CE Home > Occupational Therapy > OT04 Food Allergies and the Role of the Occupational Therapist

“What is food to one, is to others, bitter poison.”

                                                    — Lucretius

Susan Stein’s twin boys, Alex and Jordan, were 9 months old when their lives changed drastically. During a routine daycare visit, Alex suddenly developed hives all over his body. He was drooling and wheezing, his nose was running, and his eyes were swollen. At the hospital, he vomited constantly and was given Benadryl and epinephrine to finally reverse the reaction. Soon after, the twins both tested positive for multiple food allergies. The doctors assumed Alex had touched a toy or crawled on the floor where there were some remnants of peanuts.

The above scenario is one that has become frighteningly common these days. According to the Food Allergy & Anaphylaxis Network, 6% to 8% of children under age 3 and 4% of U.S. adults have a food allergy.¹ All types of food allergies appear to be rising sharply, and peanut allergies in particular in children have doubled from 1997 to 2002.^1,2 In addition, hospitalizations for children with food allergies have increased significantly over the last decade.³

Given these statistics, most OTs will probably, at some point, work with a client with a food allergy. OTs should be educated about food allergies to protect their clients from harm both in the clinic and beyond. In addition, OTs have the skill set to work with clients to determine ways to effectively manage food allergies within a variety of settings to support greater social participation in multiple contexts. The key problem OTs help to solve is: How can people with food allergies be careful and safe without missing out on meaningful social activities that may involve food?

Food Allergy Basics

A food allergy is an immune system response to a food protein.⁴ An allergen is the food protein that one is allergic to. Even trace amounts of an allergen can cause a reaction that ranges from mild to severe. Reaction symptoms can include hives, eczema, vomiting/diarrhea, cough/congestion, wheezing/difficulty breathing, and/or hypotension/shock.⁴

The most severe reaction is anaphylaxis, an emergency situation often characterized by generalized hives, airway swelling, reduced blood pressure, and/or persistent gastrointestinal symptoms. The most common cause of anaphylaxis is a food allergy reaction. Every year, anaphylaxis results in approximately 30,000 emergency department visits and 100 to 200 deaths.² Peanut and tree nut (e.g., almonds, cashews, pecans, and walnuts) allergies are most responsible for fatal anaphylactic reactions. Fatal reactions can occur within a matter of minutes.⁴ Although peanuts and tree nuts are considered the most deadly, any food can cause anaphylaxis if the person’s allergy is severe. And it may only take a tiny, undetectable amount to quickly set off a full-blown reaction.⁴

Why are food allergies increasing so rapidly? Although there is no scientific consensus, one popular theory is the Hygiene Hypothesis Theory: Western countries are so clean and sanitized that people’s immune systems don’t have enough to do. And when the immune system isn’t challenged, it may begin to react to innocuous things like pollen or food.⁵

Although a person can be allergic to any food, there are eight foods that account for 90% of food allergy reactions in the United States: milk, eggs, peanuts, tree nuts, wheat, soy, fish and shellfish.² Sesame allergies are also becoming increasingly common.⁴

Currently, there is no cure for food allergies. Strict avoidance of an allergen is the only way to prevent reactions. However, if a reaction does occur, it can be treated if action is taken properly and promptly.

The Diagnosis

Food allergies are often discovered at home when a new food is introduced to a child and the child experiences symptoms. Even the first introduction to a food can result in a severe reaction. On the other hand, a mild first reaction does not mean the next exposure will also result in a mild reaction. Actually, additional exposure often increases the severity of symptoms.⁶

After the first reaction, most parents will call the pediatrician to report their child’s symptoms. The doctor may then refer the child to an allergist for formal testing. A skin prick test or a radioallergosorbent (RAST) blood test is used to formally diagnose the food allergy. Sometimes, multiple food allergies are discovered through this testing.¹

Although the skin prick test and radioallergosorbent blood test are useful, an oral food challenge is the one definitive test for a food allergy. However, due to the obvious risk involved, it should only be done in a hospital setting under a physician’s close supervision. Food challenges are also performed when blood tests suggest an allergy may have been outgrown.¹

At the first meeting with an allergist, parents will receive a prescription for epinephrine and will be instructed on when and how to administer it. The epinephrine kit will need to travel everywhere with the child, and all caregivers should learn how to use it. Parents will probably be told to fill several prescriptions of the epinephrine so kits can stay in various places, such as daycare or Grandma’s house.⁴

Parents will also receive information about how to steer clear of the food allergen. They might receive a list of hazardous foods or types of restaurants to avoid because of the high likelihood that food will become cross-contaminated with the allergen. For example, Chinese restaurants and bakeries are often off-limits to people with nut allergies due to the prevalent use of nuts in those foods.¹

Families will be told that anyone and everyone who cares for their child needs to understand how to prevent ingestion, identify symptoms, and treat a reaction. They will be warned that food allergy reactions may be rapid, severe, and potentially fatal. It is no surprise that many families leave that first allergist visit feeling anxious and overwhelmed.

Food Allergies and the Emotional Impact

The initial diagnosis of a child’s food allergy can be shocking to the entire family. It may mean forgoing favorite restaurants, recipes, and packaged foods that may contain the allergen. Siblings may be resentful about some of these changes. On the other hand, they may feel determined to protect their sibling from this new threat.

Colleen Johnson vividly remembers her child’s food allergy diagnosis. “When we got home, I began to go through my pantry with my allergist on the phone. I threw away almost everything. I was extremely overwhelmed. The next trip to the grocery store took three hours. When I got home, I only had one bag of groceries.” 

For Stephanie Brown, the initial diagnosis of her son Gabe’s peanut allergy was taken in stride. She assumed he would continue to eat most anything that hadn’t caused a reaction in the past. She didn’t realize the seriousness of the diagnosis and the impact on their lives until another mother called her to say, “I’m so sorry to hear about your son.” She recalls that moment vividly — when the diagnosis hit her like “a ton of bricks.”

For weeks after that, Brown came to terms with the life-altering changes her family needed to make. She cried often when thinking of her son, and she worried that he might never be as carefree as other children. She also felt paralyzed with fear. She was afraid to feed him any new foods and afraid to leave him in the care of others.

Harnessing the Fear and Anxiety

Fear and anxiety are common among parents of children with food allergies. These parents live each day with the knowledge that just one bite of the wrong food could cause a potentially fatal reaction. In addition, parents often speak of their fear of the unknown answers to their questions — What would really happen if he or she ate the wrong food? Would he or she be able to identify his or her own symptoms and get help? In our absence, would someone else know what to do?

In a 2008 study, parents of food allergic children reported that the “life-threatening nature of food allergy evoked strong emotions of fear, guilt, and even paranoia.”⁷ These parents reported significant anxiety in managing their children’s safety and awareness of risk. On the other hand, parents were concerned that all of their worrying and hypervigilance might be negatively affecting their children.⁷

Researchers have identified the need for parents to find that “just right balance” (or the Goldilocks Principle) between protecting their children and letting their anxiety take over.⁸   Anxiety is normal and even functional if it serves to keep families vigilant about taking proper precautions. Accidental ingestions often will occur as a result of complacency.

However, it is debilitating to live in constant fear. One study published in Pediatric Allergy & Immunology found that children with a peanut allergy had a lower quality of life than children with diabetes. The children with a peanut allergy felt more threatened and restricted, especially when away from home.⁹

Many parents say their fears are lessened as they gain the support of other parents in the same situation. Support groups, Internet blogs, and newsletters help to give parents a sense of solidarity with other families. It is also helpful for parents to exchange their experiences and knowledge of local restaurants, manufacturers, physicians, and schools.

Impact of Food Allergies on Social Participation

Pediatric allergy specialist Mary Bollinger and her University of Maryland colleagues found through a survey that food allergies can have a major social impact on a child’s life. Parents and children often dread birthday parties, play dates, camp, and sleepovers because they’re situations that are uncontrolled and involve questionable food. Rather than putting their children in a potentially risky scenario, parents sometimes decide to forgo the activity altogether.

In Bollinger’s study, half of those surveyed had made significant changes to their family’s social activities due to their children’s food allergies. In addition, 41% of parents said their children’s food allergies had a significant impact on their stress levels.¹⁰ The study also revealed the impact food allergies may have in a school setting. Of the 87 families who completed the study, 34% reported that the food allergy had an impact on school attendance, and 10% have chosen to homeschool their children due to the food allergy.¹⁰

Although choosing to homeschool may seem like a drastic solution to some, it may be perceived as the only option for parents who do not feel that their children’s schools are taking food allergies seriously. For children with food allergies, school can feel like a minefield — class celebrations, field trips, craft projects, snacks, bus rides, and chaotic cafeterias. In one study, researchers found that 43% of children had at least one reaction while in school.¹¹ In addition, food allergy fatalities have occurred in school settings.¹²

The OT’s Role: Preventing a Reaction

The OT’s most important job is to protect clients from harm. In addition, clients and their families will appreciate the OT’s concern and will feel more relaxed in an environment perceived as “safe.” Remember Maslow’s hierarchy of needs? Clients need to have their most basic, bottom-level needs met first to move toward reaching their potential.¹³ Imagine being a child with food allergies working with an OT on oral motor skills — but not knowing if the food going into your mouth is safe for you to eat!

First and foremost, OTs need to check each patient’s chart and ask the client/caregiver about allergies before any oral motor/feeding therapy begins. A therapist does not want to be in the middle of treatment and discover the client has an allergy to the given food. Unfortunately, this does sometimes occur, and it creates a dangerous situation. In addition, how might this incident affect the trust between the child and his or her therapist?

Once a client’s food allergy is noted, there must be strict avoidance of the allergen during treatment to ensure the patient does not ingest or come in contact with the food. This means checking the ingredient labels of foods, lotions, or any other materials that may initiate an allergic reaction. Do not take chances — don’t use the product if the label is missing or unclear. Due to the serious reactions associated with nuts and peanuts, an OT may want to consider excluding these foods from all therapy sessions.

If food was used during therapy, OTs should thoroughly clean their area and equipment between clients. One study showed that peanut allergens can be sufficiently removed from tabletops by using common household cleaning products.¹⁴ The same study showed that soap and water will adequately remove any peanut protein during handwashing. However, the use of antibacterial hand sanitizer alone is not effective.¹⁴

Treating a Reaction

Every child should have a complete Food Allergy Action Plan completed by his or her internist or allergist. A blank plan is available from The Food Allergy & Anaphylaxis Network (FAAN). The plan specifies the child’s allergies as well as exactly what medication dosage should be given for specific symptoms. It should also have a current picture of the child and emergency contact information. A copy of this plan should always be immediately accessible.

OTs can encourage parents to create a mini notebook for the Food Allergy Action Plan so the child can carry it with him or her and have it available for emergency situations. That way the parents, child, and other adults can feel empowered to keep the child safe. School personnel can have a reference for safety in case something goes wrong. Preparing and rehearsing social stories with the child — much like those we use to help children feel prepared for fire or other disasters — can be helpful as well.

Antihistamines have no life-saving capabilities and are only useful in the case of a very mild reaction — maybe a few hives.⁴ If the reaction appears to be affecting more than one body system or the person is indicating swelling in the throat, epinephrine should be immediately administered and 911 should be called.⁴

It is a misconception that anaphylaxis will always include skin symptoms, such as hives. In reality, 80% of fatal, food allergy-induced anaphylaxis did not present with any visible hives; in these cases, the reaction immediately progressed to airway closure.⁴

Epinephrine shots are currently sold as either an EpiPen or Twinject device.⁴ Both shots must be pressed firmly into the person’s thigh for at least 10 seconds to allow the medication to be administered.⁴ Directions with pictures are on the back of the Food Allergy Action Plan. Parents and therapists can periodically practice giving the shot with a trainer pen.

Experts advise the use of epinephrine as soon as possible after the onset of an anaphylactic reaction. A “wait and see” approach can prove deadly in this situation whereas the use of epinephrine is generally considered safe.⁴

Paramedics should also be called promptly as the child might experience a second reaction after the epinephrine wears off. This is called a biphasic reaction. The risk of a biphasic reaction generally warrants a few hours stay at the hospital for observation. It is also the reason why many food allergic people carry two epinephrine shots instead of just one.⁴

Developmentally Appropriate Goals to Ensure Safe Social Participation

An OT who addresses the needs of a pediatric client with food allergies can use a developmental approach. The OT can guide the child toward the ultimate goal of managing food allergies with independence, confidence, and self-advocacy, while maintaining healthy participation in meaningful social activities. This goal can be achieved if children with food allergies are given age-appropriate expectations as they develop and mature. In addition, an OT can consult with school faculty and staff to ensure that their expectations of the child are developmentally appropriate and will ensure safety of the child.

When considering these expectations, it is helpful to use basic rehabilitation terminology. Based on a child’s developmental stage, he or she can be considered anywhere along the functional continuum between dependent and independent in handling his or her food allergies.

In general, an OT can take a family-centered approach. Behind every food-allergic child are parents who walk a tightrope between protecting their child and letting their child freely enjoy life. Parents are able to achieve the right balance through careful investigation and planning and by preparing their child to take the reins as he or she matures and develops confidence.

Parents and children will find that in the “real world” they will encounter people who will make extraordinary accommodations to safely include them in activities. On the other hand, parents and children will find that they need to make adaptations to participate in some activities. Either way, what is most important is that children do participate safely without allowing food allergies to exclude them from meaningful social activities with friends and family.

Below are some suggestions and information about various age groups with regard to food allergies:

Infants and preschoolers can be considered completely “dependent” on adults to protect them from ingesting or coming into contact with food allergens. Even preschoolers who can identify their allergies cannot be expected to make independent decisions about the food they eat.

• Children should wear a medic alert bracelet at all times. Bracelets should list food allergies and emergency contact information.
• Young children are not yet able to read food labels, but they should be included in the process of grocery shopping, meal preparation, and ordering at restaurants.
• Infants and preschoolers are messy eaters and often share or sneak food. They may still mouth toys and want to touch everything. It may be safest to eliminate the child’s allergen from the preschool classroom. Signs can be posted on doors, in kitchen areas, and therapy rooms.
• Kids should be asked to wash their hands before and after eating. In the case of severe allergies, teachers may want all the children to wash their hands when they arrive at school in case children without allergies have remnants of allergen-filled breakfasts on their hands.
• Use picture books and videos about food allergies to educate young children (see FAAN Web site to order). Explain potential symptoms in simple language so children can communicate them (e.g., tingly or itchy tongue).
• Make a small binder with emergency information for caregivers and babysitters.

Elementary Schoolers: By the time a food-allergic child is in elementary school, he or she probably needs moderate assistance (50% of the time). With practice, children this age can be more confident in articulating their food allergies and associated needs.

• The school nurse is the main contact person during school and is responsible for training staff on food allergies, demonstrating use of the epinephrine shot, and other related needs. This training is especially crucial in schools without a full-time, on-site nurse. The OT can work with the child, family, and school to problem-solve ways to increase social participation and improve daily management of the food allergies.
• The child may eat at a special “allergen-free” table. However, this may increase the child’s social isolation. Another option: The child eats with friends but puts his or her own food on a napkin or placemat on the table. Teachers may want to support the child to avoid sitting directly next to someone eating the allergen or have “Peanut Free Zones” pre-established where any child can choose to sit.
• When attending birthday parties and sleepovers, children may want to eat ahead of time or bring their own food. Parents can also call ahead to find out exactly what food is being served. For large events, parents should call the caterer or host well in advance.
• By first or second grade, children may begin to read food labels and order food at restaurants. It may be helpful to make a chef’s card (listing allergens) that can be given to a waiter when ordering. If there is still anxiety about ordering in a restaurant, it may help to role-play customer and waiter.
• Allergic kids need support from their classmates. FAAN has created the Protect A Life (or PALS) program to teach friends about food allergies. When kids learn about the reality of food allergies, they may then be less likely to bully or tease.
• The child should now be able to identify symptoms of a reaction and get help immediately.
• Children may now be able to carry their own epinephrine kits in a purse, fanny pack, backpack, or pants with big pockets.
•  Parents can be great resources for ideas if the school wants to serve a snack that is safe for all. Non-food items can be substituted as rewards or incentives (cute pencils, erasers, stickers).
• Children should have a box of “safe treats” in the classroom for class celebrations.
• The entire school can implement a “no trading/sharing” food policy.
• Public schools should make appropriate accommodations to ensure inclusion of food-allergic kids in all activities as required under federal law.

Middle and High Schoolers: By this age, kids are almost totally independent, but they may still need some “standby assistance” with decision-making.

• Younger teens may go to a friend’s house but call a parent to double-check ingredients.
• Adolescents often take risks and feel immortal. They may go off alone when they experience symptoms instead of getting help. Also, they may not consistently carry epinephrine with them. Fatality rates are highest for this age category.^{12, 15}
• Teach teens how drinking and drug use can alter a person’s judgment regarding choice of foods.
• Recognize the increasing need for peer support and encouragement.

Young Adulthood/College: By young adulthood, most people are ready to be fully independent in managing their food allergies. However, independence also involves choosing appropriate, safe, and accommodating environments in which to live and work. For example, a college should be chosen with consideration of factors such as dining services and proximity to a medical facility, and students should consider telling professors they have allergies.

Success in adulthood may be related to the confidence and skill building that occurred throughout childhood and adolescence. However, even independent people with food allergies need support, accommodations, and compassion from those around them.

Conclusion

It is important for OTs to understand the prevention and treatment of food allergy reactions — especially since OTs often use food during treatment sessions. However, attention to this subject doesn’t need to end there. Food allergies may be truly affecting an entire family’s quality of life. OTs are uniquely qualified to address the many issues associated with food allergies that may affect a child’s participation in meaningful social activities. An OT, with a background in child development and functional independence, can ensure that the child is given realistic and age-appropriate expectations for food allergy management. With creative problem solving, skill training, and a little empathy, OTs can help children develop the confidence and autonomy that will allow them to successfully manage their food allergies for a lifetime.

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Resources

• The Food Allergy & Anaphylaxis Network
  www.foodallergy.org
•  Food Allergy Initiative
  www.faiusa.org
• The Food Allergy Kitchen
  www.foodallergykitchen.com
• American Academy of Allergy, Asthma & Immunology
  www.aaaai.org