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.
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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.