Feeding Disorders - More Than Picky Eating
Today’s Dietitian
By Kate Jackson
Vol. 6, No. 12, p. 24

It takes a multidisciplinary team to diagnose and treat this often overlooked disorder in children who cannot or will not eat.

In any household with an infant or small child, mealtime can be a test of a parent’s patience. Spirited tykes might throw their food, play with it, or spit it out. Spaghetti may grace the walls, puddles of baby food pool on the floor, and children may wear more meals than they actually eat. Despite these theatrics, most children manage to get enough food in their stomachs to nourish them and allow them to thrive.

When children with feeding disorders are in the house, however, mealtime can be a test of parents’ endurance. Children with such disorders—which Diane Barsky, MD, FAAP, FACN, director of the Children’s Feeding Program at the Children’s Hospital of Philadelphia, defines as those who consume nutrition that is insufficient in quality or quantity based on their developmental level—may refuse to eat entirely or eat inadequately to sustain their weight and thrive.

As many as one in four children who are otherwise normal display such behaviors while as many as 33% of children with development disabilities, such as autism, experience feeding disorders. It’s a problem that appears to be on the rise, perhaps paralleling a rise in autism and pervasive developmental delay, Barsky indicates.

Among the consequences of feeding disorders are overall macronutrient and calorie deficiencies, as well as more subtle vitamin and mineral deficiencies. Afflicted children may experience poor growth, frequent illness, long-term delayed development, lack of endurance, poor wound healing, and fatigue. In the more severe cases, infants and children are at risk for weight loss or anorexia, malnutrition, and impaired brain development and cognitive function.

Multiple Factors
Feeding disorders manifest themselves in various ways and generally arise from a combination of factors. Some children clearly have difficulty chewing or swallowing. Some don’t want to eat or refuse to eat for no apparent reason and fuss and fight to demonstrate displeasure or discomfort. Others do not defiantly refuse to eat, nor do they exhibit irritability or apathy; they merely fail to sustain or gain weight despite eating a normal amount of calories. Some eat in normal amounts but select only age-inappropriate foods.

Children aged 3 or 4, for example, may still not be chewing, so they only eat stage 2 baby food—which, says Cara L. Cuddy, PhD, director of the Feeding Disorders Program at the Cleveland Clinic Foundation, should be long in their past. Or, she says, they may present with particular selectiveness—they’ll eat only hard, crunchy foods such as crackers, potato chips, and cookies, and nothing else.

While food aversions, table tantrums, and feeding battles may be a normal part of development, when they persist or are severe, there’s nothing normal about it. Picky eaters may become less picky in time, and children who are simply acting out their growing independence and control over their bodies will likely settle down.

Children with feeding disorders, on the other hand, will not simply grow out of them. Rather, they will continue to suffer the consequences of inadequate nutrition and drive their parents to distraction, if not outright panic. Presentation can be highly variable. “We see kids who present with severe refusal behaviors: turning the head, hitting the spoon, screaming, throwing food, spitting, major tantrums, and intentional gagging,” says Cuddy. “We have kids that can make themselves vomit at will, so these aren’t the kids who don’t want to eat green vegetables. These are the kids [who] don’t want to eat anything.”

The root cause of most feeding disorders are medical conditions that make it difficult or impossible for children to eat normally. Eating may be uncomfortable at best or painful at worst. The distress associated with this struggle often adds an emotional layer to the problem with attendant behaviors that may complicate, outlast, or even obscure the original problem. When eating has been a struggle, the discomfort surrounding it lingers, and children are likely to develop aversions or phobias to food and the process of eating. Children may have developed conditioned behaviors, such as gagging, vomiting, refusal to advance to age-appropriate foods, and other negative impulses toward feeding. These negative behaviors continue and often disrupt the family harmony and persist long after underlying medical conditions have been treated and resolved.

In other cases, however, feeding disorders stem from developmental or psychosocial problems that are independent of any medical conditions. Furthermore, parents who are distraught over their children’s feeding problems or those with food issues of their own may behave in ways that perpetuate or worsen negative food-related behaviors.

There’s often a combination of factors. Among physiological conditions that may impair a child’s ability to eat are chronic gastrointestinal issues, such as reflux, esophagitis, motility or absorption difficulties, and blockages. Other contributing conditions include postural problems and poor oro-motor skills. The latter is frequently seen in children with cleft palates or cerebral palsy, as well as in those who were premature infants and who, in their first days of life, may have been intubated or fed through tubes.

“We see many children with serious oro-motor deficits—significant incoordination in the movements of the oral muscles in the cheeks, the lips, the tongue, such that they can’t effectively and efficiently move food in their mouths to swallow, or to chew or to swallow, depending on the texture level,” says Cuddy. Children with mental retardation, cystic fibrosis, food allergies or intolerances, genetic and metabolic disorders, chronic lung diseases, or congenital heart disease are also at risk.

Diagnosis and Treatment
A physical examination and laboratory and imaging studies are used to rule out or diagnose such problems. The initial goal of treatment is to correct any underlying illnesses, address vitamin and mineral deficiencies, and ensure intake of an adequate amount of calories and fluids. Next, it’s necessary to address through family therapy the behaviors that have arisen in response to medical problems, such as fear or loathing of the experience of eating.

On the other hand, it’s not always clear what’s at the heart of the matter, and behavioral issues may give rise to medical problems. “Sometimes we see children with undiagnosed medical problems, and you don’t always know what came first,” says Barsky. “Sometimes the medical condition comes first and then the behaviors start to escalate.” In certain cases, she says, these behaviors are classified as posttraumatic feeding disorders. “The children have some kind of traumatic medical event, and that’s made them shut down or avoid eating.”

To further complicate matters, parents’ attitudes toward food, or their anxiety over their child’s failure to grow at an expected rate, can itself cause a child’s eating behaviors to escalate to a feeding problem, Barsky suggests. “For example, a mother with a history of an eating problem or a focus on food may have a 20-month child who suddenly starts being more selective and will eat perhaps only pasta and one fruit or one vegetable,” she explains. “The the mother may become anxious and start force-feeding the child or using whatever tactic she can to persuade the child to eat. The child then picks up on the stress and the whole interaction becomes more stressful.”

Another situation in which a parent’s emotional state may influence the development of feeding disorders sometimes occurs in cases of postpartum depression when the mother is not treated. Barsky says that when attachment disorders arise in these cases or when children have been hospitalized and there are attachment difficulties, there’s a higher risk of feeding problems.

Cuddy can recall only two or three children in the nine years she’s been in the Cleveland Clinic program whose conditions she believed were purely psychological. One child, she remembers, was a typically developing healthy 3-year-old child who, while riding in her car seat, swallowed and choked on a ring. The parents pulled the car over and performed the Heimlich maneuver and brought up the ring. The incident was traumatic for the whole family, but the child seemed to rebound. Some days later, however, she was eating a french fry and choked on it. She recovered herself, but from that point on, she decided that she couldn’t eat. Her mother managed to keep the child well-nourished by feeding her the only thing she could keep down: a milkshake concoction including Carnation Instant Breakfast, peanut butter, a banana, whole milk, vanilla ice cream, and vitamin drops.

It was, says Cuddy, high in calories and very nutritious, so the child grew beautifully. As a result, her pediatrician dragged his feet on referring the child, telling the mother she’d be fine and would eat when she’s ready. “She’s growing, so don’t worry,” he told them. The child lived on the milkshakes for a full year until the parents finally pressed the doctor for another solution. Ultimately, they were referred to the Cleveland Clinic program where the team got their child back on a regular eating pattern.

Missed Diagnosis
Parents at their wit’s end may—if they’re lucky—find their way to an interdisciplinary feeding disorders treatment program where a team approach addresses both the medical and emotional impediments to eating. Frequently, however, feeding disorders are dismissed both by parents and healthcare providers as normal rites of passage for children—as stages they’ll pass through unscathed. Experts in the treatment of feeding disorders, however, suggest that too many children with feeding disorders are labeled as picky eaters when in fact they suffer from treatable problems.

Barsky and Cuddy agree that feeding disorders frequently go undiagnosed and their symptoms trivialized, even by pediatricians. The typical age of presentation to the Cleveland Clinic program is 33 months, and most of the children have already had some other attempt at treatment in the community that hasn’t worked, says Cuddy. “In many instances, our families have been struggling with feedings since their kids were less than 1 year old.”

“There’s not enough concern sometimes on the part of healthcare professionals,” says Barsky. “They’ll say it’s just a phase or that the child is just a typically picky 2-year-old.” Worse, they don’t always identify the kind of nutritional problems for which these children are at risk. It’s a lack of awareness, she says, but also a lack of nutrition education in general.

Pediatricians, Barsky says, need to listen more carefully to parents to tease out age-typical food jags from food selectivity that puts children at nutritional risk. It’s especially likely to be overlooked in children with developmental problems, observes Cuddy. “It’s missed in general because pediatricians are trained to recognize illness, and so they miss some of the subtle developmental issues, especially early on, when they think the mother is just being anxious and overprotective.”

It’s not that physicians don’t care, she suggests, but that managed care has deteriorated the patient-provider relationship to the point where there’s little more than a 10-minute visit, so when the children are at at an appropriate weight and growing sufficiently, the problem tends not to be taken seriously. Even when pediatricians recognize the problem, notes Cuddy, there are only a handful of multidisciplinary programs, so physicians often lack resources with which to help the children.

Multidisciplinary Treatment Teams
Ideally, a child with a feeding disorder will be treated comprehensively with an integrative approach by a multidisciplinary team of providers, including a medical doctor, a nurse, a psychologist, occupational and speech therapists, a dietitian, and, perhaps, a gastroenterologist, as at the Children’s Feeding Program. The initial goal of treatment is to correct any underlying illnesses, address vitamin and mineral deficiencies, and ensure the adequate amount of calories and sufficient and appropriate fluids.

In as many as 50% of cases, tube feedings are necessary to ensure complete nutrition, and weaning children from such feedings is a goal of treatment. At the same time, it’s necessary to address through family therapy the behaviors that have arisen in response to these illnesses and their impact on eating. Barsky points out that feeding disorders are often the presenting symptoms of overall developmental problems, so it’s also important to ensure that the child’s overall development is normal.

At the Cleveland Clinic Children’s Hospital for Rehabilitation, patients with feeding disorders of varying degrees are treated by such a team through individual outpatient therapy and treatment sessions or, for the most severe cases, through the Robert O. Walton Day Hospital. The initial assessment, explains Cuddy, is a two- to three-hour marathon that starts with the team physician, a developmental pediatrician who does a history and physical and then meets with and briefs the rest of the team. If a medical problem is indicated, further testing is ordered and the problem is treated. The team members then meet with the caregivers while the child is present and perform an extensive interview to extract a developmental and feeding history.

When children are old enough, they’re included when it is developmentally appropriate. The child and caregivers are then put in a treatment room with a one-way mirror. The caregivers are given a tray with a variety of foods and textures and are instructed to do whatever they would do at home. The rest of the team, on the other side of the mirror, observes the meal, discusses impressions, and then meets with the caregivers and gives feedback and recommendations. Depending on the child’s particular needs, the team members provide therapy and counseling, generally over a course of two years.

Dietitian’s Role
At the Cleveland Clinic program, Maureen Andrewson, RD, LD, focuses on optimizing the children’s nutritional status and integrating nutrition plans on a holistic level. At the initial intake, she assesses the patient’s weight, height, and placement on growth percentiles and begins to plan a goal for the patient. Throughout treatment, she assesses the children and plans their nutritional care with an eye on moving them toward an age-appropriate volume and variety of food and a reduction in the dependence on enteral or supplemental feeding. Equally important, she observes the children globally and assesses the parent dynamic and how it affects the situation. She gets a clear picture of the family’s routines and habits and develops a consistent schedule—a step she sees as crucial to good outcomes—and demands from the family a commitment to the consistent enforcement of that schedule. “Agreeing to a consistent care plan and following through with a systematic program of modest changes is the basis of my nutritional assessment and treatment,” she says.

Career Opportunity
Andrewson highly recommends feeding disorders as a specialty area for RDs and notes the likelihood of an increased demand for such expertise. She sees the rise of childhood food allergies as a factor fueling the demand for feeding disorder treatment and highlighting the special talents of the nutritional professional.

The field demands specialized skills and a love of children, but the rewards, she says, are incalculable. In the community, RDs are on the front line of detecting feeding disorders, providing nutritional guidance, and referring parents to appropriate resources. And in interdisciplinary programs, she says, the RD brings to the table a broad knowledge base that is well-valued in these specialized teams.

— Kate Jackson is a staff writer for Today’s Dietitian.

Teamwork Matters
Parents of patients with feeding disorders are often referred to dietitians, who can be helpful in a wide variety of ways. Still, in most cases, additional expertise is needed to comprehensively manage children with feeding disorders.

For example, explains Diane Barsky, director of the Children’s Feeding Program at the Children’s Hospital of Philadelphia, while a dietitian may be able to tell parents how to feed their children for maximum impact, if the child has significant refusal behaviors or is an extremely picky eater, the parent won’t be able to get the nutrition into the child to promote weight gain. It’s important, she says, to identify extremely selective children and, in the absence of a local feeding disorders program, refer them to behavioral psychologists, who can help address the behaviors.

Similarly, she says, when patients have sensory and oro-motor issues, dietitians can help by referring the patients to pediatric personnel or therapists who can address their special needs. Dietitians should recognize that they need to work in conjunction with other therapists and if they don’t have a team with which to work, they should have expert resources with whom they can collaborate.

Maureen Andrewson, RD, LD, of the Cleveland Clinic, agrees. “Many dietitians struggle in the community with problems that really go out of the range of what RDs normally do, such as monitoring weight and caloric intake and supplement planning.” She feels lucky to be part of a disciplinary team but cautions other RDs in less supportive settings not to try to shoulder the burden of complete treatment, but rather to turn to speech and occupational therapists and behavioral psychologists in the community who are trained to treat children with feeding disorders.

— KJ

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