process. JA is often difficult to diagnose and can take weeks, months, or even years to determine definitively. Unlike many other medical conditions, there is no single test and no series of lab tests that will prove or disprove the presence of juvenile arthritis. In addition, JA is a sneaky opponent—sometimes it will show itself, and sometimes it won’t. To complicate matters further, there are many different forms of JA, all with diverse manifestations. Symptoms can be obvious or subtle, reactive or always present. JA has no steadfast rules, no absolute checklists, and no giant arrow that points to your child and says, “This kid has arthritis!” Every child is unique and, therefore, so is the path from onset to diagnosis and treatment.
To determine if a child has any form of JA, his or her healthcare provider must rely on information provided from a number of resources. Lab tests can be useful—blood work can prove the existence of some issues, but often a rheumatologic condition can be present without abnormal labs. Genetic testing is also helpful, but it does not determine the presence or the absence of a condition. It merely indicates the increased or decreased likelihood that a child may develop the illness. Familial history, parental input, and observation of the child all play a role in determining whether or not a child is suffering from juvenile arthritis. Discovery usually comes from repeated physical exams, a thorough medical history, and evaluation by a pediatric rheumatologist. All the pieces of the puzzle must be collected and then assembled by a healthcare practitioner before a definitive diagnosis can be made. For some, this can happen in a matter of days. For others, like our family, it can take months or even years.
COMMON SYMPTOMS OF JA
Children with juvenile arthritis may exhibit a variety of symptoms with various degrees of severity, which can make diagnosis difficult. Though not every child will experience these warning signs, the most common symptoms of JA include:
• swollen, tender and/or warm joints
• stiffness, especially in the morning or after periods of rest
• fevers
• rashes
• fatigue
• inflammation of the eye(s)
• slow or decreased growth
• joint contractures (shortening of a muscle that causes decreased joint movement or range of motion)
• pain
Grant’s Diagnosis—A Tale of Ten Years
Clues from a Toddler
To say things were crazy would be an understatement. In the fall of 2000, when my son Grant was turning two, our family was coping with several major changes, including the birth of our second child, a cross-country move, and a new employer for my husband, Fred, who had just joined the Tennessee Titans. We were renting and looking for a “permanent” home, becoming acquainted with an unfamiliar area, making new friends, and, of course, adjusting to the latest addition to our family. It seemed as though we were always on the go and enjoying very little downtime. Changing teams also meant a heavier media schedule with lots of extra appearances for both Fred on his own and us as a couple. There was never a dull moment.
Grant had always been a “go-with-the-flow” kind of baby. As an NFL kid, he was accustomed to crazy schedules and a good deal of travel, along with strange people and places. However, the most recent changes really threw him for a loop. At least, that’s what I thought it was at the time.
My sweet, bubbly baby boy was growing up. Barely out of diapers, he had a mind of his own and would tell me exactly what was on it. A few days after coming home from the hospital with his brother, he informed me that I was Evan’s mommy now, and he “had no more mommy.” He also missed his Dad, who was around more frequently during the off-season. NFL players often work 80 plus hours a week during the football season, and Grant was just too young to understand why his father was home so much, and then just wasn’t. Fred being on a new team took time from me as well, as the new guy and his wife are usually desirable guests on the charity and fund-raising circuits as ambassadors for the team. Even though I was still a stay-at-home mom, a new baby and added commitments were dividing my attention—things had drastically changed for my little guy.
So, I was not entirely surprised when Grant started to become crabby and acting out more often. Our pediatrician was new to us since the relocation, and his response to Grant’s huge shift in attitude was “welcome to the terrible twos” and a suggestion that we give him time to adjust. Considering all the big changes we had just made, coupled with the onset of the toddler era, I thought the doc was probably right, and things would get back to normal. I was confident that his irritability would work itself out with time, love, and patience. But, it didn’t.
It felt as though I brought someone else’s child with us when we moved from St. Louis. Previously an excellent traveler, Grant would no longer tolerate his car seat, often arching his back or sobbing the entire time he was strapped in. I would grit my teeth and bear it, thinking it was just a stage. Besides, I had to do what was right and keep him safe. But it wasn’t just the car seat. I began to notice other things. He would squirm and complain about his high chair, and riding in the double stroller was a no-go. He would lie down to watch television. In fact, he would rather lie down than sit—anytime, anywhere. That’s when the first warning bell went off in my mind.
As I began to watch him closer, I noticed that sometimes he would hobble like a little old man, with his hand on his lower back, slightly stooped over. And yet at other times, he walked and played just like he always had. Although I tried to talk to him about this behavior, it’s difficult for a toddler to accurately explain what he or she is experiencing. Most of the time, Grant would simply say his back hurt or he had “owies,” but then act completely fine. While my concern blossomed, the pain didn’t seem consistent enough to be “real,” except when he was doing something he didn’t want to do (like being confined in the stroller, car seat, or high chair). I vacillated among thinking it was a ploy for more attention, typical terrible-twos behavior, or something that was seriously wrong. It was time to approach the pediatrician again.
This time, the doctor didn’t attribute Grant’s behavioral changes to the terrible twos. He suggested that in his very normal attempts to shift attention off his baby brother and back onto himself, he might simply be imitating his father’s behavior. Well, kind of. While my husband obviously didn’t cry every time he put on his seat belt, he did lie down on the couch to watch TV, exhausted at the end of the day from the physicality of his work. Every Monday (or Tuesday if there was a Monday night game) he would hobble around the house, battered and bruised from the game he had played the day before, often limping or holding his lower back.
Other possible explanations for Grant’s strange gait and discomfort included growing pains and soreness from playing or roughhousing, especially after playdates with other rowdy teammates’ kids. Intellectually, I wanted to believe these innocent explanations. It made sense—toddlers do imitate their parents. He did play hard. He was growing. And, since Evan was only a few months old, he did take up much of my time. Grant had been through a lot of big changes, and it would be normal for him to try to get my attention any way he could. It was all very logical but, in my heart, I think I knew it was more.
How Could This Happen?
When the off-season rolled around and Fred wasn’t doing the “grandpa shuffle” around the house every week, Grant’s behavior didn’t change. My husband and I were in the middle of launching a new foundation in Middle Tennessee to help at-risk mothers and newborns when I offhandedly mentioned Grant’s behavior to a colleague.
