Local mothers bond over unimaginable disorder - Ahwatukee Foothills News: Health

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Local mothers bond over unimaginable disorder

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Posted: Tuesday, December 11, 2007 12:00 am

Imagine sitting down for Christmas dinner, the sweet smell of freshly-baked honey ham, mashed potatoes doused with gravy and spiced pumpkin pie igniting your taste buds - but you can't eat any of it. Imagine sitting, watching your family members take heaping fork-fulls of their delicious dinner, while you try to stomach a bottle of a chalky, metallic-tasting amino acid formula. For six Ahwatukee Foothills youths this is not imagination at all, it is reality. And not just on Christmas Day, but every single day of their lives. "Eosinophilic disorders are a group of disorders where the body has an abnormal reaction to food," said Alaina McCormick, national outreach coordinator and volunteer for the American Partnership of Eosinophilic Disorders (APFED). "An eosinophil is a type of white blood cell that accumulates in body tissues and causes inflammation and damage. The disorders are categorized where the condition is localized." McCormick said that when people with eosinophilic disorders eat food, the body attacks itself with white blood cells. Most young children are diagnosed with malnutrition because the disorder affects the body's ability to absorb nutrients. They experience rashes and mood changes. Adults often experience dysphasia (difficulty swallowing). Ahwatukee Foothills resident Rebecca Stewart's son Adam showed the first signs of Eosiniphilic Esophagitis (EE), a form of the disorder where inflammation and damage occurs in the esophagus, when she stopped nursing. "When I began to introduce food he lost weight," she said. "He had eczema, constipation and was congested. Eventually he dropped to the zero weight percentile and stopped growing all together." At first Adam was diagnosed with malnutrition. Although he ate very well, he wasn't absorbing anything. "He ate and ate and ate, but it didn't absorb," Stewart said. "I was told that babies just go through this, but I knew something wasn't right." Stewart took her son to an allergist who diagnosed him with allergies. However, after she removed those foods from his diet, Adam still did not gain weight. "That's when I made an appointment with a pediatric GI specialist," Stewart said. "I was really lucky that my GI knew right away that he had EE. At this point you could see his ribs and bones and he had a big belly like a starving child." Adam was 15 months old when he was diagnosed with EE. He suffered from malnutrition for six months. McCormick said there is no non-invasive way to find out what foods are safe to eat for people that have eosinophilic disorders. The most common form of treatment is food avoidance, and some patients' primary nutrition is through tube feeding. "Really all of this is guessing, but the only thing I know I can count on is his formula," Stewart said. "Adam will drink 40 ounces of formula a day, but will only do it by bottle because it tastes like chalky metal." Adam is allowed to eat five foods: rice, potatoes, apples, grapes and carrots. Stewart believes he is not allergic to these foods, but the only way to be sure is through a biopsy. In Ahwatukee, the mothers of children with Eosinophilic Disorders meet weekly for support. Food is not allowed at these meetings and children that are able to eat must eat out of sight or up at a high kitchen counter. "What is really neat about this group is I can say, 'My 5-year-old drinks out of a bottle,' and no one will say anything," Stewart said. Tuesday afternoon Stewart, McCormick and mothers Elisana Schuler, Katie Murray, Jenece Whitted and Deb Flynn gathered together in Stewart's living room. Noises of toys and laughter filled the house as children played and the women turned to each other for comfort. Schuler told the group her daughter Gabrielle was diagnosed with EE just this month. "We've gone her whole life not knowing," Schuler said. "With people telling us there's nothing wrong with her." The women also converse about their financial difficulties of paying for the formula. Some spend up to $4,000 a month because their medical insurance does not cover formula. "This formula that the children have to be on, the insurance companies want to fight us," Schuler said. "They want to fight us on the foundation of these children's lives." APFED also receives no federal funding for research. "All the research is funded by ourselves," Stewart said. For more information on eosinophilic disorders and to help struggling families find a cure, visit www.apfed.org or contact Alaina McCormick at (480) 539-4874 or azeos@cox.net. Corinne Frayer can be reached at (480) 898-7917 or cfrayer@aztrib.com.

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