Living with Juvenile Arthritis. Kimberly Poston Miller
about arthritis in children before the JA diagnosis. That’s an old person’s problem, right? When most people hear the term arthritis, they think of osteoarthritis; the kind your grandparents have; the kind you get after you’ve lived a long life and worn down your joints. The fact is arthritis in children is often misunderstood as a “pain only” syndrome—something they should be able to get over or grow out of.
However, juvenile arthritis is far bigger. It’s actually an umbrella term used to describe the many autoimmune and inflammatory conditions that can develop in children age 16 or younger. The definition of arthritis is joint (arthro) inflammation (itis), but JA can be much, much more. It can involve the eyes, skin, and gastrointestinal tract. It can be systemic, involving the internal organs, or localized in one or several joints. There are also many types of JA, including juvenile dermatomyositis, scleroderma, lupus, and juvenile spondyloarthropathies. The most common form of JA is juvenile idiopathic arthritis (JIA), historically referred to as juvenile rheumatoid arthritis (JRA). According to the Arthritis Foundation, JIA is defined as swelling in at least one or more joints, lasting at least six weeks. That’s why for most it takes at least six weeks to diagnose! JIA is further broken down into six categories: oligoarthritis, polyarthritis, systemic, enthesitis-related, psoriatic, and “other,” which includes children who exhibit features from two or more types or have symptoms in excess of six weeks that do not meet the criteria of any other form.
So what does all that mean? It means that JA is an umbrella term that covers a multitude of afflictions. It also means that your child’s JA diagnosis and treatment plan are probably going to look a lot different than my child’s. There are so many different types of juvenile arthritis with diverse symptoms and manifestations that very rarely will two cases look alike. This is probably one of the most important things I can tell you if your child has been newly diagnosed: Do not let yourself get wrapped up in someone else’s case, thinking that’s what will happen in your family!
We live in the information age, which can be both a blessing and a curse. One of the first things many of us do is perform a Google search to find out all the facts. If you search for juvenile arthritis, you will find some pretty dramatic stories. For every one of these, there are just as many cases that aren’t as serious. The things you read about JA and the other children you meet may or may not have things in common with your child.
No Two Cases Are the Same
It could be better, it could be worse, or it could cycle somewhere between the two. The more friends you make in the rheumatology clinic waiting room or the JA community, the more you will find pieces of their experiences that mirror yours. This can provide you with valuable information and support, but it’s just another piece of the puzzle. Over time, you will become the expert in your child’s symptoms, reactions, and responses. Gaining this knowledge, learning as much as you can, and conveying it to your child’s healthcare team is what will make the difference in his or her treatment, regardless of the type of JA that has been diagnosed.
Déjà Vu—Well, Not Really
A perfect illustration of how different two cases can be is the story of my two sons. Genetically, they are pretty similar. They have the same parents, they are both boys, and they were born less than two years apart, so many of their experiences and environmental exposures were the same. Just as two children raised similarly in the same family can have completely opposite personalities, the way JA has “shown” itself to each of my boys could not be more different.
Grant’s diagnosis took more than ten years to nail down. Even after that determination and treatment, things spiraled out of control and got so much worse. He had a severe allergic reaction to one of the medications (ironically, the only one that was working on his rheumatologic issues) that nearly cost him his life. He developed DRESS syndrome (a type of severe drug reaction), non-viral hepatitis, eosinophilia, and a whole host of other serious issues. He spent time as an inpatient in the hospital and subsequently missed nearly four months of school. In this weakened state, JA took an even greater hold on him, and it felt as though we would never get him back to “normal.”
Calculating the Odds
Over the next two years, as I watched him struggle to get back to the life he used to have, I had a new respect for what JA could do and the kind of opponent with which we were dealing. I was also very worried it could happen to my younger son, as well. Even though it is fairly uncommon for siblings to develop JIA (Grant’s diagnosis), it was still a concern. Every little ache or pain Evan mentioned seemed like a red flag, and every time he walked off the playing field looking stiff or sore, I wondered if I was overlooking something, just like I had with Grant. I never knew if I was worrying too much, or just making sure I didn’t make the same mistakes twice.
Many studies have been done on the subject, and the generally accepted consensus, as reported by the Arthritis Foundation, is that 1 out of every 1,000 children under the age of 16 has JIA. In families where one child has already been diagnosed, the risk of siblings developing JIA could be up to 12 times higher than in the general population and up to six times higher for first cousins. Dr. Sampath Prahalad, a medical doctor and associate professor of Pediatrics and Human Genetics at Emory University, conducted one of these studies and states, “With a population prevalence of JIA at one in 1,000, a 12-time greater risk may sound like a lot but it’s only equal to 1.2 percent.” That would mean that even a full sibling of a JIA child has a 98.8 percent chance of not developing the disease. Knowing these statistics made me feel that watching Evan so closely for signs of JIA was akin to waiting for lightning to strike him while he held a metal bat at baseball practice … it could happen, but probably not.
Grant required so much of my attention and energy at the time that I felt worry was a wasted emotion. Worrying wouldn’t fix anything, it wouldn’t guarantee that Evan didn’t have 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