Juvenile Idiopathic Arthritis: Parents Discuss Challenges, Support Rheumatologists Can Offer

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One parent wishes that she could have consulted a crystal ball at the beginning of her daughter’s illness to have “some kind of idea of what we were in for. There are so many stages of letting go of the idea of what your little kid is in for in life, what they are going to do and how it is going to be.”

Another worries about whether she has done enough for her child. “I always feel that I should be doing something else or wonder whether I am doing enough to find out whether this treatment is the right way to go. The main thing I don’t want to feel years from now is that I ‘shoulda coulda woulda’ done something else and she would have been better.”

For one mother, finding relief for a child in pain becomes central to the life of the family. “When a kid is in pain, when your child is hurting, parents will do just about anything so that their child does not hurt.”

First Symptoms

Kirsten Wilder recently talked with The Rheumatologist about the day her daughter, Katherine, first showed symptoms of a distressing illness. The child woke up screaming one April morning shortly after her 3rd birthday. She was unable to move, sit or stand without shrieking in pain. She had been taking antibiotics for nearly a week for strep throat, but her symptoms that morning seemed unrelated. Her pediatrician observed her over a six-week period and “ruled out at the time what I considered to be all the scary stuff,” Ms. Wilder says. “Her blood work was all over the place, so the doctor ran it a few times to make sure it was not leukemia.”

Katherine’s pediatrician then referred her to Boston Children’s Hospital, where pediatric rheumatologist Dr. Susan Kim diagnosed the toddler with spondyloarthritis. Since that day eight years ago, Katherine’s family makes the trip to Boston from their home in South Berwick, Maine, many times each year to see Dr. Kim, a doctor who “listens, supports and treats.”

In addition to monthly tocilizumab infusions in Boston, Katherine’s therapy includes sulfasalazine, prednisone, celecoxib, omeprazole, gabapentin and tramadol, as needed. For most of this school year, she has also been taking amoxicillin to “keep the infections at bay,” her mother says. Her daughter’s pain has never been completely controlled, although “right now she is the best she has ever been, and we are all crossing our fingers. She would tell you that she is in pretty bad pain every day all over.”