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

Doctors need to understand that parents are willing to try anything if they think it will work for their child. “Doctors believe that drugs are supposed to fix this stuff, but I wish they could keep their minds open to alternative treatments, anything that is going to help these kids,” Ms. Krauss says. “I wish they would be more open to explore those solutions to see if there may be a solution that would help.”

“There is a huge interest in alternative therapies,” Denise says, “as there is a lot of information out there suggesting that diet could affect this. In an ideal world, these alternative treatment options would be part of a rheumatology center so that parents wouldn’t have to struggle to find information and reputable practitioners to complement their child’s current treatment regime,” she says.

Doctor-Patient-Parent Relationship

These parents and their children have a close relationship with their child’s pediatric rheumatologist, a relationship that gives them “great support,” according to Ms. Krauss.

Ms. Wilder says her daughter “is super excited to see Dr. Kim every month, like a long lost best friend. She can be feeling horrible in the car, and then when we get there, she is all bubbly and excited.” Her daughter told her recently that she wishes everyone could have a Dr. Kim.

“For those of us who have been on this side of it for a while, we really appreciate the people who have chosen this field and who do this work and are the ones that will call us after they go home at night just to check and make sure that our kid is OK,” Ms. Wilder says.

“I know that this is their job and this is what they do, but I am guessing that 99% of them could have had a better-paying job, could have had a less stressful job, but they chose to do this work. We all really appreciate it and look for ways to be able to say that. They are very unique and special people who chose to put themselves in a very overworked, very underserved, very underappreciated job, but they are going to get in there and do it well,” she says.

Kathy L. Holliman, MEd, is a medical writer based in Beverly, Mass.

Sharing the Decision Making with Parents

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Parents dealing with their child’s juvenile arthritis can be confused about therapeutic options and why a certain therapy has been recommended instead of another. Ronald Laxer, MD, academic physician and physician administrator at The Hospital for Sick Children and the University of Toronto, says that even if the rheumatologist gives information about those options, parents can walk away confused. “The information may be said too quickly, it may not be clearly explained, only one parent attends the clinic and has trouble transmitting the information to the other, or the parent forgets to ask certain questions when they come in with their child.”