Stories

Helping Kids with IBD Take Control of Their Lives

Our IBD Center combines empathetic care and innovativetreatment so kids can get back to doing what they love.

Paige Norris IBD

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 andopenness. “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 abig say in what happens to it.”

Paige Norris’s young life seemed to besailing along with fair winds and sunnyskies. At 10 years old she was anenthusiastic tennis player with lots offriends and a stellar academic life —two years ahead in every subject.

But sometime in fourth grade herinternal weather shifted, and shedeveloped debilitating abdominal pain.

Her parents felt helpless as doctorsdownplayed Paige’s symptoms. “It wasso frustrating to hear condescendingadvice like, ‘kids have stomach issues;she’ll get over it,’” recalls DeborahNorris. “But I know my daughter,and she’s not a complainer.”

Paige’s condition worsened asmysterious bouts of vomiting anddiarrhea sapped her energy. Shestopped growing, lost 20 pounds and had to quit her favorite sport.

Finally, when Paige was 11 andstarting sixth grade, blood tests anda colonoscopy at Seattle Children’srevealed that she was suffering fromCrohn’s disease, one of a group ofautoimmune disorders known asinflammatory bowel disease (IBD).

“It’s my bodythat’s beingaffected, so it’sgood to have abig say in whathappens to it.”

Paige Norris, 14

Body out of balance

A healthy gut depends on a happybalance between the immune systemand the bacteria that inhabit the bowel (known as the microbiome). Normally,our immune system “wakes up” onlywhen it’s needed to fight off invasivebacteria, forcing it out with vomitingand diarrhea. When the job is done, theimmune system stops those symptoms.

25% of new IBD cases involve kids. Since the average age of diagnosis is 12, pediatric IBDjeopardizes crucial milestones for growth, puberty, bonedensity, and emotional and social development.

But for reasons that are still unclear (perhaps a genetic predisposition ora trigger that upsets the balance),the relationship between the immunesystem and microbiome sometimesgoes haywire. If the immune responsedoesn’t shut off or the bacterialimbalance can’t be righted, the different layers of the GI tract becomechronically inflamed and the body can’tretain nutrients.

Because the average age atdiagnosis is 12 – right on the cusp ofadolescence – pediatric IBDjeopardizes crucial milestones forgrowth, puberty, bone density andemotional and social development.

“We’ve got a critical window of timeto get kids with IBD back on track,”says Dr. Ghassan Wahbeh, who leads Seattle Children’s IBD Center. “And the worstthing that could happen to a teenageris pretty much everything that IBD is.You get embarrassing symptoms. You get singled out because you haveto use the bathroom and interruptyour class. Your participation insports is limited. And everybody isin your business, asking about yourbowel movements, right when yourdevelopmental stage dictates that yougain more independence and privacy.”

The best of meds and diet

Kim Gleeson Dietitian

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 theelements needed to treat IBD comprehensivelyand meet the particularneeds of teens and young adults. Thatmeans supporting patients’ autonomyand having a diverse and robust arsenalof therapies.

“Our focus is on quality of lifethroughout the course of the disease,”says Wahbeh. “Because treatments maywork for a while, then stop working, it’svery important to be able to offer thefull array of options and to be activelyresearching new ones.”

Steroids reduce inflammation andthe pain it causes, so they have oftenbeen used to treat IBD. But they don’teffectively heal the inflamed layers ofthe intestine, and prolonged use invitesa troubling list of side effects.

“Our goal is to keep kids off steroids,”says Wahbeh. “There’s mountingevidence that we have better healingtools, and some of them are in theform of nutrition. So we design ourtreatment plans to use the best ofboth worlds: the best of the diet andthe best of the medications.”

Carin Cunningham IBD

The IBD Center addresses patients’ psychosocialand developmental needs as well as theirmedical needs. Psychologist Carin Cunninghamspecializes in teaching kids with IBD copingstrategies to help them maximize their potential.

Studies show that an entirely liquiddiet for six to eight weeks causesremission in up to 85% of children withnewly diagnosed Crohn’s disease.Though it’s not yet clear why it works,the liquid diet helps heal the intestineand get kids back on track in terms of height and weight. Widely used inEurope and Canada, the approachhas only recently become culturallyacceptable as a first-line treatmentin the United States.

Norris recalls the day Wahbeh laidout Paige’s treatment options: steroidsor the liquid diet. “He talked directly toher, and didn’t scare her about steroids – he was very even-handed and letPaige decide.”

The liquid diet – six and a half cansof Strawberry Ensure a day – turnedPaige’s health around. Within just acouple of weeks, her energy returnedand tests showed her inflammationsubsiding. Her disease went intoremission.

But once Paige started eating solidfood again, the inflammation came back,as it does with about half the kids whodo the liquid diet. After trying a coupleof different medications, Paige and herparents opted for an anti-inflammatory, non-steroid therapy administeredintravenously every other month. Theeffect was dramatic: within a few days,Paige was out on the family trampoline. “It was a complete transformation.The infusions let Paige go for weekswithout having to think much abouthaving Crohn’s,” says her mom.

Now 14 and again in remission,Paige has the energy to participatein the things she loves. She’s backon the tennis court and playing saxin her school’s pep band.

85%of kids with newly diagnosed Crohn’s disease go into remissionwith nutrition therapy.

“The care at Children’s feels reallypersonal, and I know they value myopinion,” says Paige. “It’s my bodythat’s being affected, so it’s good tohave a big say in what happens to it.”

A marathon, not a sprint

Teresa Wachs IBD

Nurse Teresa Wachs says having a team of experts working together lets her focus on what she doesbest: help kids have a sense of control and hope despite what can be an overwhelming situation.

For Ann and Bill Moore, seeing theirson Tom head off to college at EasternWashington University was one ofthe most important milestones in his10-year journey with Crohn’s disease – and one of the hardest. Tom’s been onseveral different medications over theyears and had surgery to remove partof his colon. The usual stresses ofstarting college would be compoundedby managing his disease on his own.

Fortunately, Tom has allies in thetransition, including Teresa Wachs,the nurse who’s been a nurturing andknowledgeable partner in his treatmentsince the very beginning.

“She metwith me before I left for Cheney,” recalls Tom. “And she’d put together thisbinder – my whole health history, all inone place – as a resource. She knowsknowledge is power with this disease,and she and Dr. Wahbeh have alwaysmade me feel like I’m in charge of mytreatment.”

Wachs and Wahbeh keep their eyeson the big picture, notes Tom’s dad. “Their message to Tom is, ‘It’s a marathon,not a sprint: you’re going to have tofigure out every day how to do this.We’ll help you, but it’s up to you whatyour life is like with Crohn’s.’”

Fecal Transplant Offers New Hope

David Suskind Rayner Gunderson and Heidi Zogorski IBD

Dr. David Suskind is leading the nation’s only clinical trial looking at the efficacy of fecalmicrobiota transplant for children with Crohn’s disease. He says it’s patients like RaynerGunderson – celebrating his fifth birthday with Suskind and nurse Heidi Zogorski – thatmotivate him to research the causes of IBD, and to keep looking for safer, more effectivetherapies.

Dr. David Suskind is pioneeringa promising new treatment forCrohn’s disease: fecal microbiotatransplantation (FMT), knowninformally as a “poop transplant.”

The idea is to “reboot” the patient’s microbiome, the bacterial communityin the GI tract, by replacing thebacteria in the patient’s gut withhealthy bacteria from a donor. Asmall amount of donor stool is mixedwith saline solution and administered through a tube from the nose intothe stomach – no smell, no taste.

FMT has been used for decades totreat Clostridium difficile (C. diff), abacterial infection that can be deadly.When one of his patients received afecal transplant to treat her C. diffinfection, Suskind noticed her IBD-relatedinflammation improved too,and was intrigued by the possibilityof an effective non-drug therapy.

In 2013, he led the first-ever FDA-approvedstudy of fecal transplantsin children with IBD. Seven out of10 patients with Crohn’s in the initialstudy went into remission after fecaltransplant. Unfortunately, participantswith ulcerative colitis didn’t seeany improvement.

Suskind is now awaiting FDAapproval for a second study – adouble-blind, placebo-controlledtrial – with the goal of determiningwhether this treatment is moreeffective for Crohn’s than a placebo.

“Fecal transplant has the potentialto open up a completely new wayof treating Crohn’s,” says Suskind. “Instead of trying to moderatethe immune system, it may be thatwe focus instead on adjustingthe microbiome.”

Published in Connection magazine, April 2014