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Taylor Six: Managing Systemic Arthritis

A mother shares the challenges of raising a child with systemic juvenile arthritis.

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The fever would come and go, but Taylor Six couldn’t quite shake it. When her mother, Pam, first took her to the doctor, the pediatrician suggested she was suffering from a virus or the flu. Just wait it out, he suggested.

So they tried. Over the next several weeks, the 8-year-old girl missed 14 days of school while her symptoms came and went and changed in ways that perplexed her teachers and family. Sometimes she’d feel better in the morning with no fever and relatively little discomfort. Then her temperature and pain would spike after lunch and the school nurse would send her home. Or, she’d awaken feeling miserable only to watch the symptoms mysteriously lift later in the day.

“You think you have this kid who is messing with your mind and is trying to get out of school,” her mother says.

Increasingly, though, Pam worried. The prior year, Taylor had developed a similar fever and flulike symptoms. Her pediatrician had raised the possibility of arthritis, but by the time Taylor saw a rheumatologist several weeks later, she felt fine.

This time, after Taylor’s bouts of fever, her regular pediatrician ran some blood tests and then got on the phone with Cincinnati Children’s Hospital Medical Center. The next day Taylor and her mother made the first of many trips, nearly two hours each way from their Kentucky home.

Symptoms Return

For several years afterward, Taylor enjoyed long periods without symptoms, marred only by annual flares. The resurgence of symptoms seemed to follow a pattern, occurring between January and May and persisting at least a couple of weeks. During flares, she would take as many as 14 pills a day. Some nights, the mother-daughter pair would spend the wee hours in the bathroom, Taylor soaking in the tub in search of relief.

Then her flares became more frequent and more extended. Her rheumatologist tried several biologics unsuccessfully until prescribing rilonacept (Arcalyst), a biologic approved for cryopyrin-associated periodic syndromes (CAPS) and prescribed off-label for systemic JA, about four years ago. Along with naproxen and methotrexate, rilonacept has kept her disease largely under control.

“While Taylor is doing much better, she is not completely pain-free,” he mother says. “She occasionally has a couple of joints with pain and swelling, mostly in her fingers and knees. She continues to take more medicine each day that any child should ever have to take.”

Today, at 16, Taylor has a driving permit and part-time job and is looking forward to being a high school junior, says her mother. “Taylor is a very outgoing, social, full-of-energy, fun-to-be-around teenager with a marvelous attitude."

 

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Taylor Six: Managing Systemic Arthritis

A mother shares the challenges of raising a child with systemic juvenile arthritis.


The fever would come and go, but Taylor Six couldn’t quite shake it. When her mother, Pam, first took her to the doctor, the pediatrician suggested she was suffering from a virus or the flu. Just wait it out, he suggested.

So they tried. Over the next several weeks, the 8-year-old girl missed 14 days of school while her symptoms came and went and changed in ways that perplexed her teachers and family. Sometimes she’d feel better in the morning with no fever and relatively little discomfort. Then her temperature and pain would spike after lunch and the school nurse would send her home. Or, she’d awaken feeling miserable only to watch the symptoms mysteriously lift later in the day.

“You think you have this kid who is messing with your mind and is trying to get out of school,” her mother says.

Increasingly, though, Pam worried. The prior year, Taylor had developed a similar fever and flulike symptoms. Her pediatrician had raised the possibility of arthritis, but by the time Taylor saw a rheumatologist several weeks later, she felt fine.

This time, after Taylor’s bouts of fever, her regular pediatrician ran some blood tests and then got on the phone with Cincinnati Children’s Hospital Medical Center. The next day Taylor and her mother made the first of many trips, nearly two hours each way from their Kentucky home.

Symptoms Return

For several years afterward, Taylor enjoyed long periods without symptoms, marred only by annual flares. The resurgence of symptoms seemed to follow a pattern, occurring between January and May and persisting at least a couple of weeks. During flares, she would take as many as 14 pills a day. Some nights, the mother-daughter pair would spend the wee hours in the bathroom, Taylor soaking in the tub in search of relief.

Then her flares became more frequent and more extended. Her rheumatologist tried several biologics unsuccessfully until prescribing rilonacept (Arcalyst), a biologic approved for cryopyrin-associated periodic syndromes (CAPS) and prescribed off-label for systemic JA, about four years ago. Along with naproxen and methotrexate, rilonacept has kept her disease largely under control.

“While Taylor is doing much better, she is not completely pain-free,” he mother says. “She occasionally has a couple of joints with pain and swelling, mostly in her fingers and knees. She continues to take more medicine each day that any child should ever have to take.”

Today, at 16, Taylor has a driving permit and part-time job and is looking forward to being a high school junior, says her mother. “Taylor is a very outgoing, social, full-of-energy, fun-to-be-around teenager with a marvelous attitude."