Imagine you are a seven-year-old child, full of energy, happiness and with a lust for life. Playing outside with friends is your favourite pastime, whether that includes a game of baseball, tag or hide-and-go-seek. Now imagine that all of the joints in your body are inflamed, sore and extremely difficult to move. Some days, getting out of bed is nearly impossible.
This isn’t hard to imagine for seven-year-old Emily-Marie Tonner from London and nine-year-old Marie-Eve Galipeau from Ottawa, as this is their reality. Although childhood arthritis is still a mystery to some, it affects an estimated one in 1,000 children in Ontario, making it one of the most common chronic disorders of childhood.
It was clear to Emily-Marie’s mother, Jennifer Tonner, that she was experiencing pain as early as her first birthday. Emily-Marie would scream when she had her diaper changed or when held a certain way. At 14-months-old, she was taken to the hospital for tests.
“It took eight visits to the emergency room for staff to keep her for an extended period of time for testing,” says Tonner. “Doctors thought that it was just growing pains, but I knew it was something more,” she explains.
Tests revealed that Emily-Marie’s lymph nodes were inflamed and that it could possibly be arthritis. She was immediately referred to a pediatric rheumatologist in Hamilton who diagnosed her with juvenile idiopathic arthritis upon their visit. Most of her joints were affected, which is referred to as polyarticular arthritis (more than five joints in the body affected).
“Emily has arthritis in every joint in her body, from her jaw right to her toes,” says Tonner. “Her medication helps with the pain (methotrexate) but she misses a lot of school and can’t participate in some of the activities her friends do,” she adds.
Nine-year-old Marie-Eve Galipeau was also diagnosed with childhood arthritis at an early age at two-and-a-half years, and her mother Rachel Galipeau also found the process to be a difficult one. Symptoms of pain started as early as nine months, and with swelling of the hands came rashes all over her body.
“After seeing numerous allergy specialists and dermatologists who told me all was normal, I was getting fed-up,” says Galipeau. “I decided to do my own research, and discovered that arthritis came up a lot in my searches,” she says.
When she discussed her research findings with a doctor, she was referred to a rheumatologist who was able to diagnose Marie-Eve right away. A biopsy was also taken of the rash and it was discovered that results showed granulomas (collection of immune cells). After further testing, Marie-Eve was officially diagnosed with a sporadic form of Blau Syndrome, a disorder which was long believed to be strictly familial. It is characterized by granulomatous arthritis, uveitis and skin granulomas.
Marie-Eve takes the same medication that is most common for those with childhood arthritis, methotrexate and prednisone. She also takes eye drops for her uveitis (inflammation of the uvea in the eye).
“It was very difficult to give her the medications when she was younger,” says Galipeau. “She wasn’t happy with us when we gave her the methotrexate injections and usually wouldn’t talk to us afterwards. Now she understands the importance of her medication and copes much better,” she explains.
Dr. Deborah Levy, pediatric rheumatologist at the Hospital for Sick Children has seen many children with arthritis in her career, and notes that the disease can have a far reaching impact that goes beyond the physical dimension.
“It affects the child and it affects the family,” says Dr. Levy. “Kids need to learn to adapt arthritis into their entire lives. Social interactions can be difficult too, especially when their peers don’t believe that they’re feeling the pain they’re feeling,” she adds.
As to why diagnosis is so difficult for childhood arthritis, Dr. Levy says that increased awareness needs to be created about this debilitating disease.
“Family and emergency room doctors don’t necessarily get exposure through unique training for childhood arthritis, so they don’t often think of the diagnosis,” says Dr. Levy.
The Arthritis Society is currently working on a pilot program to provide support to children with arthritis and their families. Adapted for the pediatric population from their successful Chronic Pain Management Workshop, the new program aims to provide children and their caregivers a practical understanding of chronic pain management through a variety of coping methods, empowering them to take an active role in pain management. This activities-based format for children and their families includes additional relaxation exercises, stories and coping strategies that will be particularly suited to children aged four to 10.
For more information about programs and services available at The Arthritis Society, please visit www.arthritis.ca or call 1.800.321.1433.