Never-Give-Up Kid the Ketogenic Dietcan Elliott Vichinsky, MD
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SUMMER 2007 ALSO INSIDE: Hevanne is the Elliott Never-Give-Up Vichinsky, MD Kid A physician’s path to becoming A little boy with a big heart Hem/Onc medical director was problem beats the odds inspired by ‘60s idealism When meds can’t control intractable epilepsy, maybe the ketogenic diet can 2 CHILDREN’S HANDPRINTS table of contents 17 The diet that cures When medications can’t stop seizures, sometimes the ketogenic diet can. At left, Niko, in orange, is now seizure free thanks to the ketogenic diet. 3 DEAR READER Letter from the president 4 THIS AND THAT Little People, Big World comes to Children’s Cable TV show features a Children’s orthopedic physician. James Betts, MD, wins Bronze Bambino “He’s the best trained anything I know in surgery,” said C. Everett Koop, MD, former surgeon general of the United States, about Dr. Betts. The never- Children’s doctors on tour When Children’s specialists talk at area CME lectures, other physicians listen and take notes. give-up kid Physician liaison joins Children’s family Malia Hansen reaches out to help community doctors feel at home at Children’s. 10 Born with a major heart defect and placed for adoption, 7 IN THEIR OWN WORDS: JAMIE NUTILE there was little reason to believe Becoming a butterfly A mom writes about her daughter Alicia’s Hevanne would make it. journey to recovery after severe bites from the family dog. Her daugh- ter’s grace and spirit teach all who meet her the meaning of courage. 14 FEATURE: NEURO-ONCOLOGY Running The bounce-backer Janessa’s adventurous spirit and positive atti- again tude see her through a knock-down, drag-out battle with brain cancer. 21 PHYSICIAN PROFILE: ELLIOTT VICHINSKY 25 Competitive youth From Brooklyn to bedside Elliott Vichinsky, MD, found a way soccer player Andrés Jankowski to combine a love of science and a desire to serve people through survived a car accident that medicine. He’s excelled at both, learning and applying ways to help nearly cost him a leg. Now he’s children with blood diseases. back on the field and playing better than ever. 28 CHILDREN’S HOSPITAL & RESEARCH CENTER FOUNDATION Click here to support Children’s Hospital Donating via the Web has never been easier. Save time and stamps by giving to Children’s Hospital’s foundation at www.chofoundation.org/donate. Discover treasures at The Bambino Search for undiscovered On the cover Charlie Cleberg joins his treasures at a thrift shop run by Branches volunteers that raised more parents in a thumbs- and “toes-up” for the than $100,000 for Children’s Hospital last year. ketogenic diet that helped him become seizure From fear to financial freedom After a difficult childhood, Marge free. Brain bleeds after Charlie’s premature birth Hayden found freedom from agoraphobia through self-sufficiency as a left his arms paralyzed; now he does everything dog groomer. To help other struggling children, she gave a generous with his feet. Photo by Tom Levy. gift to Children’s Hospital when she retired. SUMMER 2007 3 Children’s HandPrints is a publication of Children’s Hospital & Research Center Oakland, 747 52nd Street, Oakland, CA 94609; 510-428-3000. Written, designed and produced by: Communications Dept. Children’s Hospital & Research Center Oakland 665 53rd Street, Oakland, CA 94609 Phone: 510-428-3367 Fax: 510-601-3907 Frank Tiedemann Dear Reader: President and Chief Executive Officer Mary L. Dean The first months of the year usually bring rain to northern California Senior Vice President, External Affairs and more patients than usual to Children’s Hospital. This winter was Tina Amey different though, bringing little rain to the region, but a flood of patients Receptionist to Children’s and our busiest January ever. Debbie Dare We’re never happy to see a sick child; but when kids need great Senior Graphic Designer healthcare, the team at Children’s is proud to provide it. Our combination Susan Foxall of state-of-the-art facilities, unwavering focus on pediatrics and Project Manager extraordinary caregivers makes Children’s second to none in northern Tom Levy Senior Writer California. Venita Robinson One such caregiver is Elliott Vichinsky, MD, medical director of Director, Media and Community Relations Children’s Hematology/Oncology team. In this issue we profile his Gary Turchin exemplary work as clinician, researcher, leader and mentor. Writer Other stories in this issue illustrate not only our excellence and range Diana Yee of services, but the wide sweep of geography we serve. Media Relations Specialist Hevanne, who underwent several surgeries to repair a congenital heart defect, is back home in Manteca. Janessa, a two-time cancer Board of Directors survivor, is again adding pictures to her photo album in Benicia. And in Harold Davis, Chair Berkeley, Andrés is back on the soccer field, helping his team score goals Jeffrey Cheung after recovering from two severely broken legs. Arthur D’Harlingue, MD Pursuing excellence at Children’s includes the search for better Arnold Grisham treatments. Our page 17 story looks at the ketogenic diet, an unconven- James Keefe Watson Laetsch, PhD tional treatment for intractable epilepsy that helped Children’s patients Michael LeNoir, MD Niko and Charlie become seizure free. Their parents did their part too, Barbara May working with experienced Children’s caregivers to help the boys recover. Melba Muscarolas To all those in the community supporting Children’s Hospital— Howard Pien especially our generous donors—thank you. Lloyd Takao, MD Frank Tiedemann Gene Upshaw Harold C. Warner, PhD Frank Tiedemann President and Chief Executive Officer Story requests, comments or suggestions for Children’s Children’s Hospital & Research Center Oakland HandPrints may be emailed to [email protected] or sent to 747 52nd Street, Oakland, CA 94609. 4 CHILDREN’S HANDPRINTS this this this this this this this this this ANDthat ANDthat ANDthat ANDthat this ANDthat ANDthat ANDthat ANDthat ANDthat ANDthat ON LOCATION: [Left] Amy Roloff (center), Zach’s mom, consults with orthopedic nurse clinician Michael Syberg, RN, (left) while the Little People, Big World cameras roll. [Right] Dr. Hoffinger and his TV-star patient meet in the Outpatient Center. viewers awake and interested. All is being revealed in a series of TV SHOW The Roloffs, many of whom episodes on this season’s Little People, are short of stature, were concerned Big World, on Monday nights at 8 p.m. Little People, that Zach’s legs were affecting the Stay tuned. # 16-year-old’s soccer game. Orthopedic Big World complications are not unusual in comes to people with disproportionate AWARD dwarfism. The exam, which took Children’s place in a hotel room at the Little James Betts, Cable TV show features a People’s Annual Convention, was Children’s orthopedic followed by a journey from the MD, wins physician. Roloffs’ Oregon ranch to Children’s Bronze Hospital & Research Center Oakland, When Scott Hoffinger, MD, first to see Dr. Hoffinger again. A camera Bambino consulted with the Roloff family about crew traveled with them. Longtime Children’s their son Zachary’s bowed legs, the Dr. Hoffinger, chief of Children’s teenager fell asleep in the middle of Orthopedics department, recommend- physician is honored. the exam. Fortunately, the trials and ed straightening Zach’s right leg. He In 1989, James Betts, MD, made tribulations of Zach and his family, performed the surgery in December. national news when he performed sur- stars of TLC TV’s reality show Little In February, Zach’s cast was removed. gery on a patient under the collapsed People, Big World, have kept lots of TV Everything looks great. Cypress Freeway following the Loma www.childrenshospitaloakland.org SUMMER 2007 5 this this this this this this this this this ANDthat ANDthat ANDthat ANDthat this ANDthat ANDthat ANDthat ANDthat ANDthat ANDthat LECTURE SERIES Children’s doctors on tour Children’s physicians are reaching out to community physicians with a year-long lecture series. When Jenny Thomas took her son Lucas for a check-up, the pediatrician noticed a subtle abnormality in the boy’s gluteal fold (buttocks crease). The doctor recalled seeing a picture like it in a class, and knew it needed to RECOGNIZING AN AMAZING DOCTOR: Dr. James Betts was chosen by his peers be examined by a specialist. He to receive the 51st Bronze Bambino award. referred Lucas to Peter Sun, MD, Neurosurgery director at Children’s, where an MRI revealed a tethered spinal cord. Prieta earthquake. It was no surprise to Vermonter, Dr. Betts has maintained a Dr. Sun repaired the cord, and those who know him. Dr. Betts has close connection to his alma mater. In Lucas, 4, is fine. But it’s a good exam- devoted much of his career at 2003 he received the College of ple of why physicians need to stay up- Children’s Hospital & Research Center Medicine’s A. Bradley Soule Award for to-date and informed. Oakland to trauma and trauma loyalty and dedication to the School of That’s why Children’s launched its patients. Medicine, and in 2004, he was named 2007 Physician Lecture Series in For a lifetime of dedicated service to a six-year term on the university’s January. The year-long series of talks, to the well-being of children and an board of trustees. 20 in all, rotate through Modesto, unselfish devotion to Children’s After receiving his medical degree Stockton, Tracy, Pleasanton, Walnut Hospital, Dr. Betts was given the 51st he completed residencies in urology Creek and Fairfield. They are designed Bronze Bambino award at March’s and surgery at Case Western Reserve in to provide community physicians annual Medical Staff Dinner.