Two years ago, 8-year-old Isabella Shugarman was stricken with a mysterious gastrointestinal illness.
After waiting several days for the condition to improve, Isabella’s family sought help for her at Miller Children’s Hospital Long Beach. It was only then that the Shugarmans learned how important having a “medical home” is for a child with a complex, chronic condition.
“A medical home isn’t a house or hospital—but a philosophy of care,” says Barry Steinmetz, M.D., a renowned pediatric gastroenterologist and careline director of Miller Children’s Hospital Long Beach Outpatient Specialty Centers. “It’s based on a partnership between the patient, family, physician and care team. It ensures that children with chronic illnesses experience the best outcomes by receiving continuous, coordinated medical treatment. ” This includes evaluations and treatment by a team of specialists who coordinate their efforts and are in constant communication.
Isabella’s problem was triggered by a case of the flu in the fall of 2009. Like many kids, she got sick at the height of the H1N1 pandemic, exhibiting classic flu-like symptoms. But unlike her friends, she didn’t bounce back right away. Instead of getting better, she developed alarming bouts of daily vomiting and abdominal pain, especially after meals.
Isabella had experienced similar symptoms before, but according to her mom, Annie, a pediatric physician’s assistant, the post-flu episodes were far more frequent and severe. Concerned, Annie contacted Dr. Steinmetz. He suspected that Isabella’s problem was the result of acid reflux. This occurs when stomach acid backs up into the esophagus—the tube that connects the throat and stomach. “Most adults experience acid reflux now and then,” says Dr. Steinmetz. “But a surprising number of kids have this problem, too.”
A Gentler Approach
When an over-the-counter medication failed to improve Isabella’s symptoms, Annie scheduled a formal consultation with Dr. Steinmetz. “It was an incredibly thorough exam,” she recalls. “Dr. Steinmetz asked Isabella very specific questions, but he always spoke at her level.” Isabella also underwent several tests, including an endoscopic exam of her upper digestive tract and an intraesophageal pH probe test, which records each episode of acid reflux that occurs in a 48-hour period. Although the pH test is often performed using a thin tube threaded through the nose into the esophagus, Miller Children’s doctors take a gentler approach.
Instead of a tube, a tiny chip is placed in the esophagus. The device sends information about acid levels to a small receiver. After a week or so, the chip detaches and is naturally eliminated from the body. “The chip is much more comfortable and discreet than other monitoring systems,” Dr. Steinmetz says. Miller Children’s is one of the few hospitals in the area using this technology.
The test confirmed that Isabella had gastroesophageal reflux disease (GERD)— a severe, chronic form of acid reflux. The most common cause is a problem with the lower esophageal sphincter, a band of muscle around the bottom of the esophagus. Normally, the muscle relaxes to allow food and liquids into the stomach, then closes tightly. But if the valve weakens or opens at the wrong time, stomach acid can flow into the esophagus.
Because GERD can cause serious complications in children, including aspiration pneumonia and failure to thrive, Dr. Steinmetz wanted to treat Isabella aggressively. However, medications, along with a strict diet, failed to improve her symptoms. “At that point, she’d lost weight and was missing a lot of school,” Annie says. The anti-reflux diet was also frustrating. She had to avoid onions, garlic, acidic foods such as tomatoes and—hardest for a preteen—chocolate. “We created lots of great alternatives for her, though,” notes Annie.
The next step was adding another medication to Isabella’s regimen. She improved for a while, but then some symptoms returned. That’s when Dr. Steinmetz referred Isabella’s parents to Nam Nguyen, M.D., medical director of pediatric surgery at Miller Children’s Hospital Long Beach.
“We always try conservative measures first,” Dr. Nguyen says. “But when these don’t help, surgery to tighten the esophageal sphincter is an option. We perform the operation—called Nissen fundoplication—using minimally invasive techniques so young patients recover more quickly and easily.”
Isabella’s two doctors consulted extensively about her case. For the best outcomes, it’s essential that surgeons and medical doctors collaborate, especially in complex situations such as Isabella’s. At Miller Children’s, 750 pediatric physicians, including doctors from more than 30 subspecialties, work together to ensure the best care for each child.
After weighing the options, it was decided to give the medication more time. This proved to be a good decision. In April 2010, the new drug started working, and Isabella got progressively better. By August, she was able to stop taking the strongest of her medications and gained back her lost weight. But she remains on a restricted diet and will continue to be evaluated and treated for her condition indefinitely. Some flare-ups are anticipated, but with the help of specialists at Miller Children’s— Isabella’s medical home—she’ll be able to control and manage her chronic condition. “I trust Miller Children’s completely,” says Annie. “We couldn’t have gotten the same expertise and attention anywhere else.”
Dr. Steinmetz explains that many illnesses present differently in children than in adults, and pediatric specialists can often find answers other doctors may miss. “Kids whose medical home is a children’s hospital receive comprehensive specialty care from doctors devoted exclusively to their unique needs,” he says.
For Isabella and other Orange County children, that care is now closer to home. In October, a Miller Children’s Outpatient Specialty Center opened on the campus of Orange Coast Memorial. The new satellite location offers pediatric care in cardiology, orthopedics, infectious diseases, gastroenterology (including hepatology and nutrition), pulmonology (including asthma and allergy care) and general surgery. Isabella now has most of her appointments at the new pediatric specialty center in Orange County. “It’s much more convenient for us,” Annie says. “But what’s most important is they really care about my daughter.”