The Kohm-Hahn family: Traci and husband James Kohm with Ella, Lauren, Aiden, Caleb (2nd from right) and Lily.
Read about one family’s experience with an extreme form of selective eating called avoidant-restrictive food intake disorder (ARFID).
As a child with allergies to milk, egg, soy, peanut, tree nuts and several other foods, Caleb Hahn knew that lots of foods were off limits to him.
Still, his mom, Traci Kohm, tried to introduce Caleb to a wide variety of safe options – fruits, vegetables, meats, grains and sweets. Time and time again, Caleb refused all but a handful of foods. He’d have homemade apple muffins for breakfast, oat flour pancakes for lunch, and ground chicken coated in potato chips for dinner.
No amount of bribery, tough love, attempts to disguise the taste of new foods, or seeing his four siblings enjoying other foods could convince him to try them. “At first I thought, ‘He’s a picky eater. It will pass,’” said Kohm, an optometrist from St. Louis, Missouri.
But Caleb’s picky eating didn’t pass. At 12, the boy sticks to the restrictive diet he set years ago. He does not like to eat food touched or prepared by anyone other than his mom. Some days it can be a struggle to get him to eat anything.
“It’s heartbreaking. You are watching him struggle, and there isn’t a single thing I have done that seems to make it better,” says Kohm, who sought help from her pediatrician, a psychologist, and an occupational therapist. “I’ve asked him so many times why. But he doesn’t know. He just doesn’t feel he can eat.”
It took years to get a diagnosis, but doctors eventually determined Caleb has avoidant-restrictive food intake disorder (ARFID). This is a form of extreme picky eating in which people will only eat a very select, limited number of foods.
Link to Food Allergies
While ordinary picky eating in a child can be annoying, ARFID is serious since it can cause growth delays and nutritional deficiencies. It also interferes with many aspects of daily life. Family meals, traveling, and social gatherings involving food can be stressful and frustrating.
“With ARFID, there is a significant psychosocial disruption related to the relationship with food,” explains Dr. William Sharp, a psychologist and director of the Multidisciplinary Feeding Program at Children’s Healthcare of Atlanta. The program specializes in treating kids with ARFID.
Although eating problems in kids are nothing new, ARFID is a relatively newly defined condition. Added to the Diagnostic and Statistical Manual of Mental Disorders 5 in 2013, ARFID “sits squarely at the crossroads of feeding and eating disorders,” wrote Sharp and his colleague in a 2019 medical paper.
ARFID is considered a feeding disorder because it appears as early as infancy, and usually before 6 years old. But it can also be diagnosed in later childhood or the teens, when picky eating is harder to shrug off and the disordered eating becomes more apparent. (Unlike other eating disorders such as anorexia or bulimia, people with ARFID do not have a preoccupation with thinness or a distorted body image.)
This year, Sharp and colleagues published the first study on children with food allergies and ARFID. The study involved 54 kids, who were patients at Children’s Healthcare’s food allergy clinic and whose parents were interested in an assessment with a psychologist for feeding issues. They ranged in age from infancy to 17 years old. Six of the kids with food allergies were already being seen in the feeding clinic.
The researchers found that more than half of the children met the criteria for “probable” ARFID. A few of those kids had ARFID symptoms such as weight loss or failure to gain weight properly, nutritional deficiencies or dependence on tube feeding or formula for nutrients.
But for most of the kids considered “probable” ARFID cases, the main symptom was a problem with “psychosocial functioning” related to food, such as ritualistic or rigid eating behaviors, according to the study published online in the Journal of Allergy and Immunology: In Practice.
Avoiding Even Safe Foods
“The core of ARFID is the avoidance and restriction of foods beyond what is medically necessary,” Sharp explains, noting that the kids with ARFID symptoms were more likely to have more than one food allergy.
Allergist Dr. Brian Vickery, the director of the Food Allergy Center at Children’s Healthcare of Atlanta, says ARFID among food allergic kids is likely underrecognized. He notes that to manage food allergies, parents are told to avoid allergenic foods.
“We tell families: ‘Read labels and be careful and take all these precautions centered around these foods.’ That in and of itself is very impactful for families,” says Vickery, a study co-author. But beyond those medically necessary restrictions, he finds that “some kids will restrict sources of proteins, carbohydrates and minerals that are perfectly safe for them to eat. They refuse to eat these.”
Kids with ARFID tend to prefer foods that share similar texture (often crunchy or sweet) and taste (typically bland). They often gravitate to snack or packaged foods with predictable textures and taste. Some seem to have little interest in eating much of anything.
Why Does ARFID Arise?
The reasons for extreme food selectivity aren’t fully understood, but Sharp says ARFID sometimes accompanies disorders such as autism, anxiety disorders and obsessive-compulsive disorder. Some kids may also have abnormally low levels of hunger hormones.
Another theory is that food aversions develop as a result of pain or discomfort after eating in early life, such as reflux or food allergies. Traumatic events – such as choking, vomiting or anaphylaxis – may also trigger ARFID symptoms, Sharp says.
Beau competes in tennis, despite ARFID.
That’s what Jen and Bonneau Ansley thinks happened to their son, Beau. As a baby, he vomited constantly after breastfeeding. As a toddler, an anaphylactic reaction to a yogurt puff led to a diagnosis of allergies to milk, eggs, tree nuts and peanuts. Even after eliminating those foods, Beau suffered from episodes of stomach pain and vomiting after eating.
At age 6 while on a family vacation, Beau grabbed what he thought was a cup of water, but turned out to be milk, and a scary reaction followed.
While Beau had always been reluctant to try new foods, after that incident, his diet became more limited. By age 9, Beau was only willing to eat a total of 10 foods. He no longer felt safe eating anything at school.
His parents tried encouraging him about foods that were safe. “I’d say, ‘Cook with me and watch me so you know exactly what’s in the food.’ But even if he were to try it, the amount would be so minute. He would put it down and not want to try it again,” his mom recalled.
As Beau approached middle school, they worried that he wasn’t eating enough to continue competing in tennis and growing properly. “He is going to have to eat more foods,” Jen Ansley recalls thinking.
That led the Ansleys to see Sharp, Vickery and the team of gastroenterologists, psychologists, dietitians, nurses and speech and occupational therapists at the Feeding Program at Children’s Healthcare of Atlanta.
When to Worry About Picky Eating
Experts stress that not every child who insists on chicken nuggets every day for lunch, or who claims to hate all vegetables, has a problem. Picky eating is a normal phase of development, typically peaking between the ages of 2 and 6, Sharp says. The difference with ARFID is that kids with the disorder generally don’t gradually expand their diet, or it grows more restrictive.
One sign of ARFID can be weight loss and growth issues. However, kids with the disorder can also be overweight. In these cases, kids consume plenty of calories, from a very limited number of often unhealthy foods, leading to nutritional deficiencies. Yet in the absence of obvious physical signs, ARFID can be easy for doctors to miss, Sharp says.
Complicating matters for food allergy families is that food avoidance and vigilance is necessary to avoid allergic reactions, Vickery says. Many families also limit activities such as eating out, pack suitcases of safe foods for trips, or skip out on social gatherings deemed too risky or too exhausting.
The more limiting behaviors can tip into excessive levels of caution and restriction.
“Some people manage avoidance diets just fine,” Vickery says. “But there is a spectrum, and some people struggle to the point where they can’t function.” When a child’s nutrition and growth are affected and daily activities are limited, he says, “we ought to consider if there is another way to help them.”
It’s also reminder for allergists and parents that “we need to be encouraging kids to have as much dietary diversity and healthy nutrition as they can have,” Vickery adds.
Help for ARFID
At the Atlanta feeding clinic, the team starts by determining if there’s a medical explanation for a child’s restrictive diet. From there, they work with the child to calm fear and anxiety related to foods, gradually exposing the child to a variety of new foods.
Parents are expected to participate, learning to reset mealtime dynamics, which are often fraught after years of standoffs and stress.
For kids with food allergies, the treatment also includes determining if some foods thought to be off-limits can be tolerated. The Ansleys first enrolled Beau in the outpatient program, but then switched to a more intensive, all-day program, which includes eating all meals and snacks with the feeding disorders team, and participating in cognitive behavioral therapy, a type of psychotherapy.
Children are given a choice of what new foods they’d like to try. Beau selected bananas and carrots. Vickery determined that Beau had outgrown his egg and dairy allergy. As Beau progressed through treatment, he was introduced to foods like ice cream and pizza, although he still needs to avoid nuts.
“When I was in their office, it was a lot more comfortable. I felt like it’s not going to go wrong, but if something did go wrong there are people to help me,” Beau says.
Today, Beau’s favorite foods are steak, green beans, black beans and strawberries. He’s now comfortable eating lunch at school, and going to sleepovers and birthday parties. “I feel a lot healthier and like I can eat more foods,” he says. “On vacations and field trips, I can eat the given food. If they are having hotdogs or pizza, I can eat them.”
Quest for Answers
While Sharp’s clinic reports a high degree of treatment success, this is still a newly defined disorder. Other families have yet to find a treatment that works. Anne Bouchard’s son has ARFID, as well as allergies to tree nuts and peanuts, which they discovered through a taste of peanut butter as a baby. Now a 19-year-old college student, her son’s diet consists of popcorn, popsicles, certain potato chips, fries, and not much else.
“I’ve had some poor advice along the way. People have said, ‘Well just let him starve. Let him be required to eat what’s put in front of him,” says Bouchard, who lives in Maryland and tries to raise awareness about the disorder. “Well, that doesn’t work. Some of these kids have gone to the emergency room and had to have feeding tubes put in because they would not eat.”
Dr. William Sharp
Even treatment at an intensive feeding disorders clinic didn’t help her son much, and at this point Bouchard assumes ARFID will be a lifelong issue. “It’s as puzzling to him as it is to us,” she says.
In St. Louis, Traci Kohm and her son, Caleb, have also gone through years of treatment without much improvement. Of her five kids, three have food allergies, but only Caleb has ARFID as well. Caleb was also diagnosed with celiac disease, another condition that can raise the risk of developing an eating disorder. ARFID “is such a misunderstood diagnosis,” she says.
Vickery and Sharp urge families to seek help if they’re worried about their child’s restrictive eating habits. Patients of the Atlanta feeding clinic, which treats kids up to age 21, start the program eating, on average, three foods. After weeks of intensive therapy, Sharp says they’re able to eat an average of 19 new foods, from a variety of different food groups.
“We find that when you can get a child to be more flexible with exploring foods, it kind of snowballs and they may start asking about new foods or wanting to try foods,” Sharp says. “They think, ‘I can do this.’ They feel a sense of empowerment.”
Signs That Picky Eating is Excessive
Picky eating can be totally normal. But if kids are eating so little that they’re not growing or gaining weight, of if their eating habits are interfering with the ability to enjoy things like family meals or social events, it may be time to seek help.
Kids with ARFID fall into three main groups:
Lack of interest: Some kids with ARFID are uninterested in food.
Sensory avoidance: Some kids have aversions to food smells, tastes or textures.
Fear and anxiety: Some kids with ARFID worry about choking, vomiting, nausea or allergic reactions – even to foods they’re not sensitive to.
ARFID warning signs:
A refusal to eat all but a short list of acceptable foods.
With food allergies, restricting the diet far beyond the allergens.
Delayed growth or weight loss not explained by some other medical condition. (However, some kids with ARFID may be normal size or overweight.)
Nutritional deficiencies, such as iron, and vitamins A and C.
Psychosocial problems as a result of the restrictive diet, such limits on social events or activities, or stress, anger and frustration.
Related Reading:
Allergy’s High Anxiety: How to Tame Kids’ Fears of Food Reactions
Yes, I Did It! Young People Who Won’t Let Food Allergies Stop Them
