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 six weeks to receive the final diagnosis—systemic onset juvenile idiopathic arthritis. We learned that her ankles, knees, hips, wrists, elbows, shoulders, lower back, and neck were involved. We also learned that she had inflammation in her liver, lungs, and spleen, which was also affecting her blood.
Trying to sort through what I was being told, translate it into my own words in English, and then understand it was overwhelming. At that point, I just wanted to get on the next plane and take my baby home, where I could make sense of the situation and perhaps feel more in control. After all, knowledge is power … or so I thought. The reality is this disease is so complex that even if I was being told in English, French, or Chinese, I would still not fully comprehended the implications. How could my baby be given a life-changing diagnosis? How can any parent comprehend the fact that their child will experience chronic pain every day for quite possibly the rest of her life?
Since there is no cure, our focus turned to treatment and pain management. We learned to give our daughter a daily injection, which was as painful as a wasp’s sting. Zoe was just 17 months old when we started that treatment—and only 19 months old when the treatment failed.
The next course of treatment involved admission to the hospital for a biweekly infusion. Additionally, for the next two years, Zoe had five days of physiotherapy and hydrotherapy each week. She is now down to two days a week. However, thanks to this treatment, she is now walking, running, and jumping like other three-year-olds.
Of course, it’s not always smooth sailing. Zoe is often sick due to her immune system being suppressed (a side effect of the treatment), and recently we have found that her medication is not working as well as it should be. I have learned to take one day at a time and be grateful she can now move around with less pain. Her spirit shines bright and we remain hopeful.
From Head to Toe (Cameron’s Story) by Angela
It was August 2009, and our son, Cameron, had just started the third grade. Since it’s not uncommon for kids this age to “share” a variety of illnesses, I wasn’t particularly worried when I noticed a red, itchy spot on his scalp. The pediatrician took one look at it and diagnosed ringworm. We went home with some nasty-smelling medication, which we finished without improvement. So, we returned to the doctor’s office for another prescription, and we were told to be patient.
A few days later, I noticed that Cameron was walking funny. He was not putting his right heel on the ground when he took a step. As I watched more closely, I saw that he couldn’t straighten his right knee. It was swollen and he told me it hurt. Back to the pediatrician we went. This time, we were advised to try an over-the-counter NSAID.
As the weeks went by, the pain and swelling in Cameron’s knee did not improve. Because I didn’t want to wait to see our regular doctor, we took an appointment with a different pediatrician within the practice. After listening to our story and examining Cameron, she immediately suggested that we see a pediatric rheumatologist. I remember being surprised by that suggestion—what did she think it was? The doctor went on to explain that it could be a type of reactive arthritis (Cameron had strep throat just before school started), but she wanted to have him checked out. (Later, I found out this doctor also has psoriatic arthritis.)
When I called the department of rheumatology at our local children’s hospital, I was speechless … they couldn’t
