Out of Sight, Out of Mind
We had almost seven years of smooth sailing. Well, seven years on the rheumatology front, that is. We had many years of normal childhood with all the regular ups and downs one would expect. Grant was thriving. He was doing well in school, playing team sports, and generally happy. At nine, he was a fairly big kid for his age, which came as no surprise with an offensive lineman for a dad! In general, things had been going very well. We hadn’t given a second thought to his possible diagnosis, but then slowly things began to change.
In the fourth grade, Grant started to complain of ankle pain. He was shooting up like a weed, so we assumed it was just growing pains. However, the stiffness and pain were getting worse, affecting his ability to walk to school in the mornings, especially if he had played sports the day before. Since Grant was never really a complainer, I took his concerns seriously, but didn’t want to overreact. I addressed the issue with his new pediatrician (we had since moved to the Chicago area) and took the steps they suggested to alleviate his pain.
By the time he started fifth grade, his ankles weren’t any better despite visits to the doctor, podiatrist, and orthopedist. The general consensus was that the problem was mechanical in nature, but I had my doubts. Custom orthotics weren’t making a difference, and he was starting to have back pain as well. I also noticed that Grant wasn’t doing as well in school, and the boys he previously towered over were catching up or overtaking him in height. Since he was prepubescent, I didn’t think too much about the sluggish growth at the time. He was so close to puberty, and slow growth before the big spurt is pretty common. Besides, everyone matures at a different rate in the tween years. Yet, given his history and the fact that other treatments were not making positive changes, our pediatrician agreed it was time to see a rheumatologist again, just in case.
Seeing a pediatric rheumatologist is not easy. We were stunned to find that the wait to be seen, even with a referral, can be months due to a shortage of practitioners in the field. Grant did get lucky and was able to see a pediatric rheumatologist on a cancellation, about two months after our initial inquiry, just as he was starting the sixth grade. We secured the earlier visit with the help of our pediatrician, who was insistent on his being seen. In many practices, the wait for a new patient can often be in excess of six to nine months!
Living in Chicago, we were lucky to have an excellent team of rheumatologists in our own backyard. Grant had more testing done, and his rheumatology labs were still in the normal ranges. Because he was an athlete playing multiple sports, we couldn’t rule out mechanical issues, stress injuries, or just plain growing pains. However, given his history, rheumatology did want to follow him and help us manage the pain. Grant started on another course of NSAIDs, physical therapy, and rest from sports.
Arthritis is a disabling and painful disease that affects 50 million Americans, including 300,000 children. Nearly 1 in 250 children are living with a form of arthritis. Currently, there are less than 250 board-certified practicing pediatric rheumatologists in the United States and about 90 percent of those are clustered in and around large cities. As illustrated on the map, there are currently 11 states (dotted) that do not have a single board-certified practicing pediatric rheumatologist, 19 states (lines) with three or less, and the remaining states have 4 or more. Source information from the Arthritis Foundation.
From Bad to Worse
Despite our combined efforts to alleviate his suffering with the mildest drugs and therapy, things just continued to get worse. As the weather got colder, the pain escalated. His back hurt so badly that he would wake up in the middle of the night in excruciating pain, unable to get out of bed unassisted. Since my husband was a pro athlete, frequently dealing with chronic pain/injuries, we had the ability to give alternating hot tub/ice bath soaks in our own home. It was helpful, but definitely no fun. By the time the holidays rolled around, Grant was rarely sleeping more than an hour or two at a time, and he was begging for ice baths in the middle of the night, just to take the edge off the pain. I knew this was more than mechanics or sports. Seeing your child in that much pain regularly is almost beyond the scope of what any parent can take. We needed to find out what was going on and fast.
As Grant worked his way up to unbearable pain levels, rheumatology had changed his medications several times, in the hopes that a different drug would be more effective. Most of these medications take a few days or weeks to kick in, so we would hold our breath, watch, wait, and hope for any relief. It didn’t come. After a round of the flu made its way through our house, things seemed to accelerate in the wrong direction. Even though the virus was gone, Grant never felt that much better. He was in even worse pain than before, his back would stay red and hot, and he was running low-grade fevers of “nonspecific origin.”
I was advised to take him to the emergency room (ER) at the children’s hospital when I thought he was at the height of his pain, in the hopes that labs taken during an episode would give the doctors better insight into the root of his condition. The ER doctors observed all the same things I did at home—swollen and red ankles, extreme sensitivity and excess warmth near his spine, but no abnormal lab results. He was a mystery.
To tell you the truth, at this point I didn’t even care about a diagnosis. The only thing that mattered was finding a way to relieve Grant’s pain. Watching your child suffer, with no end in sight and no treatments that seem to work, is something I wouldn’t wish on my worst enemy. The days dragged on like years. We were sleep deprived and emotionally spent, completely wrapped up in Grant; finding him relief and finding a way for him to get better. I think these may have been our darkest days.
The Problem Revealed
At this point, the possibility of juvenile arthritis, specifically spondyloarthropathy and juvenile idiopathic arthritis (JIA), was mentioned, but my focus was less on a diagnosis than getting the pain under control. I wanted some semblance of a normal, comfortable life back for our son. We tried stronger drugs with more side effects and risks then waited for them to take effect. As mentioned, many arthritis drugs take days or weeks to work at their optimal levels, which means treatment can be frustratingly slow. I was grateful, at least, that we were dealing with all this during winter break, so that missing school and the stress of catching up were not issues.
Miraculously, we found a drug that worked. Slowly but surely, Grant felt a little better with each passing day. By the time six weeks had passed (the amount of time we were told it would take for the drug to be full strength in his system), his pain had almost vanished. We were thrilled. And, for the first time, his rheumatologist believed we were in fact dealing with a form of juvenile arthritis or childhood autoimmune disease. Although his labs had always been normal, his symptoms and the length of time he endured them, along with his response to treatment, all pointed in that direction. We had also ruled out all the common reasons for his problem.
At long last, ten years after the initial onset of symptoms, we had a diagnosis. It was a relief to finally know what was wrong, but we soon learned that having a diagnosis is only the beginning. We had one answer, but a lot more questions.
My Kid Has JA, Now What?
The Big Umbrella
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