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How to know if your kid has a feeding disorder

Does Your Child Have a Feeding Disorder?

what to do when your child just won’t eat

In preparation for her family’s first trip to Disney World, Summer Satterfield stocked up—not so much on sunscreen or snacks for the plane, but on cases of Yoplait Thick & Creamy yogurt.

Besides Carnation Breakfast Essentials (a nutrition powder mixed into milk), that yogurt was her 9-year-old son’s only food.

“We literally live on yogurt and milk,” the Wylie mom says. “We would order three or four cases [of yogurt] every week, because he would eat three or four at a time. That was his meal.”

Tyler’s lone food item was notoriously elusive in stores. Satterfield’s husband found a store in Orlando that would deliver cases of Thick & Creamy yogurt to the resort where the family was staying—but they could get only strawberry, not even Tyler’s preferred vanilla. “We were taking a chance,” Satterfield says. “If they hadn’t’ve showed up with them, I guess he would have drank milk the whole trip.”

Fortunately, the yogurt was waiting for them when they arrived, and they stored it in the room refrigerator and an ice chest, along with vanilla they’d brought in their baggage.

“We made it through,” Satterfield reports. “I think the last day he drank a lot of milk.”

“It’s crazy looking back on this,” she adds. “I’m like, ‘I can’t believe we did that!’ We had to.”

That’s not an exaggeration. The adage “They’ll eat when they’re hungry,” often offered by mothers-in-law or even pediatricians, doesn’t apply to kids who have feeding disorders, like Tyler. Satterfield says he was “petrified” when presented with food.

“I would even try to tell him, ‘If you would lick a piece of bread, even lick, I will buy you a Thomas Train today,’” she admits of Tyler’s younger years. “It was terrible—bribery—but I didn’t know what else to do.”

These kids would (and occasionally do) end up on an IV before they’d venture off their limited menus. Some don’t even have the capacity to chew or swallow food properly.

And we’re not talking about a tiny sliver of the population here—research suggests that at least a fourth of typically developing kids have a feeding disorder. That means for every kid you know who’s left-handed, you probably know two with a feeding disorder.

Among children with autism, developmental delays and chronic medical conditions, the prevalence balloons to 80%.

Meanwhile, experts proposed defining “pediatric feeding disorder” for the first time in the ICD-10, the World Health Organization’s bible of diseases that doctors and insurance companies rely on. The distinction between a feeding disorder and typical pickiness is fluid, but some kids dismissed as “going through a phase” might actually be going through pain, anxiety or an undiagnosed medical condition that makes mealtime miserable and puts their health at risk.

What’s Going On?

“I can send you a picture of what his fourth-grade class looks like, and you can tell which one is my child,” Fort Worth mom Lorena Pudyk told me. She wasn’t wrong—in the photo, her 9-year-old son Walter barely comes up to his classmates’ shoulders.

Walter stopped eating at around a year old. “This is gonna sound terrible,” Pudyk says, “but my husband would hold his head, and I would try to open his mouth just to feed him, because we got to the point where we were desperate.”

But when they tried to feed their son, he would gag and vomit (which can be symptoms of a feeding disorder). “I would just feel awful, and sometimes embarrassed, because here I was not being able to feed my child, not knowing why or not understanding why,” Pudyk says. “It was very, very difficult.”

Walter survived on PediaSure and Nutter Butters, eventually adding crunchy cereal—well, a crunchy cereal, Cinnamon Toast Crunch.

Kids with feeding disorders tend to take brand loyalty to the extreme, and that’s a key difference between run-of-the-mill picky eaters and those with feeding disorders, explains Mary Fink, clinical manager of feeding programs at Children’s Health. The latter reject entire food groups (such as vegetables) or only accept foods with a certain texture, sometimes discriminating by brand (say, McDonald’s chicken nuggets but not Chick-fil-A’s).

While a child’s palate may suggest a feeding problem, often the proof is not in the pudding, but the growth chart.

“How a child is growing is a huge clue into their health,” explains Dr. Vanessa Charette, a pediatrician with Cook Children’s Pediatrics Fort Worth – Magnolia. “If a child is growing well, it helps give you a lot of reassurance that they’re getting enough nutrition and they’re doing OK. But if they’re growing poorly, then that is a sign that we need to start looking for what’s going on.”

The list of possible causes is lengthy, ranging from prematurity to gastroesophageal problems to traumatic events that trigger psychological aversions. “I had a child who had an aversion because of a hospitalization,” Charette says, “and literally all she would eat was chips and queso. That was it.”

For some kids, eating is painful thanks to allergic inflammation or reflux. Blood tests on Walter didn’t reveal any such underlying medical conditions, but a pediatrician recognized the symptoms of sensory processing disorder (SPD): Besides refusing food, Walter never put anything in his mouth as a baby, and in public places he would sometimes “just scream his lungs out for no reason,” Pudyk says. She had no idea his tantrums were related to his picky palate, but SPD frequently precipitates feeding difficulties.

Still other kids have a physical dysfunction, like a swallowing problem, that prevents proper ingestion. Sally Bober, a Plano speech-language pathologist who treated Tyler Satterfield, says 100% of her feeding disorder clients to this point have ultimately been diagnosed with a tongue restriction. Tyler’s tongue-tie caused him to gag, and what was a structural problem swelled into a behavioral problem too.

“He’s scared to death he’s gonna gag, cause his gag was horrible,” Bober remembers. “With these kids, if they gag once on something, they remember it.” Tyler reacted in fear, “freaking out” whenever food was placed in front of him, Satterfield says.

Anxiety and resistant behavior are hallmarks of feeding disorders, turning mealtime into a “power struggle between the child and the parent,” explains Monica Johnson, an occupational therapist at PediaPlex Southlake. “And then it increases anxiety for the child, and it increases anxiety for the parent, because eating is a life skill—we have to have it to survive.”

Charette explains that a period of poor nutrition early in life can stunt a child’s final height. “If they have poor nutrition early on, they never grow as well,” she says. That goes for cognitive development too—lack of proper nutrition compromises a child’s ability to think, concentrate and learn.

And as their anxiety worsens, it can seep into other aspects of life, especially as food becomes an integral part of many social situations. “Some of my clients have had a lot of anxiety when it comes to social events, because they know they’re not going to eat whatever’s offered at the birthday party,” explains Karen McPhearson, a speech-language pathologist at PediaPlex. Kids feel left out of the celebration, or they avoid social gatherings altogether.

So when a child is gagging on a new food or wailing in defiance at dinnertime, parents face an unappetizing choice: force-feed their child, or give in to their child’s preferences at the expense of their health. To outsiders, a pained decision borne of love looks like cruelty on the one hand or weak-willed indulgence on the other.

“They don’t understand,” Pudyk says of her own family. “Sometimes I would hear stuff like, ‘Oh, you’re not doing it right,’ or, ‘You’re spoiling him’—those nasty comments that you don’t expect from your family.”

More Than He Could Chew

Though Satterfield’s family was more supportive, she did get ignorant comments from other people “all the time”—advice like, “You just need to make him eat.” She had tried, of course; in fact, she and her husband had spent tens of thousands of dollars on in-home, inpatient and outpatient therapy programs by the time her son was 7.

“I remember when my daughter started eating food,” Satterfield recalls, “and I think one of the most crushing things [Tyler] ever said was, ‘Mommy, why do I not eat food?’ He knows something’s wrong, but he doesn’t know what to do about it.”

Nobody, it seemed, knew what to do about it—when the Satterfields found Bober, Tyler was 9 and still on a diet of yogurt and milk despite years of therapy.

“We kind of just gave up,” Satterfield admits. “We didn’t know what to do. Then you’ve got other kids in the mix. Your focus is not on fixing it all anymore—it’s coping with what you’ve been given.”

If there’s an underlying medical condition that’s causing pain, such as reflux, a pediatrician can test and prescribe treatment for it, which might swiftly solve the child’s feeding difficulties. But if they have poor oral motor skills, deep-seated anxiety or sensory issues, then working through those problems takes time, and sometimes a whole team of therapists.

“Feeding encompasses so many systems and so many skills,” Fink says. “Seeing it through several different eyes helps us determine a thorough plan for treatment.”

It’s a multifaceted problem that requires a holistic solution, often a combination of occupational and speech therapy, as well as mental health counseling to alleviate anxiety. “You can’t just treat the oral skills; you have to treat the whole child and the family,” Fink explains.

Still, those oral skills are a prerequisite to fighting mealtime fears and expanding the menu—a child who can’t chew or swallow properly won’t make any headway with new foods.

For the first few weeks of Tyler’s treatment with Bober, food wasn’t even on the menu; they exclusively worked on his oral motor skills—something none of his other therapists had done, Satterfield says. “He had to know what it was gonna even feel like to chew.”

So at the clinic and at home, Satterfield says her son chomped his way through an alphabet of oral motor tools—“P” and “Q” tubes, a “knobby T”—to strengthen his mouth muscles, while another tool called a Z-Vibe gently simulated the feeling of food. Remember: Tyler was slurping milk and yogurt at this point. Solid food was a foreign concept.

Then as Bober presented new foods—Greek yogurt, fruit, bread—Tyler’s tongue-tie was still problematic. “He couldn’t lateralize his tongue to get the food out of his cheek,” she explains. “He couldn’t keep the food on his teeth if he wanted to chew. So it floated around and that’s what caused that gag.” And he was spending upwards of 50 chews on a single bite, far above the max of 20 chews that Bober aims for.

Tyler finally had a frenectomy (aka tongue release) five months into his therapy with Bober, and Satterfield says the change in his mealtime demeanor was “almost immediate.” He wasn’t anxious anymore; he had control over his mouth. By the time Tyler was released from therapy, five months after his frenectomy, he was eating about 100 foods.

“Once he started trying things, it became less fearful for him,” Satterfield says. “It’s a miracle. I mean, your son for nine years didn’t eat food, and now he eats food.”

Food Explorers

There is no standard length of treatment. Some kids are chowing down in a matter of months; Walter’s treatment, meanwhile, lasted for years—and he’s still not crazy about food. The therapists at PediaPlex taught him a gradual, step-by-step process for trying new things, which Johnson likes to call ‘food exploration.’ “Sometimes you’re gonna just use your basic senses to explore the food with no intention of eating,” she says, “because once you take that away, sometimes that reduces some of that anxiety.”

Food exploration is a progression of sensory encounters: touching or playing with the food, then smelling it, putting it to your lips, touching it with your tongue and holding it in your mouth—all before ever trying to ingest the food. The therapists invited Walter’s parents to observe this process so they could replicate it at home.

A key ingredient of successful treatment is consistency between the clinic and the dining table, so therapists teach parents to establish a mealtime environment that doesn’t reinforce their child’s food aversions. For some families, that means establishing a mealtime, period—kids thrive on routine and expectations. Other families may need to loosen up a little.

“Some families are, ‘We eat neat and tidy, there’s no mess, there’s no playing with food, it’s always utensil-based, it’s never hand-based,’” says Nicole Dunagan, a speech-language pathologist and COO at PediaPlex. “Sometimes it’s breaking those barriers down with parents as well—let them be messy, don’t wipe their mouth every time, let it hang out on their face for a little bit, let their hands get sticky.”

The Pudyks have a poster of the food exploration steps on their wall, and they also took home a new mealtime routine: Walter has to sit with his parents, even if he’s not hungry, and he has to try everything they eat. Pudyk clarifies that they don’t push if he’s resistant. “We don’t want to get to the point where he gets upset and then he starts hating food again,” she says.

After-school cooking classes helped Walter expand his gustatory horizons as well. Now on the menu: waffles, chicken nuggets, quesadillas, Fanta (previously a no-go because of the carbonation). As a parent, Pudyk’s job is to continue presenting new foods to her son, and to accept that because of his SPD, he may always struggle with eating to an extent. She has to urge him to eat sometimes, and remind him that food is what gives him the energy to jump on his trampoline. But at least he has tools for navigating a food-filled world.

“We know now that he’s never gonna grow out of it,” Pudyk says. “Therapy helped him as much as they could to be socially interactive and to find out what he can do in a situation where food is present.”

Mealtime at the Satterfields’ isn’t resistance-free, and even as Tyler adds new menu items, he drops others he had begun to accept, like bacon. But Satterfield can handle a little pickiness if it means her son is eating.

“Is there still pushback sometimes, like a normal kid? Yes,” Satterfield says. “But the fact that he eats food at every meal … We can eat at a table. We can eat together. We can go to a restaurant. We can go through a drive-thru. Our life is dramatically different.”

Pickiness or a Problem?

It’s a rare child who enthusiastically scarfs up everything you put on their plate, so when does a picky palate become something more concerning? Here’s what to watch for, according to experts:

  • Gagging, choking or vomiting when eating
  • Inability to transition to an age-appropriate diet
  • Super selective eating—rejection of whole food groups, or preference for a certain texture or brand
  • Sudden and permanent rejection of previously accepted foods
  • Holding food in their mouth a long time or swallowing food whole
  • Tantrums and other resistant behavior at mealtime (particularly in combination with other signs)
  • Poor weight gain for their age
  • Inability to eat without a distraction (e.g., a TV show)

If you have any concerns about your child’s eating habits, keep a record of what your child eats and talk to your pediatrician.

Blame Game

When strangers—and even family members—see a child resisting food, they often assume incompetent parenting is to blame. “There is that stigma that it’s definitely more behavior-related from the parent than it is something that rises to a true disorder,” says Nicole Dunagan, a speech-language pathologist and COO at PediaPlex.

That makes parenting a child with a feeding disorder a lonely place to be, especially as parents fault themselves for failing to take care of their child’s basic needs. And it’s true to a limited extent—there are some parental behaviors that can encourage a child’s aversions, like becoming a short-order cook for a picky kid to the point that they refuse to accept new foods, or coercing a child with a fear of food to “take one more bite.”

But the experts urge parents to realize that feeding disorders are real, and to seek help from their pediatrician—even seeking a second opinion if they don’t feel heard.

Parents can also visit feedingmatters.org to find resources and get connected to other families dealing with a feeding disorder.

Photo courtesy of Cindy James.