Lianne Mandelbaum’s son Josh was 2 years old when he asked to try a peanut butter sandwich she was eating.
Within 30 seconds of taking his first bite, Josh was covered in hives, his lips were swollen, his tongue began to swell and he started clutching his throat, unable to breathe. They rushed to the emergency room and eventually received a diagnosis that thrust her family into the overwhelming world of nut allergies.
Mandelbaum’s son is one of the millions of children who have been diagnosed with nut allergies in the U.S. Along with peanuts (which are technically a legume), common allergens can include walnuts and almonds, among others.
With so many different individual cases, bodies of research and online discussions, it can be hard for parents of newly diagnosed children to know where to begin. To help alleviate some of the early confusion, HuffPost spoke to parents and experts in the nut allergy world.
Here are their tips for responding to a nut allergy diagnosis.
Assemble a good medical team.
Finding a team of doctors you like and trust is a key first step. Typically, a board-certified pediatric allergist is the specialist of choice to advise families and prescribe epinephrine auto-injectors.
“If you don’t feel comfortable with your doctor and are seeking all your information online, then find another one who can better relate,” Mandelbaum, who founded the website No Nut Traveler, told HuffPost. “Find the doctor that’s the right fit, that makes you feel comfortable, that answers all your questions.”
Becky Bergman, founder of the Peanut Allergy Mom blog and mother of a 14-year-old son with a peanut allergy, echoed that sentiment.
“If you don’t like a certain doctor, then leave. Go to the next one,” she advised. “Don’t worry about offending people because it’s your child’s safety at stake. If they’re not a right fit, they’re not a right fit.”
Make action plans.
The first kind of plan involves understanding which nuts your child is or isn’t allergic to, said Dr. Andrew MacGinnitie an allergist-immunologist affiliated with Boston Children’s Hospital and Harvard Medical School. “A peanut allergy is one of the most common, but there can also be cross reactivity,” he explained. “So it’s important to have a plan that you’re going to avoid peanuts or tree nuts or all nuts, for example.”
Also hugely important is an emergency action plan, to help caretakers recognize an allergic reaction and know what to do.
Gina Clowes, national director of training and community outreach at Food Allergy Research & Education, told HuffPost the FARE website and other online sources offer emergency plan documents you can print out for free. “These explain exactly when and how to treat a mild or severe allergic reaction,” she said, adding that an epinephrine auto-injector (Auvi-Q, Adrenaclick or EpiPen) is the treatment for a severe allergic reaction, or anaphylaxis.
“The epinephrine auto-injectors come with trainers so that you can practice,” Clowes continued. “It can feel like a bit of a hurdle for a non-medical professional to inject someone, but it’s crucial that you commit to doing what is needed to save a life.”
“Make copies of the plan, make sure everyone who is in charge of your child ― parent, caregiver, teacher, grandparents ― understand the plan and know how and when to act,” Melissa Campbell, the mother of a 9-year-old with a peanut allergy and an administrator of the Facebook group No Nuts Moms Group, told HuffPost.
Look to expert research.
“It’s important to find reputable sources for support, as we are inundated with information today, but not every source can be trusted,” said Clowes, adding that the FARE websiteoffers information that has been reviewed by the organization’s medical advisory board.
“Allergic Living magazine is a fantastic resource that includes new products, recipes, research updates and the latest news in the food allergy world,” Clowes added.
Mandelbaum also recommended Allergic Living (“the Martha Stewart for people with food allergies”) and pointed to groups like FARE, as well as Kids With Food Allergies and the Allergy and Asthma Network.
“It’s so easy to take advice online and sometimes it’s really good, but sometimes it’s not relevant to your situation,” Mandelbaum said, adding that your child’s doctor ― who is familiar with their specific case ― should always be the top resource.
Find your tribe.
Beyond the main advocacy groups, it’s helpful to seek support from your “mom tribe” or “parent tribe,” said Bergman. A group of fellow allergy parents can help by answering questions, hearing out rants or even just being there to drink a bottle of wine and cry during hard times.
“Connect with a village that has your back. They will be your best friends as you go through this.” Bergman said. ”[My tribe and I] watch out for each other’s kids and make sure if one of us can’t be nearby, or available (during field trips, class parties, etc.), someone else is around. It’s an enormous peace of mind that I feel blessed to have had all these years.”
Bergman also touts local parent groups that do things like organize events for people in the food allergy community. Mandelbaum noted that these groups can help parents formulate good questions to ask their children’s doctors at appointments.
Groups can provide emotional support and a sense of understanding, according to Campbell. “I found a support group online and have made life long friends. Quite often people who don’t live it don’t understand,” she said. “Thankfully, all my family and friends have been accommodating and kind.”
The support doesn’t have to come from fellow allergy parents. “Let others know what you’re going though,” said Clowes. “A good friend doesn’t have to be a familiar with food allergies to listen or be there for you.”
Talk to your child.
What you tell your child about his or her food allergies should depend on age, temperament and maturity level.
“Most children are diagnosed when they are younger, so right away, you can introduce the concept of ‘Abby’s cookies’ or ‘Abby’s sandwich’ to let your child know that sometimes her snack or sandwich will be different,” Clowes said. Once children reach preschool age, she recommends telling them about their allergies and the idea that certain foods could make them really sick.
“When a child is young, conveying the serious nature of the allergy is demonstrated by a parent always carrying the epinephrine auto-injectors, always reading ingredient labels and asking detailed questions about food preparation and ingredients at family gatherings and restaurants,” Clowes explained.
“When kids are older they’ll often ask questions when they are ready for the answers. For example, ‘What would happen if I ate a nut?’ or ‘What does peanut taste like?’ ‘Could I die from this?’” she added. “These questions should be answered with care. Answer truthfully, but in a simple and age-appropriate way and always by instilling hope and confidence.”
Campbell and MacGinnitie both said a good start is just making sure your child does not accept food from anyone other than Mom, Dad, or another trusted adult like a grandparent or teacher in the know.
Bergman recommended being matter-of-fact and explaining things without fear or anger. “If you accept it and give them the tools to manage their allergy without emotion, that is what they will do,” she said, adding that she’s raised her son to feel comfortable saying no to offers of food.
Rather than feeling alone or left out, Bergman’s son understands that life is more about making social connections than food or material things. “Matthew also knows the world won’t change for him ― it’s up to us to adapt to our surroundings with what we have or don’t have,” said the mom. “And just as he realizes the world won’t change for him, it’s OK for him to say no and never have to apologize for deciding what makes him feel safe and secure.”
Campbell emphasized teaching your child to advocate for themselves as they grow up. “They can ask simple questions. Is this safe for me? Does it contain my allergens?” she explained. ”My daughter reads labels and asks if food is safe for her. She eats out and is a real foodie. She is a world traveler and does not let food allergies stop her. We always have Plan B. She is positive and proactive. If a restaurant cannot accommodate us we go elsewhere. We talk to the manager when we make reservations and again on arrival.”
Figure out your food strategy.
“Don’t be afraid to empty your pantry and refrigerator and start over,” said Bergman, adding that she thinks of it as another eating style, like vegan or low-carb. “It can be fun. it doesn’t have to be scary … And you can make your house a nut-free zone. You can’t control the school, extracurricular and sports your kid might participate in, but you can control your home.”
MacGinnitie said families should do what makes them feel comfortable ― whether that’s getting rid of all nuts, or continuing to let certain family members eat nuts in a safe way. “You want to keep it out of reach of toddlers, though ― especially if there are two young kids in the house, and one is eating peanuts while the other is allergic.
“You want them to eat it in an isolated setting, not with the other kid next to them,” he added. “And make sure everything is wiped up.”
Campbell said she’s taught her daughter to avoid food-sharing and eating products with no label. They also don’t eat from places where there’s a chance of cross-contamination, like bakeries, buffets and restaurants serving nut-heavy cuisines.
Bergman relies on David Bloom’s online Snack Safely food guide. Clowes recommends allergy-friendly cookbooks and blogs, which offer recipe ideas and substitute ingredients.
“Always focus on what your child can have, rather than what he or she can’t have,” said Clowes. “And if you’re brand-new to food allergies, it might be best to avoid restaurants until you have enough expertise to ask the right questions and confirm answers. The stakes are high when a serious error is made.”
Educate your community.
Clowes also advises explaining your child’s allergy to friends and family in clear and easily comprehensible terms.
“Stick to the most important facts at first. For example, Ian can have a serious reaction and could even die from a very small amount of peanut,” she said. “He can’t have a donut from the corner bakery because these foods have trace amounts of peanuts and nuts.”
Sharing a story of a child who died from anaphylaxis often hits home for people who have trouble believing an innocent food could cause a life-threatening reaction.
“Seeing those photos and reading about these tragic losses breaks through their denial or disbelief,” said Clowes. ”Taking your parents or in-laws to the allergist’s office with you is another way to bring home the seriousness. When they hear about the dangers of food allergies from an expert, they are often more willing to comply.”
Bergman said she tries to dispel myths around food allergies, like the notions that they can’t be severe, or that all kids outgrow them. As her son’s advocate, she focuses on sharing her experience and knowledge with a sense of kindness. “No one wants to feel like they’re being put down or treated like they’re dumb because they don’t understand something,” she said.
Mandelbaum emphasized the power of facts. “Go to a vetted website or advocacy group to gather stats, videos, and more,” she said.
“Sharing your experience with other people can be overwhelming, so you can become very emotional. When you get upset, the person you’re explaining this to tends to just shut off,” she continued. “So, sometimes just handing them a resource is a much better situation ― a really well done video or articles from Allergic Living, even stories about deaths resulting from allergic reactions. It’s more useful than a mother screaming.”
Educating your community can involve educating other children as well. Campbell said there are wonderful, age-appropriate books on this topic.
“One of my favorites is The BugaBees: Friends With Food Allergies by Amy Recob. I have donated copies to my daughter’s class, and the teachers have read it to the students. Children are compassionate and kind. They look out for their friends. Many schools already have policies in place. Work with your allergist and your school to make a plan for your child to be safe and included at all times.”
Tend to your mental health.
Living with a severe food allergy can impact a child’s mental health.
Mandelbaum said her son sees a psychiatrist to manage his anxiety around the risk his surroundings can pose. “He can feel safe knowing that he’s not going to die because people are eating peanut butter in the cafeteria, but that he also has to take precautions,” she said.
Having a child with a severe food allergy can also bring a certain “invisible pain” to parents, said Clowes.
“I discourage parents from spending too much time on the internet because there’s misinformation out there and sometimes this ‘my kid is more allergic than your kid’ oneupmanship that just drives parents crazy,” MacGinnitie said.
While many families can cope on their own, many parents and children also benefit from seeing a therapist. “We have a psychologist who specializes in food allergy,” MacGinnitie explained. “A visit can help them review their worries, understand the level of risk, and find an appropriate level of concern. Because you have to be very careful but you also have to live your life and let your kid live their life.”
“My advice to any parent would be to first of take a deep breath,” said Campbell. “It is so overwhelming at first, but it does get so much better.”
MacGinnitie said reassuring parents is an important part of his job. “Realize that while it’s so tough to have a child with a chronic condition, particularly a food allergy, the magnitude of risk is often dramatically overestimated ― partially because of people reading things on the internet,” the doctor said.
“Many more children die every year in car accidents than of food allergies,” he added. “Of course all of these deaths are tragic and we want to work to avoid them, but remember this diagnosis doesn’t have to be quite so severe.”
This story has been updated to include more information about peanuts, as well as to list other common allergens.