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Return to A Dedicated Center for Children and Teens with IBD Overview

More on A Dedicated Center for Children and Teens with IBD

A Dedicated Center for Children and Teens with IBD

NEW YORK (May 28, 2014)

Childhood should be a time of unbridled activity. But children and teens with inflammatory bowel disease (IBD) may be sidelined by their symptoms. Moreover, if not properly managed, pediatric IBD can impede a child's growth. NewYork-Presbyterian/Phyllis and David Komansky Center for Children's Health is home to a dedicated Pediatric IBD Center one of just a few such centers in the United States — featuring a coordinated team of specialists who offer compassionate and personalized care for young patients with IBD.

Patient care is coordinated with other pediatric specialists at the Center for Advanced Digestive Care (CADC) at NewYork-Presbyterian/Weill Cornell Medical Center — including transitional care for adolescents approaching adulthood.

About Pediatric IBD

The incidence of pediatric IBD has been on the rise, with more children today being diagnosed than ever before. Over the past 40 years, the incidence of IBD has increased dramatically, although it is not yet known why. Some 1.4 million people in the United States have been diagnosed with the disease, including about 100,000 children and adolescents.

IBD is an autoimmune disorder in which the body's immune system mistakenly attacks and damages healthy tissue in the intestines. There are two types of IBD: Crohn's disease and ulcerative colitis. Ulcerative colitis causes inflammation of the lining of the colon and rectum. Crohn's disease can occur anywhere in the gastrointestinal tract, and the disease goes through all of its layers.

Both types of IBD can cause abdominal pain and diarrhea. Some patients also experience bleeding from the rectum, weight loss, joint pains, or fever. In others, the only sign may be poor growth.

The Pediatric IBD Center Approach

Robbyn E. Sockolow, M.D.
Robbyn E. Sockolow, M.D.

Pediatric IBD doesn't just affect the child, but his or her entire family. "We work closely with families to address the needs of each child and to assess how they influence the family dynamic," explained Robbyn E. Sockolow, M.D., Director of the Pediatric IBD Center, Chief of Pediatric Gastroenterology, and a certified Physician Nutrition Specialist. She was recently named the 2014 Woman of Distinction in Medicine by the Greater New York Chapter of the Crohn's and Colitis Foundation of America, the nation's leading patient advocacy and research support group for IBD.

At the Pediatric IBD Center, each patient's care is coordinated by an interdisciplinary team that includes pediatric pathologists, radiologists, pediatric and colorectal surgeons, a dedicated pediatric nurse, and pediatric nutritionists. A Pediatric Patient Navigator helps bring together all the specialists required to care for patients and their families and facilitates the scheduling of various clinical services.

Diagnosing Pediatric IBD

Lack of recognition and undertreatment of IBD in children can have serious consequences, including anemia, which can affect cognitive function, poor growth, and bone mineral issues that can lead to unhealthy bones as they get older. "So diagnosing IBD early is incredibly important," noted Dr. Sockolow.

During a child's first visit to the Pediatric IBD Center, the team performs a multidisciplinary workup that may include examination of the child's digestive, bone, eye, and skin health, as well as their mental health, family dynamics, and support system. Capsule endoscopy is commonly used to diagnose IBD. It involves the taking of photographs inside the digestive tract using a small camera inside a pill the size of a jelly bean, which the patient swallows. It works by taking about 50,000 pictures over eight hours, which are downloaded and examined by the healthcare team.

Dr. Sockolow helped pioneer the use of capsule endoscopy to diagnose IBD in children with her "jellybean test," a method of preparing and screening young patients for the exam. Children practice swallowing small candies which become progressively larger, until they are able to swallow a jellybean.

Other diagnostic tests the team may use include:

  • Blood tests for markers and genes related to IBD
  • Magnetic resonance and computed tomographic enterography to examine the small and large bowel
  • Interventional endoscopic services (if needed), which are provided by the Advanced Interventional Endoscopy team at the CADC.

Treating Young Patients

"We believe that every child is unique and has his or her own set of symptoms specific to the disease," said Dr. Sockolow. "So we tailor each patient's plan of care to meet his or her individual needs." Advances in the treatment of pediatric IBD have reduced the need for hospitalization and surgery, which were once mainstays of therapy. The complexity of care and the multitude of options available today, however, mean that treatment is best delivered by a multidisciplinary team.

At the Pediatric IBD Center, many patients are treated with medications that do not include steroids (which can impair growth). Newer medications work by suppressing the immune system. Patients whose treatments are given intravenously can receive them in a pleasant infusion center. When surgery is required, surgeons use minimally invasive techniques whenever possible.

Through an approach to each patient's care that Dr. Sockolow calls the "Total Child," the team monitors all aspects of a patient's health that may be affected by IBD — not just the health of the digestive tract. Goals include preventing vitamin and mineral deficiencies; ensuring bone, eye, and skin health; and providing guidance on immunizations. "Our job is to keep the disease in remission to the point where it becomes an afterthought in our patients' day," said Dr. Sockolow. "If we do our job well, patients can go on to be whatever they choose to be in their lives."

Education and Research

It is critically important for patients with IBD to stick with their prescribed therapy and regular follow-up care to reduce the incidence of disease flares. At the Pediatric IBD Center, patients are seen every three to four months to assess their health and their compliance with their care. The staff works with parents to help school-age children secure any necessary accommodations in school.

The team is also involved in research to identify genetic vulnerabilities and environmental risk factors and to create patient registries focusing on long-term treatment outcomes and quality-of-life.

Transitional Care

Recognizing that IBD is a lifelong diagnosis, the Pediatric IBD Center established a transitional care program — the first one in the New York metropolitan area — to provide patients with tools and resources to manage their own medical care. "We realize that these are young individuals who have a lifetime of opportunity," said Dr. Sockolow. "We want to minimize their disease as an obstacle in their lives as much as possible."

Toward that goal, older children receive one-on-one education to help them learn to take care of their own healthcare needs as they get ready to leave their teens. When they near age 18, they can participate in a program called "Getting Your Teen Ready for College." Once they turn 18, their transition to adult care is seamless as they are connected with specialists in NewYork-Presbyterian/Weill Cornell's renowned Jill Roberts Center for Inflammatory Bowel Disease, where they can be treated for the rest of their lives.

For appointments and information about the Pediatric Inflammatory Bowel Disease Center at NYP/Phyllis and David Komansky Center for Children's Health, call (646) 962-3869.

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