Our IBD Center combines empathetic care and innovative
treatment so kids can get back to doing what they love.
Dr. Ghassan Wahbeh diagnosed Paige Norris, now 14, with Crohn’s disease three years ago. She says Wahbeh earned her trust with his straight talk and
openness. “He’s honest about the options and what can happen. I feel I’m treated like an adult. It’s my body that's being affected, so it’s good to have a
big say in what happens to it.”
Paige Norris’s young life seemed to be
sailing along with fair winds and sunny
skies. At 10 years old she was an
enthusiastic tennis player with lots of
friends and a stellar academic life —
two years ahead in every subject.
But sometime in fourth grade her
internal weather shifted, and she
developed debilitating abdominal pain.
Her parents felt helpless as doctors
downplayed Paige’s symptoms. “It was
so frustrating to hear condescending
advice like, ‘kids have stomach issues;
she’ll get over it,’” recalls Deborah
Norris. “But I know my daughter,
and she’s not a complainer.”
Paige’s condition worsened as
mysterious bouts of vomiting and
diarrhea sapped her energy. She
stopped growing, lost 20 pounds and had to quit her favorite sport.
Finally, when Paige was 11 and
starting sixth grade, blood tests and
a colonoscopy at Seattle Children’s
revealed that she was suffering from
Crohn’s disease, one of a group of
autoimmune disorders known as
inflammatory bowel disease (IBD).
“It’s my body
affected, so it’s
good to have a
big say in what
happens to it.”
Body out of balance
A healthy gut depends on a happy
balance between the immune system
and the bacteria that inhabit the bowel
(known as the microbiome). Normally,
our immune system “wakes up” only
when it’s needed to fight off invasive
bacteria, forcing it out with vomiting
and diarrhea. When the job is done, the
immune system stops those symptoms.
25% of new IBD cases involve kids. Since the average age of diagnosis is 12, pediatric IBD
jeopardizes crucial milestones for growth, puberty, bone
density, and emotional and social development.
But for reasons that are still unclear
(perhaps a genetic predisposition or
a trigger that upsets the balance),
the relationship between the immune
system and microbiome sometimes
goes haywire. If the immune response
doesn’t shut off or the bacterial
imbalance can’t be righted, the different layers of the GI tract become
chronically inflamed and the body can’t
Because the average age at
diagnosis is 12 – right on the cusp of
adolescence – pediatric IBD
jeopardizes crucial milestones for
growth, puberty, bone density and
emotional and social development.
“We’ve got a critical window of time
to get kids with IBD back on track,”
says Dr. Ghassan Wahbeh, who leads Seattle Children’s IBD Center. “And the worst
thing that could happen to a teenager
is pretty much everything that IBD is.
You get embarrassing symptoms. You get singled out because you have
to use the bathroom and interrupt
your class. Your participation in
sports is limited. And everybody is
in your business, asking about your
bowel movements, right when your
developmental stage dictates that you
gain more independence and privacy.”
The best of meds and diet
Dietitians such as Kim Gleeson (left) are essential to the care team, says Dr. Ghassan Wahbeh, who leads the IBD Center. “She’s making sure that not only is the kid well-covered in terms of number of calories, but that they’re also getting all the vitamins and trace minerals they need to grow and develop.” A family’s first appointment with the IBD team will involve a gastroenterologist, nurse, psychologist and dietitian.
The IBD Center brings together all the
elements needed to treat IBD comprehensively
and meet the particular
needs of teens and young adults. That
means supporting patients’ autonomy
and having a diverse and robust arsenal
“Our focus is on quality of life
throughout the course of the disease,”
says Wahbeh. “Because treatments may
work for a while, then stop working, it’s
very important to be able to offer the
full array of options and to be actively
researching new ones.”
Steroids reduce inflammation and
the pain it causes, so they have often
been used to treat IBD. But they don’t
effectively heal the inflamed layers of
the intestine, and prolonged use invites
a troubling list of side effects.
“Our goal is to keep kids off steroids,”
says Wahbeh. “There’s mounting
evidence that we have better healing
tools, and some of them are in the
form of nutrition. So we design our
treatment plans to use the best of
both worlds: the best of the diet and
the best of the medications.”
The IBD Center addresses patients’ psychosocial
and developmental needs as well as their
medical needs. Psychologist Carin Cunningham
specializes in teaching kids with IBD coping
strategies to help them maximize their potential.
Studies show that an entirely liquid
diet for six to eight weeks causes
remission in up to 85% of children with
newly diagnosed Crohn’s disease.
Though it’s not yet clear why it works,
the liquid diet helps heal the intestine
and get kids back on track in terms of height and weight. Widely used in
Europe and Canada, the approach
has only recently become culturally
acceptable as a first-line treatment
in the United States.
Norris recalls the day Wahbeh laid
out Paige’s treatment options: steroids
or the liquid diet. “He talked directly to
her, and didn’t scare her about steroids – he was very even-handed and let
The liquid diet – six and a half cans
of Strawberry Ensure a day – turned
Paige’s health around. Within just a
couple of weeks, her energy returned
and tests showed her inflammation
subsiding. Her disease went into
But once Paige started eating solid
food again, the inflammation came back,
as it does with about half the kids who
do the liquid diet. After trying a couple
of different medications, Paige and her
parents opted for an anti-inflammatory, non-steroid therapy administered
intravenously every other month. The
effect was dramatic: within a few days,
Paige was out on the family trampoline.
“It was a complete transformation.
The infusions let Paige go for weeks
without having to think much about
having Crohn’s,” says her mom.
Now 14 and again in remission,
Paige has the energy to participate
in the things she loves. She’s back
on the tennis court and playing sax
in her school’s pep band.
of kids with newly diagnosed Crohn’s disease go into remission
with nutrition therapy.
“The care at Children’s feels really
personal, and I know they value my
opinion,” says Paige. “It’s my body
that’s being affected, so it’s good to
have a big say in what happens to it.”
A marathon, not a sprint
Nurse Teresa Wachs says having a team of experts working together lets her focus on what she does
best: help kids have a sense of control and hope despite what can be an overwhelming situation.
For Ann and Bill Moore, seeing their
son Tom head off to college at Eastern
Washington University was one of
the most important milestones in his
10-year journey with Crohn’s disease – and one of the hardest. Tom’s been on
several different medications over the
years and had surgery to remove part
of his colon. The usual stresses of
starting college would be compounded
by managing his disease on his own.
Fortunately, Tom has allies in the
transition, including Teresa Wachs,
the nurse who’s been a nurturing and
knowledgeable partner in his treatment
since the very beginning.
with me before I left for Cheney,” recalls Tom. “And she’d put together this
binder – my whole health history, all in
one place – as a resource. She knows
knowledge is power with this disease,
and she and Dr. Wahbeh have always
made me feel like I’m in charge of my
Wachs and Wahbeh keep their eyes
on the big picture, notes Tom’s dad.
“Their message to Tom is, ‘It’s a marathon,
not a sprint: you’re going to have to
figure out every day how to do this.
We’ll help you, but it’s up to you what
your life is like with Crohn’s.’”
Fecal Transplant Offers New Hope
Dr. David Suskind is leading the nation’s only clinical trial looking at the efficacy of fecal
microbiota transplant for children with Crohn’s disease. He says it’s patients like Rayner
Gunderson – celebrating his fifth birthday with Suskind and nurse Heidi Zogorski – that
motivate him to research the causes of IBD, and to keep looking for safer, more effective
Dr. David Suskind is pioneering
a promising new treatment for
Crohn’s disease: fecal microbiota
transplantation (FMT), known
informally as a “poop transplant.”
The idea is to “reboot” the patient’s microbiome, the bacterial community
in the GI tract, by replacing the
bacteria in the patient’s gut with
healthy bacteria from a donor. A
small amount of donor stool is mixed
with saline solution and administered through a tube from the nose into
the stomach – no smell, no taste.
FMT has been used for decades to
treat Clostridium difficile (C. diff), a
bacterial infection that can be deadly.
When one of his patients received a
fecal transplant to treat her C. diff
infection, Suskind noticed her IBD-related
inflammation improved too,
and was intrigued by the possibility
of an effective non-drug therapy.
In 2013, he led the first-ever FDA-approved
study of fecal transplantsin children with IBD. Seven out of
10 patients with Crohn’s in the initial
study went into remission after fecal
transplant. Unfortunately, participants
with ulcerative colitis didn’t see
Suskind is now awaiting FDA
approval for a second study – a
trial – with the goal of determining
whether this treatment is more
effective for Crohn’s than a placebo.
“Fecal transplant has the potential
to open up a completely new way
of treating Crohn’s,” says Suskind.
“Instead of trying to moderate
the immune system, it may be that
we focus instead on adjusting
Published in Connection magazine, April 2014