Laid-back Emerson, 13, and his high-spirited brother Kenny, 10, are active boys who participate in basketball and taekwondo among other athletics. So, their mom, Tyana, says people are often surprised to learn they have serious food allergies. “People can’t believe they grew so tall without drinking milk,” she explains with a laugh.
Both boys have IgE-mediated food allergies to multiple foods and experienced their first symptoms while very young.
Initial food allergy testing
Emerson's symptoms started when he was 3 months old. His mother had recently switched from breastfeeding to formula and he began vomiting frequently. A local pediatric gastroenterologist advised Tyana to switch brands of formula and said Emerson would likely outgrow the issue once he started walking.
Unfortunately, Emerson didn't outgrow it. Then, when Emerson was a year old, Tyana introduced him to whole milk. "Suddenly, it was like The Exorcist," Tyana says. "He just threw up all the time.”
The family again sought help from local doctors who ordered allergy tests for Emerson. The results showed Emerson had serious allergies to both dairy and beef.
Tyana was stunned. Though allergies run in her family, they were usually mild and seasonal. Learning the extent and seriousness of Emerson’s allergies temporarily threw her.
“My initial reaction was shock and sadness," Tyana recalls. "It’s scary because it’s something unknown, and you don't want anything to be wrong with your child. But then my husband pointed out there is still plenty he can eat."
Given the family's history, when their second child, Kenny, was 6 months old, he was also tested for allergies. The results were negative and he seemed to have no problems eating. But when he was 2 years old, he was uncharacteristically lethargic after routine ear tube surgery and began vomiting frequently. A second round of allergy tests revealed he was also allergic to dairy and beef.
Treatment and patient education
When Emerson was diagnosed with food allergies as a baby, his parents decided to seek expert care, treatment and advice at Children's Hospital of Philadelphia (CHOP). After Kenny's diagnosis, he too began to be treated at CHOP.
The family chose CHOP on the strength of its reputation and research abilities, Tyana says.
“The other hospital we went to was great, but I wanted to go to the best place I could think of — and that was CHOP,” Tyana says.
“I absolutely recommend CHOP to any parent. They know what they’re doing and they do things that other hospitals aren’t doing yet. There is a lot of hope and a lot of research going on to make kids' lives better.”
Terri Brown-Whitehorn, MD, an attending physician at CHOP's Food Allergy Center and Division of Allergy and Immunology, manages the boys’ care. Their treatment plan includes a daily antihistamine and keeping EpiPens® on hand in case they have a severe reaction from an unintended allergic exposure.
But medication isn’t enough. It’s impossible for families to remove all potential triggers from every place their children may go. Patients and families need to be informed about their child's condition and know how to minimize their exposures.
For very young children, parents must be the first line of defense — and it takes some studying: For example, to avoid dairy products it’s not enough to look for ‘milk’ on an ingredient label, Tyana says.
“You have to learn all the buzzwords and jargon food companies may use for milk or ingredients that include milk proteins,” says Tyana. “Early on, CHOP was really useful in helping us learn what to look for. The staff gave us a lot of information and websites to use as a guide.”
Although labeling has become clearer over the years, Tyana still reads every ingredient list and reminds her sons to do the same. “Even foods that you’ve checked and think of as ‘safe’ can change their formula and they might not indicate that clearly on the package.”
The good thing about being diagnosed so young is that for Emerson and Kenny, managing their allergies has become part of their routine, like brushing their teeth, Tyana says. It’s an assessment Emerson and Kenny both agreed with.
“I have to read the labels on new foods or if we go out to eat, but if you have allergies you can still play sports,” Kenny explains. “Even though I have allergies, I don’t feel left out [of activities].”
Living with food allergies
When parents first learn their child has food allergies, they understandably worry about what the future holds. But increased awareness and promising treatments mean life with food allergies is relatively normal.
“When [a child] first gets the diagnosis, it might come as a shock,” Emerson advises, “but I would tell them it doesn't define who you are or mean you’re different — it just means you can’t eat certain things. They can do what they want with their life.”
Teaching kids to self-advocate
More About IgE-Mediated Food Allergies
As Emerson and Kenny mature, staff members from CHOP's Food Allergy Center continue to teach them age-appropriate ways to manage their allergies.
Tyana acknowledges she and her husband won’t always be around to check ingredients. “They have to learn to manage this themselves," she says. "Our ultimate goal is to reach a point when we can say to the kids: “Here are the reins to your health; you can steer it now.”
Emerson says he enjoys the independence that comes with taking control of his health, even though it comes with more responsibility.
“When you have an allergy and you get to my age, you have to read the labels, make sure you have your meds with you, know what you can and can’t eat,” Emerson adds.
And because both Emerson and Kenny view their allergies as something they can control and manage, both boys enjoy their visits to CHOP.
“I like the doctors and nurses a lot, especially Dr. Brown,” says Emerson. “She’s really supportive and takes good care of me. We like to crack jokes about basketball.”
Importance of clinical trials
There’s another aspect of visiting CHOP that appeals to Emerson: He’s part of a trial for a new treatment researchers hope can desensitize patients with dairy allergies. Emerson was a good fit for a research study because he had a reaction to a very small amount of dairy (less than 1 teaspoon).
Kenny's milk allergy wasn’t sensitive enough to meet the study’s requirements. He tolerated a tiny dose of milk (half an ounce) in a food challenge, and then underwent a baked milk challenge at CHOP. Since then, three times a week he eats dairy in certain baked goods, such as cookies. It's “homework” his mom says he never misses. The hope is that by repeated small-dose exposure to baked milk, his body will eventually become less sensitive to dairy.
So far, Emerson hasn’t experienced any side effects or seen significant improvement in his allergies during the trial, but it may still be too early to predict long-term results.
If Emerson's current treatment doesn't improve his symptoms, the Food Allergy team will try other therapies until they find one that works for him. All children with food allergies don't react the same way to each treatment. That's why personalized therapies are a cornerstone of care at CHOP's Food Allergy Center — and why studies like the one Emerson is participating in are so important.
"I was a little skeptical about the study when I first learned about it," Emerson says. "But then I realized it could be beneficial for other kids like me who may have even worse allergies.”