(photo credit: Courtesy)
It seems inconceivable that children as young as two months and as old as teenagers would intentionally go on a hunger strike - not eating at all, or not drinking at all or just drinking or eating inadequate amounts or types of food. They don't die of malnutrition, as doctors insert a nasogastric tube via the nostril into the stomach or, if the refusal continues, directly into the stomach from outside for feeding with liquid nutrition.
Hundreds of Israeli children are fitted with feeding tubes each year, and there are thousands who have difficulty in feeding. Israel is not unique in this; the situation occurs around the world.
In some cases, poor feeding or food refusal occur in children who suffer from a physical condition such as congenital heart disease or gastric or intestinal diseases that make it impossible for them to eat normally, and how to chew and swallow has to be learned (or re-learned). But in most cases, it is an anxiety disorder caused by the stereotypical "Jewish mother" who innocently forces her child to eat even if he refuses or does not appear to be hungry - except that it could be the father, the paid caregiver and even medical staffers such as hospital-based pediatricians, gastroenterologists or nurses. These often-underdiagnosed or misdiagnosed conditions are termed "infantile feeding disorders."
HOLON'S WOLFSON Medical Center's pediatric gastroenterology and nutrition unit is unique in being a "one-stop shop" for the early diagnosis and treatment of this feeding disorder, according to director Dr. Arie Levine. The American-born pediatric gastroenterologist told The Jerusalem Post in an interview that he and his five colleagues in the multidisciplinary unit have diagnosed the disorder in hundreds of children in the past few years. In addition, they report an 85% success rate in weaning children with this disorder by getting them to eat of their own volition or by weaning them from their gastric tubes.
Levine immigrated from Rochester, New York in 1973, did army service and studied medicine at Ben-Gurion University of the Negev's Faculty of Health Services, specializing in pediatrics and the sub-specialty of pediatric gastroenterology at Schneider Children's Medical Center in Petah Tikva. He moved to Wolfson in 1998 when offered the director's position at the unit. He spends most of his time on Crohn's disease - a chronic inflammatory disease of the digestive system - but then noticed "a lot of young patients who had difficulty eating. Many were tube fed, suffered from persistent vomiting and refused food. I couldn't understand why kids wouldn't eat." As little research had been published, he decided to do some himself.
Most such cases, he recalled, were viewed as being due to physiological problems such as reflux (regurgitation of food into the esophagus from the stomach), allergies or as "failure to thrive" of unknown origin. "The triad of symptoms that usually occur were poor feeding, poor weight gain and vomiting. But when we treated those physical problems and feeding difficulties did not improve, I noticed a common denominator - intrusive feeding behavior.. When they were not constantly forced to eat, the vomiting would stop," Levine said. He and his colleagues were in a dilemma: They could easily attach feeding tubes to get nutrition into their stomachs, but they wouldn't have a normal life. He assembled a team of two clinical dietitians and therapists, Anat Levy and Lia Kornfeld; pediatric gastroenterologist Dr. Tsili Zangen; speech therapist Nofar Ben-David; and pediatric psychiatrist Dr. Maria Moldovsky (who left Israel and was replaced by Dr. Eli Samuel). "We believed it was a behavioral problem and tried to develop a systematic and comprehensive approach for diagnosing and treating the condition," said Levine. "Our experience - bolstered by frequent consultation with a tube-weaning center in the Austrian city of Graz - showed we were on the right track."
One of the unit's most recent successes is a toddler named Eitan Tsabari, the son of Israelis of Yemenite origin living in Florida. As he was born with a severe heart defect and underwent a number of angioplasties to correct it, a gastrostomy (insertion of a feeding tube into his stomach) was surgically performed. As a result, when the parents tried to feed him by mouth again, he associated eating with discomfort and gradually lost the ability to eat by himself.
When he was 15 months old, his mother Merav tried to get him to eat, but a local hospital was unable to help. An Israeli friend who heard about the Wolfson unit referred her, and Eitan was brought to Holon to undergo weaning. Within three weeks, said Levine, he was able to ingest food, including pasta and fried patties, by himself. But when he failed to grow at a normal pace, his US doctors reinserted the tube, causing him to regress.
About to go to nursery school, Eitan was unable to eat or swim like his six-year-old brother. Doctors at Johns Hopkins Hospital in Baltimore predicted that he would "never eat solids again, maybe only drink liquids," and the family were referred to the Graz center, which suggested Levine's outpatient clinic. Eitan came daily for 10 days; by the end of that time, he was eating normally.
"We reorganized his feeding so he had motivation, gave him a lot of attention and allowed him to explore and play with food. As he had been on a bland diet - formula introduced directly into his stomach - food bored him. We discovered he really liked spicy food, and gave him the traditional Yemenite dish of jachnun," prepared from rolled dough baked for half a day at very low heat and eaten with a crushed tomato dip, hard boiled eggs and spices.
"He loved it," Levine recalled. "We heard he is now eating Chinese food, sandwiches with omelets, and gaining weight."
As psychiatrists don't understand digestive problems, they try to exclude every possibility until the final one - a psychiatric disorder - is left. Some whose vomiting doesn't stop even undergo surgery, which doesn't solve the core problem. Levine said the problem requires a multidisciplinary approach.
"Children are brought from all over the world to our failure-to-thrive clinic. We often see them from early on, when the patient doesn't have obvious symptoms. The earlier feeding disorders are diagnosed, the easier they are to treat, but the problem can be found even in teenagers."
WHEN YOUNG children are physically able to eat but refuse food or do not eat well, intrusive feeding by the parent or someone else is often the cause, Levine stated. "They are desperate parents who try to induce their child to open his mouth and push food down his throat - almost like a force-fed goose, or they might try to distract him. Some even try to feed their sleeping child and think he is not aware of it - but he is. They often constantly try to feed the child by chasing after him with food." Levine coined the term "feeding persecution" for this behavior.
Even trying to lure children into eating by offering ice cream or chocolate doesn't work, he continued. "The parents have already tried this and failed." There are children with feeding disorders who gag when food even touches their lips. Some doctors believe it's a sensory disorder involving sensitivity to a certain food, but Levine and his team have enough experience to recognize the true psychological cause.
"When these kids eat properly without being forced, the sensory problem disappears." Difficult feeding transitions are a major cause of food refusal or poor feeding. This transition from breast to bottle, or bottle to spoon or purÃ©es to solid foods is often the trigger for feeding disorders. If it doesn't go smoothly, the parent or caregiver may try to bypass the child's resistance, creating a vicious cycle. The more they stick the spoon into the child's mouth when he's not hungry, the more emotional damage is caused. Although babies' refusal to eat is called infantile anorexia, it has nothing to do with the well-known type of anorexia, which is a body-image problem caused by the plethora of skinny models presented as role models to teenagers.
THE THIRD major group predisposed to develop feeding disorders is small or premature babies. "Doctors recommend feeding them every three hours even though they may not be hungry. Babies don't grow at the same rate," Levine stressed. "As 40% of calories are expended for growth, if they don't grow so fast they don't need all those calories, so they may refuse to eat as much or as often. It can happen in breast-fed babies as well," he said, noting that Dr. Benjamin Spock, who championed demand instead of scheduled feeding, was right.
The final group involves maternal attachment problems. "The mother may be depressed or irritable after delivery, with difficulty bonding with the child, who may not be what she expected. She then feeds the baby mechanically, without cuddling, and the baby detects this. It can make feeding a nightmare." Levine found that when the intrusive factor is halted, children tend to begin to show interest in eating.
"Some of my hospital colleagues were horrified when we declined to feed these children by gastric tube and preferred an intravenous line for fluids into children who absolutely refuse to eat anything. With automatic tube feeding of formulas or liquid food, they do not feel hungry. With the IV, they get liquids to prevent dehydration. This can go for a few days, helping the child develop a sense of hunger without facing the danger of dehydration." As a common theme for the treatment of all feeding disorder cases, the Wolfson team try to reverse the roles of the parent and the child. Instead of the parent running after the child to get him to eat, the parents feign indifference. The child begins to want to eat; they even start to enjoy it. The parents aren't kept away but encouraged to be involved, avoiding intrusive feeding behavior and playing with them or with food," Levine explained.
Slowly, various Israeli hospitals such as Jerusalem's Alyn (which treats physically disabled kids) and Schneider in Petah Tikva have set up facilities for weaning children from gastro tubes. Alyn director-general Dr. Shirley Mayer told the Post that while its clinic is not unique in weaning children from tube feeding, it does have a "picnic session" in which kids and their mothers all get together on the floor with their therapists and a variety of foodstuffs. "The kids copy each other on various foods and ways of getting the food in. It's an amazing sight. They will try things they normally wouldn't touch just because the others are doing it."
But only in Wolfson is there a multidisciplinary unit for diagnosing them in the first place and then treating them.
Parents who want to prevent feeding disorders in healthy children are advised to take a relaxed approach to feeding. They can offer a wide variety of foods before age 18 months, serve as good role models by eating a variety of healthful and tasty foods themselves; make mealtimes enjoyable, unencumbered by TV or other distractions; and not battle with them. Do not provide small children with an unending supply of sweet liquids throughout the day, as this will reduce their appetite. Also be aware that children's growth slows between their first and fourth birthdays, causing them to want to eat less.
Parents who follow this advice will be less likely to need a unit like Levine's at Wolfson.