Living with Juvenile Arthritis. Kimberly Poston Miller
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 fit our son in until February or March, which was five months away! Because his knee was so swollen and painful, I told them I really didn’t want to wait that long. Thankfully, they called another children’s hospital about 90 miles away and got us an appointment two weeks later.
In the meantime, I remembered an online friend who has a child with arthritis. Even though we didn’t have a diagnosis, I was anxious for more information. It was such a blessing to have someone to talk to who understood what our family was going through. Her child has psoriatic arthritis, and she was and still is very supportive!
At our first visit with the rheumatologist, Cameron was checked over thoroughly. It was brought to my attention that the ringworm we were treating was more than likely not ringworm, but psoriasis. She also noticed Cameron’s nails. When he was about two years old, I had asked his pediatrician why his nails had so many pits in them and was told not to worry. As it turns out, he had the classic nail pitting found with psoriatic arthritis. Combined with the spot on his scalp, this led to a diagnosis of juvenile idiopathic arthritis (JIA)—psoriatic subtype. Psoriatic JIA is a disease of the immune system that causes raised red patches (psoriasis) on the skin, as well as pain, stiffness, and swelling of the joints. It can literally affect someone from head to toe. Left untreated, it can cause progressive joint damage. Cameron was also diagnosed with joint hypermobility syndrome, which means his joints can easily move beyond the normal range.
Our first step was to have Cameron’s knee drained and injected with a steroid. When we arrived for his injection, the doctor noticed that his left knee had also started swelling, despite the fact that he had been taking naproxen for weeks. So, while he was under general anesthesia, she treated both knees.
At our follow-up appointment a month later, both of Cameron’s knees were doing better. However, he had complained several times of some slight pain in his jaw while chewing. The doctor immediately scheduled him for an MRI, which revealed active arthritis on both sides of his jaw. We were shocked to find that he already had noticeable bone erosion! At that point, he started taking methotrexate along with a biologic drug to stop further damage to his joints.
He began his injections in late January 2010 and received his last injection in September 2012. Since then, he has been declared in remission. Cameron still has flares of psoriasis on his scalp and pain in his joints from time to time, but there is no active arthritis. While I’m thankful for his remission, I still hold my breath every time he complains of pain and each time we see the rheumatologist.
Recently, Cameron has been experiencing tachycardia (fast heart rate). When he goes from lying down to standing up, his heart rate shoots up, and he complains of a headache, dizziness, and what he calls “funky” vision. According to the rheumatologist, there is a documented link between hypermobility syndrome and postural orthostatic tachycardia syndrome (POTS). As a result, we are currently awaiting an evaluation with cardiology.
I find myself thinking about Cameron’s future often. He will always need to be monitored for his arthritis and his psoriasis. I worry about whether his children will inherit this disease. I wonder if he will be able to do all the things he wants to do. Will his psoriasis get worse and affect other areas of his body? What are the long-term effects of the medications he has taken? These are just a few of the questions that swirl through my mind. But, thinking about these unknowns can make a person crazy, so I remind myself to take a step back and appreciate where he is today. Cameron is currently living without active arthritis. He is happy and doing well in school. And I have learned to live one day at a time.
Noah’s Story by Caroline
When the oldest of our three boys was ten years old, he was a very active and talented baseball player. Noah had been playing baseball since he was four years old and had been selected to Little League All-Stars every season, as well as a travel team. He could play any position and, according to his coach, had the “best glove on the field.” He was also the fastest runner, which is why it became concerning during his second season when he started complaining of being stiff in the mornings, having trouble running, and experiencing pain in his gluteal muscles (three muscles that comprise the buttocks).
Sometimes Noah would also complain that his lower back hurt, but mostly it was a vague pain and stiffness in his right gluteal. When he was catching for his team, we noticed he couldn’t hop up from a squatting position and he looked very stiff. Mornings were the hardest.
We took him to his pediatrician who referred us to an orthopedist. They took X-rays of his pelvis and didn’t see anything. Based on these results, as well as his examination, the doctor felt it was simply growing pains. This seemed plausible since, over the next year, Noah would have good days and bad days. Sometimes he felt great, hitting and pitching well, with no pain or stiffness. Other days he would say his shoulder hurt, he felt pain when he swung the bat, and his hip ached when he pitched.
Still concerned, we took him to a sports medicine doctor who X-rayed his shoulder