Understanding and managing life-threatening reactions
Nine-year-old Marysa Gavankar and her parents were enjoying a meal together at a local restaurant where the food-allergic little girl had dined safely many times before. Marysa ate the usual fresh-cooked French fries and a plain hamburger patty, supplemented with a bun from home. In between bites, she sipped a raspberry-flavored soda, a new drink for her. When they finished eating, Marysa said her tummy hurt.
Marysa’s stomach pain worsened as the family walked to their car. Piling into the vehicle, her dad quickly drove to the closest hospital while her mom took out a Twinject of epinephrine. In the two minutes it took to reach the emergency room, Marysa grew pale, her eyes glazed over, she became dizzy…and her throat tightened. Her mom injected the epinephrine into the little girl’s thigh as her dad ran into the emergency room to get help.
Marysa’s mom, Trish Gavankar of Apex, North Carolina, informed the intake coordinator that her daughter was in anaphylactic shock, quickly adding her and her husband’s medical qualifications (she is a registered nurse and he is a physician) to emphasize the urgency. Marysa was dashed to treatment on a stretcher with her parents running behind.
After receiving intravenous medications, Marysa’s symptoms subsided. Several hours later, the family was able to return home.
“We were completely shaken to the core,” says Trish Gavankar of the incident that occurred in April 2011.
This was not the first experience with anaphylaxis for Marysa, who is allergic to peanuts, tree nuts, sesame, dairy, eggs, peas, all legumes (except soy) and bananas. She also has multiple food intolerances, a list that includes carrots, melons, cucumbers and, at times, apples and pears.
Marysa’s first allergic reaction occurred just before her first birthday—angry, red blisters swept across her face after she tasted a bit of yogurt.
“The immediate transformation of her beautiful, little face is etched in my mind forever,” Trish Gavankar says. “Those moments of complete, helpless panic bring home the reality of food allergies. The day before, we were worrying about who was coming to her first birthday party. The next day, we were faced with the fact that the wrong food could kill her. Our world shifted.”
Marysa’s history of allergic reactions, including several episodes of anaphylaxis, illustrates what many families navigating food allergies know—reactions are unpredictable.
“Anaphylaxis is not one precise, predictable thing. It’s like a storm. Each event is different and many factors are involved. There’s no absolute rule about the sequence of what happens,” says Lucy Gibney, MD, founder and CEO of Lucy’s Cookies who has a background in emergency medicine. “Anaphylaxis is elusive and scary.”
The Food Allergy & Anaphylaxis Network (FAAN) defines anaphylaxis as a “serious allergic reaction that is rapid in onset and may cause death.” Food allergies prompt most anaphylactic reactions outside the hospital. Medication, insect stings and latex are other common triggers.
The symptoms and severity of allergic reactions differ among individuals and they vary with each person every time there’s exposure to an allergen. Gibney explains that reactions can occur across a spectrum that begins with mild symptoms, such as a rash, itchy, watery eyes and a runny nose. (See here.)
“Allergic reaction is sometimes referred to as ‘immediate hypersensitivity reaction,’” Gibney says. “During this process, allergen proteins activate immunoglobulin E (IgE) antibodies located on immune cells, causing the release of histamine and other chemicals which lead to a variety of effects.”
The offending food can cause an itchy mouth or a blotch on the cheek upon contact. Hives and runny nose are signals that the allergic response is moving throughout the body, Gibney says.
Along the allergic reaction spectrum is early anaphylaxis, with symptoms that include wheezing, near fainting and throat swelling. Wheezing or coughing signal that the respiratory system is involved. Signs that the cardiovascular and circulatory systems are involved include skin puffiness, near fainting and throat swelling.
Further along the spectrum is anaphylactic shock, when oxygen delivery and blood flow in the body are restricted. If anaphylaxis progresses, it ultimately can lead to respiratory failure and cardiovascular collapse, resulting in death.
“When blood flow and oxygen delivery are compromised, a patient is getting sicker. At this point, anaphylaxis can cause damage to body organs and it must be treated very, very quickly or avoided altogether. As shock progresses, respiratory and/or cardiovascular collapse and death can result,” Gibney explains.
Although skin symptoms are common during allergic reactions, people having severe, life-threatening anaphylaxis are not likely to show skin changes, notes Wesley Burks, MD, chair of UNC Department of Pediatrics and physician-in-chief at North Carolina’s Children’s Hospital in Chapel Hill. Often in these cases, the reaction progresses quickly to respiratory symptoms, such as wheezing, without the early clues of hives or itchy rash.
The incidence of food allergies in children is on the rise. FAAN states that allergies to peanut and tree nuts in children seem to have tripled between 1997 and 2008. In July 2011, a report in Pediatrics confirmed the growing prevalence of food allergies in American children. The national study funded by the Food Allergy Initiative (FAI) found that 5.9 million children (8 percent) in the United States have a food allergy. The results of the survey of 38,480 families also revealed that a third of the children had multiple allergies, with almost 40 percent reporting a history of severe reactions.
Children with asthma and food allergies are more likely to suffer a life-threatening reaction, according to the National Institute of Allergy and Infectious Disease (NIAID). In addition, those who are allergic to peanuts, tree nuts, fish or shellfish are more likely to have a severe reaction.
The fact is that any person with food allergies may be at risk for a life-threatening reaction—and neither the severity of an earlier reaction or lab tests are true indicators of the level
“You cannot tell how severe your next allergic reaction will be based on the severity of your previous reactions. No available tests can predict how severe a future allergic reaction will be,” states NIAID’s Guidelines for the Management and Diagnosis of Food Allergy in the United States (May 2011).
That means that people with food allergies must be prepared at all times. In addition to always carrying two epinephrine auto-injectors, NIAID recommends that those with allergies wear medical identification jewelry and have an emergency anaphylaxis action plan. Outlined by your physician, the plan provides lifesaving directions so those with allergies (and their caregivers) can act quickly in an emergency.
“A plan makes it clear, for example, whether the patient should use an antihistamine or epinephrine plus an antihistamine in various emergency scenarios,” Burks says. “It should be worked out ahead of time so the patient isn’t trying to make a medical decision during a reaction.”
Burks recommends that plans be reviewed regularly and adjusted as circumstances change. For example, a weight gain could mean a child requires an EpiPen rather than an EpiPen Jr.
Quick use of epinephrine during anaphylaxis is essential because it helps correct dangerous blood vessel changes and tightening airways, says Gibney.
“The goal is to stop anaphylaxis before it unfolds. Turning it around can be very difficult or impossible and that’s when death occurs,” she says. “If you’re prescribed an epinephrine auto-injector, carry it all the time, make certain it’s not beyond its expiration date and know how to use it.”
To practice using the medication, Gibney recommends injecting an expired auto-injector into an orange. Both EpiPen and Twinject websites provide training videos.
“Don’t ever be afraid to use epinephrine—it’s a natural body chemical. And the injector is just a shot,” she says, adding that additional epinephrine may be needed as quickly as five to ten minutes after the first injection. That’s why NIAID recommends carrying two auto-injectors, not one.
Researchers are making headway into decreasing the risk of anaphylaxis and finding a cure for food allergies. One promising treatment, immunotherapy, trains the immune system to tolerate allergic triggers by exposing the body to minute doses of an allergen over a period of time. Various studies have used immunotherapy for peanut, egg and milk allergy. This desensitization has been shown to be successful in clinical trials.
“The studies are interesting and there are some promising results—but it’s still investigational,” says Burks, emphasizing that “this is not something a family or doctor should do outside a research environment,” as dangerous allergic symptoms can occur during the course of the study.
Those who enter clinical trials must be aware of the potential for symptoms, as well as the time involved, says Corrine Keet, MD, assistant professor of pediatrics at Johns Hopkins Children’s Center.
“Each family needs to decide if the commitment is worth it for them and whether they want to participate at this level of research or wait until more is known,” she says.
Marysa’s family enrolled her in an immunotherapy clinical trial in 2009 with hopes of helping conquer food allergies and her own anaphylaxis.
“I wanted to be safer around dairy. I also liked helping my friends who have food allergies,” says Marysa, who participated in the first segment of a clinical trial for milk allergy sponsored by Johns Hopkins Children’s Center in collaboration with Duke University Medical Center.
Interim results of the study were presented in March 2011 at an American Academy of Allergy, Asthma & Immunology (AAAAI) meeting. Researchers found that most participants were desensitized to milk after 18 months of oral immunotherapy—but this doesn’t mean they could truly tolerate dairy.
“In this context, ‘tolerance’ means a state of non-reactivity that does not require ongoing exposure to the allergen. Desensitization refers to a more temporary state,” Keet explains. “These studies are showing very encouraging results. Ten years ago, we would have said that there was nothing we could do to treat food allergy but now it looks like there will be options. In ten more years, I hope we’ll have a method for curing food allergy that can be conducted in your local allergist’s office.”
Living with Allergies
Responding immediately to anaphylaxis is top priority. When symptoms resolve, the investigational work begins. People often don’t know exactly what triggered their reaction and that knowledge is an important key to avoiding another similar episode.
Marysa’s parents suspected her anaphylaxis was prompted by an unknown ingredient in the soda she drank at the local restaurant. The day after Marysa was released from the hospital, Trish Gavankar did some digging and discovered that the raspberry syrup in the soda was processed on the same equipment as an almond syrup. There was no indication on the drink’s label of the risk of cross contamination.
Marysa and her parents continue to hope that studies conducted at Duke, Johns Hopkins and other research centers around the globe will someday make her world safer. In the meantime, they refuse to let food allergies define her.
“Yes, she has food allergies—but food allergies don’t have her,” says Trish Gavankar of Marysa, who loves to draw, swim, ski and play with friends and American Girl dolls. “We’re proud of the young lady she has become. She’s our hero.” LW