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Delmont family's story highlights difficulty of diagnosing, living with Crohn's disease

Patrick Varine
| Friday, May 11, 2018, 8:36 a.m.
Above, the Clark family of Delmont: Heather, Tressa, 11, and Logan. Tressa was diagnosed with Crohn's disease in January 2017.
Patrick Varine | Tribune-Review
Above, the Clark family of Delmont: Heather, Tressa, 11, and Logan. Tressa was diagnosed with Crohn's disease in January 2017.

Tressa Clark of Delmont is a case study in the difficulty of properly diagnosing Crohn's disease , and her story is an equally compelling case study on the importance of parental persistence.

During the summer of 2016, Clark's parents Logan and Heather noticed that their daughter's mouth had broken out in sores.

"Our doctor thought she had a real bad case of strep throat," Logan Clark said.

After she spendt two months in and out of the hospital, doctors surmised that perhaps Tressa was suffering from a specific type of gingivitis or was having an allergic reaction to the toothpaste she used at home.

None of those diagnoses, however, explained her lack of energy and frequent bouts of diarrhea, which continued into the fall of 2016.

"When we took her to the hospital the next time, they thought she might be constipated," said her mother, Heather. "Over Christmas, I asked for another X-ray, which they were reluctant to take."

The X-ray showed that Tressa's bowels were not blocked, "but she still had symptoms," Heather said.

The family was referred to a gastrointestinal specialist, and Tressa was admitted to UPMC Children's Hospital. Her parents requested a CT scan and were again met with resistance by doctors.

"My dad almost got kicked out of the hospital," Tressa said.

An eventual CT scan revealed a problem in her small intestine. A subsequent colonoscopy revealed it had swelled to the point where doctors could not pass a camera through it, and in January 2017, a full seven months after her symptoms first appeared, she was officially diagnosed with Crohn's disease.

Rather than opt to have a section of their 10-year-old daughter's intestine removed, Logan and Heather started Tressa on the medication Remicade and she began to improve, putting on 15 pounds in about two weeks following her initial diagnosis.

The medication, however, caused Tressa to develop psoriasis on her scalp, which Heather said was misdiagnosed twice as ringworm.

By that point, the Clarks were completely frustrated with the medical care they'd received in the Pittsburgh area. They decided to take Tressa across the state to Children's Hospital of Philadelphia, where she received treatment and where her situation was presented as a case study at both Drexel University and the University of Pennsylvania.

Heather Clark said she's glad she and her husband refused to settle for initial diagnoses when they knew something was still wrong with Tressa.

"Trusting your gut and knowing how to be your child's advocate is so important," she said. "No one knows your kids like you do, and the team at Children's Hospital of Philadelphia told us that exact thing: 'If you feel something's wrong, speak up.'"

Tressa said she is feeling much healthier these days.

"I feel a lot better, and I have a lot more energy," she said.

Her struggle is far from over, though: Crohn's disease is a chronic condition that she will have to manage for the rest of her life. She underwent a treatment procedure on May 10 and will fly back to Philadelphia for additional treatment at the end of the month.

The Clarks discovered that there is a genetic and hereditary component to the disease.

"My mom was diagnosed with it shortly before Tressa," Heather said. "She's been having bowel issues all her life. It's a genetic trait that's passed down, and (Logan and I) both carry it."

Logan's father also was diagnosed with polymyositis, another inflammatory disease that affects the body's muscle structure, at the age of 55.

May 19 is International Inflammatory Bowel Disease Day , and Logan Clark said it's important for parents to understand its symptoms and how they manifest.

"Don't be afraid to get a second opinion," he said. "Don't be afraid to go somewhere else. You know your child best."

Patrick Varine is a Tribune-Review staff writer. Reach him at 724-850-2862, or via Twitter @MurrysvilleStar.

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