Lynn Valenti knew something was wrong with her daughter Elizabeth, who at 10 years old, wasn't growing well and could barely put on weight. After working with physicians at Carolinas HealthCare System's Pediatric GI Specialty Center located at Levine Children's Hospital, the Valentis learned that Elizabeth had Crohn's disease, an inflammatory bowel disease (IBD) that causes inflammation of the lining of the digestive tract. The disease can lead to abdominal pain, severe diarrhea and even malnutrition.
Unsure of what to do next, they turned to Victor Piñeiro, MD, director of the center, who told Elizabeth, "I don't want you to feel good—I want you to feel great."
"They're so good at holding your hand," said Lynn. "They're genuinely concerned and work to make sure Elizabeth feels better and stays healthy."
When Elizabeth first presented to the center, she had typical symptoms of Crohn's disease, which include bloody stool or abdominal pain. After several tests, including an endoscopy, which uses a small camera to look at the intestinal tract, Dr. Piñeiro was able to make the diagnosis.
The next step for Elizabeth and her parents was becoming educated. Ryan Shonce, a nurse practitioner at the center, has been leading the way in patient education and has been instrumental in promoting the Improve Care Now program. Improve Care Now is a nationwide network of gastroenterology care centers and professionals specializing in pediatric IBD.
"We're improving outcomes by measuring and reporting the care that we give and getting feedback on medicine dosing and screening tests from larger hospitals and experts in the field," said Shonce.
The center has been involved in the Improve Care Now program since 2010, and Shonce as well as physicians from the center attend a yearly conference in Chicago. To help educate parents, the center takes one parent each year to the conference. Last year, Elizabeth's father, Chris, attended.
"It really gave me a better understanding of how experts from around the world are figuring out what works and then putting together a consistent treatment approach," says Chris.
In the last year, Elizabeth has grown 3¼ inches and has gained 28 pounds. "People who haven't seen her in a while comment on how healthy she looks," said her parents.
Elizabeth is now an active volleyball player and doing well in school. The Pediatric GI Specialty Center also offers an IBD support group for patients and families and schedules periodic trips for the children. Last fall, Elizabeth took part in a trip to a whitewater rafting center. Previous trips included bowling and laser tag.
For Lynn and Chris, educating and preparing Elizabeth for long-term care is important.
"The center's staff has always been consistent with talking to her as the patient," says Lynn. "They make sure she understands everything and ask her if she knows what medicine she's supposed to be taking and things like that. She'll have to manage her illness on her own. I won't be going to college with her."
The award-winning Pediatric GI Specialty Center focuses on:
The center comprises six board-certified pediatric gastroenterologists, two physician assistants, nurses and nurse assistants, a pediatric dietitian and a pediatric social worker.
Our multi-disciplinary team is the key to meeting all the physical, social, psychosocial and emotional needs of our patients.
"We've seen our remission rates increase from 40 percent, about the national average, to about 80 percent," said Ryan Shonce, NP. For more information, call 704-381-6850.