New evidence suggests that introducing at-risk infants to allergenic solids plays an important role in allergy prevention. But at home with young babies and spoonfuls of anxiety, parents are struggling to adapt to the program. We report on the psychological battle to do the right thing for baby. First published in Allergic Living magazine; to subscribe click here.
At 2 years old, Evan Cacioppo doesn’t eat dairy, eggs, wheat, peanuts, tree nuts, mustard, oats, rye, shellfish, chickpeas and green peas. But young Evan doesn’t have any known food allergies. Instead, this laundry list of foods actually represents the allergens avoided by his 4-year-old sister, Ella. The young girl has had two anaphylactic reactions to food – one, the first time she tried wheat, and one recently during a baked egg challenge. Her mom has seen her covered in hives on many occasions. This is why Becca Cacioppo can’t bring herself to feed Evan any of his sister’s allergens.
“I want him to eat these foods, but I’m scared,” says Cacioppo, who lives with her family in Leominster, Massachusetts. “I haven’t tried wheat or any of the others because I’m so petrified to go down that road again. I know that he needs to try these foods, but it’s so hard to give another person an offending food.”
Cacioppo is hardly alone in her fears. Many parents have anxiety over introducing foods to infants when they have a reason to believe the child might be allergic. The worry could stem from a family history of food allergy, such as an allergic sibling or parent. Other times, minor symptoms suggest the baby could have an allergy, it’s just not clear yet what that is, and the everyday act of feeding begins to feel like a game of Russian roulette. Add in conflicting information from doctors and the media and a pervasive cultural belief that’s it’s beneficial to delay certain foods – and it’s no wonder that parents are holding off on feeding high-risk foods to their babies.
The problem is, doctors have a much better understanding now about what’s better for your allergy-prone baby than they did even a few short years ago, and waiting is not the answer. “If they can eat it and keep it in their diet, studies are showing more and more that this might prevent the allergy from developing,” says Dr. Ruchi Gupta, associate professor of pediatrics and medicine at Chicago’s Northwestern University.
It’s also important for kids both nutritionally and socially to have as much of a full, normal diet as possible, so the goal becomes finding a way to cut through that anxiety and get the baby eating, in a way that works for each family.
To understand just how deep-rooted our notions are about when you should introduce potentially allergenic foods to babies, you have to go back almost 17 years. In 2000, the American Academy of Pediatrics’ committee on nutrition published a paper on hypoallergenic infant formulas which included the following recommendations for infants who were at high-risk for developing a food allergy because of family history: babies shouldn’t have their first taste of dairy until age 1, eggs until age 2, and tree nuts, peanuts and fish until age 3. This guidance was based on very limited evidence.
These AAP guidelines were only ever meant for babies who were at an increased risk of food allergy, not for the population as a whole. “However, that became generalized to some extent for everybody,” says Dr. Scott Sicherer, chief of pediatric allergy and clinical immunology at the Icahn School of Medicine at Mount Sinai in New York.
“Parents and the public began thinking, ‘peanut causes allergy and children should not eat anything with peanut until they are 3 years old,’” he says of the belief that took hold. Even back in 2007, another leading allergist told Allergic Living that the guidance “was a mess, and had no basis in science.”
With the spike in the disease’s prevalence, by 2008 it had become clear that delaying foods certainly wasn’t preventing food allergies – and those guidelines were rescinded. At the time, no clear direction was given on when to introduce potential allergens, just that there was no compelling reason to delay any food. But with no convincing evidence and an unabating fear that their 6-month-old could have a serious allergic reaction, many parents simply opted to hold off on trying foods like peanuts and tree nuts.
Finally in 2015, a landmark study provided proof that early food introduction could actually prevent allergy – or at least one significant allergy. The groundbreaking Learning Early About Peanut Allergy (LEAP) study showed that introducing the maligned legume early in life to infants who were at high risk of an allergy reduced their odds of actually becoming allergic to this food by as much as 80 percent. The feeding process also proved a safe intervention: when introducing the food to infants between four and 11 months, the reactions, if any, were mild and resolved with antihistamines.
That study prompted the National Institute of Allergy and Infectious Diseases (NIAID), with the backing of the AAP, the major American allergists’ organizations and patient food allergy organizations, to issue specific guidelines in January on how parents should introduce peanuts to their infants, depending on a child’s level of allergy risk.
The guidelines recommend infants with the highest risk of peanut allergy (those with egg allergy or severe eczema or both) begin eating peanut-containing foods at four to six months of age, likely after first being allergy-tested. They recommend that babies with mild or moderate eczema begin eating peanut-containing foods at six months, while those without eczema or any apparent food allergy can start eating peanut whenever their families would normally begin the food.
But the online reaction to the guidelines indicates many parents are not getting the message that eating earlier – not later – is helpful. You didn’t have to look far down in the Facebook comments on any article about the NIAID-sponsored guidelines to see the skepticism, resistance and plain misunderstanding of the guidelines or the research that drove them.
Many mothers objected that the research couldn’t be right – that they ate peanut butter all through pregnancy and breastfeeding, and their child still ended up with a peanut allergy. (What articles seldom mentioned is that ingesting proteins through breast milk is not the same as a baby eating peanut.) Other parents were adamant that a child’s immune system should mature before being given a potential allergen. And a prevailing sentiment was: Research aside, there’s no way l’m putting my small infant, who has no way of communicating with me, at risk of having an anaphylactic reaction.
Unfortunately, this approach might actually be putting kids at greater harm. Think of it this way, says Dr. George Du Toit, co-author of the LEAP study. Avoiding peanut carries an 18 percent risk of peanut allergy, while the early introduction of peanuts in the high-risk kids brings the odds of allergy down to 3 percent.
“I think most parents and pediatricians have this hangover from what was told to them for years. It’s unfortunate, because there really was no basis for telling people to avoid feeding their children these foods,” says Dr. James Baker, the CEO of Food Allergy Research and Education (FARE), who worked as an allergist for 30 years before joining that organization. “We now know at best it was incorrect, and at worst it potentially could have increased the number of children who became food allergic.”
Baker says it’s up to the family doctors, pediatricians and allergists to properly communicate the research and new guidelines to parents. “The medical community was responsible for the previous recommendations, so certainly they are now responsible for explaining the reasons for the revised guidelines,” he says. They need to convey the early feeding message “in a way that calms fears and helps parents to grasp how to go about safely feeding their children.”
One thing that can help to allay concerns is to properly understand the risk of introducing a food. For one thing, the chances of a younger sibling having a food allergy if an older sibling does is not as high as parents might think. A study of 2,834 children in Chicago found that only 13.6 percent of siblings of children with food allergies were clinically reactive to a food allergen.
“We do have an increased risk, it was 13 percent compared to 8 percent in the general population, but an additional 50 percent of siblings had a positive test but not a food allergy,” says Gupta, who led the study. This suggests many siblings who test positive are not truly allergic, and could in fact eat and tolerate the food.
As data from the LEAP study show, it’s also very unlikely an infant will have a serious allergic reaction the first time he or she is exposed to a food. Baker adds that even if a parent is skeptical that introducing food at an early age will prevent or reduce the incidence of a food allergy, “one thing that’s clear from the studies is that early feeding does not increase the likelihood of food allergy.”
Still, a highly controlled scientific study is one thing, and a parent sitting at the kitchen table with a child is quite another. Christine Remm was petrified her third child would have food allergies like his older sister. She had Grayton skin-tested twice (with negative results) and still put a small amount of peanut and later cashew butter on his back before feeling comfortable letting him eat either food.
“It was more for my confidence. I was just so nervous to try anything,” says the mom of three from the Atlanta area.
Her experience is echoed in a small Montreal study looking at the introduction of peanuts of younger siblings of kids with peanut allergy. In that study, siblings were skin-tested but then, without knowing the results, parents were asked to introduce peanut under medical supervision in their homes. Of interest is that when these parents were asked in a survey what they would do if their doctor recommended they introduce peanut at home to a younger sibling without first doing skin testing, 82 percent said they would keep avoiding the food, and 53 percent said they would get a second opinion.
Because the apprehension can be so great, especially in families who have seen a child have an anaphylactic reaction, all experts interviewed for this story suggested that if parents are nervous about introducing a food, they should speak to their doctor about doing it in the medical office, for peace of mind.
There is a group of babies who are at a high-risk of developing an allergy, and this group warrants special consideration, say the experts. As an example, in the LEAP study the kids who had severe eczema and/or a diagnosed egg allergy were considered at high risk for peanut allergy. The new guidelines say that a child in this high-risk group should strongly be considered for blood or skin testing to peanut before being introduced to the food. (Full panel skin tests are not encouraged, as they have the potential to identify a number of foods the child might be sensitized to, but not actually react to if eaten. This can lead to unnecessary food avoidance.)
Depending on the result, the doctor might recommend an oral challenge before introducing the food. Parents might even be told their baby is already allergic, and be sent home with a prescription for an auto-injector.
When it comes to other allergy triggers, a study related to the LEAP work looked at introducing six potential allergens to exclusively breast-fed infants at an early age. While highly positive findings were seen for early egg and peanut introduction, the results were encouraging, but not conclusive, for foods such as wheat, milk, fish and sesame. Without convincing results, the medical guidance is not as clear for other allergens.
But Baker says, “With a child having severe eczema or a documented egg allergy, you should work with your pediatrician or your pediatric allergist to try to come up with a plan for food introduction.”
That’s exactly what Chicago mom Amanda Sperry has done. She knew from the beginning her kids could have allergies: She has multiple food allergies and asthma and her husband has environmental and medication allergies. So when their first child, Jack, was born three years ago, the doctors considered sending her home with an epinephrine auto-injector. “The assumption was that it was likely our kids would be allergic to something,” she says.
Sure enough, baby Jack developed eczema within his first month of life, and had an anaphylactic reaction on his second exposure to avocado, which Sperry and her doctor chose as a first solid food. She faced the onerous task of continuing to introduce new foods, while trying to figure out if he was allergic to anything else. “In some ways, you feel like everything you’re feeding your kid could be poison. Is this one the poison, or is this one the poison?”
Sperry worked with her allergist to introduce foods to Jack and then his little brother, Kyle, who is now a year old. The boys’ parents introduced only one new food a week, every other week. The job required shrewd detective work, and it did turn out that both Jack and Kyle have multiple food allergies. Their mother kept a log of foods, with a check-list to record any reactions. “If I noticed something, it might be something else, like he was getting a cold. So I needed to watch other symptoms, and what else was going on. Was he teething? With kids, there are so many other things that can cause problems.”
Her story highlights a hard truth about introducing foods in these high-risk kids – it’s a long process that can be riddled with anxiety.
Audra Mackey knows this movie well. So far she’s given her 18-month-old, Rowan, epinephrine twice. Once was after eating cashew butter and once after sesame-containing hummus. He is also avoiding dairy, peanuts and egg because testing showed allergies to these foods. “I sometimes get nauseous when I’m introducing a new food. I try to distract myself and tell myself he’ll be fine. But I’m watching the clock. At one hour I start to feel good. At two hours I start to relax even more,” she says.
Still, the Boston-area mom is determined to feed her son as many foods as possible. She’s working closely with her allergist and a pediatric nutritionist, even emailing lists of foods she wants to introduce next, in an effort to give Rowan as full and nutritionally balanced a diet as possible.
When allergy is a high risk, aside from working with your doctor, there is no one-size-fits all solution to introducing foods. You may find it helpful to see a dietitian and, if you’re finding the anxiety hard to deal with, Gupta suggests seeing a therapist with knowledge of food allergies.
Mackey finds it helpful to have her husband at home when she’s feeding Rowan a new food. Having a full stomach herself also makes her feel more in control in case of a reaction. Gupta says these measures are exactly the kind of thing a parent needs to do to feel comfortable feeding a baby at home.
When Sperry introduces a new food, she has the mindset that an anaphylactic reaction could happen: “You have to be prepared for the possibility.” She knows precisely where the auto injectors are. “You’re ready if you need to call 911,” she continues. “Your insurance card is in the bag, the bag is packed and the keys are by the door.”
Carina Venter, a dietitian at Cincinnati Children’s Hospital who was on the expert panel that developed the new NIAID guidelines, counsels families to introduce slowly the new foods that make them nervous, giving little bits at a time. “A small amount is not necessarily going to cause less of a reaction. It’s more about reassuring the parents and getting their trust. If a parent has a concern about a food, whether it’s rice, peas or carrots or hummus and you ask her to go home and give a full portion of the food, it’s not going to happen.”
Venter adds that, allergy risk aside, it’s important that kids eat as many foods as possible. She stresses that while it’s possible to have a balanced diet of five foods (if medically necessary), that’s by no means an ideal scenario. “We want kids to have a varied diet to make sure it’s nutritionally sound.” She points out that, like all of us, children socialize through food, and if they don’t eat certain things, in some situations this can lead to social exclusion.
Baker says kids who unnecessarily avoid foods are also at risk of developing phobias towards certain ones, or food in general. “We do have problems working with some food-allergic people to have a normal relationship with eating. If you aren’t allergic to a food, the best thing you can do nutritionally or psychologically is to eat the food,” he says.
But despite having an understanding of the research, some families may still choose some avoidance. In the Hamilton family, for example, there is one clear food allergen: 5-year-old Elle reacts to peanuts. Their allergist tested her younger sister, Lily, for peanut allergy before she turned a year old, and it was negative. The advice: feed Lily peanut butter three times a week. But at 22 months, she still hasn’t tried the food.
For the girls’ mom, Laura Hamilton, the fear isn’t really about Lily potentially reacting to the food, it’s that she doesn’t want peanut products anywhere near Elle. “I think, ‘Could she have it under her fingernails, or spit it up somewhere?”’
That concern is definitely warranted, says Gupta. “It’s an individual parental decision in the end. Every parent wants what’s best for their child, and their other child. I don’t want any parent feeling guilty if they decide not to introduce foods,” she says.
For her part, Cacioppo plans to call the allergist to figure out the best way to begin introducing Evan to the foods he hasn’t tried yet. Back in Massachusetts, Mackey reports that, despite her ongoing stress, Rowan loves eating. With his mom’s help, he’ll be eating a full, nutritious and delicious diet for years to come.
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