It can take a long time to get a diagnosis of Crohn’s disease.
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.
|Read on: Delmont family’s story highlights difficulty of diagnosing, living with Crohn’s disease | TribLIVE|