Living with Juvenile Arthritis. Kimberly Poston Miller
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 him finally get some relief. We had changed pediatricians, as recommended by his pediatric rheumatologist, to another great doctor with a little more autoimmune experience. We had exhausted the possibility of other issues causing his pain and inflammation, so we were moving forward from a rheumatology perspective. Our approach was now more focused and deliberate.
We thought everything was progressing in the right direction, albeit slowly, and had no idea what lay ahead. The chain of events triggered by Grant’s reaction to the latest medication changed everything, not just for Grant, but for our entire family. The hospital visit was the catalyst to it all.
Grant had started complaining of nausea, which can be expected with many rheumatology medications. Even though his pain was exponentially better, he started to resist the idea of taking his medication because it made him feel so awful. After a few weeks, we noticed he was developing a strange rash, which resembled sandpaper, on his torso. Things just deteriorated from there. In a matter of days, he was unable to keep down food or liquids, and the sandpaper rash was evolving into bigger, very red bumps. After consulting with the doctor, we decided to withhold his medications, just in case he was having a strange side effect. Honestly, we didn’t think the medication was the culprit since he had been on it without issues for over a month, but we were coming up on a weekend and thought it would be better safe than sorry.
Have you ever noticed that kids seem to get their sickest at the worst possible times? Usually on the weekend or the middle of the night, when the doctors aren’t available? Well, that’s exactly what happened. It was Super Bowl Sunday—a big deal in our house, since not only are my guys avid sports fans, but we also typically know someone who is playing in the game every year! The first huge warning sign that something was very wrong was that Grant was too sick to watch the game, fading in and out of sleep. This was so out of character for him. He had also vomited multiple times, and his lips were starting to become parched and cracked. No matter what I tried to give him—hot drinks, cold beverages, or even ice chips—I couldn’t get him to keep any fluids down. As the day wore on, he started running a fever and became more lethargic. I was getting very concerned, but short of the going to the ER, what could I do on a Sunday? I thought if we could just hold out until the morning, we would squeeze into the doctor’s office again.
Then came the straw that broke the camel’s back: Grant wanted to go to the restroom, but was unable to get there on his own, or urinate when he got there. He was too weak and dehydrated. When I looked at his torso, I saw that the rash was spreading and there was no “white” to be seen. In a matter of just a few hours, he went from appearing “rashy” to looking like he had been scrubbed with a cheese grater. Because his condition had gone downhill at such an alarming rate, I knew I didn’t have another night to spare. So, I grabbed a couple of things and we headed to the emergency room at the children’s hospital.