Small girl with a big problem
Rare disorder inhibits growth and depresses quality of life

By Irv Leavitt
Staff Writer
Pioneer Press

Jori Kodroff is a high-spirited 11-year-old who loves to dance, but one thing about the Buffalo Grove girl is immediately apparent when she's pirouetting with her friends: She's a lot smaller than they are.

Her mother, Ellyn, despairs of Jori getting much taller than her current four foot two. The ability to grow normally has been robbed of her daughter by Eosinophilic Enteropathy, a disease with a plethora of symptoms that is difficult to diagnose. It's rarely fatal, but it depresses the quality of life of thousands of diagnosed sufferers in the United States, and, researchers fear, many thousands more who are misdiagnosed.

The disease is thought to be brought on by abnormalities of white blood cells, called eosinophils, which, indicate that the body has actually gone to war with itself. Why that happens still isn't known. The disease is often associated with food hypersensitivities, but in many cases, no cause at all can be found.

Sometimes the disease is genetic, and sometimes not. Sometimes it's caused by parasites, like microscopic worms or flukes, but often not.

Symptoms include nausea, vomiting, gastrointestinal polyps and bleeding, cramping, bowel obstructions, diarrhea, hives and rashes, and difficulty in swallowing. Maddeningly, the symptoms are often intermittent, or even seasonal. Sometimes they're associated with diet, and sometimes there's no apparent reason for the comings and goings of symptoms.

As Jori was growing up, her mother noticed that she was a lot different from her two older sisters. "She would vomit once in a while out of nowhere," Kodroff said. "Her meals would consist of a few bites, and then she'd be full."

The child had a low blood iron level, similar to a child suffering from malnutrition. Massive doses of iron were prescribed. But her levels dropped again, and the vomiting became more severe, and her gastrointestinal tract became inflamed, then bled. Nausea and other symptoms worsened.

There wasn't a clue about what was wrong until a veteran Northbrook pediatrician, Dr. I. Robert Plotnick, noticed high levels of eosinophils about two years ago. Jori was diagnosed with the disease late last year.

At times, her diet has been severely restricted, with bans on red meat, potatoes, most fruits and some vegetables. The disease, for the moment, is being controlled by steroids, but that can't last forever, her mother says.

"It's a temporary Band-Aid. It can deteriorate bones, harm vision, damage organs,'' she said, referring to the steroids. Eventually, the treatments will have to stop, and if her daughter has not improved, she will likely have to eat through a feeding tube that pierces her abdominal wall and enters her small intestine, as many sufferers do.

"They are so vile," her mother said, referring to the tubes. "To me, it's horrifying. It will severely reduce her quality of life."

Little research is being done to find the cause and cure of the disease. One of the few researchers is Dr. Marc Rothenberg of Cincinnati Children's Hospital.

Rothenberg said that one of the main thrusts of his research is the study of a connection between one of the types of the disease and asthma. "Under the microscope, EGID (eosinophilic associated gastrointestinal disorders) tissue and asthmatic tissue looks very much the same," he said. "Most parents with EGID also have asthma. In our animal models, mice that are induced to have experimental asthma surprisingly also develop eosinophilic esophagitis. (And) some asthma medications are useful for EGID."

Rothenberg said his work is "currently supported by grants from the NIH (National Institutes of Health) and the Burroughs Welcome Fund, and relatively small but thoughtful donations by patients and their friends and family."

Kodroff said her only hope of keeping feeding tubes out of her daughter's abdomen may be to find a cure, and she'll soon found a Chicago-area foundation to try to raise over $100,000 for the Children's Hospital work. She has helped raise over $50,000 for friends' foundations in the past, and has confidence that with help, she'll be able to do better to help her own daughter.

Her husband Fred and mother, Charlene Glanz of Northbrook, will be at her side. "I spend my days thinking about my granddaughter and trying to think of ways to help her," said Glanz.

Kodroff also wants to locate other area victims of eosinophilic enteropathy, to compare treatment strategies. To reach her, or to find out how to donate, call (847) 793-0071.