A recent study asked 859 families about the food allergy care they received from their allergist and pediatrician. Some of the questions were about the way they were treated. Other questions were about the information they were given. The results showed both good news and bad news.

Most parents felt very good about their doctors
Nearly all said that they were treated with courtesy and respect. They also said that the doctor listened to their questions and concerns.

“I was happy to see parents felt very good about their physicians,” states Dr. Ruchi S. Gupta¹, one of the study’s authors. “This shows they have confidence in their doctors. If the doctor tells them something, then hopefully they’ll follow the advice.”

However, a communication gap exists on key information
There are certain food allergy management issues that should be discussed at every doctor visit. Unfortunately, many parents did not remember getting this information. Here are three areas parents reported:

• When to use the epinephrine auto-injector – Sixty-eight percent of allergists and 37% of pediatricians explained when to use epinephrine. Epinephrine is the medicine that is the first treatment for severe allergic reactions, or anaphylaxis. It comes in an auto-injector that makes injection easy.
• How to use the epinephrine auto-injector – Only 47% of allergists and 20% of pediatricians explained how to use the epinephrine auto-injector.
• Written emergency plan – Fifty-six percent of allergists and 24% of pediatricians provided a written emergency care plan. An emergency care plan describes allergy symptoms for the child who has allergies, and tells caregivers which medicines to give when.

The study also found that the child’s age and type of allergy affected communication. Allergists were more likely to explain when and how to use epinephrine if the patient was a young child. Pediatricians were more likely to provide this information when the child was allergic to peanuts versus other foods.

Parents are often overwhelmed
“A food allergy diagnosis is a big deal,” notes Dr. Gupta. “You can get a lot of information very quickly. This study does not tell us if providers are not discussing these things or if parents are not remembering it. But the bottom line is that there is a communication gap between parents and providers.”

Currently the only treatment for severe food allergies is complete avoidance of the food. Because completely avoiding common foods is extremely hard, food allergies affect every aspect of the family’s life. Families must learn how to keep their child safe at home and school, in social situations, when traveling, and so forth.

“Food allergy management is all about education and prevention,” adds Dr. Clifford Bassett,² a member of the Medical Scientific Council of the Asthma and Allergy Foundation of America. “Preparedness is the key. You need to have a written program in place that you can follow and rely on. You need to know what to do in a reaction. And the coach, school nurse and others need to know, too.”

How to ensure you get the information you need
Dr. Gupta believes that “doctors are not purposely not providing this education. It’s often a matter of time. If the family appears comfortable with food allergy management, the doctor may not start the conversation. But parents should always feel comfortable asking for information.”

One solution is to come to the appointment with a checklist of questions to ask. For example:

• When and how to use the epinephrine auto-injector – This makes me nervous. Can you please explain (or remind me) when I should be using it and how to use it?
• Having enough epinephrine auto-injectors – How many auto-injectors are you prescribing? I need to have two at home, two at school, two at daycare, etc.
• Written food allergy management plan – I worry that I won’t remember everything. Can you please give me a written food allergy management plan that I can refer to later?
• Resources to review at home – Do you know of any resources that would help me?

Be sure to ask your questions about food allergy management first. Don’t wait until the doctor is walking out the door. Then repeat things back to the doctor (or other medical provider). This will help ensure you did not misunderstand.

“In an emergency,” adds Dr. Bassett, “people often get panicked. That’s why it’s important to keep it simple. What should you look for, and what should you do? These are the most important things for parents to know.”

Key takeaways
If there is anything that you do not understand, speak up! The most important things are:

• The epinephrine prescription – get enough auto-injectors for your needs
• Recognizing and treating a reaction – know what to do and when to do it
• Have a written action plan – that you and other caregivers can refer to

Plus, you should know that Kids With Food Allergies has many free resources to help you manage your child’s food allergies on our mobile-friendly website.

Bring our handouts with you to the doctor’s office, or check it out on your mobile phone.

Children with Food Allergies: What Parents Need to Know

Anaphylaxis: Severe Allergic Reactions

¹Ruchi S. Gupta, MD, MPH, is an Associate Professor of Pediatrics and the Director of the Food Allergy Outcomes Research Program in the Center for Healthcare Studies at the Institute for Public Health and Medicine at Northwestern University’s Northwestern Feinberg School of Medicine. She is also an attending physician at the Ann and Robert H. Lurie Children’s Hospital of Chicago, and the author of The Food Allergy Experience.

²Clifford Bassett, MD serves on the Medical Scientific Council for the Asthma and Allergy Foundation of America. He is an Assistant Clinical Professor of Medicine at the NYU School of Medicine, and is on the teaching faculty of Cornell Weill Medical College. Dr. Bassett is a frequent health contributor in television, radio and print media.

References

Blumenstock, Jesse A., et. al. (2016). Parent report of food allergy management by pediatricians and allergists. The Journal of Allergy and Clinical Immunology: In Practice.