On his two baseball teams, 12-year-old Ian Koukos of Lacey Township is known as a power-hitting third baseman, the biggest home-run threat in either lineup. Ian is a big baseball fan. Along with his parents, who legally adopted him when he was very young, he follows the Yankees closely, although his favorite player isn’t a Bronx Bomber. It’s Prince Fielder, the Milwaukee Brewers’ first baseman. “I like him because he’s an infielder, a home-run hitter, and because he supports his team very well,” Ian explains.
This young slugger’s life, though, hasn’t been all about hitting baseballs and scooping up ground balls.
In third grade, Ian began to experience abdominal pain, which became progressively worse as he grew older. In fifth grade, he missed part of the year and had to be schooled at home. He returned to school in the fall of 2010, but was absent for days at a stretch. By November, he was out of school again and on home tutoring. His participation in his town’s recreational baseball league was cut in half. And he spent long hours immobile on the couch.
During this period, he also ended up in the emergency room more than a dozen times. Doctors there usually attributed his problem to an impacted bowel, and x-rays of his colon often revealed a large amount of stool. But even after he had evacuated fully, Ian’s pain wouldn’t go away.
Frustrated, his mother brought him for a series of more thorough evaluations to a children’s hospital in a nearby state. After a battery of tests ranging from an upper endoscopy to a brain MRI, doctors at the hospital could discover nothing organically wrong; after a while, they even came to suspect that the problem might be Ian himself: The young man, it seemed, just didn’t like school.
Then, on the recommendation of a neighbor, his mother brought him to Goryeb Children’s Hospital at Morristown Medical Center for what she hoped would be a more definitive diagnosis.
At Goryeb, Ian saw Dr. Alycia Leiby, a member of the hospital’s well-regarded department of pediatric gastroenterology and nutrition. After reviewing Ian’s patient record and conducting a physical exam, Leiby offered her own opinion. “I gave them a working diagnosis of functional abdominal pain or FAP, which surprised them,” Leiby says.
In fact, this was the first time either Ian or his mother had ever heard of the condition. But the boy fit the profile well—a persistent, disabling lower abdomen pain with no clear medical explanation and no significant change in bowel habits, as there would be with another form of chronic pain, irritable bowel syndrome.
“Our best understanding of FAP at this point is that it’s a hypersensitivity of the nervous system of the GI [gastrointestinal] tract,” explains Leiby. “Kids with this problem simply feel normal things like food or gas more intensely. Often emotional distress because of the pain or, emotional distress for other social reasons, worsens the pain.”
Fairly certain of her diagnosis, Leiby nevertheless performed a colonoscopy in order to rule out any underlying organic problem, especially given a family history of inflammatory bowel disease. (Up to this point, a colonoscopy was one of the few GI-related tests that Ian had not received.) The test, as she suspected, came back negative.
After this, she swung into action, taking steps to ease Ian’s pain and to reintegrate him back into life. First, she placed him in physical therapy in order to help rebuild his muscles, which had atrophied from Ian’s hours on the couch and general inactivity. Second, she referred him to a cognitive behavioral therapist, who would help him learn to cope with his chronic pain. And finally, she tried out some medications, ultimately settling on a combination of Levsin, which decreases stomach motility (or movement) and lessens the secretion of fluids, and Lactobacillus reuteri probiotic, a nutritional supplement that employs live microorganisms to manage several GI conditions.
In May of this year, Ian returned to school and to baseball—with Lacey Lightning, a traveling team made up of the town’s best players. On Mother’s Day, Ian came to bat in the third inning with the bases loaded and hit a grand slam. He bashed a second homer later in the game, and Lacey Lightning went on to win by an embarrassingly lopsided 26 to 2. Though not pain-free, Ian says, “Compared to when I was feeling atrocious, there’s been such a big improvement…I feel so much better.”
An outcome like Ian’s would make any medical professional smile, of course. But it’s especially pleasing to doctors who treat children and teens whose young lives have been radically disrupted by a disabling disease. “About 25 percent of school-age children have recurring belly pain of some kind,” says Dr. Joel Rosh, director of pediatric gastroenterology and nutrition at Goryeb and one of this year’s Top Doctors. “When one of them is brought to see us, we certainly want to get at the root of the kid’s pain, but we also want to get him or her out of pain and back into life.”
Pediatric gastroenterologists are trained to do just that. Unlike adult gastroenterologists, who come to the specialty through internal medicine, doctors like Rosh and Leiby are pediatricians first and have gone on to complete three additional years of training. This background is essential. “As pediatricians, we’ve learned tricks and have personalities that enable us to engage children in a way that a lot of adult specialists may not be able to do,” says Dr. Jonathan E. Teitelbaum, chief of the department of pediatric gastroenterology at the Children’s Hospital at Monmouth Medical Center in Long Branch, and another of this year’s Top Doctors.
Despite their training, pediatric GIs (gastroenterologists call themselves GIs rather than GEs) often face communication hurdles that their counterparts who treat adults don’t.
“For us, getting good historical data is often more crucial than performing tests or even physical exams, but it’s somewhat difficult to get a good history from a child who can’t verbalize what his complaints are,” says Teitelbaum. For this reason, pediatric GIs frequently depend on parents or caregivers to fill in the blanks. Indeed, anyone who trains in pediatrics must be as comfortable talking to parents as they are to kids.
But parents—or caregivers generally—receive mixed reviews as clinical reporters. “Some are excellent,” says Teitelbaum. “They come in carrying charts and graphs of what’s going on. Others aren’t necessarily as clued in to some of the things I need to know.”
One of those things is a child’s bathroom history. “After toilet training, there are a lot of parents who start to lose track of how often their kids are stooling—and what the stools look like,” Teitelbaum says. “That’s not always relevant for every child I see, but that’s an example of how even very good parents can sometimes find themselves out of touch.”
By necessity, pediatric GIs are also more attuned than their adult counterparts to growth and development which, when slowed or interrupted, can be the first sign in a child or teen of a disease process. “Any pediatrician worth his salt is plotting a child on a growth curve and looking at that curve very carefully when evaluating and managing his patient,” says Dr. Soula G. Koniaris, chief of the division of pediatric gastroenterology and nutrition at Robert Wood Johnson University Hospital in New Brunswick. (Koniaris is a 2011 Top Doctor.)
Recently, Rosh began treating a patient whose failure to grow properly actually preceded his GI symptoms. The case involves a 12-year-old from Monmouth County. Concerned that he seemed small for his age, his parents brought him to the family pediatrician, who in turn referred him to a pediatric endocrinologist, a specialist trained to treat growth issues in children and teens. The specialist could find nothing abnormal about the boy and attributed his slow growth to genetics—his parents are themselves small in stature.
Soon, though, the child began developing abdominal pain, accompanied by occasional diarrhea. His parents considered some likely explanations: Perhaps he was under stress at school? Perhaps there was some bug or virus going around? But their son’s belly pain and intermittent diarrhea persisted.
After six months, the family returned to their pediatrician, who by this point was skeptical that either stress or a series of flu bugs explained the boy’s discomfort. He ordered another round of blood tests, which led him to suspect that something else, perhaps celiac disease, was going on. He referred the family to Rosh in Morristown, about an hour’s drive from their home.
Rosh reviewed the boy’s history and examined him. Clearly, six months after visiting the endocrinologist, he still hadn’t grown. This was significant, since growth failure in children is an indicator of inflammatory bowel disease. Coupling this with the boy’s intermittent GI symptoms, his lab tests and a physical exam of the perianal area, Rosh had enough data to put the final pieces of the puzzle together. “I knew this was Crohn’s disease, and I was able to tell the father in the office,” says Rosh.
Follow-up endoscopic procedures confirmed Rosh’s diagnosis and showed him the extent of the boy’s inflammation, which turned out to be widely distributed within his GI tract. After this, Rosh placed his young patient on a medication called methotrexate, initially developed for the treatment of certain cancers but now also used to treat Crohn’s and other autoimmune diseases. (In such diseases, the body’s immune response causes it to attack its own tissues, resulting in inflammation and other problems.) Once his patient is stabilized, Rosh will see him every three months, paying close attention to his growth. “It’s our best marker,” he says.
Like other pediatric GIs, Rosh employs invasive tests infrequently, with perhaps as few as 10 percent of his patients receiving endoscopic or other procedures. (By contrast, Rosh estimates that upwards of 90 percent of adult patients in a GI practice undergo some kind of endoscopic or other procedure.)
Why such a disparity? “In the adult world, doctors are screening for colon cancer, which is one of the biggest concerns in an adult GI practice,” Rosh says. “But in our world, it’s a very small part of our population.”
The comparatively low risk of colon cancer in kids makes pediatric GIs cautious—even conservative. “Why should I put a child under anesthesia and scope her if I don’t have to?” asks Koniaris. “If I listen and have a sense of what is going on, I don’t need an endoscope to prove what I already know. I practice in a way that I’d want my own child treated.”
There are times, of course, when a pediatric GI must test in order to know what’s going on, as Rosh himself was required to do to confirm his diagnosis of Crohn’s and see the extent of inflammation. At such times, there are plenty of tests to choose from. One of the latest in its pediatric application is known as video capsule endoscopy (VCE). With its tiny imbedded camera, the pill-sized capsule is swallowed by the patient, permitting the specialist to view the portion of the small intestine inaccessible by either an upper endoscopy or a colonoscopy. (For kids who can’t yet swallow the capsule, it’s placed endoscopically and comes out by itself.)
In Rosh’s department at Goryeb, they average two to four VCEs a month; other physicians perform even fewer on a monthly basis, although all acknowledge the “clear role for VCE,” especially in diagnosing inflammatory bowel disease and unexplained bleeding.
Pediatric GIs also end up testing—often against their better judgment—as the result of pressure from parents. “Sometimes parents are very eager to have me do every test possible,” says Monmouth’s Teitelbaum. Other physicians have had the same experience. “A lot of times, we get pressure from the parents that we need to do something,” says Dr. Francis P. Sunaryo, director of the division of pediatric gastroenterology at Saint Barnabas Ambulatory Care Center in Livingston. (Dr. Sunaryo is another Top Doctor.)
If parental insistence becomes too intense, Koniaris calls a time out: “When I’ve done all the testing that I need to do and a parent is still really getting anxious, I have to stop and say, ‘What is it that’s bothering you—what are you most afraid of?’”
What parents are most often afraid of, it turns out, is cancer or another serious illness. At such moments, Koniaris is reassuring. “OK, let’s talk about this,” she begins. After reassuring the parents that cancer is an unlikely possibility in their child’s case, she says, “I sometimes see families start to cry, because cancer is the thing they’ve been terrified over for so long.”
For Koniaris, the most difficult cases often involve some form of inflammatory bowel disease, such as Crohn’s or ulcerative colitis. Both are chronic diseases that can usually be controlled with medication—although not always.
“Some of these patients can be very, very sick when they aren’t responding the way you’d hoped to the prescribed drugs,” Koniaris says. In such cases, kids and teens begin to live in a self-imposed cocoon, missing school, withdrawing from extracurricular activities, staying close to home, all out of fear they’ll suddenly double over from belly pain or have to make a bee line to the bathroom. “One of the things I try very hard to do is to get such kids stabilized, so that they can go to the college of their choice or take a trip abroad to study,” she says.
Like Goryeb’s Leiby, Teitelbaum believes strongly in cognitive behavioral therapy as a mechanism for teaching young FAP patients how to cope with their disease—one likely to be with them their whole lives. Along with the right medication, such therapy, he and other experts say, can help not only in the immediate term, returning children to school and extracurricular activities, but can also prepare them for adulthood. “If a kid doesn’t learn coping skills now, how is he going to be able to hold down a full-time job?” asks Teitelbaum. “When it comes to skipping work or working from home, most employers are just not that accommodating.”
Many say that capsule endoscopy may at some point largely supplant colonoscopies, enabling specialists to view the whole bowel. “I think every parent would love that, rather than have their child sedated prior to a colonoscopy, even though we’ve made that procedure very safe,” says Rosh. He also looks forward to the day when capsules can be steered, Fantastic Voyage-like, and made to extract tissue samples.
Like their colleagues who treat adults, pediatric GIs are excited about a new endoscopic technology, confocal endoscopy, that produces high-magnification tissue images without a biopsy.
“By seeing microscopic cellular structures in real time,” says Teitelbaum, “we’ll be able to say that such-and-such looks cancerous and should be removed, but this other part looks normal.”
Many pediatric GIs are keeping a keen eye on new areas of basic research, including genetic studies and something called the Human Microbiome Project. Begun in 2008, the latter is an effort to identify and describe the microorganisms that live in human intestines, healthy and diseased, including those of children. “With the new DNA and RNA probes we have, we’re getting a better sense of the enormity of the different types of bacteria in our intestines, and how they develop a nice environment in healthy people and an imbalanced one in other people,” Teitelbaum says. The probable clinical payoffs of this research are enormous.
For now, the essence of pediatric gastroenterology will remain the human factor. On Ian Koukos’s next visit to Goryeb after his team’s 26–2 victory, Ian handed Dr. Leiby the grand slam baseball; on it, he had written a dedication: “Dear Doc, This HR is for you!” Thanks, Ian.”
Wayne J. Guglielmo writes frequently about health issues for New Jersey Monthly.
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