An Outspoken Advocate: Lacey’s Story

Lacey, 13, hadn’t initially mentioned all her inflammatory bowel disease (IBD) symptoms to her mother or pediatrician. But when extreme stomach pain clearly indicated something more than viruses or inflammation and merited a trip to Children’s Hospital of Philadelphia’s (CHOP) Emergency Department, a doctor there asked a question that led to the diagnosis.

When she was a baby, Lacey had bouts of asthma. But she seemed to grow out of it. By the time she was in fifth grade, she was participating in all sorts of activities: singing in the choir, playing flute in the band, cheerleading, playing softball and swimming competitively. Then her health issues seemed to return.

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“We noticed it in September 2017,” says Lacey’s mom, Kadi, who noticed Lacey’s lymph nodes were swollen. “Then she got ulcers in her mouth.” They saw both their pediatrician and a pediatric dentist, who recommended swishing with salt water and continuing the Magic Mouthwash mixture the pediatrician had recommended for comfort. “In hindsight, these were an early IBD symptom,” explains Kadi.

Lacey began complaining of stomach pains, was experiencing diarrhea, and was losing weight, symptoms that brought them to the family pediatrician three times over the course of just a few weeks. She had been having the bowel issues for a while, but hadn’t told anyone until this point. The pediatrician diagnosed her with stomatitis, an inflammation of the mouth and lips, and encouraged a bland diet.

A first mention of IBD

In January 2018, Lacey’s experienced stomach pain so severe, she was doubled over in pain, almost unable to walk. They headed to CHOP’s Emergency Department, where Jeremy M. Esposito, MD, MSEd, an attending physician, assessed all of Lacey’s symptoms together and asked Kadi, “Has anyone talked to you about IBD?”

“Of course I started looking it up on my phone right there in the ER,” remembers Kadi. Lacey’s stool was tested, and she was given an antispasmodic for stomach cramps. Most importantly, she was referred to CHOP’s Division of Gastroenterology, Hepatology and Nutrition to see them as soon as possible. “Dr. Esposito in the ER was spot-on in recognizing the IBD symptoms,” says Kadi.

A few weeks later they were at CHOP for a colonoscopy. “Before the procedure, I kissed her,” says Kadi, “and I was holding her hand, and it seemed to be all bones — that’s when it hit me how much weight she had lost.”

Confirmation of Crohn’s

Pediatric gastroenterologist and attending physician Paul Ufberg, DO, made the diagnosis of Crohn’s disease. Lacey was started on immunosuppresive biologic infusions every four weeks.

Each child with IBD responds differently to different treatments, and Lacey was no exception. “At the second infusion, she turned bright red,” says Kadi.

As a result, Lacey requires infusions that last three to four hours monthly at CHOP’s Main Campus. Her care is now managed by Maire Conrad, MD, MS, an attending physician with the Center for Pediatric IBD and CHOP’s Very Early Onset IBD (VEO-IBD) Program.

With her symptoms under control, Lacey is maintaining straight A’s in seventh grade and loves science classes. Always outspoken, Lacey has become a strong advocate for increasing pediatric IBD research and finding more options for children who suffer from the disease.