May 3, 2011 3:41 PM
When her son, Thomas, was 19 months old, Eleanor Garrow-Majka discovered that he had a severe food allergy. He was eating a toffee bar at a family party. He took one bite and began coughing. His face swelled up and he broke out in hives. Eleanor rushed Thomas to the hospital. He was experiencing a life-threatening allergic reaction call anaphylaxis, or anaphylactic shock.
By the time medical personnel began treating him "he was one huge hive," Eleanor recalls. "They worked on him for three hours before he began to look like himself again."
When the emergency was over, Eleanor took Thomas to an allergist, who found that he is severely allergic to tree nuts and sesame, and a number of other allergens.
Eleanor's experience is typical for parents of children with serious allergies. Her son took a single bite of a normally harmless food and her life was changed forever. "It's overwhelming for parents," says pediatric allergist Jacqueline Eghrari. "A life-threatening diagnosis is one of the scariest things a parent will ever hear."
Eleanor's initial reaction was shock. "I knew nothing about food allergies or anaphylaxis," she says. "None of my friends or family members had food allergies."
When the shock wore off, Eleanor was determined to learn everything she could about food allergies. But where can parents like Eleanor turn for reliable information and support?
If your child has a serious allergy, your pediatrician will most likely refer you to a pediatric allergist, or immunologist. You can also request a referral.
An allergist, or immunologist, is a physician who is trained to treat allergies, asthma, and other diseases of the immune system.
A recent study found that food allergies are routinely misdiagnosed, because of misleading test results and poor research. In another study, only 30% of the primary care physicians surveyed said they felt they had the training necessary to care for children with food allergies. This is why it is important to consult a pediatric allergist, because they have the expertise to identify and treat serious allergies.
Your pediatric allergist will conduct tests to determine what your child is allergic to, and create a treatment plan for those allergies. Perhaps most important, the allergist will educate you and your child about his or her condition. "The number one way to treat food allergies is with education," says pediatric allergist Jacqueline S. Eghrari-Sabet, MD.
For Eghrari, education is an ongoing process for the patient, her family, and everyone else in her life. "I try to see my food-allergic kids every summer, before they go back to school. We do a food allergy check-up. We fill out health forms, which is important whether they are going off to preschool or to college. We talk about where the epinephrine injection will be kept when the child is at school. And we make sure the pens are renewed. I also give kids a refresher course on what to do in case of an emergency." Eghrari provides parents DVDs and fliers about food allergy issues, so they can educate schoolteachers and administrators.
Because your allergist will play such an important role in your child's treatment, be sure to find someone you and your child feel comfortable with. A good allergist will provide information and support in order to help keep your child as safe as possible.
There are countless web sites for patients with allergies. But Eghrari cautions parents to be careful about where you get your information. "Chat rooms can be great support, but when you stick 20 parents in a room to talk about any subject, there is a lot of misinformation, too. Make sure you're getting your information from legitimate sources."
Reliable online sources for allergy information include:
AAAAI web site provides information for patients and physicians, and features a directory of allergists and immunologists around the country.
This web site provides basic information on food and other allergies, as well as information on recent research.
This nonprofit organization provides members a sense of community and solid information. Membership costs $50 a year, and provides access to the recipes, member discounts, forums, and comprehensive information on all types of food allergies.
FAI is a national nonprofit that supports research into food allergies, diagnosis, and treatment, and promotes food allergy education and advocacy.
Members gain access to more than 1,000 allergy-safe recipes, FAI's biannual magazine, and other resources. A family membership costs $25 for one year.
Pediatric allergist Anne Miranowski, MD, always advises parents to join a support group if they can. "Support groups are a great way for families to meet people who are going through the same experience," she says.
When Eleanor Garrow-Majka learned that her son had severe allergies, she couldn't find a support group in her area. So she created one. "It's so important to have support, especially in the beginning, when your child has just been diagnosed," she says. "It was such a relief to find out I wasn't alone."
The support group Garrow-Majka started in the Chicago suburbs still exists, although she's no longer the leader. She and her family recently moved to Virginia to work with the Food Allergy and Anaphylaxis Network (FAAN), where she is vice president for Education and Outreach. The FAAN web site has information on support groups around the country. If you can't find a group in your area, FAAN can provide advice on how to organize one.
Ana Suarez, whose son has serious food allergies and asthma, says her extended family is her main source of support.
Unlike Garrow-Majka, Suarez was not surprised when her son was diagnosed with food allergies, because his father is allergic to eggs and shellfish. And her brother's son has a severe peanut allergy.
Suarez and other parents of children with allergies emphasize the importance of educating those around you. "Involve your family and good friends, if you can," Garrow-Majka says. "Explain your child's allergy triggers; show them how to use epinephrine, and how to read food labels. The more information everyone has, the better."