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Rochester boy suffering from rare food allergy helps spread the word

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ROCHESTER, Minn. (KTTC) -- Imagine your young child is suffering from regular symptoms of vomiting and diarrhea, but no matter where you go doctors are unsure what is going on. It's a parent's nightmare, but a reality for those with children suffering from a rare food allergy that has no diagnostic tests for confirmation. 

Children like Sam Meyer of Rochester suffer from Food Protein-Induced Enterocolitis Syndrome (FPIES). The severe food allergy engulfs his every waking moment, and at times sends him to the hospital.

"They said that they hadn't seen ulcers that bad since she did a residency in a Third World Country," said his mother Joy Meyer.

The scariest part is that the foods affecting Sam are seemingly random, and can vary from case to case. "We tried buffalo, elk, we did try chicken meat, beef," said Joy as she held Sam.

This case of uncertainty leads to a painful game of trial and error.

"We'll do the same dose a tablespoon, or an ounce, for about three days, and then if things are going okay we will up the dose," said Joy Meyer.

His sensitivity goes beyond just what he consumes, even what his food eats.  The Meyers now raise chickens, so they can safely feed them food that Sam isn't allergic too. "The chickens get flax and green peas, and if there was corn in there he may react to it," said Joy.

Doctors say some children outgrow the disease when their immune systems mature.

"The hope was he would outgrow it by three, most cases at that time did," said Joy, "Now they are saying 6." Sam is one month away from his sixth birthday.  He hopes he can eat pizza by then.

Joy has started the FPIES Foundation to help other parents further understand their child's issues.

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