Soccer Player Kicks Crohn’s to the Sideline

From a young age, Lily Smith loved soccer. Nothing distracted her from smacking the ball down the field and fighting off competitors—not even the Celiac disease she had endured since age four.

But near the end of Lily’s fifth-grade year, she began complaining of vertigo-like symptoms that were so bad they left her nauseous and prone to vomiting. She became extremely fatigued and began suffering from severe joint pain, headaches, high fevers and swelling in her face and under her jawbone. Despite a variety of treatments, the symptoms persisted through the summer and into the fall.

By the end of the first semester of sixth grade, Lily had missed 33 days of school. “She was so exhausted she would go to bed at 7:30 just to make it through the next day,” her mother Gail said.

Despite her fatigue, Lily remained committed to her favorite sport—soccer. Lily’s coach was extremely compassionate. He had watched her health decline that year and, though she often missed practice and frequently had to be subbed out of games, he supported his dedicated player.

Reassessing a diagnosis

“We took Lily to her pediatrician many times and had quite a few tests done,” Gail said. But when the doctor diagnosed Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome (PFAPA), Gail wasn’t convinced. She took her daughter to see a specialist at The University of Kansas Health System who referred Lily to Maria F. Ibarra, MD, a pediatric rheumatologist at Children’s Mercy.

“Even though Lily had to endure a lot more tests, she didn’t complain because Dr. Ibarra helped her understand the importance of every one,” Gail said. When Dr. Ibarra asked Julie A. Bass, DO, a Children’s Mercy gastroenterologist, to examine Lily the family was hesitant.

“We were so spoiled by the amazing care we’d received from Dr. Ibarra we were a little reluctant to move on,” Gail said. “In the end, we trusted Dr. Ibarra. And that was the best decision we ever made!”

Trust and testing

In the spring of her sixth-grade year, Dr. Bass diagnosed Lily with Crohn’s disease, a form of inflammatory bowel disease (IBD) that usually affects the intestines.

“Dr. Bass spent a lot of time explaining her diagnosis and treatment options. And, even though we were very upset by Lily’s diagnosis, we never left Dr. Bass’s office feeling hopeless,” Gail said. “It helped that Lily loved Dr. Bass. From the first appointment, she included Lily in the conversation, which made her feel like she was part of the decision-making process.”

Lily’s began taking oral medications to handle the illness. After a few months, however, she wasn’t making the progress Dr. Bass anticipated. Thus, a new treatment was prescribed with included two-hour infusions, every seven weeks.

The treatments did the trick. Lily’s appetite returned, she gained weight and she grew close to a foot over the next two-and-a-half years. When Lily later developed antibodies to the drug, Dr. Bass switched her to a new treatment regimen.

Today, Lily is doing great, Gail said. “She continues to grow and become stronger and is pretty much symptom-free.”

Now a 16 year old, Lily follows up with Dr. Bass twice a year. The high school junior continues to pursue her favorite sport, playing on both a club team and her high school team.

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