Vol. 3 Issue 1 2011 Gastroenterology One of the Best Julia Bracken, MD, with Brooke Kramer, 12, a celiac disease patient. dear COLLEAGUES, CELIAc DIsEAsE INtEREst GoEs BEYoNd thE WhItE CoAt In this issue of Physician’s Update, we are highlighting the services of our Gastroenterology Section, which has been ranked as one of the best in the country by U.S. News and World Reports. Children’s Mercy has been a regional leader in pediatric gastroenterology and continues to offer the only pediatric endoscopy suite in a 70-county area within Missouri and Kansas. Our boardcertified pediatric gastroenterologists, the only ones in the Kansas City area, are experienced in dealing with the full range of pediatric intestinal, liver and nutrition disorders. Among the services highlighted in this issue is our unique integrative medicalpsychological treatment approach to addressing abdominal pain in children. This approach has resulted in greater improvements in a shorter timeframe compared to outcomes at other pediatric hospitals. You’ll also find information about our development of a small bowel transplant program. Our program will be one of fewer than a dozen offered in the United States, and supports our goal of being one of the top pediatric transplant hospitals in the Midwest. Also included in this issue are clinical updates on celiac disease, eosinophilic esophagitis, and constipation. We thank you for your referrals to our three Kansas City area clinics and outreach clinics in Joplin and Springfield, Mo., and Salina and Wichita, Kan. Please let us know what we can do to better serve you. Charles Roberts, MD Executive Medical Director The term “gluten-free” is heard often these days. But, that doesn’t mean it has become any easier to recommend or to adhere to, especially among young patients. Julia Bracken, MD, a third-year fellow in the Section of Gastroenterology at Children’s Mercy Hospitals and Clinics, knows this all too well. D r. Bracken is focusing her training and research on the treatment of celiac disease in pediatric patients. She is also living with the incurable disease. “When I began focusing on celiac disease for my training, I began to find similarities between the condition and some symptoms I was also experiencing,” says Dr. Bracken, who completes her fellowship in June. “I didn’t want to be one of those doctors who mistakenly believe that they have every disease they are studying, but there were too many similarities.” After consulting her physician, Dr. Bracken received her diagnosis. Although the change in lifestyle has been an adjustment, she has found an advantage to practicing the gluten-free lifestyle that she prescribes for her patients at Children’s Mercy. “With my personal connection and greater personal investment in the condition, I’m always going to know as much as I can and I’m going to be able to help patients and parents find solutions to the road blocks they are encountering,” says Dr. Bracken. In the United States, approximately one in 133 people have celiac disease, though many remain undiagnosed. Initially, celiac disease was considered to be a rare childhood disease, but now, at Children’s Mercy, Dr. Bracken estimates that 150 GI clinic visits each year are for the disease. And, due to advanced research on the autoimmune disorder, screening for celiac disease has expanded to those who do not present with classic GI symptoms of the disease. There are recommendations to test children with a first-degree relative of a person with celiac disease as well as children with associated medical conditions such as Down syndrome, Type 1 diabetes, selective IgA deficiency, Turner syndrome, Williams syndrome and autoimmune thyroiditis. In these high risk groups, the chance of having celiac disease is increased tenfold with 10-15 percent of children having celiac disease. Regardless of the child or even the adult, the only known management of the condition is a strict, life-long, gluten-free diet that eliminates wheat, barley and rye. Working alongside her colleague, Charles Hodge, MD, Assistant Professor of Pediatrics at the UMKC School of Medicine, Dr. Bracken’s hope is to meet the growing needs of celiac patients and their families by opening a dedicated celiac disease center at Children’s Mercy. In addition, the specialists have worked closely with the laboratory at Children’s Mercy to implement an updated celiac screening algorithm that is more specific and cost efficient. “We’re interested in improving the quality of life of these patients as we find better ways to diagnose and treat the disease,” Dr. Bracken adds. For more on screening or treating celiac disease, contact the Gastroenterology Clinic at (816) 234-3066. BEttER OUtcomEs FoR abdominal pain A n integrative medicalpsychological treatment approach employed by Children’s Mercy Hospitals and Clinics is helping children with chronic abdominal pain get better much faster than medical intervention alone. “We surveyed all the GI docs in the country and asked them for outcomes,” says Craig Friesen, MD, Section Chief, Gastroenterology, Professor of Pediatrics at UMKC School of Medicine and Co-Director of the Children’s Mercy Abdominal Pain Program. “Nationally, more than half the kids are not improved after one year in most centers. We saw 70 to 80 percent improvement in our patients at six weeks.” Dr. Friesen and Jennifer Schurman, PhD, a psychologist, Associate Professor of Pediatrics at UMKC School of Medicine and the other Co-Director of the Abdominal Pain Program, jointly assess all children on their first visit to the Abdominal Pain Clinic. Although individualized for each child, the comprehensive treatment often includes medication and biofeedback assistedrelaxation training (BART) as key elements. That approach is “so completely different from what people normally do,” Dr. Friesen says, “which is the GI doc sees them, and if they eventually don’t get better, you send them to a psychologist.” That, he says, is inefficient. And patients often don’t follow through because they think they’re being labeled as crazy or being told that the pain is not real. The biopsychosocial model works because of the mind-body interaction in most chronic abdominal pain, according to Dr. Friesen. About 15 percent of children between 6 and 18 have abdominal pain that has persisted for at least three months and interfered with activities, Dr. Friesen says. Fewer than 10 percent of those children have an identifiable disease. For the other 90 percent, biological, psychological and social factors underlie the chronic abdominal pain. The two main biological contributors are mechanical disturbance, such as sensitivity to intestinal stretching, and gastrointestinal wall inflammation. Both of these are amenable to medication. The most common psychological factor is stress, which can contribute to inflammation and irritation in the stomach and intestines. The inflammation in turn releases chemicals that can contribute to depression and anxiety. “Stress also tends to wear on you over time and messes with your sleep, which makes it harder to cope and causes pain to get worse,” Dr. Friesen says. To identify stress producers and possible intervention strategies, the Abdominal Pain Clinic staff gathers information on how parents react when their child has pain and about the child’s emotional and behavioral functioning, coping skills, sleep habits and interaction with peers and teachers. BART often is the first therapy used to address stress issues. BART consists of deep-breathing and musclerelaxation techniques, certain kinds of imagery and self statements like, “My hands feel warm and heavy,” Dr. Schurman says. The children are hooked up to a computer so the staff can gauge what works best to get children to relax. Borrowing somewhat from the popularity of video games, biofeedback clinicians also use games where the more you relax the faster cars zip around a track, the brighter light bulbs burn and the higher hot air balloons rise. When biofeedback is added for children already responding to medication, they get better in half the time, Dr. Schurman says. And the relaxation techniques learned become lifelong skills that can prevent recurrences. The clinic sees 800 new patients a year between the ages of 8 and 18. Many have missed school for months because of abdominal pain. Most are followed for at least a year by a nurse practitioner and a psychologist to make sure they are functioning well. “If the pain isn’t eliminated or controlled, you’re very likely to carry it into adulthood,” says Dr. Friesen. To reach the Abdominal Pain Clinic: Nurse line for referrals: (816) 983-6975 Toll free: (888) 246-1088 SmALL BowEL PRogRAm Adds to Transplant Expertise Children’s Mercy Hospitals and Clinics is expanding into small bowel transplantation and rehabilitation, further adding to the hospital’s reputation as one of the top pediatric transplant programs in the country. “It’s going to move us into a category where we’re going to be offering services that are only available in very few hospitals around the country,” says James (Jack) Daniel, MD, Medical Director, Liver Transplantation and The Liver Care Center at Children’s Mercy and Associate Professor of Pediatrics at UMKC School of Medicine. “Pediatric small bowel rehabilitation and transplantation is available now at fewer than 10 facilities in the United States.” The hospital’s physicians currently perform liver, kidney and bone marrow transplants for patients from Missouri and Kansas. Plans are to add small bowel transplants in 2011 and to expand the referral base for all transplants to Oklahoma, Arkansas and Iowa. The closest liver transplant programs are in St. Louis, Omaha and Oklahoma City, Dr. Daniel says. The nearest small bowel program is in Omaha. “If we don’t provide the services here, the patients have a long way to go to get them,” Dr. Daniel says. “We’re already providing a number of transplant services and to add these things just fits. Our goal is to develop a transplant institute that can provide the best transplant services available in the Midwest.” Richard Hendrickson, MD, who recently joined the Children’s Mercy staff and is also an Associate Professor of Surgery at UMKC School of Medicine, is the head surgeon for small bowel transplants. Dr. Hendrickson received his medical degree from Georgetown University and has completed fellowships in surgical research/ECMO, Pediatric Surgery and Transplant Surgery. He and Walter Andrews, MD, Section Chief, Transplantation; Surgical Director, Liver Transplantation; and Professor of Surgery at UMKC School of Medicine, will both be transplanting small bowels and livers. Another staff addition is Joel Lim, MD, a pediatric gastroenterologist. He specializes in small bowel rehabilitation in patients with length, nutrition absorption or transit problems in the small intestine. If the small intestine can’t be rehabilitated, then a transplant is necessary. Often, patients with intestinal failure that require intestinal transplants also need liver transplants, as do patients who have had intestinal transplants and cannot rehabilitate. Thus, as the development of the small bowel transplant program continues and the hospital’s reputation as a leader in pediatric transplants grows, the liver transplant program also is set to get a boost. Children’s Mercy now transplants six to eight livers a year. Eighty-five transplants have been done on 79 patients since the program began in 1995. Biliary atresia, which destroys ducts carrying bile from the liver to the small intestine, is the most common reason for a liver transplant at Children’s Mercy. Referrals from the surrounding states should boost the liver transplant numbers to 10 to 12 annually and raise the overall liver patient caseload from 600 a year to 800 to 1,000, Dr. Daniel says. Two to three small bowel transplants a year are envisioned. “Our survival statistics rate with the best programs in the country,” Dr. Daniel says, referring to the 89 percent liver transplant patient survival rate and 83 percent graft survival rate. Dr. Daniel says Children’s Mercy has one of the better organized and patientcentered programs. UNdERstANdINg thE a-b-c’s oF BAbIEs ANd BILE P hysicians at Children’s Mercy Hospitals and Clinics are researching how babies form bile to understand how liver disease occurs in infants. “I think all the nurses and doctors get really involved with their patients,” says Dr. Daniel, who specializes in treatment of liver problems, including birth defects, infections and cancer. “It’s not just a job. We really take it to heart, and I think that really affects our outcomes, how the patients are taken care of.” At Children’s Mercy, chaplains, social workers and developmental experts are available. The staff keeps hospitalized transplant patients occupied, makes sure siblings are involved and arranges follow-up appointments that don’t conflict with school, says Vicki Fioravanti, RN, a post-surgery liver transplant coordinator. Another distinguishing aspect, according to Dr. Daniel, is “a lot of preventive care for the patients to make sure that they stay healthy and that the graft stays healthy.” And unlike some other children’s hospitals that use surgeons trained to work on adults, Children’s Mercy has pediatric specialists. “Pediatric specialists are more familiar with pediatric issues and kids overall,” says Dr. Hendrickson. “I think the followup is better and the attachment to the children is better.” Liver Care Center: (816) 802-1460 (toll free) (888) 458-0259 Liver Transplant Office: (816) 460-1010 (toll free) (877) 460-1010 “Once we get the answers on that, we’ll know how to look at diseases where they don’t form bile properly,” says Jack Daniel, MD, Medical Director, Liver Transplantation and The Liver Care Center at Children’s Mercy. Researchers want to know, for example, how to prevent liver disease in small bowel transplant candidates caused by intravenous nutrition and medications, which can alter bile formation. Dr. Daniel and Ding-You Li, MD, PhD, both pediatric gastroenterologists, are conducting the research with a $100,000 grant from the Liberty Fruit Co., Inc. in Kansas City, Kan. The University of Kansas Medical Center is a collaborator in the study. Children’s Mercy also is involved with other institutions in a National Institutes of Health-funded project to study how children who have received liver transplants do academically, psychologically and developmentally. “We’ve tried to identify things that will help us make sure that 10 years from now they’re all right,” Dr. Daniel says. Constipated Kids Need BRICK T he kids with severe constipation and soiling are easy to spot, says Jose Cocjin, MD, a pediatric gastroenterologist at Children’s Mercy Hospitals and Clinics. “These kids come in, they’re miserable, head down, indifferent, distended belly. You know what the problem is because you can smell it,” he says. “Parents of these children perceive their life and their child’s life to be worse than even those with GERD and inflammatory bowel disease,” adds Dr. Cocjin, Associate Professor of Pediatrics at UMKC School of Medicine and Medical Director of BRICK: Bowel Retraining in Constipated Kids. The BRICK program, which started at Children’s Mercy in 2009, is designed to educate parents and children about constipation’s causes, proper diet, medications and how to alter bowel habits. That education and good follow-up are hallmarks of the Children’s Mercy program, Dr. Cocjin says. The staff typically sees about 800 children a year ages 3 and older with no other medical problems, says program coordinator Kacie Kaufman, RN, a board-certified family nurse practitioner. These children often have seen primary care doctors, but have relapsed because they’ve stopped taking medication. In most cases, there’s no organic cause. “Some kids are just prone to constipation, maybe because their GI system just moves slower than some,” Dr. Cocjin says. For others, it may be the type of formula they take or cow milk allergies. The problem develops at certain stages: during transitions from formula to solid foods and from formula to cow’s milk, at the start of toilet training, and when starting school. Kaufman says most BRICK program patients are clustered in the 3- to 5-year-old age group and in the 7- to 10-year-old range. The pre-schoolers’ troubles, she says, are an outgrowth of toilet training, and the older children never got help until they started having accidents in school. The change of routine when starting school, adapting to public restrooms and reluctance to miss out on playground fun all contribute to children holding the urge to defecate, Dr. Cocjin says. When the urge strikes again, the stool has dried up, so the subsequent bowel movement is harder or bigger, creating more pain. “Once they experience one or two or three painful bowel movements,” Dr. Cocjin says, “they’re hesitant to go because they don’t know if it’s going to hurt or not, especially the younger ones, so it becomes a habit to hold it.” Taunts from other children over soiling episodes just create more stress, Kaufman says, affecting how fast they’re going to get better. BRICK treatment starts with a medical history and physical exam. Sometimes Kaufman orders an abdominal X-ray or blood work. Dr. Cocjin also can do motility studies, if necessary. Laxatives and stool softeners are used initially. More fiber can be added to the diet, Dr. Cocjin explains, but only after any bowel impaction has been relieved. In most cases, the constipation is resolved in a couple of weeks. To prevent recurrences, follow-up clinic visits are necessary to make sure patients take medication regularly and practice good bowel habits. “So I tell the parents, 30 minutes after the meal, you can sit them on the potty,” Dr. Cocjin says. “My rule is one minute per year of age because they lose their interest in doing that.” Some impatient older children need to sit longer on the toilet to make sure they totally empty their bowels. Dr. Cocjin says 25 percent of constipated children will carry the problem into adulthood. To reach the BRICK program: (816) 234-3066 (888) 246-1088 (toll free) EE: Not Just Picky Eaters T here will always be kids who are picky eaters or say their tummies hurt. But, lately, more and more kids are refusing to eat certain foods, their tummies are hurting and they are having pain when they swallow. And it’s not just because they are “being picky.” EE is diagnosed when there is an increased number of eosinophils observed in the esophageal biopsies of patients with gastrointestinal diseases. The underlying cause is thought to be related to food ingestion or allergies, and dietary restrictions are usually implemented as treatment. Eosinophilic esophagitis (EE) is still a relatively new condition that has only been recognized for the past 15 years. Yet, throughout the last decade the prevalence of the diagnosis has increased, especially in the Midwest. With this in mind, Dr. Page works closely with Paul Dowling, MD, a pediatrician in the Section of Allergy, Asthma and Immunology at Children’s Mercy and an Associate Professor of Pediatrics at the UMKC School of Medicine, seeing EE-specific patients on a monthly basis along with a designated nurse practitioner and dietitian. Currently, Children’s Mercy is the only pediatric hospital in the region that is devoting time and space within their Gastroenterology Clinic to specifically treating EE patients with this multi-disciplinary approach. “We aren’t exactly sure why it’s growing among children in the Midwest, but there is proof that it is,” adds Stephanie Page, MD, a pediatric gastroenterologist at Children’s Mercy Hospitals and Clinics. “We are trying to learn more about it and how to best treat the increase of children presenting with EE.” “Working with Dr. Dowling, we hope to better identify the food or foods that are causing the condition by treating the allergy,” adds Dr. Page. “Since there is still a lot to learn about EE, we want our approach to help Children’s Mercy stand out as a pediatric leader in diagnosing and treating this condition.” Currently, EE is not a curable condition. It is also not a condition that is well understood. And, despite the recent increase in the region, it is still considered to be rare. “Only about one in 10,000 kids nationally are diagnosed with this condition,” adds Dr. Page, who developed an interest in EE during her Pediatric Gastroenterology fellowship at Children’s Mercy. “And, there is no single, accepted therapy at this time.” To learn more about the treatment of EE at Children’s Mercy, contact the Gastroenterology Clinic at (816) 234-3066. Gastroenterology Faculty Craig Friesen, MD Section Chief, Gastroenterology Co-Director of Abdominal Pain Program Professor of Pediatrics Jose Cocjin, MD Medical Director, GI Motility Program/GI Procedure Associate Professor of Pediatrics James Daniel, MD Director, Fellowship Program Director, Liver Care Center Associate Professor of Pediatrics Charles Hodge, MD Assistant Professor of Pediatrics Robert E. Kane, MD Professor of Pediatrics Ding-You Li, MD, PhD Medical Director of Clinical Services Associate Director of Fellowship Program Associate Professor of Pediatrics Joel Lim, MD Associate Professor of Pediatrics Jennifer L. McCullough, MD Assistant Professor of Pediatrics Stephanie Page, MD Assistant Professor of Pediatrics Charles Roberts, MD Executive Medical Director/Executive Vice President Professor of Pediatrics William San Pablo, MD Medical Director, Inflammatory Bowel Disease Program Assistant Professor of Pediatrics Owen Smith, MD Director, Interventional Studies Psychology Staff Amanda Drews, PhD Clinical Psychologist Assistant Professor of Pediatrics Michele Herzer, PhD Clinical Psychologist Assistant Professor of Pediatrics Jennifer Schurman, PhD Clinical Psychologist Co-Director Abdominal Pain Program Director, Gastroenterology Psychological Service and Programs Associate Professor of Pediatrics Matthew Wassom, PhD Clinical Psychologist Assistant Professor of Pediatrics In academic affiliation with the University of Missouri-Kansas City. Non-Profit Org. U.S. Postage PAID Kansas City, MO Permit #4301 Physician Services 2401 Gillham Road Kansas City, MO 64108-4698 Return Service Requested Children’s Mercy is an equal opportunity/ affirmative action employer and a United Way Agency. How To Refer Ben 16 years old Ben Ale-Ebrahim wanted the experience of a lifetime when he left home in the summer of 2009 for a month-long trip to Kenai Wildlife Refuge in Alaska. Instead, he ended up having an even greater life-changing experience when he returned to the news that he needed a new liver. Ben, now 16, had only minor complaints when he called home to check in from Alaska. But, it wasn’t until he stepped off the plane in Wichita, Kan., that his parents, Bob and Jennifer, realized their son’s true condition. “We were quite shocked to see how much weight he had gained and how yellow his eyes were,” remembers Jennifer. “We immediately called our family doctor, which led to an outpatient CT scan that resulted in a direct admit to the PICU in Wichita.” After testing in Wichita, the pediatric gastroenterologist began consulting with Children’s Mercy and a transport to Kansas City was set up. Gastroenterology physicians Robert E. Kane, MD, James Daniel, MD, Walter Andrews, MD and Jose Cocjin, MD, diagnosed Ben with Wilson’s Disease. Copper had been accumulating in his body since birth and he needed a new liver to survive. The transplant was arranged quickly. “Despite having to deal suddenly with the gravity of the situation, the entire liver transplant team made us comfortable as they explained the disease and the transplant procedure,” adds Jennifer at Ben’s one-year follow-up to his successful procedure. “The care at Children’s Mercy was vastly different compared to the care at a non-children’s hospital.” For Transport, Inpatient Admission or for Consult 1-800 GO MERCY (1-800-466-3729) Call this number 24 hours a day to mobilize the in-house neonatal or pediatric transport teams, consult with a specialist, or admit a patient directly to Children’s Mercy Hospital or Children’s Mercy South. For Specialty Clinic Appointments (816) 234-3700 or toll free 1 (800) 800-7300 Nurses with our Physician Appointment line can assist you with scheduling clinic appointments for Children’s Mercy Hospital, Children’s Mercy South and Children’s Mercy Northland. Physician’s Update is produced by Community Relations. Shawn Arni Editor Megan Stock Assistant Editor Melissa Harmon Contributing Writer For more information, call Community Relations at 816-346-1370. For more physician news and information, visit our Physician News Web site at www.childrensmercy.org/physicians. News articles are posted weekly, along with regular columns including Hot Topics and Evidenced-Based Medicine.
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