GREENSBORO — On an unusually cool June morning, 2-year old Georgia Podracky is fearless as she climbs steps and whooshes down a slide on the playground at Country Park.
By all appearances, Georgia is a normal, healthy toddler. And for the most part, she is.
Except for when it comes to eating.
Most foods can make Georgia very sick, including birthday cake.
“For her second birthday, we gave her a painted hat box with a toy inside and a cup of ice with a candle,” said Katie Podracky, Georgia’s mother.
Georgia suffers from a condition called food protein-induced enterocolitis syndrome or FPIES.
It is a type of food allergy. However, it’s not like more common food allergies (think peanuts), which typically cause a reaction within a short time. Instead, reactions are delayed, typically about two hours, although it can be much longer. And reactions can be traumatic with vomiting for hours and diarrhea for days.
Trigger foods can be anything or, like with Georgia, just about everything.
“Her quality of life right now is really good, and she sort of accepts everything that goes on as though ‘That will hurt my tummy,’ ” Podracky said. “As a mother, though, it’s really hard.”
FPIES mostly affects children, but adults can develop the condition too. It’s estimated that about a million people are living with the condition in the United States, according to Fallon Matney, founder and president of the New Jersey-based International FPIES Association, a nonprofit advocacy organization for awareness and research. But Matney thinks that estimate is low.
“It’s kind of the oddball food allergy. It’s not the most well known in the real world and the medical field,” Matney said. “We don’t understand what causes it. There’s no treatment for it. And there’s no diagnostic for it.”
While eggs, milk, peanuts, tree nuts, fish, shellfish, wheat and soy are the top food allergens, any food — even those typically hypoallergenic like oats — can cause a reaction for people like Georgia.
Her short list of acceptable food items, oddly enough, includes eggs.
They are cooked in pure, extra virgin olive oil. She can also eat broccoli and a particular kind of salt.
Other than a specialized formula she has been drinking since she was 2 months old, those four items are the only foods her body will tolerate.
“We’ve tried between 30 and 40 foods right now,” Podracky said.
Unlike other food allergies, Matney said there is no way to test which foods can trigger a reaction.
“These children have to literally eat the food to find out if they’re allergic to it,” Matney said.
Sometimes, as in Georgia’s case, a reaction can be delayed by hours or even days.
“I know what it looks like,” Podracky said. “It’s like a slow build to a reaction.”
Knowing what does and does not cause a reaction can sometimes be a guessing game. Like recently when Georgia was at a water park and accidentally swallowed some chlorinated water. Later that night, she had a reaction. But Podracky couldn’t be sure if the reaction was from the chlorine or from small doses of an antihistamine Georgia has just started taking in her formula to see if it would help her combat her food allergies.
“I had to decide do I push on with the medicine because maybe it was the chlorine in the water or do I stop because maybe it’s the medicine,” Podracky said. She decided the reaction came from chlorine. “Everything is kind of scary like that.”
Matney said studies indicate foods that trigger FPIES are the first foods infants eat. In America, those would be things like milk, soy, rice and oats. Trigger foods are different in other countries.
The condition is typically diagnosed in children under a year old but can be diagnosed much later.
Georgia was almost 7 months old before FPIES ever came up in conversation. But problems started much earlier. When she was 2 months old she would scream for three hours straight, was covered in eczema and was spitting up five or six times after every feeding.
Still, Podracky thought it was just normal baby behavior.
“With a baby, it’s hard to tell what is spit up and what is not,” she said.
Georgia couldn’t keep anything down and she became bloated. One terrifying day, Podracky left Georgia with her husband, Dave, while she went out for a break. Dave called her home because Georgia seemed to be having seizures.
“She had something called Sandifer’s syndrome caused from excessive reflux that is so painful it causes infants to look like they’re having a seizure,” Katie Podracky said.
For a short time, Georgia lost weight and fell off the growth curve. Podracky said her daughter was diagnosed with a milk protein allergy. She stopped breastfeeding Georgia and started her on the special formula, which brought immediate improvement.
“We thought that was the end of it,” Podracky said.
What they didn’t know was that Georgia was allergic to much more than dairy. Just about everything Podracky had eaten during breastfeeding had triggered reactions in Georgia.
When the Podrackys introduced Georgia to solid food at about 6 months, she started vomiting again. The Podrackys found themselves right back in the pediatrician’s office — three times in one week.
The doctor thought it was a stomach virus, but Podracky insisted it would happen after Georgia ate sweet potatoes and oatmeal, a food often thought of as being hypoallergenic.
“They’d say, ‘No, it doesn’t look like an allergy,’ ” Podracky said.
But Podracky put Georgia back onto a formula-only diet and the vomiting stopped.
It is thought that FPIES can be hereditary. Georgia’s 4-year-old brother Miles had similar, but much less dramatic, symptoms until he was 1. When Georgia was diagnosed with FPIES, Podracky said she was grateful to finally understand what was happening, but worried how she would be able to give Georgia the nutrition she needed.
“I thought, ‘It’s OK. I’m creative. I can come up with some birthday cake options with almond flour and quinoa,” Podracky said.
But Georgia failed to keep those foods down as well.
It was through trial and error, a lot of vomiting and a lot of dirty diapers that Podracky and her husband found the four safe foods Georgia now eats three times a day.
“It’s strange because it’s not always an immediate response. Sometimes it takes several days. Sometimes it takes a week,” Podracky said.
Podracky has made pancakes from broccoli and cut fried eggs into bunny shapes to try to make things interesting.
Georgia does associate other foods with pain, but sometimes she forgets and wants her brother’s chicken nuggets or an apple.
“It breaks my heart anytime we have something like a cookie or a snowball,” Podracky said.
Podracky brings her children to Country Park at least once a week. Miles loves getting a sweet snowball from the lakeside stand. Georgia thinks she’s getting a treat when the attendant hands her a cup of nothing more than shaved ice.
The road to balance has been a slow process, but Podracky said now that Georgia’s diet can be controlled, she is growing and developing completely healthy and normal.
“If this is all that she has and it goes away, then that’s wonderful,” Podracky said. “But it’s really hard to see the light when you’re trying to figure out what to feed your child and they’re just failing everything.”
Podracky longs for the day when she can take Georgia out for a real treat. And that day may come.
According to the International FPIES Association, 60 to 90% of affected children will outgrow the disorder by age 3.
Podracky has organized an awareness walk July 28 at Country Park. She is trying to raise funds for evidence-based research such as why certain foods are triggers. She has already met her goal of $2,000.
“You get this diagnosis and you’re grateful to know what’s going on,” Podracky said. “But then you get this, ‘You’re on your own because we don’t really know how to help you.’ ”