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 to see him standing on the sidelines.
When I picked him up at the end of the day, his muscles seemed looser and he could move with more ease. Thankfully, he was still able to play on his travel basketball team, but he had trouble running due to his sore feet. As you can imagine, we were confused and frustrated!
At last the doctor called with Noah’s test results. His blood work showed an elevated sedimentation (sed) rate and anemia; but honestly, she didn’t seem very concerned. She thought the elevated sed rate was the result of a virus and suggested the anemia may be due to poor nutrition. Neither of these explanations sat well with me because Noah had not been sick and he ate a fairly well-rounded diet. However, I took her advice and began giving him vitamins and iron supplements. It wasn’t until the results of the MRI came back that the doctor became noticeably concerned. In addition to inflammation, Noah had three unidentified nodules on the back of his knee. We were immediately referred to both an orthopedist and a pediatric oncologist.
The thought of seeing an oncologist was extremely stressful. You see, I was just getting over treatment for an early diagnosis of breast cancer, and the idea of my son going down that road was unbearable. But one step at a time … the orthopedist examined Noah’s MRI and seemed baffled. He asked a trusted colleague for a second opinion, who told him the nodules were swollen lymph nodes and suggested we see a pediatric rheumatologist. The combination of inflammation, elevated sed rate, and anemia suggested a rheumatologic condition. Finally, I felt as though we might be getting some long-awaited answers.
Before we had a chance to see the oncologist, he called to say he agreed that the nodules were swollen lymph nodes. I breathed a sigh of relief, but there was still a great deal of uncertainty as to what the rheumatologist would find. Our feelings of apprehension were alleviated somewhat by the warm greeting and comforting words of this doctor. She looked at us and said, “I’m glad you’re here, because we’re going to help Noah feel better.” At long last, words of hope.
All the pieces of the puzzle came together at that appointment. Noah’s elevated sed rate was due to active inflammation. The lymph nodes were trying to rid the body of the inflammation, which is why they were swollen. Within minutes, the rheumatologist told us Noah had juvenile enthesitis-related arthritis, which causes pain, swelling, stiffness, and loss of motion in the joints. Enthesitis refers to swelling or inflammation where the tendons or ligaments attach to the bone. We also learned this type of JA affects boys more than girls. In Noah’s case, the arthritis was present in his wrists, fingers, one elbow, both his hips, knees, ankles, feet, and even his toes. The good news, the doctor assured us, is that this disease is treatable.
I remember walking out of that office feeling like I could breathe for the first time in months. Though the diagnosis was difficult to hear, my husband and I felt confident we were finally at the right place to get Noah the help he needed. Of course, when it comes to treating JA, there are many different approaches. We started with injections of methotrexate, which is a drug used for chemotherapy. When used in small doses it has been shown to help slow down the immune system from attacking itself—which is what arthritis does. Noah did not like the idea of needles, but was willing to do whatever it took to feel better. Unfortunately, after eight weeks, it was determined this particular drug was not improving Noah’s condition.
Our second course of treatment involved steroid injections, which were very painful for Noah, but again, he was such a trooper. And it seemed to work. I remember sending the doctor a message that said, “My son is RUNNING down the hall!” It felt like a miracle—for about two weeks. When the pain and stiffness returned, we all became very discouraged. In addition, the inflammation had begun to affect Noah’s growth.
Trial and error are par for the course when
