When 6-year-old Maria Herrick rides her bike or walks into a room, many people would assume that her backpack simply contains a few books and toys.

Sherri Herrick holds her daughter Maria Carmen Herrick, 6, who has a food-related allergy called an eosinophilic disorder. (Tony Jones photo) | ZOOM |

        But, in fact, the backpack contains a small pump that runs 22 hours a day to send food directly into her stomach through a gastrointestinal feeding tube.

        Maria cannot eat any kind of solid food — not even a cookie — because she has an extreme form of an unusual but growing class of food-related allergy called an eosinophilic disorder.

        This weekend, Greater Cincinnati played host to the nation's first medical conference for families of children suffering from this rare disorder. More than 75 families, some from as far as England, gathered Friday and Saturday at the Radisson Hotel in Sharonville for the first conference of the American Partnership for Eosinophilic Disorders.

        They came to meet other families, learn coping skills, and hear about the latest studies in the field from experts at Cincinnati Children's Hospital Medical Center, which has established a world-renowned research and treatment center for the condition.

        “Boston's Children's Hospital has a good program. But (Cincinnati) Children's Hospital is the only one in the nation with an eosinophilic disorders center that combines allergy and immunology and gastrointestinal experts,” said Maria's mother, Sherri Herrick.

        The Herrick family moved from Memphis, Tenn., to Amelia about a year and a half ago just to be closer to Cincinnati Children's. People also have come here seeking treatment from as far as Maine, California, Vancouver and Jerusalem, says Dr. Phil Putnam, director of endoscopy at Children's Hospital and one of several specialists involved with the eosinophilic disorders center.

        Another family, the Daubers, moved last year to Bethel from Logan, Ohio, on a mission to gain greater care for 3-year-old Jonathan, who lives with eosinophilic disorder. His mother, Amy, says being closer to the hub of research and treatment makes it easier on the patient and his family.

        “It's been great to have people near us who know what we are going through,” she said.

What is disorder?

EOSINOPHILIC DISORDERS

Treating eosinophilic disorders Eosinophilic disorders occur when eosinophils, a type of white blood cell, are found in above-normal amounts in various parts of the digestive system.     When the body wants to attack a substance, such as an allergy-triggering food, eosinophils carry a variety of chemicals to the location to break down the intruder. However, when the body produces too many eosinophils, they can damage tissues.     Depending on where it strikes, patients are diagnosed with eosinophilic colitis, gastroenteritis or esophagitis. Common symptoms may include pain, swelling, hives, reflux, choking, difficulty swallowing, nausea, vomiting, loss of appetite, cramping or diarrhea. In some cases, anaphylactic shock, bowel obstructions, pseudopolyps, nutritional deficiencies and anemia can occur.

TREATMENT

Treatment commonly involves avoiding foods known to cause allergic reactions. In rare cases, patients become so intolerant to food they require tube feedings of special nutrient formulas. Doctors also use a variety of antibiotics, anti-inflammatory drugs and other medications to treat symptoms. Researchers, including experts at the National Institutes of Health and at Cincinnati Children's, are studying compounds that might block eosinophil production.     For more information, check the American Partnership for Eosinophilic Disorders Web site, www.apfed.org; or contact the Cincinnati Children's Hospital Medical Center's eosinophilic disorders center at 513-636-7210 or e-mail to eosinophil@schmcc.org     Source: APFED and Cincinnati Children's Hospital Medical Center

        Doctors say eosinophilic disorders include several diseases that reflect an immune system going haywire when exposed to certain foods, sometimes any type of food.

        For some children, the disorder can be an intolerance to a single type of food, such as milk, wheat or peanut products. Treatment can be as simple as avoiding the food.

        For others, the intolerance can be for all types of solid food, forcing children to live on tube feedings. Some also require various medications and surgeries to repair damaged parts of their digestive tracts.

        Rather than experiencing external allergic reactions, such as hives or skin rashes, when exposed to foods they cannot tolerate these children suffer internal reactions, such as vomiting, chronic diarrhea and damage to the digestive tract.

        The damage occurs because the child's body produces too many eosinophils, a type of white blood cell, in reaction to what the body mistakes as a harmful substance.

        Eosinophils are like dump trucks filled with chemical weapons to defend the body, Dr. Putnam said. When called to the scene by, say, the presence of an unwelcome milk protein, the eosinophil dumps its load of chemicals, which break apart the milk protein but also can damage surrounding body tissues.

        “The intestine is like an innocent bystander in the process,” he said.

        These diseases are so newly classified, doctors are still studying how often they occur. But just from anecdotal practice experience, doctors say the frequency of cases appears to be growing.

        “Either we've become a lot better at diagnosing these conditions, or they are happening with more frequency. But we have recorded a sharp increase in these conditions, especially eosinophilic esophagitis,” Dr. Putnam said.

        In 1999, researchers in Pittsburgh had to hunt to find 30 cases occurring in the previous five years, Dr. Putnam said. But at Cincinnati Children's, more than 200 patients have been diagnosed in just the past two years.

A byproduct of modern life?

        The root cause of these disorders remains unclear. Experts at Children's Hospital doubt that pollution, pesticides or genetic engineering of crops are big factors. Instead, the leading theory boils down to kids growing up in a world that's “too clean.”

        According to this theory, the immune systems of some children have not developed properly because they were not exposed to important environmental triggers early in life. Exactly what those triggers may be remains unclear.

        Maybe kids who don't play outside as much as past generations are missing exposure to a useful bacteria in the soil. Maybe the use of household disinfectants have killed so many bad organisms that infant immune systems don't get enough exercise.

        “It isn't that peanuts have changed. It's more that something about the immune system has changed, which has affected tolerance for peanuts,” Dr. Putnam said.

        For Maria Herrick, the problems appeared soon after birth. Her inability to tolerate formula was first diagnosed as failure-to-thrive, then as an unknown allergy, then as lactose intolerance until finally as an eosinophilic disorder.

        Regardless of the varying diagnoses, Maria was suffering extreme reactions to every food her parents tried. Asthma. Hives. Diarrhea. Vomiting.

        By age 1, Maria was completely dependent on tube feedings of special formulas. Along the way, there were flare-ups despite the tube-feedings, because preventing small children from eating things that look yummy is no easy task.

        “Can you imagine telling a 6-year-old they can't have a cookie, ever? It's a non-stop job,” Mrs. Herrick said.

        To reduce the risk of unsupervised food temptations, Mrs. Herrick said she home-schools Maria — one of the many lifestyle changes such families face.

Conference confronts issues

        Besides seeking more study of this disorder, doctors and families are urging Ohio lawmakers to support H.B. 318, a bill that would require insurers to pay for medically prescribed dietary formulas.

        Some insurers will pay for special formulas when they have to be administered through a g-tube, but many don't pay if the child can swallow the liquid instead.

        “They say, "We don't pay for food,”' Dr. Putnam said.

        As a result, some families struggle to pay thousands of dollars per year, out-of-pocket, for formulas that are every bit as medically necessary as insulin for a diabetic, Dr. Putnam said.

        For Rhonda Walker of Duncansville, Pa., whose daughter Lauren, 11, relies on the feeding tube for nutrition, the conference gave the family a chance to meet others who live with similar problems and questions about coping with the disease.

        “It was nice to hear someone voice the same concerns,” Ms. Walker said. “It's comforting to be able to talk to them.”

        Gill and Andy Heapy, who traveled from Liverpool, England to take part in the conference with their son, Jack, 2, said they've never met anyone in their homeland with the same condition.

        They'll return home, they say, with new ideas about how people cope with the disorder.

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