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K. HOvnanian cHildRen’S HOSPital Family Facing Rare health Challenges Finds Strength, Hope at K. Hovnanian Children’s Hospital With three of their children facing difficult diagnoses, the Schuller family relies on the caring people of K. Hovnanian Children’s Hospital for their health needs. Clockwise from top left: Corie, GeorgiaRee, MaryLou, Hudson, Alexis, Wyatt, and Carson. PrECious lungs BrEAtHE EAsiEr Advanced technology helps pediatric specialists diagnose and treat children with serious lung conditions like asthma and cystic fibrosis, also known as cF. At K. Hovnanian children’s Hospital, patients have access to the region’s only niOX machine. niOX measures exhaled nitric oxide gas, which gauges airway inflammation. “it helps us safely wean children with asthma off steroids,” says pulmonologist charles Dadzie, m.D. impulse oscillometry, which assesses airway blockages with sound waves, is also employed. “it helps us diagnose diseases such as cF and asthma, and lets us see how well medications are working,” says Dr. Dadzie. MaryLou Schuller and her husband, Corie, already knew too much about cystic fibrosis (CF). In January 2007, they found out the youngest of their five children, GeorgiaRee, had the life-threatening genetic condition in which thick mucus builds up, lining both lungs and intestines. They also knew plenty about neurofibromatosis, a genetic condition that generates noncancerous brain and nerve tumors. Their then-2-year-old son Hudson had just been diagnosed with the rare condition. But nothing could have prepared the Brick residents for the news they got that same month: Their oldest child, Alexis, then 9, also had CF. Besides having a chronic cough since age 3, Alexis never had been diagnosed with anything more than potential allergies and asthma. She had been considered healthy, like her brothers Carson and Wyatt. When MaryLou heard that Alexis’ low weight and persistent breathing troubles were the result of CF, “everything changed,” she says. “You completely replan your life. Fortunately, I can bring all my children to K. Hovnanian Children’s Hospital for the care they need.” a QuiCk-thinking physiCian GeorgiaRee was diagnosed with CF when she tested positive for a suspicious blood enzyme through state-mandated newborn screening not available when Alexis was born. MaryLou insisted on K. Hovnanian Children’s Hospital (KHCH) for her treatment. She was already familiar with KHCH: In Alexis’ infancy, pulmonologist Charles Dadzie, M.D., had diagnosed her sleep apnea, which had been causing her to stop breathing while she slept. Dr. Dadzie also diagnosed her gastroesophageal reflux disease, or GERD. When MaryLou brought GeorgiaRee in, Dr. Dadzie asked her about the health of her other children. She mentioned Alexis had a chronic cough, continual stomach distress, was underweight for her age, and was being treated for asthma. “I thought, ‘Uh-oh,’” says Dr. Dadzie, the hospital’s director of Pediatric Pulmonology and Critical Care. “Sometimes CF is misdiagnosed.” Dr. Dadzie gave Alexis the sweat test, the gold standard in CF testing, in which arm patches record levels of sodium and chloride in the sweat. Alexis was positive. Follow-up genetic blood tests confirmed the condition. team Care, teChnology improve life eXpeCtanCy Until the 1980s, most people with CF did not survive their teenage years. They suffered from breathing problems, digestive difficulties, and frequent bacterial infections that develop in the thick mucus. Even today, there is no cure. But improved diagnostic tests, treatment advances, and the skilled care of physicians like Dr. Dadzie are helping many CF patients live well into adulthood. A team approach to care is critical. Because CF affects the intestines and pancreas as well as the lungs, nutrition is especially important. So Alexis and GeorgiaRee’s KHCH–based care team includes Ivan Darenkov, M.D., a pediatric gastroenterologist, and Tracy Powers, a dietitian with CF training. These specialists 4 Meridian Health | MeridianHealth.com | 1-800-doCtors 6116M B OMC 2_09 p1.indd 4 1/26/09 11:13:50 AM
about the Doctors Charles K. Dadzie, M.D. Board certified in Pediatrics, Pediatric Critical Care Medicine, and Pediatric Pulmonology Neptune | 732-776-4268 Richard I. Sultan, D.O. Pediatric Neurology Neptune | 732-775-2400 help make sure GeorgiaRee and Alexis get adequate nutrients from their food. Since her diagnosis, Alexis uses a special vibrating vest and a series of inhaled medications twice a day, every day. Inhalation of an antibiotic, tobramycin, is added every other month to clear her lungs of bacteria. She must sit for at least 45 minutes morning and evening, which isn’t always easy for the 11-year-old, “who remembers being normal,” says MaryLou. “I’m proud of her for adjusting to the changes. Her father and I think she’s amazing.” Using this breathing regimen, along with specialized digestive enzymes administered under Dr. Darenkov’s watchful eye, Alexis has gained 10 pounds. “She looks like a completely different person,” MaryLou says. Comprehensive Neurologic Care for Her Son Meanwhile, MaryLou also brings Hudson to K. Hovnanian Children’s Hospital every three months. Hudson visits neurologist Richard Sultan, D.O., director of Inpatient Pediatric Neurology, for regular review of his neurofibromatosis. Hudson was diagnosed through dark patches on his skin called café au lait spots, which appear after birth and are characteristic of the disease. Café au lait spots can appear in children without the disease, too. But when several are present, physicians typically check to see if neurofibromatosis is the cause. The condition can be inherited, but, Dr. Sultan explains, “as many as half of all cases are caused by a sudden gene mutation we don’t yet understand.” When Hudson was diagnosed, Dr. Sultan mapped the locations of his tumors to watch whether or not they grow or spread. Depending on their locations, neurofibromatosis tumors can threaten sight, hearing, and vital organs. An oncologist also may be consulted in neurofibromatosis treatment, particularly if tumor removal is required. Santhosh Eapen, M.D., a pediatric endocrinologist at the Children’s Hospital, also will follow Hudson’s case to help ensure he grows normally in spite of his tumors. An Office of Angels Children like Hudson require routine follow-up, but most go on to lead normal lives. The Schuller girls require more constant attention. But to have one family facing both illnesses is nearly unheard of, agree all three physicians. MaryLou says that the diagnoses “still break my heart every day.” But she says KHCH staff, and Dr. Dadzie’s team in particular, help the family navigate medical and emotional challenges. “Dr. Dadzie, his nurse Rosie, and secretary Marilynn are angels,” MaryLou says. “They return my calls immediately, because they understand how important it is to get answers when you have a child with CF. “If I can only let one other parent know help is available at K. Hovnanian Children’s Hospital, I will. For all my children, I have no reason to go anywhere else. I thank each and every one of the physicians at K. Hovnanian for the wonderful care they give all my children.” • three steps to helping Your Child take Daily Medication Keeping track of daily medications for a child can be overwhelming. But it’s not uncommon. According to a recent Department of Health and Human Services survey, 10.2 million children younger than 18 have special health care needs. And of those children, 86 percent need prescription medications. These suggestions can help: 1 Make your child part of the process and share responsibility. As your child gets older, allow him or her to take on more responsibility for taking medication. 2 Create a pill card or poster — a visual way to show all the medicines your child needs to take each day. Because a pill card can be big and colorful, you can easily involve your child in its creation. Visit ahrq.gov/qual/pillcard/pillcard.htm for examples and more information. ❯ the skills you need Skilled medical management helps children with chronic conditions like CF, asthma, and neurofibromatosis live healthier, more active lives. For more on K. Hovnanian Children’s Hospital pulmonology and neurology, log onto KHovnanianChildrensHospital.com. Choose “Services,” then “Pulmonology and Asthma” or “Neurology and Epilepsy.” 3 Use a weekly pillbox. Sold at most drugstores, these boxes allow you to sort medications by each day of the week. Allow your child to help you sort them. Meet the team! See page 25 to find out more about Doctor Bernard and the whole Pawsitive Action Team! 5 Meridian HealthViews March/April 2009 6116M B OMC 2_09 p1.indd 5 1/26/09 11:14:04 AM
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