Children's View Fall 2012

Fall 2012

Children’s The

Heart of Healing NURSING at CHOP

also inside

Creating a Roadmap for Autism

the view from here When you spend time being treated in a hospital, you quickly realize how indispensable nurses are.

Call for assistance from your room and chances are good that a nurse will be the first face you see. Children’s Hospital is no exception.

As a physician, I can vouch that nurses truly are our eyes and ears during all the times between rounds and procedures.

They care for both patients and patients’ loved ones, who understandably need support in a difficult time. On Page 3, you’ll read one mother’s touching story of just such a case. And nurses’ work goes well beyond inpatient care. The photo essay

offiCers

Mortimer J. Buckley Chairman Mark Fishman Vice Chairman Tristram C. Colket, Jr., R. Anderson Pew Honorary Vice Chairmen Steven M. Altschuler, M.D. Chief Executive Officer Clark Hooper Baruch Secretary Anthony A. Latini Treasurer Thomas J. Todorow Assistant Treasurer

beginning on Page 8 provides a wonderful window into the

Jeffrey D. Kahn, Esq. General Counsel & Assistant Secretary

multitude of areas and ways in which nurses keep Children’s

Margaret M. Jones Assistant Secretary

Board of trustees N. Scott Adzick, M.D. • Steven M. Altschuler, M.D. • Clark Hooper Baruch • A. Lorris Betz, M.D., Ph.D. • Fred N. Biesecker • Aminta Hawkins Breaux, Ph.D. • Mortimer J. Buckley • Reid S. Buerger • Dominic J. Caruso • Alan R. Cohen, M.D. • Tristram C. Colket, Jr. • Arthur Dantchik • Mark Denneen • Mark Fishman • Lynne L. Garbose, Esq. • Shirley Hill • Anthony A. Latini • James L. McCabe • John Milligan, C.P.A. • Asuka Nakahara • Jeffrey E. Perelman • R. Anderson Pew • Gerald D. Quill • Daniel T. Roble • David B. Rubenstein • Anne Faulkner Schoemaker • Salem D. Shuchman • Kornelis Smit • Binney Wietlisbach • Nancy Wolfson eX-offiCio

Tami Benton, M.D. • Jeffrey A. Fine, Psy.D. • William J. Greeley, M.D., M.B.A. • Diego Jaramillo, M.D., M.P.H. • Ralph Wetmore, M.D. • Bryan Wolf, M.D., Ph.D. emeritus

Leonard Abramson • Willard Boothby • Stephen B. Burke • Ruth M. Colket • Armin C. Frank • Peter C. Morse • George Reath Jr. • Stuart T. Saunders Jr., Esq. • Richard D. Wood Jr.

Hospital the best of the best.

The diversity of our nurses’ roles and skills mirrors the diversity of CHOP’s programs for children facing a wide array of health

Children’s

problems. Our intensive stuttering program for teens (Page 14), the Amplified Musculoskeletal Pain Syndrome Program (Page 16) and the Dietary Treatment Programs for Epilepsy (Page 18) are great examples of innovative medical approaches that have given children their lives back.

Philanthropy plays a major part in CHOP’s ability to provide so many of our services and family-centered programs. Thank you for the role you play in supporting these vital elements of Children’s Hospital!

Steven M. Altschuler, M.D. Chief Executive Officer

eXeCutiVe VP & Chief deVeloPment offiCer

Stuart Sullivan assistant VP, CommuniCations & donor relations

Writers

Louis Bell, M.D. Molly Force Mark Jolly-Van Bodegraven Jennifer Long Eugene Myers Wendy Weckstein PhotograPhy

Ed Cunicelli Kevin Monko

Mark Turbiville

illustration

editor

Christine Roy, Agent Illustrateur

Julie Sloane

design

SwivelStudios, Inc.

Children’s View is produced

by The Children’s Hospital of Philadelphia Foundation.

Comments and inquiries should Be addressed to:

The Children’s Hospital of Philadelphia Foundation 34th Street and Civic Center Boulevard Philadelphia, PA 19104-4399 givehope@email.chop.edu For information about making a contribution to support CHOP, call 267-426-6500 or visit GiftofChildhood.org.

Printed By

ProduCtion

Kimberly Caulfield Nicole Keane

LLC

Founded in 1855, The Children’s Hospital of Philadelphia is the birthplace of pediatric medicine in America. Throughout its history, a passionate spirit of innovation has driven this renowned institution to pursue scientific discovery, establish the highest standards of patient care, train future leaders in pediatrics and advocate for children’s health. A haven of hope for children and families worldwide, CHOP is a nonprofit charitable organization that relies on the generous support of its donors to continue to set the global standard for pediatric care.

© 2012 The Children’s Hospital of Philadelphia, All Rights Reserved.

8

Children’s

cover story nursing at CHOP: a Photo essay Our cameras looked over the shoulders of nurses as they worked at the bedside, in operating rooms, in classrooms and more.

5 Our superhero patients share their own favorite superheroes.

6

CHOP is the world leader in caring for families with 22q11.2 deletion syndrome.

2

14

A new roadmap for autism, telemedicine comes to CHOP, research news and more

An intensive summer program at CHOP for teens who stutter

today@CHOP

Well said

16

18

The bacon cure? A special high-fat diet is stopping seizures.

Conquering the Worst Pain A mother shares her son’s story of recovery from an intense pain disorder.

ON THE COVER: Duane, 3 months, with his nurse Kerri Derrico, R.N.

20

volunteers in Philanthropy A season of fabulous fundraising events

today@CHOP navigating autism imagine you are bringing your son or daughter to a regular checkup at the pediatrician. as you walk in, your brain is racing: Don’t forget to buy milk and pick up the dry cleaning. Did you pay the credit card bill? You feel the buzz of a text message. It’s just another busy day, and you’re happy to scratch this checkup off the to-do list. But then you get some unexpected news: The pediatrician thinks your child is showing signs of autism.

For so many parents, it is a moment of pure shellshock.

With one in 88 children now thought to be affected by an autism spectrum disorder (ASD), more and more parents are struggling to understand an autism diagnosis, find the resources their child needs, and help him or her with ASD through all the normal milestones, from toilet training and school to adolescence and adulthood.

“There’s no comprehensive, one-stop shop to find this information,” says Gail Stein, L.S.W., A.C.S.W., a social worker at CHOP’s Center for Autism “You can figure out how to find a Research (CAR). “You can psychologist or speech therapist, figure out how to find a psychologist or speech but where do you go for social therapist, but where do you go for social skills groups? skills groups? There’s no clear

path. There is just so much on the Internet — where do you begin?”

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There’s no clear path. There is just so much on the Internet — where do you begin?”

When Susan Wenger received the news that her 18-monthold grandson was flagged as showing signs of autism, she went into overdrive trying to connect him with an array of therapists and services that CHOP specialists recommended. But even for a bright, savvy businesswoman, it was incredibly difficult.

That’s why Wenger and her family are providing the financial support for CAR to create an “autism roadmap.” (Wenger and her husband, Don, also are serving as honorary chairs of the 2012 “All In” for Kids Poker Tournament to benefit autism research and care.) When the roadmap goes live next summer, it will be a comprehensive website providing families with accurate information about ASD, directories of service providers at CHOP and elsewhere, and information ASD families will need at various stages of life. Based in part on the in-person Next Steps workshops for families and professionals that CAR offers several times a year, the website will build on that content and make it available to a broader audience.

“A tool like this is just so needed,” says Wenger. “It will make life so much easier for parents and grandparents and help get children who are red-flagged for autism the resources they need as quickly as possible.”

—JULIE SLOANE

quiz

my CHOP hero “Making a difference in a hospital sometimes has nothing to do with medicine. My son had been diagnosed with intracranial hypertension, a condition that causes him to suffer debilitating headaches. While at CHOP for his second lumbar puncture, I knew he was receiving the best medical care possible. But when the diagnosis was reconfirmed, I was scared. While my son slept off the anesthesia, my emotions overtook me. It’s hard to put into words how thankful I was that Patty D’Alessandro was there not only for Andrew, but for me as well. She reassured me as a nurse, and then showed ultimate compassion as a caring, loving person. She embraced me and allowed me to literally cry on her shoulder until I was calm. Just when I felt so afraid, she reached out with her arms and her heart. I truly believe that she was heaven-sent to bring comfort during such a difficult time. I pray that she knows what a difference she made that day. A difference that makes her my true hero.”

—SUZANNE BRENNAN, M O T H E R O F A N D R E W, 1 1

Patty D’Alessandro, R.N.

Yo¯koso! Ahlan Wasahlan!

It may be The Children’s Hospital of Philadelphia, but every year, CHOP says bienvenue, velkommen, yo¯¯koso, ahlan wasahlan and welcome to patients from around the globe.* The Hospital’s International Patient Services program facilitates visits for more and more children every year. Just how global is ChoP? Take the quiz and find out!

1

last year, ChoP treated patients from how many foreign countries?

2

From which foreign country did ChoP get the most patients last year?

3

A. B. C. D.

A. B. C. D.

35 42 53 61

United Arab Emirates United Kingdom Mexico Canada

ChoP has translators for how many languages?

A. B. C. D.

22 25 28 32

4

Which are the two most commonly requested languages for our translators?

5

last year, patients from which country traveled the greatest distance to get to ChoP?

6

in which of these countries does ChoP’s global health program not have a partnership?

A. B. C. D.

A. B. C. D.

A. B. C. D.

Spanish, Hindi Japanese, French Spanish, Arabic Chinese, Vietnamese

China India Australia Poland

Dominican Republic Peru Botswana South Africa

nurse in neurology at ChoP sinCe 1988

—MOLLY FORCE

*That’s “welcome” in French, Norwegian, Japanese, Arabic and English.

To honor a CHOP employee who has gone above and beyond for your family, go to giftofchildhood.org/ myhero.

Fall 2012 | Children’s vIew | 3

answers: 1) C, 2) a, 3) a, 4) C, 5) C, 6) B

today@CHOP Bringing CHOP Closer to Home ChoP already has the largest pediatric care network in the at Pennsylvania Hospital. The concept is being thoroughly nation, but soon it may be able to expand its reach even farther tested, both for reliability and comfort to patient families.

— to virtually anywhere in the world. A new technology called Potentially telemedicine could bring CHOP’s specialists to telemedicine allows CHOP pediatric specialists to examine and any hospital nationally, or even internationally. The technology diagnose patients without even meeting face to face. Instead, could also reduce the cost of care while giving more families CHOP doctors are examining patients through a robot loaded access, to specialized experts. —EUGENE MYERS with high-definition cameras, scopes and video monitors.

Most community hospitals are adult-oriented and can’t support an array of pediatric specialties. But when a child is injured or ill, every second counts.

The telemedicine robots enable timely consultation with a CHOP specialist over a secure network, while the local physician manipulates the robot to focus on different parts of the child’s body and participates in the discussion.

The telemedicine pilot program at CHOP was launched with a generous grant from the Verizon Foundation and has begun with two robots, one located at the Virtua Voorhees campus in the Pediatric Emergency Medicine specialist Mark Joffe, M.D. (standing), uses CHOP Care Network, and the second telemedicine to consult with pediatric neurologist Katie Taub, M.D. (on screen).

research

news

CHOP has one of the largest pediatric research programs in the nation.

Here are just a few of the research studies making headlines.

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Housing Foreclosures Linked to Increase in Child Abuse

Stress from the economic recession has led to an increase in child abuse, investigators at CHOP’s PolicyLab have found. The researchers reviewed records from 38 children’s hospitals and found a strong relationship between the rate of serious physical child abuse and local mortgage foreclosures. Interestingly, the findings contradict national child welfare data, which show a decline in child abuse over the same period. The study highlights the opportunity for hospitals and child welfare agencies to work together to share information and get a more complete picture of child abuse rates, with the goal of developing targeted prevention and intervention strategies.

New Genes Found for Childhood Obesity

Junk food and inactivity both contribute to childhood obesity, but researchers have long suspected there are other factors at play. In cases of extreme childhood obesity, genetics has been known to play a role; as it turns out, genes play a role in non-extreme cases

kids in the hall We walked the halls of CHOP and asked patients the same question:

“Who is your favorite superhero?”

Tabetha Age 16 • Pulmonology

Elisa

Zymir

Age 17 • Neurology

“Batman. I like his raspy voice in the movie, and no matter how old he is, he can still move.”

Age 9 • Dialysis

Imani Age 6 • Hematology

“Batman, because he’s strong.”

“Tinkerbell, because she flies, has a wand, has a crown and has slippers.

I dressed like her for Halloween.”

of childhood obesity as well. CHOP investigators at the Center for Applied Genomics led an international group called the Early Growth Genetics Consortium to analyze the world’s largest collection of DNA from children with obesity. They identified at least two new gene variants that increase the risk of childhood obesity. The findings may one day be useful in helping to design preventive interventions and treatments for children, based on their individual genomes.

First Drug Treatment for Severe Congenital Hyperinsulinism Shows Promise

Pediatric endocrinologist Diva De León, M.D. (left), recently published a pilot study that may lead to the first successful medical therapy for a severe form of congenital hyperinsulinism (HI). De León and her CHOP team discovered a peptide called exendin-(9-39), which controls blood sugar levels in people with HI, who produce high levels of insulin and are therefore prone to dangerously low blood

“Mom and Dad, because they have helped me in so many ways since I’ve been in the Hospital. I love them both so much!”

Sophia Age 8 • Pulmonology

Kuhmar

“My guardian angel, because she comforts and protects me when I am scared.”

Age 4 • GI

“Spider-Man, because he shoots webs out of his hands.”

glucose. CHOP is the world leader in treating children with HI. De León’s study was supported in part by funding from the Lester and Liesel Baker Foundation and the Clifford and Katherine Goldsmith Foundation.

New Initiative Explores the Genetics of Rare Diseases

There are thousands of rare diseases in the world, many of them inherited. While each one affects only a small percentage of the population, their combined impact is substantial. Unfortunately, progress to understand and treat them is often slow, due to their rarity and the high costs of research. A new initiative from CHOP and BGI, the world’s largest genomics organization, aims to change that with the 1,000 Rare Diseases Project. It will use next-generation sequencing technology to identify the genetic mutations causing these rare diseases.

The initiative is expected to facilitate the rapid and accurate diagnosis of rare diseases and lead to new therapeutic interventions.

—Jennifer Long

Fall 2012 | Children’s view | 5

today@CHOP

sPOtligHt On:

22q and you Center CLOCKWISE FROM LEFT: Texas Rangers pitcher Ryan Dempster and his daughter Riley; Jordan Fox, 11, and his mother, Karen DeBlois, both have the 22q11.2 deletion; McDonaldMcGinn with her recent award; Michael Weinberg, 15, shows off the center’s “22q bear”; Michael, with his parents, Barbi and Marc, first visited the center when he was 4 months old.

Children who are missing a small piece of their 22nd chromosome, a condition known as 22q11.2 deletion syndrome, face a broad array of possible symptoms: heart defects, frequent infections, learning and developmental delays, autism, palate differences and others.

The discovery of this genetic deletion in 1982

by CHOP’s Elaine Zackai, M.D., and Beverly Emanuel, Ph.D., led to what is today the leading center in the world for treating these children.

The 22q and You Center at CHOP brings together expert physicians from more than a dozen specialties to coordinate the complex care these children require. More than 1,000 patients from 47 states and seven foreign countries have come to the 22q and You

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Center, making it the largest center of its kind.

The center’s researchers are also working to understand the genetics of the condition.

“It seemed intuitive at first that people who had a larger chromosomal deletion would have more symptoms, but that turned out not to be true,” says Donna McDonald-McGinn, M.S., C.G.C., program director of the center. “We’re now looking at genes on other chromosomes to sort through their role in contributing to or preventing certain symptoms.”

Texas Rangers pitcher Ryan Dempster and his family became advocates for 22q after t heir daughter Riley was diagnosed with the deletion. The Dempster Family Foundation provides funding for the 22q Center’s rotating

undergraduate intern, who helps to guide and coordinate care for families during weeklong evaluations and will also leave with a rich knowledge of 22q to bring to his or her own field of study, such as medicine or nursing.

“So many of the 22q programs which are now sprouting up around the country and modeling their programs after us include clinicians and researchers who trained or worked at CHOP,” says McDonald-McGinn, recent recipient of the Angelo DiGeorge Medal, considered the highest honor in the 22q field, at the 8th Biennial International 22q11.2 Deletion Syndrome Meeting.

“We’re educating the world about 22q and are delighted to do so!” —JULIE SLOANE

ask Dr. Bell Louis Bell, M.D., chief of the Division of General Pediatrics at CHOP, explains the latest in medical thinking on an important topic: influenza.

BY LOUIS BELL, M.D.

Staying Healthy During Flu Season autumn brings shorter days, cooler temperatures and colorful leaves, but it also means that once again flu season is upon us.

As winter approaches, it’s likely your kids will bring home more than just homework from school. Whether you’re worried about them coming down with the sniffles or worse, there are some simple things you can do to protect yourself and your family.

My colleague Richard Hodinka, Ph.D., director of the Clinical Virology Laboratory at CHOP, has spent his career developing better ways to diagnose viruses like influenza and study their spread through the community. He stresses that although flu gets a lot of attention, many similar viruses circulate in the winter that primarily attack kids, including rhinoviruses, which are best known as the major cause of the common cold but can also cause more severe illness, especially in children with asthma.

Many adults call any cold or virus “the flu,” which leads them to underestimate the seriousness of true influenza. Flu is capable of causing significant illness in anyone regardless of age and can even be fatal, as we saw in the H1N1 pandemic of 2009. Fortunately, influenza is unique among respiratory viruses because we can vaccinate against it.

This annual flu shot is recommended for almost everyone, especially children and the elderly, who are at higher risk of hospitalization with bad bouts of flu. Yet many people don’t bother.

Vaccinations (against flu and other preventable childhood infections) are vital to protecting not only your kids but other children in the community as well.

A small number of people aren’t able to be vaccinated due to certain medical conditions, and they rely on everyone around them to stop the spread of flu. A recent decline in childhood immunizations has caused numerous outbreaks of whooping cough, a potentially fatal illness that had all but disappeared from the United States thanks to vaccinations.

Despite persistent rumors, vaccines are completely safe for your children. Studies have conclusively shown that there is no link between vaccines and autism.

Other than flu vaccine, the best prevention is good personal hygiene: washing hands more frequently and not touching your face.

We can also slow the spread of germs with good respiratory etiquette — coughing and sneezing into the elbow or upper sleeve. It’s much

Vaccinations are vital to protecting not only your kids but other children in the community as well.

easier for kids to transmit a virus because viruses actually flourish in their bodies longer than in adults, and they produce significantly more virus copies than adults do. And unlike adults, who tend to move away from someone who is coughing and sneezing, children are less inclined to avoid sick people.

All kids get sick, but reminding them about better habits will improve everyone’s chances for a healthier winter.

For a video of Dr. Bell discussing influenza vaccines, go to childrensview.org.

Fall 2012 | Children’s vIew | 7

cover story

photo essay

James Connard, R.N., a nurse in the Evelyn and Daniel M. Tabas Cardiac Intensive Care Unit, with his patient, Dhillon Shah, 9

NURSING AT CHOP:

BY EUGENE MYERS AND JULIE SLOANE

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The Heart of Healing there are many metaphors you could use about our nurses:

they are the backbone of the hospital, the linchpin of ChoP’s familycentered care, the eyes that watch over all patients 24/7. But no matter how you express it, there is no doubt that ChoP’s 2,700 nurses are an indispensable part of what makes us the best children’s hospital.

The spectrum of nursing at CHOP is truly amazing. Nurses work in inpatient and outpatient settings, assessing patients, evaluating pain, administering medications, teaching families, securing smiles. They also ride in ambulances and helicopters, provide the first set of eyes in the Emergency Department, spend hours beside surgeons in operating rooms, volunteer in schools and homeless shelters, conduct groundbreaking research, promote patient safety and help educate the next generation of nurses. They are respected members of the healthcare team.

And they are the best. CHOP nurses have been awarded Magnet status from the American Nurses Credentialing Center, placing them among the very top nurses in the nation. Many have specialized expertise in fields like pediatric cardiology or oncology.

Our cameras followed nurses in numerous areas of the Hospital to capture the essence of what they do every day for the children and families under their constant care.

These photos offer glimpses into nurses’ many roles — at the patient’s bedside and beyond.

Fall 2012 | Children’s vIew | 9

cover story

Stephanie Haas, R.N., a nurse on 5 West, has a special bond with Eric Tran, 16 months, who has spent much of his life at CHOP.

top left:

Bottom Left: A nurse practitioner at the CHOP Care Network South Philadelphia practice, Rachel Cohen, C.R.N.P., reviews epinephrine autoinjector use with Rosanna Vinales, R.N. (center), and Julissa Del Valle, C.M.A. (right).

top Right: Each day, nurses teach classes at the Connelly Resource Center for Families to prepare families to care for children at home. Here, Linda Bevington, R.N., provides infant CPR training to Darnell Thompson, whose son is in the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit.

Cohen examines Aliyah Smith, 7. CHOP has more than 250 nurse practitioners like Cohen whose advanced degree allows them to diagnose and treat patients as well as prescribe medication.

bottom Right:

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Today, Deb Petrillo, R.N., is the charge nurse, making her like the air traffic controller of the operating room (OR) complex. She manages the flow of patients to and from the 18 ORs, minimizing wait times for both patients and staff.

Top:

center: Helen Lewis, R.N., sets up the operating room for a child’s hernia repair surgery, preparing the instruments and sterile supplies. On average, two to three nurses are in the OR for each surgery.

Jena Koury, R.N., readies an IV line in preparation for a knee surgery. She then helps the anesthesiologist administer medication while reassuring and calming the patient before his procedure.

Left:

Fall 2012 | Children’s view | 11

cover story

Above left: Karen Gee, R.N., comforts Nora Martinez, 5. Among their many duties, nurses in the Alex Scott Day Hospital assess children during routine checkups, provide acute treatments for pediatric cancer patients, and administer blood transfusions and chemotherapy.

Amy Ryan, R.N., with Malakiyah Johnson, 2, is one of 25 nurses in the Day Hospital and outpatient oncology clinic who manage an average of 50 to 70 patients daily.

They interact closely with physicians, nurse practitioners, social workers and Child Life specialists to care for patients and families during their visit.

Above Right:

Danielle Clerico, R.N., walks Steven “Ebo� Eberling, 16, to his inpatient room. Pediatric cancer patients coming to CHOP for inpatient treatment first visit the Day Hospital, where oncology nurses begin chemotherapy treatment until patients are transferred to the inpatient oncology unit.

Right:

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Mei Lin Chen-Lim, R.N. (left), Beth Ely, Ph.D., R.N. (center), and Denise Ciavardone, R.N. (right), discuss the results of a research study. Focused on the best preparation for a colonoscopy, the study will soon be published in a gastroenterology journal. Ely is one of 15 CHOP nurses to hold a Ph.D. and is one of three to focus on research full time.

Above left:

Nurses like Rachel Grabianowski, R.N., in the 26-bed Cardiac Intensive Care Unit (CICU) treat extremely ill children with heart conditions, closely monitoring their vital signs around the clock.

Here, Grabianowski draws an infant patient’s blood for a lab test.

left:

Chen-Lim and Ciavardone run through a research questionnaire with GI patient Travis Strominger, 15. Last year, CHOP nurses were principal investigators or co-investigators on 199 studies.

Above right:

Below: Steve Williams, R.N., watches over CICU patient Mia Grace Holmes, 9 months. Nurses in CHOP’s three intensive care units — Cardiac, Neonatal and Pediatric — are often assigned to just one or two patients at a time.

For more on nursing at CHOP, please visit childrensview.org.

Fall 2012 | Children’s view | 13

CHOP HELPS TEENS MANAGE A COMMON PROBLEM: STUTTERING “Dear stuttering,” began Alex Koenig’s letter. “Why are you always following me wherever I go? You are like a constant anchor on me, always holding me back.”

It was an exercise that Alex and 10 other teens completed this summer as part of a weeklong intensive stuttering workshop, the first program of its kind in Philadelphia, led by CHOP speech-language pathologists.

The anchor has weighed on Alex, 12, in subtle and not-so-subtle ways. For example, he plays lacrosse but stayed away from wrestling.

“Before the match starts, you have to say your name and weight,” he explains. “I was scared I’d stutter.”

For children who stutter, that type of simple conversation — ordering lunch, asking for directions, answering a teacher — can become the stuff of sweaty palms.

Stuttering is more common than most people realize, affecting 3 million Americans, or one in 100. It’s neither a behavior nor a tic; people don’t stutter because they are nervous. It is a neurodevelopmental disorder, meaning it is caused by structural and functional differences in the brain.

“That’s important to remember,” says CHOP speech-language pathologist Joseph Donaher, Ph.D., one of only 175 boardrecognized specialists worldwide in stuttering. “Think about someone with a seizure disorder — you’re not going to say to them, ‘Just stop seizing.’ But with someone who stutters, even though it is neurologically based, there is a perception that they can willingly stop it if they just slow down or use speech techniques.”

Donaher runs the Stuttering Program at CHOP’s Center for Childhood Communication, which provides diagnostic services, interventional therapy, and consultation for schools and communitybased programs. The summer workshop was created as a way to reach more kids at a time when insurance reimbursement is drying up for developmental conditions like stuttering.

The workshop put the teens through a wide range of activities, including researching the science of speech on the Internet, reflecting on stuttering in writing or artwork, and practicing everyday interactions that can be difficult or daunting. For example, they simulated ordering at a restaurant, then went to the CHOP food court and actually did it.

Well Said

BY MARK TURBIVILLE

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BELOW LEFT:

Alex Koenig (fifth from right) with the other stuttering workshop participants BELOW RIGHT: “We want kids to be effective Alex on a break from communicators, whether they stutter practicing lacrosse with or not,” says Donaher. “Techniques like his sisters, Sabrina, 16, you see in the movie ‘The King’s Speech’ and Ava, 7 can certainly help, but should the goal be 100 percent perfect speech — which is very hard or impossible for some of these kids — or better communication? We tell them stuttering doesn’t have to take away from the message.”

Each day, the program had a guest speaker who also stutters, including award-winning chef Marc Vetri, who provided financial support for the program along with the Cozen O’Connor Foundation and the Millard and Lillian Prutky Charitable Trust.

When he originally went into the kitchen, Vetri assumed he wouldn’t have to talk much. But making the best gnocchi on the planet attracted a spotlight, and soon he found himself doing TV and radio interviews, even appearing on (and winning) “Iron Chef America.”

“Be comfortable in your own skin,” Vetri told the kids. “Don’t let your stuttering change the way you live your life.”

The last day of the workshop incorporated parents and families.

“It was eye-opening,” says Alex Koenig’s father, Mark. “We had

been focused on Alex learning speech techniques, as if it was not OK to stutter. The workshop taught us instead to encourage him to say what he wants to say even if he stutters.”

“It also showed the kids they’re not alone,” adds Alex’s mom, Victoria.

Many of the teens came to the CHOP summer program with heads down and headphones on. By day two they were laughing together, trading texts and forging new social networks.

“It was cathartic,” says Donaher. “All of a sudden kids who never talk about their stuttering, who hate talking, get to hear other kids who are going through the same thing.”

Donaher and his team are already looking ahead to next year.

“Our hope,” he says, “is to secure grants or donors so that cost won’t be an issue for more families to come.”

Alex is looking ahead, too. After voicing his reluctance to wrestle, he has decided to try out after all: “I think it’s easier for me to stutter now, and I think I can achieve whatever I want to.” Well said.

To read a Q&A with Joe Donaher about stuttering, visit childrensview.org.

It was eye-opening,” says Alex Koenig’s father, Mark. “We had been focused on Alex learning speech techniques, as if it was not OK to stutter. The workshop taught us instead to encourage him to say what he wants to say even if he stutters.

Fall 2012 | Children’s vIew | 15

After two agonizing years, CHOP gave my son his life back.

BY WENDY WECKSTEIN

Conquering the Worst Pain It was a beautiful September evening in northern Michigan.

The school year had just begun and my 13-year-old son, Devin, was invited by his older brother to attend the big high school soccer game between our two small town rivals. Devin was thrilled and raced into the kitchen to ask if he could go. Overjoyed by his brother’s kindness, I responded, “Sure, have a great time!”

Unfortunately, while Devin was cheering for the home team perched upon his brother’s shoulders, the crowd became exceptionally rowdy, and he fell. Devin landed on hard packed soil, directly on his tail bone.

Little did I know this minor injury was going to drastically change the course of Devin’s life.

The following day, Devin’s pain was significant and he could barely put weight on his right leg. A local doctor diagnosed him with a bruise to his lower spine.

He was put on pain medicine and we were told it should get better within six to 10 weeks. But instead, his pain got worse and Devin became more disabled with each passing day. Soon the pain spread to his entire leg, and the slightest touch caused it to skyrocket out of control. Our straight-A student now could barely function in school because the pain was so bad.

I spent two years traveling with Devin from coast to coast, desperately seeking a cure. He was eventually diagnosed with complex regional pain syndrome (CRPS), a rare neurological pain disorder characterized by a constant burning, agonizing pain that typically starts after a minor injury. As the injury heals, the pain takes on a life of its own with the nerves continuing to send rapid and aggressive signals to the brain in a powerful pain loop.

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David Sherry, M.D., in the GIANT Food Stores Physical Therapy Gym at Children’s Seashore House

Photos of Devin taken during his therapy at CHOP, posing with his favorite therapists and celebrating his victory over pain at the Rocky statue.

We saw 14 different specialists in CRPS, but many of the treatments did more harm than good. He went through 15 trials of strong pain medication; spent four weeks in intensive care units receiving spinal blocks, catheters, IV’s and infusions of the hallucinogenic drug ketamine; and received a surgical spinal cord stimulator implant. We were desperate to end his agony.

Thankfully, we heard about The Children’s Hospital of Philadelphia and Dr. David Sherry’s Amplified Musculoskeletal Pain Syndrome (AMPS) Program, which treats children who suffer from a variety of pain syndromes, including CRPS. Devin spent five of the most difficult weeks of his life in this program at CHOP, pushing himself to move and exercise through the pain until his nervous

two grueling weeks, the pain had gotten even worse.

But just as Dr. Sherry predicted, Devin’s strength and stamina increased and his pain began to lessen.

At the end of week three, he told me he had jogged a short distance. I could hardly believe my ears! It was something he hadn’t done in two years.

By week four, he was able to run on the treadmill for 18 minutes at a 22 percent incline and run those five flights of stairs in one minute and 37 seconds.

After two horrific years of suffering, Dr. Sherry, his nurse Deb and all the wonderful therapists gave my son his life back!

Through everything, in spite of tears and agony, Devin never said, “I can’t.” He worked extremely hard to climb his personal mountain. After our final hugs

Devin became more disabled with each passing day.

Soon the pain spread to his entire leg, and the slightest touch caused it to skyrocket out of control. system essentially reset itself. He received physical, occupational and pool therapy six hours a day. Instead of medicine and surgeries, he walked, biked and strength trained.

At first, he could last only 16 seconds on the treadmill, walking at the slowest speed. It took him 14 minutes to go up and down five flights of stairs.

Each day when I picked him up, he was so sweaty and red that it looked like he’d run a marathon. After

and goodbyes, we drove to the famous “Rocky” steps at the Philadelphia Museum of Art. Devin ran to the top. As he reached the last step, he gave a huge smile and threw his fists up over his head like Rocky.

Dr. Sherry has helped more than a thousand children become pain-free through this innovative program.

He also gives them the tools to eradicate the pain should it return. After his painful journey, Devin now knows he can fight any adversity life throws his way.

thE aMPs PrograM is EXPaNdiNg! Thanks to a generous gift from Tina Snider, whose daughter also successfully completed Dr. Sherry’s program, the Amplified Musculoskeletal Pain Syndrome Program will be expanding its staff, research, and fellowship trainees in the coming years. And as one of CHOP’s pain management programs, it will be a beneficiary of the 2013 Daisy Day Luncheon, to be held in May.

To learn more about Devin’s successful journey and to read an excerpt of Wendy’s book,“The Burning Truth,” visit childrensview.org.

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High-Fat & s

BY EUGENE MYERS

A diet of rich foods like

cream, butter & bacon is helping kids control epilepsy

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Today, 9-year-old Korey Walton’s lunch is three small logs of cream cheese wrapped in deli ham, a glass of 6 percent heavy cream fortified with canola oil, and two Goldfish crackers. He grimaces as he slurps the last few drops of pure oil through a straw, but he eats it all without complaint. This strange diet has given him his life back.

(specially donated by Wawa to CHOP families) and often stars ingredients like cream, mayonnaise, eggs, butter, nuts, soy and oil.

Restaurants, pizza parties and trips to the ice cream parlor are out of the question for “keto kids,” which is tough to handle.

But Korey’s diligence is paying off. Now eight months into his three-to-five-year treatment plan, he has only a few mild seizures a

seizure-Fre Korey has epilepsy, one of the most common brain disorders in children, but his treatment is unusual: a diet of exactly 90 percent fat, 7 percent protein and 3 percent carbohydrates. It’s called the ketogenic diet — similar to an extreme version of the Atkins diet — and it has proven surprisingly effective for children whose epilepsy does not respond to medication.

The human body prefers to get energy from carbohydrates like those found in starchy, sugary foods, but if deprived of carbs, our bodies will burn fat for energy instead. The ketogenic diet, developed almost a century ago, essentially leaves the body in full-time fatburning mode. As a result, the body’s chemistry changes in complex ways that help inhibit seizures. Most patients who stick to the diet show dramatic cognitive improvement and halve their number of seizures. Medications can be reduced or discontinued. Some kids even are cured completely by the diet. But there can be no cheating: A little off-diet lick of sugar or a nibble of bread could immediately trigger a seizure.

“Seventy percent of children with epilepsy can control their seizures with medication,” says Christina Bergqvist, M.D., director of the Dietary Treatment Programs for Epilepsy at CHOP. “But once a medication stops working, the chances that any of the other standard epilepsy drugs will work becomes quite small.”

When that happened for Korey, and he was experiencing as many as 50 seizures a day, Bergqvist recommended the ketogenic diet.

Although wary of the amount of work, the Waltons were willing to try. Without it, Korey was at the mercy of the seizures, which could strike at any time, causing severe headaches, blanking out and other difficulties.

Korey was admitted to CHOP for five days while Bergqvist, along with dietitian Cagla Fenton, R.D., C.D.N., and nurse Claire Chee, R.N., gradually shifted him onto the ketogenic diet. Everything Korey eats is measured. He gets exactly 2,088 calories a day and takes supplementary vitamins to round out his diet. Almost every meal involves drinking heavy cream

aBovE, lEFt to right: Korey with Claire Chee, R.N.; two Goldfish crackers

are Korey’s carbohydrate treat for the day.

week and is being weaned from two medications.

“He’s much more alert, a whole different kid,” says his mother, Dawn. “We have our son back.”

To help families like the Waltons succeed on such a laborintensive and unusual diet, the dietary program staff provides recipes and advises them on cooking ketogenic meals for even the pickiest eaters. A handbook includes recipes for how to make waffles from ground pecans and oil, and a pizza that is 90 percent fat — one of Korey’s favorites.

“When I walked out of the class, I thought, ‘I don’t know if I can do this. I don’t know if Korey can do it,’” says Dawn. “But make it a family affair, and it works.” As the youngest of eight, Korey has plenty of siblings supporting him and cooking his meals.

The Waltons are so grateful for the care they’ve received at CHOP, they have raised more than $26,000 from family and friends to build a kitchen at the Hospital so that parents can practice preparing meals under supervision. When construction is complete, it will be the first ketogenic kitchen in the country.

“It’s not just for Korey, it’s for everybody who’s going to take the same journey,” Dawn says.

Want to see Korey’s favorite ketogenic recipes?

Check them out at childrensview.org, where you can also make a donation to Korey’s Ketogenic Kitchen Krusade.

Fall 2012 | Children’s vIew | 19

volunteers in philanthropy s ig natu re eve nts

Fo u r S eas o ns Parkway Ru n & Walk On Sept. 30, 9,000 people turned out at the Benjamin Franklin Parkway in Philadelphia for the Four Seasons Parkway Run & Walk. The event is the largest annual fundraiser for the Cancer Center and this year raised more than $850,000 for cancer research and survivorship programs at CHOP. Philadelphia Phillies AllStar pitcher Cliff Lee and his wife, Kristen, served as Honorary Chairs, and the Winner’s Circle sponsor was Philadelphia Insurance Companies and The Grainger Foundation.

Blue Tag Gala On Sept. 8, 300 guests attended the 2012 Blue Tag Gala at the Hyatt at The Bellevue in Philadelphia. The event raised more than $150,000 to benefit the Sickle Cell Center at CHOP — a record for the event. Guests enjoyed the evening with dinner and dancing.

The featured speaker was Kim Smith-Whitley, M.D., director of the Comprehensive Sickle Cell Center. Darlene Logan and Steven Sanders were co-chairs of the event, and Judith Royal was its vice chair. Nana Kwabena Tuffuor shared his patient experience.

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volunteers in philanthropy s ig natu re eve nts

C HO P g O lF C lass iC On June 18, the 12th annual CHOP Golf Classic at Seaview Golf Resort in Absecon, N.J., raised $210,000 to support patient care programs at Children’s Hospital. Turner Construction returned as the presenting sponsor.

The Lynn Saligman League hosted the tournament.

9 8 . 1 WO g l lOves O u r ki Ds raD i Ot H O n On Sept. 5 and 6, the 11th annual 98.1 WOGL Loves Our Kids Radiothon broadcast stories of hope and courage, ultimately bringing in $658,000 for patient care programs. Since 2001, this event has raised more than $5.5 million for CHOP.

JANUARY 18, 2013 Pennsylvania Convention Center, Philadelphia

Benefiting the Division of Gastroenterology, Hepatology and Nutrition

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K’NEX Check Presentation April 6, CHOP, Philadelphia • K’NEX presented a check for more than $20,000 to support pediatric gastroenterology research.

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The Coach Wags Memorial Foundation Dancin’ Thru the Decades April 21, Bogey’s Club and Café, Sewell, N.J. • This evening of dinner and dancing raised more than $10,000 to fund the Cellie cancer coping kit.

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Christopher Court Foundation and Tsunami Karate Kick-a-Thon April 28, Tsunami Karate, Perkasie, Pa. • The kick-a-thon in memory of Christopher Court raised $13,000 for neuro-oncology research.

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The Matthew Renk Foundation Think GREY Day May 4, Central Bucks School District, Doylestown, Pa. • In memory of Matthew Renk, students wore “think GREY” T-shirts to raise awareness of brain cancer and raised $2,000 for the social work emergency fund in oncology.

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Brendan’s Believers Clam Jam for CHOP May 12, Hickory Park, Chester Springs, Pa. • In partnership with the Downington East Football Association, the clam bake raised $15,000 for the Brendan Bovard Brain Tumor Research Fund at CHOP.

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Food Phight 5K May 18, West Chester, Pa. • This 5K run, hosted by the Harris family, raised more than $60,000 for the Center for Pediatric Eosinophilic Disorders.

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Oak Hill Fun Run and Spring Fair May 19, Oak Hill Elementary School, Severna Park, Md. • The event raised more than $1,000 for lung transplant research.

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1000 Miles for Kids June 1, CHOP Main Entrance • Eddie Applebaum, Dan Marion and Michael Wolff bicycled from Philadelphia to Orlando, Fla., in memory of Noy Raz, raising $3,378 to support Children’s Miracle Network at CHOP.

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Peyton’s Promise June 9, 43rd and Promenade, Sea Isle City, N.J. • The fourth annual 5K run/2K walk in honor of Peyton Laricks raised more than $38,000 for congenital diaphragmatic hernia research.

Gelatin Olympics June 13, Cannstatter Volksfest-Verein, Philadelphia • The 19th annual event, sponsored by the American Heritage Federal Credit Union with the Kids-N-Hope Foundation, raised $25,000 for Children’s Seashore House at CHOP.

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Making Miracles Happen Golf Outing Presented

by MAACO Franchising June 13, Spring Ford Country Club, Royersford, Pa. • Maaco Franchising Inc.’s annual golf outing raised more than $110,000 to benefit Children’s Miracle Network at CHOP.

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Philadelphia Insurance Triathlon June 23 – 25, Fairmount Park, Philadelphia • The eighth annual event raised more than $115,000 to benefit CHOP’s Cancer Center.

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St. John’s UMC Young Adults Mini Choppers Bike-a-Thon June 23, Stewart Park, Harrisonville, N.J. • The event raised more than $2,500 for cancer research.

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Our Family Foundation Golf Outing July 16, Various golf courses in Pennsylvania • Giant’s Our Family Foundation golf outing and paper icon sales raised $886,000 for Children’s Miracle Network at CHOP.

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Police vs. Fire Regional Rowboat Face-Off July 7, Independence Seaport Museum, Philadelphia • The Philadelphia Police and Fire Departments teamed up for a rowboat competition benefiting several charities, including the Center for Autism Research.

Event sponsors included the Police and Fire Federal Credit Union and Safeware Inc.

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Miracle Treat Day July 26, Participating Dairy Queens • Dairy Queen locations distributed free Blizzards in exchange for a donation to Children’s Miracle Network at CHOP.

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Philadelphia’s Most Photogenic Baby July 29, Franklin Mills mall, Philadelphia • This “cutest baby contest” raised $4,500 for Children’s Miracle Network at CHOP.

Let Your Legacy Be the Gift of Childhood Sophia

Age 5 | Oncology

Our care, our research, our teaching.

They all rely on gifts from Children’s Hospital supporters, now and in the future.

Many of the most important and enduring gifts to CHOP have been legacy gifts.

Including Children’s Hospital in your will, or as a beneficiary of a retirement plan, is one of the easiest ways to invest in the health and well-being of future generations of children. These gifts won’t affect your current cash flow and may even help reduce taxes for loved ones.

If you have already made a planned gift to CHOP, thank you, and please let us know. We can help you designate your gift to a specific Hospital program, and we’ll invite you to join the Lewis Society, a select group of supporters who have included Children’s Hospital in their plans.

Visit us at giftofchildhood.org/plannedgiving to learn more, or contact Tom Yates, director of planned giving, at 267-426-6472 or yatestg@email.chop.edu.

Gift of Childhood.org/plannedgiving

GiftofChildhood.org

Please recycle. Children’s View is printed on 55 percent recycled paper and 30 percent post-consumer waste paper.

Hope lives here.

Name Because our doctors successfully treat the worst childhood diseases.

Because our scientists make discoveries that save kids’ lives.

Because someone like you took a moment to give.

Luanni

Age 11 | Ophthalmology and Day Medicine