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Feeding Difficulties in the Food Allergic Child

Feeding Difficulties in the Food Allergic Child

When I started my career as a food allergy specialist dietitian, eating and feeding difficulties were not part of a regular conversation between health care providers and parents.  It was assumed that once food allergens were identified and the diet was modified, the child would be “fine” and go on to grow as nature intended and eat in a way to support that growth. Children were often labeled as just “picky eaters” and tired parents often gave in to a child’s demands due to growth concerns and emotional fatigue from nightly food fights.  Highly selective eating patterns became fully entrenched in the family feeding dynamic and no one in the home could either develop or maintain a good relationship with food.

This dynamic between parents, children, and food was often painful to watch unfold during clinic appointments. Children were scared to eat or parents were scared to introduce new foods while medical providers preached about correcting nutrient deficiencies and scolding parents for not having a child on the 50th percentile growth curve.

As often happens in medical practice, the emotional impact of a medical diagnosis is often ignored until it simply can no longer be ignored.  When that medical diagnosis drastically changes how a parent is able to feed a child, that emotional impact is magnified.

How Conversations around Feeding are Evolving

Today, the conversation around children, parents, caregivers, and food is changing.  Investigating feeding difficulties as an early warning sign of a food allergy is happening more frequently. There are more conversations about the psychological and social impact of the food allergy diagnosis for everyone in the home, not just the food allergic child.  However, the bridge between identification of food allergy, complications due to food allergy and a way out of a quagmire for a family can be long and bumpy.

A diagnosis of feeding difficulties or Avoidant Restrictive Food Intake Disorder (ARFID) can open doors for families to get insurance coverage for treatments.   ARFID is a relatively new feeding disorder diagnosis in the American Psychiatric Association Diagnostic and Statistical Manual V (DSM-V).  DSM-V states that “in some individuals, food avoidance or restriction may be based on the sensory characteristics or qualities of food, such as extreme sensitivity to appearance, color, smell, texture, temperature, or taste.” These behaviors have been reported as “restrictive eating”, “selective eating”, “picky eating”, “food refusal”, or “food neophobia.”  Children may demonstrate these behaviors by insisting on only eating certain brands of foods, becoming very upset at the sight of someone else’s food, or gagging at the smell of food.

While this new diagnosis is a vindication for families who have struggled with these issues for years and were told that a child will eat when they get hungry enough, it does need some caution. A diagnosis of ARFID or another diagnostic label can funnel treatment plans into an overly reductionistic treatment course that loses sight of the complexities of feeding difficulties.  It can cause treatment to be focused solely on the child and does not usually consider the family feeding dynamic.  A diagnosis can make food the only issue and only the child’s issue.  Managing feeding difficulties in the context of the family unit often leads to long term success.

As a diagnosis such as ARFID becomes more familiar to more healthcare providers, treatment options in certain parts of the country are becoming more readily available as well.  However, many families still scramble to piece together treatment teams if they do not live close to a medium or large hospital system.  Treatment sometimes becomes about a predetermined timeline that has nothing to do with what the child is able to accomplish. To paraphrase the words of my esteemed colleague, Ellyn Satter, “the job of an adult is not to get a child to eat but to support the child to bring themselves along at their own pace.”  For some children, treatment will never be fully successful unless the food provoked anxiety is addressed. And it is important to remember, that the anxiety may not be limited to the child.  Treatment should not be worse than the condition.

Children with a brand new or not so new diagnosis of food allergy deserve patient centered/family centered care that changes as the needs of the child and family change.  I am so appreciative for the work of on this issue and bringing more awareness to potential complications of food allergy.   The ongoing research at major food allergy centers across the globe is allowing those of us specializing in food allergy to understand the physical and psychological impact as never before. It is an exciting time to be in this field as there are more options for nutritional management which can allow a child to develop a life-long positive and confident relationship with food.

I would like to thank all of the patients and families I have had the privilege of working with during my career for teaching me about your needs and how I can better help other families struggling with feeding difficulties as a result of food allergy.

Ajinomoto Cambrooke would like to thank Alexia Beauregard, MS, RD, CSP, LD for sharing her experience in working with families living with a diagnosis of food allergies and/or feeding difficulties. Alexia is a faculty member of the Ellyn Satter Institute and is chief of the clinical dietetics branch at Winn Army Community Hospital.  She is a food allergy specialist dietitian and focuses her work on gastrointestinal disorders and eating and feeding difficulties that can arise because of these medical conditions.  Alexia is on the medical advisory board for The FPIES foundation and is a member of several professional organizations with the goal of enhancing provider education surrounding food allergy and eating difficulties. When not at work, she enjoys spending time with her husband, three children, and Boykin Spaniel on a boat or the beaches of the lowcountry. Follow Alexia on LinkedIn or Twitter @FoodAllergyRD.

How Hypoallergenic Formulas can Help

When recommended by a clinician, formula can play a role in meeting nutrition needs and supporting growth in those living with food allergies and feeding difficulties.  EquaCare Jr. and Essential Care Jr. are hypoallergenic, amino acid-based formulas that provide complete nutrition in a variety of tasty flavors.  Learn more about how EquaCare Jr. and Essential Care Jr. can support your child.