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URMC / Golisano Children's Hospital / Ways to Give / Strong Kids News / February 2017 / Diagnosis of Crohn’s Disease Doesn’t Discourage Young Girl

Diagnosis of Crohn’s Disease Doesn’t Discourage Young Girl

BellaIsabella Venture’s softball glove hadn’t moved in weeks. Her soccer ball rested in her bag, along with her cleats and the rest of her gear. The eight-year-old’s passion for playing the piano was dwindling. Her health was deteriorating. The once energetic child was laboring just to get out of bed every day. Her constant battle with strep throat and other ailments had caused her to lose nearly 20 pounds and lose interest in the things she had loved.
“She had a lot of strange symptoms,” said her mother, Bethany. “She had strep throat and a fever and she was never the same after that.”
In April 2016, Bethany brought Isabella in for an appointment with her pediatrician where she was diagnosed with strep throat. However, when she didn’t recover, and began to lose weight, Bethany began to worry. Even after resolution of her strep throat symptoms, she continued to have daily fevers, abdominal pains, decreased appetite, weight loss, progressive fatigue and recurrent mouth sores which made Bethany worry. Blood work revealed persistent elevation of blood inflammatory markers and iron deficiency anemia.
“We were visiting our pediatrician weekly running all sorts of different tests,” Bethany said. “Her pediatrician was testing for every disease that we could think of and we had crossed off a lot of the autoimmune diseases, and the next person we were referred to was the gastrointestinal (GI) team at Golisano Children’s Hospital.”


Bella2 Upon Isabella’s arrival at UR Medicine’s Golisano Children’s Hospital in June, the Ventures were given a rundown of tests that she’d have to undergo, the first of which being an upper endoscopy and colonoscopy for suspected Crohn’s disease. 
“In Isabella’s case, she lacked the cardinal symptoms of inflammatory bowel disease such as diarrhea, rectal bleeding, and growth failure, but presented with an insidious history of unexplained fevers and mouth sores which can be extra-intestinal manifestations of Crohn’s disease, which is why we pursued the upper and lower endoscopy,” said Nishaben Patel, M.D., a pediatric gastroenterologist at Golisano Children’s Hospital. “As suspected, her endoscopy confirmed the diagnosis of severe Crohn's disease with upper GI involvement.” 
Signs of Crohn’s disease can range from mild to very severe, but typically develop gradually over time. In Isabella’s case, she didn’t have many of the symptoms of someone with Crohn’s disease – typically children with Crohn’s have diarrhea, blood in their stool, and abdominal pain and cramping.
Bella4There are always a few goals of the treatment of Crohn’s disease: to induce remission, make all the inflammation in the bowels go back to a healthy state, permit patients to function as normally as possible, and lastly, to promote growth with adequate nutrition. 
“Based on her age, the severity of her disease, and extent of disease involvement, we decided to proceed with the top down strategy and initiated therapy with a medicine called Remicade,” Dr. Patel said. “Most children receiving Remicade infusions can come in once every two months, but with Isabella, she tends to get symptomatic every three weeks, which is why she receives monthly infusions.” 


Bella3The long-term goal of maintenance therapy in children with Crohn’s disease is to achieve remission, while improving quality of life by creating long periods of time where a patient is symptom-free. This is something Isabella has been able to achieve since meeting Dr. Patel and starting her Remicade treatments.
“From the cleaning staff, to the nurses, to the doctors, Isabella was given so much love from everyone,” Bethany said. “The children in the hospital are going through a scary thing and the love that we were given gave Isabella the will to get up, and the will to fight.”  
Isabella is now nine years old, has grown two inches, and achieved a healthy weight for children her age. She’s back to playing the piano at Hochstein School of Music in Rochester, and just achieved her blue-belt in taekwondo. 


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