Second Opinion Keeps Julia Dancing
When she was 12 years old, Julia Drury of Southeastern Michigan, was diagnosed with Crohn’s disease, a type of inflammatory bowel disease.
“I would describe living with Crohn’s disease exactly like a roller coaster,” said Julia Drury. “I mean, you know, one day you are fine and the next day, you're hunched over after dinner because your stomach hurts so bad.”
Julia was plagued with episodes of stomach pain that intensified by the time she was in high school. She was a competitive dancer and the flare ups kept her from performing. A gastro-intestinal physician in her hometown was treating Julia. However, her mom Jody noticed Julia was getting sicker and became concerned. She felt her concerns were dismissed by Julia’s hometown doctor.
“How do you want to address this, doctor?” asked Jody Drury, Julia’s mom. “Well, (he said) ‘we will just keep on the protocol. It is fine. She is doing okay. Her weight is stable. Nothing acutely is going on.’ And then I mentioned well, but she is having pain. She does seem to have aversions to certain foods. She does have issues with activity. Now she does not want to dance as much.”
Frustrated by the doctor’s care plan, Jody decided to get a second opinion from Cincinnati Children’s Schubert-Martin Inflammatory Bowel Disease Center. Close to 100 families per year from around the country come to the IBD Center seeking a second opinion. Kelly Boyer serves as the first point of contact for families.
My role as the program coordinator is to work with families that are seeking second opinions for their child,” said Kelly Boyer, Second Opinion Coordinator at Cincinnati Children’s. “I like to build a trusting relationship with them, so that they know that they've made the right choice once they decide to come to Cincinnati Children's.”
Before a child’s second opinion visit, Boyer talks with parents about their child’s medical history and collects records from other institutions where the child has received care. She will also create a detailed schedule based on the child’s individual needs. Crohn’s disease and ulcerative colitis are complex conditions that require personalized care from specialists. Experts at Cincinnati Children’s have developed national guidelines for how to best treat IBD.
“Every child or teenager or young adult is unique in some way,” said Lee Ted Denson, MD, director of the IBD Center. “Either in how their disease is or what they're looking for with their family for their treatment plan. And so it's really helpful to have another set of eyes really review everything and try to pull out what some of those unique features are.”
Patients at Cincinnati Children’s will see one of our pediatric gastroenterologists along with other providers based on the child’s needs such as a psychologist, registered dietitian, or surgeon.
“The families are a big part of the second opinion process,” Boyer said. “We do work as a team and the parents, and the patients are part of the team.”
Denson added, “We understand that we're not necessarily going have all the answers, but we'll keep working with them until we get to a plan that works better for their child and really get back to the quality of life and everything they want to be doing.”
In Julia’s case, her mom transferred care to Cincinnati Children’s. Julia had a bowel resection surgery in the spring of 2021. Her health and quality of life have improved. Cincinnati Children’s IBD team is now co-managing Julia’s care with a different gastro-intestinal doctor also based in Michigan.
“The only thing I regret is not getting a second opinion sooner,” Jody said. “It takes a village for Julia's care and from the intake person to the nursing advocates for Julia to all of her specialists and how they coordinate care both at Cincinnati Children's and with our local peds GI. I have just felt embraced and comforted by the ease of which that has occurred.”
Julia is now 16 years old, excelling at school, and was recently accepted into the National Honor Society. She is looking forward to going to college and thinking about becoming a pediatrician. She’s also pivoted from performing to teaching young dancers.
“I teach a lot of classes a week. It is all little kids and I love it,” Julia said. “I've always tried to live my life as like, well, I'm going to do the best that I absolutely can and I know that will bring me success, no matter how it comes.”
