More than just a picky eater

Jack’s start in life was not an easy one.

He was born prematurely in northern California and immediately needed surgery for an intestinal blockage. He weighed only one pound and looked very sick.

The intestinal surgery was hard on his tiny body. “He was on life-support, and I was terrified,” said Meredith, Jack’s mom.

By five months old, he had gained weight very slowly and still struggled to keep food down.

Jack’s battle with food would last another 6 years.

“We looked everywhere for help but no one could give us any hope,” expressed Meredith. “Jack never ate much, showed signs of hunger or cried for food when he was a baby. We were given medication by our local doctor to make him hungry, but the side effects were horrible.”

Jack was much more than just a picky eater. Because of his prematurity, he missed normal feeding milestones. He didn’t learn how to experience food in his mouth and body or understand hunger signals. This made him uncomfortable and afraid when food was given to him.

By 6 years old, Jack was frail, his hair was falling out and he had been admitted to the hospital several times for dehydration. He would eat limited amounts of mac n’ cheese, cheeseburgers, strawberry hazelnut crepes and a specific type of pesto from the farmers market.

“People often would tell me that ‘Jack will eat when he’s hungry’ or ‘Kids don’t just starve themselves,’” says Meredith. “But my kid, who has feeding issues, would have 100 percent starved himself. Eating was stressful for him; it wasn’t fun, and it wasn’t enjoyable.”

Meredith felt lost until she found CHOC Children’s Multidisciplinary Feeding Program—she was afraid it was Jack’s last chance.

CHOC’s Feeding Program, started in 2003, is led by pediatric gastroenterologist Dr. Mitchell Katz. The first-of-its-kind program offers a comprehensive, positive and holistic approach to treating disordered feedings in a child and family-centered environment.

“I had a lot of anxiety coming here because I didn’t know what to expect or if it would even work,” says Meredith. “But the second I stepped into this place, it was wonderful. For the first time, I felt like I had support and a team who can help take the lead instead of feeling like it’s all on me.”

Jack, of course, loved being at a hospital made just for kids. He was soon a regular at Seacrest Studios—an in-hospital radio station run by CHOC’s child life specialists—making music videos, playing games and just being a kid.

jack-with-angels-players
During Jack’s stay at CHOC, he enjoyed a special visit with Angels players.

The Feeding Program runs over the course of three weeks and each child’s schedule at the hospital is planned every step of the way. Meredith and Jack’s typical day looked like this:

jack-feeding-program-schedule
Jack’s feeding schedule

While most days follow the same schedule, Jack’s goals changed each week to focus on helping him learn new skills. During the first week, Jack was treated by a feeding therapist for all his meals while his mom watched from a separate room. A psychologist or social worker explained to Meredith the therapy and strategies being used along with Jack’s reactions. By the third week, feeding sessions began to mimic meal times at home. Both parents could participate and lead mealtimes so they would be confident and prepared to feed Jack at home.

jack-face-paint
Jack’s care team loved the progress he was making in the feeding program, and Jack loved being at a hospital just for kids.

Jack made rapid progress. Before the program, he was consuming around 800 calories a day. By discharge he was consistently accepting 1,600 to 2,000 calories every day. This intake came from high-quality foods including vegetables, omelets, fruit, sandwiches and also, from foods that you would expect all kids to love: blueberry pancakes and bean and cheese burritos. These were all items that he would never have touched before.

jack-soccer
Before joining the feeding program at CHOC, Jack would barely eat. Now, his relationship with food is better and he’s getting stronger everyday.

Jack’s remarkable journey is a credit to his integrated and skilled team that has consistently seen a high rate of success. It is also a credit to the way Dr. Katz connects with his patients.

“Dr. Katz calls Jack ‘Nose’ because of the funny thing he used to do with his nose whenever he was introduced to new foods,” says Meredith. “In return, Jack calls Dr. Katz, ‘French Toast.’”

Coincidentally enough, if you ask Jack what food he loves now, he’ll emphatically say French toast…with lots of maple syrup.

Learn more about CHOC's feeding program

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Do’s and Don’ts for Parents of Picky Eaters

Why won’t you eat the apple? You love applesauce!

 Try the roasted chicken! It’s the same thing as the chicken nuggets you love.

 Taste the tomato! It’s what spaghetti sauce is made of and you like that. 

When it comes to children and picky eating, logic can go right down the garbage disposal. A quarter of all children experience minor feeding problems, and many parents fret about their kids’ eating habits.

The good news is that most children outgrow fussy eating habits. In the meantime though, Dr. Mitchell Katz, a pediatric gastroenterologist and medical director of CHOC Children’s Multidisciplinary Feeding Program, has some Do’s and Don’ts for parents of picky eaters.

  • Don’t try to trick children into putting food in their mouths. This tactic doesn’t help them learn about the new food. Exploring foods by touching, licking, smelling, poking and rolling are important ways that children can learn about food before they put it in their mouths and eat it.
  • Do consider how food looks. Like on cooking shows, plating and presentation matter for picky eaters. Try making food look like fun shapes, play up colors, or create scenes to help capture kids’ interest in new or unappealing foods.
  • Don’t worry about fluctuating eating habits. Just like adults eat more on some days than others, it’s normal for children to be inconsistent with how much and what foods they eat.
  • Do focus more on variety than quantity. It’s more important for children to eat a small amount of food from a broader number of food groups than to eat a large quantity at one meal.

While many children will outgrow the habit, some kids’ picky eating can be a sign of a more serious problem. Dr. Katz offers some warning signs that parents should look for when evaluating their children’s eating habits:

  • A child is delayed in meeting feeding milestones but not in other milestones. Children’s eating skills should mirror their other physical and cognitive developmental skills, like sitting, walking, talking and paying attention.
  • The child cannot transition or advance to the next level of eating. Are children progressing from bottle to sippy cup, from smooth purees to lumpy foods, or from familiar to new foods?
  • The child eats only a certain brand or type of preparation for all or most of their food.
  • The child has minimal intake or outright refuses to eat for several days, unrelated to an illness.
  • Extreme measures are taken to nourish a child. Force feeding, feeding when children are asleep or distracted, or abiding by intense routines are cause for concern.

Parents who recognize these signs in their children should seek medical attention, Dr. Katz says.

A severe feeding issue – like what Dr. Katz and his team treat at CHOC – involves physical, psychological, behavioral, nutritional, and familial obstacles to eating.

Addressing all a child’s medical problems is important to start to make positive associations with food and eating, which may require the help of multiple specialists.

Learn more about CHOC's feeding program

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South Dakota Family Finds Success with CHOC’s Feeding Program

At every pediatrician’s appointment, Christine Egan dreaded putting her daughter, Layla, on the scale.

“I knew her little growth curve. She was below the 0 percent growth curve every single time,” Christine recalled.

Because of a combination of failure to thrive, gastroenteritis and food allergies, Layla received a feeding tube at age 15 months.

The tube helped her get the nutrients she needed and she’d pick up on growth. With a handle on the other underlying issues, the family would begin feeding therapy. But try as they might, the Egans could never reach a place where life without a feeding tube seemed within grasp.

“Other parents think they understand but they don’t,” Christine said. “Picky eaters don’t eat as much or as much of the variety as you’d like them to, but they’re still growing. Layla would eat some things, and it wasn’t a bad variety, but it was two or three bites and say she was done. There was nothing you could do to get her to eat more.”

Finally, when Layla was 5, the family turned to CHOC Children’s multidisciplinary feeding program. In January 2013, Christine and Layla traveled from Sioux Falls, S.D., to Orange, Calif., to undergo an intensive 19-day program where Layla would learn how to eat and Christine would learn how to support her.

The program was a success, and about six months after returning home from CHOC, Layla’s feeding tube was removed. Life has since changed dramatically for the Egans.

feeding program

“The biggest thing was when we could just have a meal and there was no drama. We finally had the kind of meals that we take for granted now,” Christine said. “Before, there would be constant drama. With three meals a day plus two or three snacks, it was five or six battles a day.”

Today, Layla is 9 years old and enjoying fourth grade. She’s doing well and enjoying food, and Christine no longer worries about how much she’s eating.

“She’s going to eat what she needs, and some days it’ll be more and some days less,” she says. “And at dinner time, we can sit down as a family. It’s so simple.”

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In the News: CHOC’s Feeding Program

Dr. Mitchell Katz, a CHOC Children’s pediatric gastroenterologist, recently appeared on the radio program “Good Food” on KCRW to offer insight into the challenges parents face when their child can’t or won’t eat.

Dr. Katz is the director of CHOC’s Multidisciplinary Feeding Program and pediatric GI lab services.

CHOC’s multidisciplinary feeding program is one of only a handful of specialty feeding programs in the United States to offer comprehensive outpatient consultation and inpatient programs.

Children under evaluation and treatment for feeding disorders at CHOC have typically failed outpatient feeding therapy and have either a feeding tube or at risk for a feeding tube. Patients  can have a range of medical problems, or difficult behaviors that make meal times a struggle. The program receives referrals from throughout the country.

Listen to Dr. Katz’s insight below:

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CHOC Patient is Succesfully Treated for Feeding Problem

CHOC Children's Multidisciplinary Feeding ProgramBefore coming to CHOC Children’s, Pacer Lybbert had never eaten a Cheerio, a piece of toast or even a spoonful of yogurt. He was almost 4 and had never enjoyed birthday cake, Halloween candy or a Thanksgiving dinner with his family. Since birth, Pacer had received almost all of his nutrition through a feeding tube.

Quinn and Mekell Lybbert may never know why their son, now 7, was born unable to swallow. Everything was fine at first, but within a couple of weeks it was clear their baby was struggling to eat. Finally, there was no choice but to put a feeding tube through their infant’s nose. It was supposed to be a short-term fix, but as Pacer grew older, and efforts to help him failed, he had to have a gastric tube inserted directly into his stomach.

Quinn and Mekell had resigned themselves to the possibility that Pacer would need a feeding tube for life. Then, they met a little boy near their new home in Montana who had been successfully treated for a similar problem at the CHOC Children’s Multidisciplinary Feeding Program. Mekell immediately called CHOC.

Five weeks after coming to CHOC, Pacer’s feeding tube was removed. He left for home eating equal parts solid food and a liquid nutritional supplement. Six months later, Pacer was eating regular food with his family — and asking for seconds.

“The interdisciplinary approach is what made this program so different and why it was so successful,” Mekell said. “We had so many people working together as a team trying to figure this out. Had we not gone to CHOC, Pacer would still have a feeding tube.”

See Pacer’s brave journey in this video.

Learn more about CHOC Children’s Multidisciplinary Feeding Program.

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    Each year, one in 10 babies in the U.S. are born prematurely. For the Cushing family, that statistic is two in two. Eleanor and Spencer’s eldest son, James, was born ...
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