Seattle Times Eastside bureau
by: Mike Lindblom
Monday, February 7, 2000
07:53 a.m. Pacific

BELLEVUE - The speck of apple on his tongue made him spit up, but 22-month-old Jeremy Lang didn't quit.

He snatched a French fry, shuddered, tapped it against his front teeth, then grasped another apple slice. "Aaa . . . Aaa . . ." he muttered.

Jeremy chewed, and then his tongue reached for an apple bit on his chin. "A, B . . . apple," he whispered.

Three other children nearby merrily spanked puddles of blue, green and red applesauce, so Jeremy did it, too.

Two months shy of his second birthday, Jeremy is starting to overcome his fear of food.

Jeremy is part of the "feeding group," a new therapy offered at Bellevue's Kindering Center. Parents hope the festive environment and positive peer pressure will help their undernourished toddlers tolerate food.

There are 11 similar programs in the West, including one that opened four weeks ago at Children's Hospital & Regional Medical Center in Seattle. Kindering Center's first group started in September 1998.

The clinics estimate about one-fourth of all children have feeding disorders. Terms such as "failure to thrive," "post-traumatic feeding disorder" and "infantile anorexia" describe severe cases. About 1 percent to 5 percent of children need help learning to feed themselves, said Dr. Kathleen Piazza, head of a clinic at the Kennedy Krieger Institute in Baltimore.

Many were born prematurely, and their lives began with tubes in their throats. As they grow, they remember how feedings felt like invasions. When they finally try eating without tubes, they gag. Their fragile stomachs sometimes reject food, squirting liquid back up their throats. Or they are too weak to suck normally.

Three of the six children in the Bellevue class have been fed through gastrotomy tubes, or "G-tubes," in their stomachs because they reject oral feedings. Their parents endured the children's near-death episodes, and now they spend up to six hours a day trying to feed them.

"Wherever we move in the U.S., food is abundant - and (yet) you're afraid your child's going to starve to death," said Debbie Keppler, whose 2-year-old daughter, Amanda, is in the group.

Jeremy Lang was born at 1 pound, 5 ounces on March 26, 1998. He's now 17 pounds, only two-thirds normal weight, said his mother, Chris Lang of Seattle. His twin brother eats normally.

Jeremy has subsisted mainly on formula through a stomach tube.

"For a year plus, he threw up 10 times a day; now we're down to two times a day," his mother said.

He won't swallow, despite various therapies. Jeremy imitates other children, so the feeding group seemed worth a try.

As he tangled with those apple slices Friday, other parents in the group reassured Chris Lang that her frustrations are normal.

Four weeks ago, Jeremy would touch food to his mouth and stop. This time, he didn't gag until the apple bit floated to the back of his tongue, a sign that his hypersensitivity was receding, occupational therapist Sue McKain said.

When the lesson was over, Jeremy's mother embraced him like a fullback protecting a football. "Did you have extra fun with the applesauce? Good job, buddy!" she told him.

"I feel like we're going to make progress," she said.

Children's clinics have provided feeding therapy for decades through interdisciplinary teams that can include therapists, pediatricians, nurses or family counselors. Much of the work is done one-on-one with families.

In 1991 a Denver clinical psychologist, Kay Toomey, and colleagues wondered whether children would enjoy food together instead of just having boring old adults around. They started a group and trained others.

A philosophical rift exists between Toomey's adherents and practitioners whose clinics offer faster, in-patient therapy that includes getting children to eat through rewards and motivational techniques. Providers of the more intensive therapy, Piazza among them, say they can produce measurable goals and results, while Toomey calls her approach more natural for children who have normal learning styles. Each cautions against a one-size-fits-all mentality.

Toomey has devised a 33-step progression to normal eating. Step one: sitting in the same room with food and not bawling.

Friday's session in Bellevue began with children pouring uncooked rice through a toy waterwheel. They brushed teeth, washed with towels, then tinkered with pasta wheels. The children licked powdered candy, pretending to be elephants or lizards. Balls of mashed potatoes are snowmen, or a porcupine when a child sticks French fries into them.

The sessions last one hour a week for 12 weeks. About half the children learn to eat by then, and others can repeat the therapy, said Julie Wood, who counsels the families. "We aren't retiring until some of these kids eat," she joked.

The nonprofit center bills parents $85 per hour, a fee usually covered by health-insurance as occupational therapy. The full cost is closer to $250 per hour, Wood said.

Similar techniques are used one-on-one with other families when children's feeding disorders arise mainly from psychological issues such as power struggles or weak parent-child bonding.

Chris Lang calls feeding group "very Northwesty." She's not sure how much longer she - or Jeremy - can endure his low food intake.

She's giving the Kindering Center until May to solve the problem, or they'll probably enter an intensive in-patient program in Virginia.

"I'd like to have him eating a (McDonald's) Happy Meal. My goal would be a year from now. I don't know how realistic that is. But you've got to aim high."

She hooked a feeding syringe to Jeremy's G-tube and poured in two ounces of formula, to replace what he had just vomited.

"My goal would be not to have to do this anymore."