On Izabella Myers’ first birthday, the bright-eyed girl, now an endearingly shy five-year-old, had her first allergic reaction to food.
The ones that followed threatened her life.
“Her [reactions] are so severe…that the chance that she will grow out of [her allergies] are very slim,” said Izabella’s mother, Melody Myers.
“Two times that I can remember, she has choked and quit breathing. We had to do the Heimlich [maneuver] to get her breathing again.”
The distinctive red spots, indicating a reaction, that appeared on her arms shortly after eating a small portion of scrambled eggs on her birthday and a second, stronger one, angry whelps that appeared after her eating an Elmo birthday cake are the relatively mild symptoms that most people think of with food allergies.
Conventional wisdom suggests, avoid pine nuts and shellfish, and everything will be fine. But Izabella’s list of allergens is so extensive, just finding what she can eat is a challenge. Even a small amount of the wrong food is dangerous.
“The basic act of feeding our children becomes an intimidating and unnerving experience. We worry and wonder if we can trust the food labels provided on the packages, or if this is the meal that will require us to administer an Epi-pen and rush our kids to the hospital,” Myers confides on her Team Izabella, Food Allergy Walk page.
“There was this big list of stuff I couldn’t feed her,” she later said. “I didn’t know what to give her.”
Milk, wheat, eggs, tree nuts, peanut, apples and peaches are a few of the items Izabella can’t have.
Myers said that apples, surprisingly, are the hardest items to watch for.
“Apple is in everything that says natural flavors. We have to call the company.”
Myers adds that there aren’t many restaurants in Manchester where the family can eat. When they do eat out, all Izabella can have is French fries.
Most of Izabella’s diet comes from Whole Foods Market in Nashville. Cheese flavored tofu is one of her favorites.
A confusing diagnosis
Izabella’s reactions are strangely polar; one reaction is an immediate swelling of her face in as little as 30 seconds. But a second, more enigmatic condition, swelling of her esophagus, called eosinophilic oesophagitis or EE, takes days to appear.
“EE is … an internal allergy. I could feed her something today. Then, in two or three days, she would react to it.”
The delay makes narrowing down Izabella’s allergens difficult. To be safe, doctors cut all of the usual suspects of potential allergens. Now slowly, ingredients are being returned to her diet.
But there’s a catch: Because a patch test (involving exposing allergens directly to Izabella’s skin) was inconclusive, a surgical procedure is needed to check for eosinophil cells, a type of white blood cells that mark the beginning of a reaction.
“The only way for them to test is for them to do surgery. They go in and do a biopsy and see if these cells are there.”
To add a new food to her diet, Izabella is given a controlled quantity, with the hope that she doesn’t have an immediate reaction. In two months, she is taken in for a procedure that looks for eosinophil cells. The presence of the white cells gauges the reaction. The more cells present, the more severe the reaction. Twenty-five is a pretty severe case.
“On her first test, when [Izabella] choked so bad the first time, they stopped counting at 100,” Meyers recalled.
It was such a strong reaction that the doctor asked to include Izabella in a medical journal article.
“I thought that [the test] would be harder on her when she was little, but it seems to be harder on her now.”
Myers said that Izabella has nightmares and anxiety about the procedures.
An often misunderstood condition
According to heath care professionals, food allergies, affecting about 1 in 10,000 individuals, differ from food intolerance, like lactose intolerance or celiac disease, a slightly more common autoimmune condition associated with eating wheat gluten.
People with allergies like Izabella’s have an immune response to the proteins that make up food. Their bodies, for reasons not really understood, mistake the proteins, in say egg whites for example, as harmful, then goes after the proteins with white blood cells.
“I thought that maybe people don’t understand what food can do,” Myers said.
To help raise money for an upcoming awareness walk, Myers made a poster that showed some the more pronounced effects of Izabella’s condition and set up a booth outside Walmart.
“I made a poster of her at that age and one of her [swollen up]… thinking that maybe people will understand what a little bit of food can do.
“[Izabella] got really upset – I would have just blown it off – but she notices several groups laughing at her about this.
“She goes through enough, getting excluded from things and not getting [to eat what the other kids do].”
Hope for a cure
Currently there is not a cure for food allergies. Avoidance and, in mild cases, desensitization are two of the few available treatments.
In November, the family will participate Food Allergy Research Education walk at Centennial Park.
The hope is maybe one day find a cure.
“We hope to raise $1,000. We’ve had a pretty good size team the last few years, but we hope to make it bigger,” Myers said.
For more information on how to help, call (931) 273-3481 or go to www.foodallergywalk.org and search for Team Izabella.
The walk will be Nov. 16 at Centennial Park.