Rare medical condition highlights PA family’s food struggle

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"All he did was cry and it wasn't your typical colic cry, it was all day, all he did was scream  after eating," said Danielle George about her son Benjamin Bonilla.

The happy 4-year-old has been extremely sick since the day he was born.

"We knew something was wrong,  it was just a matter of what was wrong," Danielle said.  They went to countless doctors, but still no answer.   That is, until Benjamin was 10-months-old.   "We ended up getting medevaced because his intestines were swollen and and it was shortly after that we were able to get the allergist at CHOP to diagnose him with FPIES," she said.

Food Protein-Induced Enterocolitis Syndrome,  better known as FPIES, is a rare type of food sensitivity affecting infants and young children, and if ignored, could prove deadly.   Classic symptoms include pain, insomnia, profound vomiting, diarrhea and dehydration which can lead to a change in body temperature and blood pressure.

"Something as small as a grain of rice of a particular food can cause a reaction," Danielle said.   For Benjamin, that reaction doesn't show up right away.   It can take several days, making the process of identifying trigger foods extremely difficult.

Wellspan Pediatrician Dr. Sean Campbell says there is no allergy test for FPIES, no skin test, no blood test.  He said it's really trial and error and the only treatment is to avoid the food that causes the reaction.  Dr. Campbell also says it's difficult to diagnose because it's so rare.    "Probably between 1 in 2,000 or 1 in 5,000, but there might be milder cases that we're just not seeing," Dr. Campbell said.

Danielle says life with a child who has FPIES can be challenging.   "It definitely makes you stronger and more aware of how many things are actually in the food that we eat, because of having to read every single label," she said.   Eating out is near impossible and instead of the typical cake-smash for his one-year old birthday, Benjamin had a cake Danielle made out of peas.

<nat?>For years, peas, pretzels and carrots were among only a handful of foods that were deemed "safe" for Benjamin to eat, and he's still very leery to try more.    </nat?>

"He's afraid that food is gonna make him sick so it's quite a process.  He likes broccoli now, but it took us 4 months to eat one small bite of the broccoli," Danielle said.

Like  many parents of an FPIES kid,  the thought of sending them to school can be terrifying.   Danielle said,  "You have to rely on the school taking what you're telling them and making sure he's not getting into something he isn't supposed to be.   However, he's a trooper.  He knows what he can and cannot eat, so that definitely makes like a little easier right now."

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