Living with Juvenile Arthritis. Kimberly Poston Miller
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 it comes to treatment, so we tried a new path. Noah was given an anti-inflammatory along with a biologic drug. It involves a weekly injection, and because it suppresses the immune system, he has a greater chance of developing infection. Another side effect is the increased potential to develop cancer. While the side effects are scary, we decided that getting our active, happy boy back was worth the potential risks. Two weeks after he began the injections, Noah was waking up without stiffness and able to play basketball again. After six weeks, his sed rate had dropped and he actually grew two inches!
In July 2012, the doctor put him into official remission status, which meant he no longer had signs of active disease. If we can go two years without any symptoms (flares), she would start scaling back the medication. She also referred Noah to a physical therapist to work on his range of motion, strength, and balance. In September 2012, Noah ran his first 5K Mud Run.
At the height of his pain, Noah would sometimes wake up and tell me he had dreamed of running. I assured him that he would be able to run again one day, but I had no idea when. To see him active again is truly a blessing. There are times when Noah forgets he has JA, and other times when pain and stiffness are reminders. We have to be very diligent about good hygiene and preventing illness due to his suppressed immune system. But for now, we remain hopeful and confident that we have the right doctor to keep us on track.
Freeing Zoe by Natalie
Confronting my child’s illness, one that is confusing and forever changing, in a language that is not my own, has been the most difficult experience in my life. Our daughter Zoe has always been a bit fragile. She suffered continuously with sinus infections since birth. Moreover, she wasn’t growing at a “normal” rate. Since all my children were small, I really didn’t worry too much when the doctor told me he wasn’t happy with her weight gain. I breastfed her and thought maybe the weight charts were based on bottle-fed babies. However, she was classified as “failure to thrive,” and I was instructed to introduce certain formulas to her diet, which I did, without much improvement.
After Zoe received her one-year vaccinations, she became very sick. Her temperature soared, and she was lethargic and had diarrhea for four days. We put it down to a reaction to the vaccine and didn’t think any more about it.
We were living in France, and the following month we were heading off to Australia to visit family. At 14 months old, Zoe had finally started walking. But, within a week, she suddenly stopped. To be honest, I thought perhaps she was just being lazy. However, three weeks later, as we arrived back home, Zoe was no longer standing up or even crawling. If she wanted to move around, she would slide on her backside or stomach. She had also begun to spike fevers in the afternoon, which would subside after a few hours. Most concerning was her inability to sleep: She would wake up crying six or seven times each night. Once I changed her position, she would fall back asleep.
By the end of August things had gone from bad to worse. Zoe was crying continuously, hardly eating or sleeping, and was extremely fatigued. She would bend up her legs and scream whenever we changed her. Unfortunately, our pediatrician had recently retired, so I took her to see my husband’s doctor. He listened to my complaints, weighed her, listened to her chest, and said “She looks fine. If she isn’t walking in a month come back and see me.” I walked out of there thinking he didn’t take me seriously.
Three days later, my husband had his day off and as Zoe lay there, immobile, I pointed to her and said, “Look at her; she isn’t moving because she can’t, not because she doesn’t want to!” Filled with concern and frustration, I asked my husband to come back to the doctor with us. This time the doctor seemed to take us seriously. He gave us a referral for an X-ray and an ultrasound for her hips, both of which revealed nothing. The doctor assured us Zoe was fine.
A few days later we ran into Zoe’s old pediatrician at the market and spoke to her about what had been happening. Her reaction was much different. She told us to leave the shopping and pack a bag because we needed to go to the hospital now.
Six weeks after the initial doctor’s visit, Zoe was finally admitted to the hospital. By this time, she was unable to physically move by herself. I refer to this time as Zoe’s “stuck period.” In addition to being very sick, she seemed to be trapped inside her own body, and all I wanted to do was set her free.
After numerous tests, the head of pediatrics told us he thought Zoe had a form of juvenile arthritis, but in order to confirm the diagnosis she would need to go to a hospital for rare diseases for children in Paris. In the meantime, they prescribed ibuprofen four times a day. It took another