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Letter to the editor

A very restricted diet

Kids' allergies can turn eating into a scary experience.

By F. TIMOTHY MARTIN, Times Correspondent
Published December 12, 2007

PINELLAS PARK

About two years ago, Bethany Owen shared an afterschool snack with her grandparents. A few minutes later she noticed her face and hands beginning to swell.

"I had an ice cream sandwich with my grandma, but then my lip started swelling - it looked like it was going to go boom," Bethany, now 12, recalled recently with a chuckle at her parents' home in Pinellas Park.

As an infant, Bethany reacted severely to a switch from breast milk to formula. Since then, however, there had seemed little cause to worry.

But a few days after the ice cream incident, Bethany inexplicably developed severe bruises on her back and chest, and her hands continued to swell. Not quite sure why her daughter was having such unusual reactions, her mother, Missy Echevarria, gave her some Benadryl and immediately took her to a doctor.

"The doctors couldn't explain what was going on with her," said her mother. "When the bruises showed up, it looked like I beat my child."

The preliminary diagnosis: lactose intolerance. But when the reactions didn't go away, her mother decided to get a second opinion.

As it turned out, Bethany was more than just "intolerant" to milk. They learned that she suffered from numerous allergies, including allergies to milk protein, cats and dogs, pollen from certain trees, and some mosses and molds.

A common problem

This case isn't altogether unfamiliar.

Food allergies are difficult to diagnose, often leading to delays in much-needed treatment.

"It's not as straightforward to diagnose as it would seem, explained Dr. Elizabeth Matsui, an assistant professor of pediatrics at the Johns Hopkins Children's Center.

"We always have to interpret the results. ... There's a lot of room for inaccurate conclusions." An expert on allergies in children, she recently co-authored a major study analyzing more than a decade's worth of data on children with milk allergies.

Matsui said that by not restricting her intake of dairy products, Bethany could go into a state of anaphylactic shock, a condition that without proper treatment causes roughly 150 to 250 fatalities in America each year.

It's a fear shared by 12-million people in America, where the incidence for this incurable health problem has doubled in the past 10 years.

While many kids with allergies overcome their condition as they get older, others, like Bethany, have allergies that persist into adolescence and beyond. Matsui saidit can be challenging for parents and kids to deal with.

"It's much more complicated then it seems at first blush. ... On the one hand, you want to make sure the child has knowledge about what foods they can eat. But you also want to be careful that the patient doesn't develop an anxiety disorder."

To strike a balance, Matsui said, parents should help their children negotiate relationships with other kids and adults who are aware of their allergies and supportive of the changes needed to their diets. Families should also consider joining support groups and spend time together reading up on all the potential hazards their children face.

Other costs

While the threat of going into anaphylactic shock alone is enough to burden any family with worry, families of kids with food allergies also have a host of other issues to contend with.

Bethany's parents shuttle between four different organic grocery stores across Pinellas County, where they spend hours reading food labels to make sure the food they buy is safe for their daughter to eat.

As a reference, they bring along a three-page list of prohibited ingredients that range from the familiar (butter, cream and cottage cheese) to items they need a dictionary to understand (caseinates, hydrolysates and lactal bumin).

Bethany's special dietary needs amount to a grocery bill that is two to three times higher than normal, said her father, Geronimo. The family is also burdened with medical expenses. After collecting more than $300 a month in premiums, their insurer charges deductibles and co-pays, and also partially bills the family for all of Bethany's tests.

One recent test cost them $1,200. The bills add up quickly for a family whose sole income comes from Geronimo's job as a plumber.

Bethany must also carry an EpiPen with her wherever she goes. It contains epinephrine, a potentially life-saving dose of adrenaline that she needs to immediately inject into her thigh upon the onset of any allergic reaction.

As if all this wasn't enough to deal with, Missy and Geronimo's 2-year-old son is also exhibiting early symptoms of having food allergies.

Food allergies are often hereditary, and are present in Geronimo's side of the family. So far it seems that their baby is intolerant or allergic to something other than milk protein, which means his dietary needs, and subsequent food expenses, will be much different than Bethany's.

A silver lining

Two years since her diagnosis, Bethany and her family have adjusted to living with her disease. Bethany has gotten used to carrying the EpiPen, and her school keeps a second shot on hand for her just in case. She's also eating better than before - including lots of chicken, tofu and organic vegetables. The change in diet has put her in better shape, too. She has lost 20 pounds since eliminating milk proteins.

"Two years ago it was harder to find healthy food. We've found a wider range of things accessible now," her father said.

Moreover, new treatment options are being developed that may make the future a bit easier for kids like Bethany. Dr. Matsui said there are promising signs coming from recent research into oral immunotherapy, a treatment that slowly increases a person's intake of food they're allergic to in hopes of increasing their tolerance. There is also a new vaccine currently being developed for people with peanut allergy.

As for Bethany, she hasn't let her food issues slow her down too much. She recently searched the Internet to research where she could find a dairy-free version of her favorite food: pizza.

The family enjoys cheeseless pepperoni pizzas from Pizza Hut, the only pizza restaurant she could find that does not use any milk proteins in their crust.

Her ordeal of finding safe food to eat has prompted Bethany to aspire to open her own dairy-free cafe catering to people with milk allergies like her.

[Last modified December 11, 2007, 23:22:24]