. Truthfully, learning those odds, being armed with the doctors’ assurances, and knowing that his pediatrician was monitoring him made me think there was probably nothing to worry about. His lab work had been fine, his physical exams unremarkable, and his personality, well, that was a factor, too.
Like Night and Day
I love both my children dearly. I often joke that in my life, if Grant is the sugar, Evan is the spice. He is witty, humorous, and definitely a fun guy to be around. Part of what makes him so entertaining is his ability to put himself 110 percent into whatever he is doing or feeling, and along with those characteristics comes a flair for the dramatic. Even as a baby, Evan was the loudest belly-laugher and the biggest wailer—a stubbed toe was nearly equivalent to the end of the world. Most of the time I would get a pretty accurate picture if I took what Evan described and then reduced it by half. That’s just Evan. So, you can see why I might take some of his aches and pains with a grain of salt.
The same way I convinced myself that the two-year-old Grant was jealous over his new brother, I convinced myself that Evan just needed some special attention after all my energies had been focused on Grant. He had been seeing the doctor regularly, so I felt all my bases were covered.
Then one night, while I was giving Grant one of his regular injections, Evan came into the room, angry, complaining that he hurt, too. He told me, “Grant isn’t the only one dealing with pain every day.” He was upset and said he knew I didn’t care. He had visited the doctor a few days before with his mystery pains, but we had found nothing. Evan and I had talks from time to time about the difference between JIA pains and everyday annoyances caused by overexertion on the playground or the ball field. While I finished up with Grant, I was getting ready to have “the talk” with Evan again. But, as he turned to walk out of the room, I saw it: Both of his elbows were red and swollen.
I asked him to hold on and tell me more about the pain. Since he was in between sports, did he do something out of the ordinary in gym class? Was something new hurting him? He told me his shoulder and elbows were the problem this time, and that I never wanted to listen. He hadn’t “done” anything, but everything still hurt. I felt his elbows and got that sinking feeling in the pit of my stomach. They were swollen with fluid and had that familiar warm feeling of a JA afflicted joint.
It took three visits before Evan’s elbows were red and swollen at the same time he was at the doctor. Remember how I said JA is sneaky? Sometimes it shows itself and sometimes it doesn’t? Well, in this instance, we outsmarted JA. I took pictures of his joints when they were at their worst and kept track of the cycles for the doctors. By April 2012, just a few months after he experienced his first symptoms, Evan was diagnosed with JIA.
At first, I was just sick. I thought I knew what we were in for. We had just been on a wild and crazy ride with Grant’s problems, and I was bracing myself for the worst. I had no idea how I would handle two children with JIA. Emotionally, how could I bear watching both of them go through it? I felt sorry for myself for a little while, and even sorrier for my sons. Then do you know what I did? I picked myself up and moved on. Worry didn’t make a difference before, and I knew it wouldn’t make a difference the second time around. But a funny thing happened as I prepared for the worst—nothing ever really happened. Evan’s case could not have been more different than Grant’s.
Research indicates that with siblings who have JIA, the onset is usually around the same age and of the same subtype. Well, that certainly held true for us: The ages and subtypes were spot-on, but the symptoms and severity were far different. Grant had chronic inflammation and pain, needing a number of daily medications just to control his symptoms. With Evan, every couple of months we might see some swelling, redness, warmth, or increased pain in a joint, at which time we administer medication. In his case, only mild doses of NSAIDs are necessary to head off a flare and then can be discontinued in a few days. Unlike Grant, we also found Evan to be neutropenic (more susceptible to infections), but although it takes him longer to get over a cold or other virus, it doesn’t really change his everyday life. JA has not affected his school work, his sleep, or his ability to participate in activities. In fact, other than it just being “out there” for us to think about and treat briefly every now and again, the JA is almost a non-factor in Evan’s life. Almost, because we still have a healthy respect for what it can do and we know the enemy is close. Still, it’s hard to believe it’s even the same disease!
Developing Your Own Strategies
The sooner you understand how unique your child’s case of JA is, the better you will be able to focus on his or her specific issues and facilitate the best possible care and treatments. I want you to skip over the stage where you try to have everything make sense in someone else’s frame of reference. I don’t want you to buy into the “cousin so-and so’s kid had a friend who had JA and they did xyz so that’s what little Johnny needs, too,” or the “I knew someone at work whose kid nearly died from that disease,” or the well-meaning neighbor who says “little Jane a few blocks over is supposed to have that, but it’s not real in kids, she just fakes it.” Don’t let yourself go there because none of these scenarios will be completely accurate. JA simply doesn’t work that way.
Let me use a sports analogy. In 1972, Don Shula led the Miami Dolphins to the only perfect season in football history. In 2007, the Miami Dolphins only won one game. What happened? It was still the Dolphins. They still had players and coaches. It was still football. The reason why the 2007 team didn’t have a perfect season is because they had different players, different coaches, different weather conditions, and different opponents. JA is like the Miami Dolphins. It morphs with the players and the circumstances.
Expecting the same thing from JA for every kid is like expecting the Miami Dolphins to have a perfect season (or not-so-perfect season) every year. The 2008 Dolphins improved their season to 11-5 by making adjustments and knowing what they were up against. Every child is a whole other ball game, and when they are diagnosed, it starts a whole new season with a unique set of challenges. I’m here to help you develop your own strategies to make it the best season possible.
Just when you think you have things figured out, life tends to throw you a curve ball. Juvenile idiopathic arthritis (JIA) has been a game changer for our family. Much the same way many of us define our lives by milestones such as before or after college, marriage, or kids, we now refer to our life in two stages: before and after Grant became ill.
The turning point wasn’t the day we received a firm diagnosis, as you might expect, or the rough patches we endured when Grant was up so many nights in pain. For us, the big event that changed our lives forever, forming a concrete division between now and then, was the first inpatient hospital admission for Grant in February 2010. Evan’s diagnosis two years later was devastating in its own right, but we were already living out a “new normal,” where everything in our lives was framed within the context of JA. Evan’s diagnosis was like another game in our new season, whereas Grant’s first major hospital admission made us realize we were in a completely different league.
Chain Reaction
In the days leading up to the big event, there were many significant changes in Grant’s care. We were working hard to determine what medications could help
