April 01, 2014
From The Orange County Register
Published: April 1, 2014
By Landon Hall / Staff Writer
Moms might have mixed feelings about the McDonald’s Happy Meal. Some see it as a nutritional defeat: a box of fried guilt, with a toy thrown in as a bribe. For others, it’s a blessing of convenience. Lunch is served, and the kid is quiet for now.
By the numbers
The children who have trouble putting on weight or other developmental issues often have at least one significant medical issue, which could include heart defects, neurological problems or lung disease. Acid reflux or allergies could lead to eosinophilic esophagitis, inflammation of the food tube.
These conditions early in life could stunt a child's learning how to feed normally. From May 2009 to December 2011, CHOC studied 30 children admitted with feeding disorders, all of whom were on a G-tube, or feeding tube. Seventeen of the children had been born prematurely, and 25 had at least one major medical problem. After 19 weeks in the program, 90 percent had been weaned off the G-tube, and a year later, 83 percent were still off it.
The study, led by dietitian Jessica Brown, is being published in the Journal of Pediatric Gastroenterology and Nutrition.
"What's critical in this program is, it's not just the kid," said Dr. Mitchell H. Katz, a pediatric gastroenterologist who leads the program. "The parents can't drop the kid off for three weeks and say, 'Everything's fixed.' This is an intensive program where there's as much attention paid to the parent, and their skills and understanding, as the child."
For more information, call 714-509-4884 or visit CHOC.org/feedingprogram.
But last week, as he sat with his mother at a table inside a tiny room in the basement of Children’s Hospital of Orange County in Orange, he ate just about all of it. With prodding from his mom, he popped cubes of nugget into his mouth, scarfed the apples, nibbled fries and washed it all down with chocolate milk. Behind a one-way window, a team of specialists rejoiced.
“This was a major victory,” said Dr. Mitchell H. Katz, director of the hospital’s Multidisciplinary Feeding Program.
The kids who enter the CHOC program, usually age 2 to 6, have issues that go far beyond just being a picky eater. Many of them have endured medical disorders, including lung disease and heart defects, that inhibit their ability to eat normally. Some only get nutrients through a G-tube, in which food is delivered directly into the abdomen. Some need to be trained how to swallow and chew their food. They and other children might have developed psychological aversions to food, and often the behavior of desperate parents only makes the problem worse.
Since the program began in April 2003, 108 children have been treated, one or two at a time, each for three weeks on an inpatient basis.
They arrive unwilling, or unable, to eat meals like other children. When they leave, the vast majority are eating nutritious foods. They’ve fundamentally changed, and so have their parents.
“It’s been a fantastic experience,” Gretchen said. “I feel like my child is on the road to healthy eating, where before he was not, and it’s such a helpless feeling not being able to get your child to eat.”
It helped, somewhat, that Joshua had a role model, someone who had gone through the ordeal already: his older brother Daniel.
Gretchen, 40, and her husband Brian, 42, who’s the senior pastor at Chino Valley Community Church, have four sons: Andrew, 15, Noah, 12, Daniel, 6 and Joshua, who turns 4 in July. The older boys eat normally, but Daniel never did. All he ever seemed to eat was puréed foods. “If I didn’t allow him to eat yogurt, I think he would have starved to death,” Gretchen said.
The couple heard about the CHOC program, got their health insurer to pay the six-figure cost of treatment, and Daniel entered in the spring of 2013. First off, the team diagnosed him with severe allergies that had left his esophagus inflamed. “They said it’s probably been hurting him his whole life,” Gretchen said. Medication cleared up the problem.
Daniel stayed for the full 19 days and nights, along with his mother. There are six “treatment” sessions a day: breakfast, snack, lunch, snack, dinner, snack. In between, there are meetings after meetings, with dietitians, feeding therapists and psychologists.
“For a parent here, it’s seven hours of work a day,” Katz said. “It’s exhausting.”
It worked for Daniel. Now he eats everything and anything. Joshua had a similar problem, it turned out: acid reflux that also made it painful to swallow.
But he was also a handful to deal with, and when Gretchen entered the program with him last month, it was like starting anew. During the feeding sessions, he’d throw tantrums so violent that he’d be reduced to screaming for an hour.
For the first week, though, the parent is strictly an observer, watching through the one-way window. And the child usually acquiesces to the caregivers. Then it’s mom’s turn in Week 2. That’s when the battle for control is joined.
“The second week, it’s for real,” Katz said. “The kid is like, ‘I’m losing control,’ and mom is not the same person she was.”
There were bleak moments, though, when Gretchen, unable to get Joshua to eat anything, would just sit there during a session, despondent. Or when Joshua would yell so loudly that she couldn’t hear the instructions and encouragement of the feeding therapist, Erin Keller, behind the glass, speaking into Gretchen’s ear through a baby-monitor walkie-talkie.
“You feel like, ‘They must think I’m a horrible mother,’” Gretchen said. “Why does my child behave this way? Or, why do they have to teach me how to manage my child’s behaviors? So often I’m in there and I’m just going crazy, thinking, ‘Just please put it in your mouth, just eat it. I know you like it.’”
Gretchen, who grew up in a San Diego household where sugar-bombed cereals were forbidden, had to recalibrate her notion of what a balanced diet is. At this stage, as long as he’s eating something of substance, including some protein and dairy, it’s better than all sweets.
Joshua had a setback during his stay, when he came down with a bad cold and couldn’t eat anything at all for a week. Their insurer agreed to foot the bill for a fourth week, but the approval came in late in the week, and by that time they were eager to pack up and return home.
Last week, Joshua and his mom returned to CHOC for four days’ worth of follow-up care – basically morning snack and lunch. During the regular Tuesday morning meeting of the program’s team, few of the 15 specialists in the room were optimistic about Joshua’s progress. Sure, his caloric intake was near normal, but 50 percent of those calories came from milk and fruit, 77 percent of which was juice. His last meal before discharge was grilled chicken, steamed carrots and rice. But the sentiment was, he’d started from such a deficit – candidates normally are treated at other outpatient facilities for months until they’re ready for the CHOC program’s intensive therapy – that he’d have trouble meeting his goals. And there were those behavioral issues.
“We were beating our heads against the wall,” therapist Hema Desai said.
But Joshua surprised them. At noon, he entered the tiny room in the basement, just off the small rehab facility, wearing a red Captain America T-shirt. His mother opened the Happy Meal, peeled away the foil of the barbecue-sauce pack. The toy lay stashed away somewhere for later bribery, if needed.
Gretchen felt these sessions were pressure-packed performances, but she, too, showed off how much she’d learned.
He’d eaten chicken strips before, in the hospital cafeteria, but nuggets were new. “I don’t want a big piece!” he said. To allow for the difference in size, Keller got on the walkie-talkie and advised her to cut it up.
Negotiations followed: Finish your bite, then you can have some apple. She took away a plastic spoon and fork, which he was using to cover his eyes. He folded his arms. “But Mommy!” They had a little race to see who could finish a bite first. Fake crying turned, briefly, into real crying, then back again. She sipped his chocolate milk, and he took offense. She moved her chair a foot farther away from him.
“We teach the parents to be nonreactive to adverse behavior,” Keller said, “to not reinforce it.”
“She’s putting herself in a timeout,” Katz added. “Mom’s disengaging from the game, so she doesn’t get sucked in.”
Joshua flicked a piece of apple like it was a paper football. Mom took it away. “She would not tell him no before, or else he’d go on a hunger strike,” Katz said.
You pick which one you want to eat next, Joshua, a piece of chicken or a fry. Or I’ll pick.
“It’s all about control,” Katz said. “We give them a little bit of control: Fork or no fork, dip or no dip. You never ask a kid a yes or no question. One of the signs of readiness for the program is the ability to know that concept.”
After the most tedious McDonald’s meal in history, dragging on for 45 minutes, it was over. Breakthrough. Katz and Keller went into the room to congratulate Gretchen.
“Nice work,” Katz said. “You did awesome. You really broke him down. That was phenomenal.”
Gretchen said things were going so well at home with meals that she felt confident about a weekend getaway to Newport Beach.
“We’ll probably eat out a little bit,” she said. “But we’ll also do our own meals. Which is important, getting Joshua back into the way our family works.”
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