Living with Juvenile Arthritis. Kimberly Poston Miller
Juvenile arthritis is different in every child. By observing how other kids act and react to JA, it can give you snippets of the opponent your child will face in his or her battle. Reading about their lives and their struggles is like watching game film for your child. It may not be your particular game, but it shows you what that opponent is capable of and how to prepare against it.
Meet Some of the Other Players
The following are actual accounts shared by families living with different types of JA. Their stories illustrate how diverse the paths to diagnosis and treatment can be, as well as the unpredictable nature of this disease. However, while their stories are different, there is a common thread—hope.
Connor’s Journey with JDM by Anke
In 2005, my husband and I were thrilled to become parents by adopting one-year-old identical twin boys from Russia. The adoption of our boys was such a gift, and they have brought us immeasurable joy, despite the medical challenges we’ve faced. Because our sons were adopted from a foreign country, we did not receive any medical history on the boys or their parents. As we soon learned, this lack of information can make diagnosing health problems more difficult.
Shortly after we arrived home with our sons, the “younger” twin, Alexander, was diagnosed with a tethered spinal cord, which required corrective surgery when he was just 18 months old. He had a dimple on his back that led to this diagnosis, but his brother, Connor, had no outward signs of the condition. However, a few months later, as I was watching a documentary on syndromes that can develop during pregnancy, a warning bell went off in my head.
Since our boys were identical twins, I took Connor in for an assessment. Sure enough, an MRI revealed he also had a tethered spinal cord. Like his brother, he underwent surgery shortly after he turned two. Though the surgeries were stressful, we thought the worst was behind us.
In 2009, as we were preparing for our yearly trip to Germany (where I was born and raised), warnings about the swine flu filled the news. We were told it was even more widespread in Europe and, as a precaution, the boys should receive the H1N1 flu shot. They were vaccinated about three days before our flight, and while we were in the airport Connor started complaining about pain in his legs. We brushed it off as growing pains or the normal aches of a very active five-year-old.
However, during our stay in Germany the pain got progressively worse. I was so concerned that I changed our travel plans to come home early. During the return trip, Connor’s legs were so sore that I had to carry him most of the time. Our first stop upon arrival home was the doctor’s office.
The first diagnosis we received was mononucleosis. We were told to take him home and give him Motrin for the discomfort. But, Connor did not get better. In fact, his condition worsened, and that’s when the “Mommy Bear” instinct kicked in. I took him back to the doctor three more times, until finally a physician’s assistant put me in touch with a neurologist.
Initially, we were worried about a reattachment of the spinal cord, but the MRI came back clear. The next step was a spinal tap to rule out Guillain-Barré syndrome, which can occur after receiving a vaccination. When this test came back negative, Connor had a muscle biopsy done, which confirmed that his muscles were inflamed and he was put on a steroid. We had to wait weeks for the complete results, but in January 2011, we were told that our son had juvenile dermatomyositis (JDM), a rare form of juvenile arthritis. More specifically, JDM is a systemic autoimmune disease that causes inflamed and weakened muscles, among other things.
We had a diagnosis, but we did not have the answers we needed to make Connor better. The steroids didn’t make a dent in his condition, and Connor declined at a rapid pace. Taking matters into my own hands, I began to research this disease. My husband and I agreed that we would take Connor anywhere in the world to find the help he needed.
I have to admit, the more I learned about JDM, the more fearful I became. But, then I found a ray of hope: the leading doctor for JDM, Dr. Lauren Pachman, was not a world away but working at The Children’s Memorial Hospital in Chicago. I e-mailed her immediately. By this time, Connor was unable to move. He could not walk or lift his arms to feed himself. He would choke when given food and cried when he was touched due to his inflamed muscles. So, you can imagine how relieved I was to get a response to my e-mail within fifteen minutes!
Dr. Pachman told us that Connor must be admitted to a hospital as soon as possible. We packed in haste and flew to Chicago that same afternoon. Little did we know we wouldn’t see our home again for almost eight weeks.
After Connor’s long hospital stay, his condition improved. He still needs regular physical therapy and lots of medications to keep him stable, but he’s doing much better.
While I’m comforted by the fact that we did everything in our power to save Connor’s life and get him the treatment he needs, I feel guilty that so much of my focus went toward Connor and not equally on Alexander. I can recall many times when Alexander felt left out as cards and gifts arrived for his brother, while he spent long hours in waiting rooms.
Looking back, I realize that the more Connor was unable to move, the more Alexander moved! A huge part of why Connor fought back so hard against JDM was the fact that his brother motivated him. Like most twins, the boys are very close and share similar traits. As a result, we were invited to be part of a Twin Research Study at the National Institutes of Health in Washington, DC. We are very interested to learn about the possible genetic links regarding JDM, as well as the role of environmental factors. Of course, if JDM is genetic, we worry about what (if anything) may trigger JDM in Alexander.
For now, we are just dreaming of remission or, better yet, a cure! Our boys are now almost nine years old and have found art and painting a great way to express their thoughts and emotions. While it makes me sad to think of the many challenges they have both faced in their young lives, I am also proud of and inspired by their strength.
Dreaming of Running by Lori
Our son, Noah, was a typical nine-year-old boy who loved playing sports of all kinds. Even as a toddler, he showed extraordinary balance and seemed to excel at every activity he attempted. Among his talents was a natural ability to shoot a basketball, and, eventually, he chose that as his main sport. Noah loved playing basketball and people loved to watch him play.
One day, as I watched my son on the basketball court, I noticed he was running “funny” and seemed to be moving slower than usual. After the game, Noah mentioned that his hip was bothering him, which would account for his awkward gait. I chalked it up to him being very active, along with growing pains. However, as the weeks went by, his pain did not subside, so I took him to the pediatrician, who concurred that it was growing pains coupled with activity.
Over the next two years, Noah’s symptoms were mild and intermittent. He was still able to play sports, but not nearly with the intensity he once did. At the age of 12, he began complaining of knee and ankle pain and told me his hip was hurting more than usual. I became very concerned when I noticed his knee and ankle were swollen, but again, the pediatrician told us she thought it was due to Noah’s rigorous sporting activity and diagnosed a ligament injury. The doctor wrapped his swollen ankle, gave him crutches, and told Noah to stay off it for a while.
Initially, this seemed to work: The swelling went down and the pain improved. I thought he was getting better. Then one evening Noah returned home from a bike ride and could hardly walk. I remember watching him struggle to take each step. He looked at me and said, “Mom, there is something seriously wrong with me. I can’t even walk and I’m hurting all over.” When I looked down, I could see that both his feet were swollen. That’s when I felt the first twinges of panic.
This time I was unwilling to accept the diagnosis of a sports injury, and I pushed the doctor for further testing, which included blood work and an MRI of his knee. Meanwhile, Noah had begun to dread mornings. He was waking up so stiff that he could barely move. He had to rub his hips, knees, ankles, and feet with Mentholatum cream just to get going. I remember dropping him off at school and watching him walk gingerly into the building. His gym class was first on the schedule, and he could not participate in any activities. It was heartbreaking