Children's Hospitals Today - Winter 2018 - 32

VITALS / THRIVING

A difficult condition to understand
Living with ulcerative colitis is not easy, especially for kids balancing life's growing pains.

T

he trials and tribulations of a fourth grader are well
documented. Being different from the other kids in any
way can make a student the target of taunting or mean behavior. Amanda Bergman was in fourth grade
when she started suffering from the symptoms
of ulcerative colitis (UC), an inflammatory
bowel disease with symptoms that are difficult
to deal with for a child or adult. The symptoms
can vary depending on the severity of the
inflammation and the location, but they may
include diarrhea, often with blood or mucus;
abdominal pain and cramping; rectal pain; urgency to defecate; inability to defecate despite
urgency; weight loss and fatigue.
Amanda's symptoms appeared and
intensified quickly. "The symptoms literally came on overnight," Amanda says.
"I was pretty much fine one day, and
I woke up with painful diarrhea and
blood in my stool the next."
Gina Bergman rushed her daughter
to the doctor, but it took weeks of testing to diagnose Amanda and even more
time to determine a treatment plan that
worked best. Amanda missed 27 days of school
during that time. "She couldn't leave the house,"
Gina says. "It was hard for her to take a car ride
to go to the doctor. The poor sweetheart was tied
to the bathroom, and it was hard for us to watch
her lose weight and get pale."
Amanda's treatment plan started with a steroid regimen, and then included a medication that wasn't working well and affected her liver. Doctors in the gastrointestinal group at Women & Children's Hospital of Buffalo,
now John R. Oishei Children's Hospital, found the treatment that proved most helpful. Amanda receives monthly
infusions at the children's hospital that last three to four
hours. "The nurses make the time go by pretty fast and
pleasantly," Amanda says. "They have an art therapist, a
music therapist, and I can request a therapy dog. I love
that they focus on the whole me and distract me from
worries about treatment."
Amanda's school was supportive and her classmates rose above any opportunity for ridicule to
help her. But that doesn't mean it was easy for her.

"My classmates were concerned, but it was also very confusing for them," she says. "I would try to explain the stuff, but
because I was now part of this medical world, they would
have no idea what I was talking about." The kids
could understand that Amanda ate differently
than most of them. Class pizza or ice cream parties were not an option for her.
Patients with UC are at risk of developing
malnutrition, nutrient and vitamin deficiencies.
Diana Moya, M.D., pediatric gastroenterologist
at UBMD Pediatrics and clinical assistant professor of Pediatrics at the University of Buffalo,
says that generally, there are not dietary restrictions. "Frequently, patients need a nutrient
dense diet for adequate growth. Once a patient
feels better and the disease is under control, they can
resume a regular diet," she says. Because UC is an inflammatory disease, Amanda needs treatment for associated symptoms. She has eczema that flares up on
her mouth, shoulders, arms and neck. Prior to the UC
symptoms, Amanda didn't need glasses, but now her
mom says that her vision prescription increases each
year at a startling rate. She was recently diagnosed
with Enthesitis Related Arthritis.
Amanda is in ninth grade now and only
misses school five to seven days a year
for infusions. "I had to work really hard
at first to keep up with all of the homework," Amanda says. "My mom tutored
me because getting behind wasn't an
option. I wanted to stay on top
of it all." At 15 years old,
Amanda is successfully juggling her medical and nutritional
needs along with the
rigors of high school. "I
would tell others that it's
important to have a close
network of people who you
love and trust because
they are the ones who help
you get through it," she says.
-Christine Bush

MY CLASSMATES
WERE CONCERNED,
BUT IT WAS ALSO
VERY CONFUSING
FOR THEM.

Today, Amanda is in ninth grade
and a cheerleader on her high
school's spirit squad.
32

CHILDREN'S HOSPITAL S TODAY Winter 2018



Table of Contents for the Digital Edition of Children's Hospitals Today - Winter 2018

Contents
Children's Hospitals Today - Winter 2018 - Intro
Children's Hospitals Today - Winter 2018 - Cover1
Children's Hospitals Today - Winter 2018 - Cover2
Children's Hospitals Today - Winter 2018 - Contents
Children's Hospitals Today - Winter 2018 - 2
Children's Hospitals Today - Winter 2018 - 3
Children's Hospitals Today - Winter 2018 - 4
Children's Hospitals Today - Winter 2018 - 5
Children's Hospitals Today - Winter 2018 - 6
Children's Hospitals Today - Winter 2018 - 7
Children's Hospitals Today - Winter 2018 - 8
Children's Hospitals Today - Winter 2018 - 9
Children's Hospitals Today - Winter 2018 - 10
Children's Hospitals Today - Winter 2018 - 11
Children's Hospitals Today - Winter 2018 - 12
Children's Hospitals Today - Winter 2018 - 13
Children's Hospitals Today - Winter 2018 - 14
Children's Hospitals Today - Winter 2018 - 15
Children's Hospitals Today - Winter 2018 - 16
Children's Hospitals Today - Winter 2018 - 17
Children's Hospitals Today - Winter 2018 - 18
Children's Hospitals Today - Winter 2018 - 19
Children's Hospitals Today - Winter 2018 - 20
Children's Hospitals Today - Winter 2018 - 21
Children's Hospitals Today - Winter 2018 - 22
Children's Hospitals Today - Winter 2018 - 23
Children's Hospitals Today - Winter 2018 - 24
Children's Hospitals Today - Winter 2018 - 25
Children's Hospitals Today - Winter 2018 - 26
Children's Hospitals Today - Winter 2018 - 27
Children's Hospitals Today - Winter 2018 - 28
Children's Hospitals Today - Winter 2018 - 29
Children's Hospitals Today - Winter 2018 - 30
Children's Hospitals Today - Winter 2018 - 31
Children's Hospitals Today - Winter 2018 - 32
Children's Hospitals Today - Winter 2018 - Cover3
Children's Hospitals Today - Winter 2018 - Cover4
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