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 but, again, found nothing. The doctor did say that he was surprised our son was a pitcher because his shoulder was so stiff. He recommended ibuprofen and rest. To loosen things up, the doctor showed Noah some exercises and stretches, which he performed daily. Noah loved baseball (and still does), so he was willing to do whatever was necessary to feel better. We even tried custom shoe inserts thinking it would help. But things did not improve.
In September, just two weeks after Noah started the sixth grade, we awoke to a scream in the middle of the night. When we raced into his room, our son said his back and hip were in such terrible pain that he couldn’t move. I remember running my hands down his back and finding the area above his tailbone warm and swollen. And that’s when I knew something was seriously wrong.
In the morning, we took Noah to a pediatric orthopedist in another city about an hour away. This time, when the doctor performed lab work he said the results were “alarming” and ordered an MRI to be done the same day. The results of the MRI were “nonspecific,” meaning they saw something in his pelvis but they weren’t sure what it was. We were referred to pediatric hematology at the children’s hospital, where Noah was seen by an oncologist. Just the mention of cancer made this the scariest day of our lives. However, after more lab work and a thorough examination, the oncologist assured us she didn’t think it was a malignancy.
We were then referred to pediatric rheumatology and had an appointment within days. Another MRI was ordered, this time with contrast, which revealed inflammation in Noah’s pelvis; a rather rare finding for a child of twelve. More specifically, our son was diagnosed with HLA-B27 juvenile spondyloarthropathy associated ankylosing spondylitis, a type of juvenile arthritis. We finally had a diagnosis, and although we were relieved there were no malignancies, we faced a different set of worries.
As a mother and a registered nurse, I experienced a lot of guilt after Noah’s diagnosis. I felt I should have known; I should have understood how much he was hurting and kept taking him to the doctor. However, because his pain and stiffness seemed to come and go, growing pains seemed like a logical explanation. What I’ve since learned about this disease is that it goes in and out of remission. Stress can trigger a “flare up” and sometimes it just happens. When these flares occur, our pediatric rheumatologist only has a handful of “tricks she can pull out of her black bag,” because, unfortunately, there are not a lot of treatment options available. There is also currently no cure.
It’s been five years since Noah was diagnosed, and I’m happy to say he’s doing great. His inflammation is controlled with medication, and he has a great attitude. He is currently attending early college/high school and hopes to study for a career in the healthcare field where he can help children with inflammatory arthritis.
While the exact cause of JA is unknown, scientists believe genetics play a role. The genetic marker HLA-B27 is often found in those with juvenile spondyloarthropathy. Our youngest son, who is nine years old, has tested positive for this marker and is currently being evaluated by Noah’s pediatric
