become our pro bono medical director. Her response shocked me. While she remained calm and quiet, her demeanor indicated this was serious. She felt our son should be evaluated at Vanderbilt Children’s Hospital very soon, because the type of changes and symptoms I described were not acceptable or common for a two year old, even under the circumstances.
The next few weeks were a blur. I was numb, terrified that I could have overlooked something that could potentially affect my child’s ability to survive. I hated myself when they told me he needed an MRI of his spine to rule out a tumor and blood work to make sure it wasn’t cancer. How could this happen? How did I allow it? How long did I let it go while it was taking hold of my baby?
As they say, hindsight is 20/20. At the time, I thought I did all the right things. I took him to the doctor and justified the explanations. They were all very plausible. No one wants to believe their child is “the one.” When you have a healthy baby, with no other problems, you never think the bad stuff you read about can happen to you, but it can.
As I was battling my guilt over not knowing sooner, and not taking action when I heard that first nagging voice in the back of my head, we got some good news. The lab tests ruled out cancer, and the MRI showed no abnormal mass or tumor. They did notice a few abnormalities in Grant’s spine, but recommended we see an orthopedist, who then referred us to a rheumatologist. We learned that some of Grant’s vertebrae were compressed, and his muscles were thickened and shortened on either side of his spine. The labs they did for rheumatologic conditions were normal, but his MRI findings, physical exam, and symptoms still worried the rheumatologist.
We were referred to a physical therapist, and Grant was started on a regimen of nonsteroidal anti-inflammatory drugs (NSAIDs). We held this course for almost a year. When all of his symptoms vanished, the rheumatologist told us to keep an eye on him, and if his symptoms came back we should be seen again. She didn’t feel he had a true case of autoimmune disease; so monitoring him at home was the best option. There was a good chance that, with his normal lab work and “new” alignment, all the original problems were mechanical in nature and may not ever bother him again. We were released from the practice, happy and confident that Grant’s issues were behind us.
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
