Two-and-a-half-year-old Finn Richard is struggling to master the most basic skill he needs to thrive and grow: eating.

Mt. Washington Pediatric Hospital in Baltimore, where Finn is treated in an outpatient feeding therapy program, is one of a growing number of hospitals offering clinics that treat a range of feeding disorders. Some are collaborating to improve research and develop treatment guidelines.

As many as 35% of children have feeding problems, from mild picky eaters to children with much more severe food refusal and physical reasons that cause food avoidance, saysRichard M. Katz, chief medical officer at Mt. Washington. The more severely affected children, along with children with disabilities are thought to constitute 10% of children who have significant difficulty eating, Dr. Katz says. In addition to the risk of malnutrition, children face longer-term physical and neurological development issues.

Dr. Katz’s team at Mt. Washington, an affiliate of the University of Maryland Medical System and Johns Hopkins Medicine, includes nurses, pediatric gastroenterologists, psychologists, speech and occupational therapists and dietitians. Most families are referred by pediatricians and specialists.

Children with serious feeding disorders may have digestive diseases, or oral-motor problems. Sometimes there is no single underlying cause. Many need feeding tubes that are surgically implanted or inserted through the nose to deliver critical calories, but continued reliance can delay development of normal eating skills and even make children averse to oral feeding, studies show.

Born prematurely at 32 weeks in January 2014, Finn weighed just 2 pounds, and spent seven weeks in a neonatal intensive care unit. He had acid reflux and difficulty tolerating feedings, and though he was able to go home without a feeding tube, his parents, Katie and Adam, usually spent stressful hours trying to get him to take in even a small amount of formula.

Treatment usually starts in the NICU, where premature babies born before 34 weeks haven’t developed the complex interaction of sucking, swallowing and breathing necessary to take in food, says Sudarshan R. Jadcherla, director of the neonatal and infant feeding disorders program at Nationwide Children’s Hospital in Columbus, Ohio. But NICU staff may not follow any particular standard way of feeding babies orally and weaning infants from tubes, he says.

Dr. Jadcherla developed a protocol for the timing and duration of feeding sessions, emphasizing guidelines that can be tailored to infants’ and parents’ needs. The standardized approach helped babies master feeding sooner and get out of the NICU faster than a baseline group before the intervention, according to a study published last year in the Journal of Parenteral and Enteral Nutrition. “Not only did we prevent sending babies home on a tube but we shortened the length of stay and cut down hospital costs” Dr. Jadcherla says. “We also trained parents to feed babies and reduce their suffering and anxiety.”

However, after leaving the NICU, problems can persist or return, as the Richards soon learned. Throughout his first year, Finn continued to refuse food and throw up much of what he did take in. He wasn't gaining weight. He didn’t have food allergies, and tests were unable to find any physical explanation. Medications to treat his reflux disease weren’t consistently effective. When breast-feeding didn’t work, Mrs. Richard tried mixing breast milk with oat cereal to thicken it. But no matter what the parents tried, Finn would scream and spit up, or turn his head away. Soothing sounds, distractions, and late night “dream feeds” helped but only intermittently, and occasional fevers and ear infections made him eat less.

“We were feeding him eight times a day for an hour and a half each time,” says Mr. Richard, who works as a university business manager. “We got to the point where we were both stressed out of our minds.”

Finn seemed to improve in September, when he began taking solid food, and reaching for a bottle. But by January 2015, things took a turn for the worse. Finn was taking fewer bottles, turning his head away and acting as if he was in pain. The Richards sometimes used a syringe to feed him. When a GI specialist urged them to have a feeding tube inserted through his nose until they could get him eat more, they agreed. But after some initial weight gain his symptoms returned.

In April 2015, the Richards met for the first time with Dr. Katz and his team. Mrs. Richard, a mental health therapist, felt that for the first time, medical professionals were approaching Finn “as a whole person” and taking the time to listen and work with her and her husband. The hospital prescribed a medication that decreases vomiting, but Finn was still whimpering and unhappy after every tube feed, often throwing up before it was complete. In November, the Richards asked that the tube be removed.

At first, Mrs. Richard says, Dr. Katz and the team were hesitant, but took the time to look over the charts the parents had made showing how little his growth had advanced. During a meeting, staffers watched during a tube feeding as Finn retched and turned red, then became lethargic. After the team met to discuss the case, Dr. Katz returned and said ‘We’re taking it out.”

From last January to mid-March, Finn attended a daily feeding therapy program where he got structured meals with feeding therapists. The Richards, who still meet weekly with a speech language pathologist, Melissa Borza, learned behavioral strategies to feed Finn at home. Rewards include screen time. “I was always a mom who said no screen time till he was three, but all of a sudden we are hooked on videos as the only thing that gets him to eat,” Mrs. Richard says.

At only 19 pounds, Finn continues to struggle to gain weight. He eats six times a day, including four meals that can last an hour or longer. Two are night dream feeds—giving him a bottle in his sleep—with the last one starting at 10 p.m. and lasting until after midnight. The couple takes turns staying up, getting him to take as much formula as possible and then keeping him upright for a half-hour to prevent reflux. He is no longer on reflux medication and throws up much less.

Finn’s diet is mostly purées, boosted by a supplement that adds protein and calories, but he has recently started to eat more solids and is getting better at chewing and swallowing. His parents are even giving him some real food like pizza and mac and cheese. His language skills have started to take off “and he’s acting more and more like a typical 2½ year old,” his mother says.

Source: The Wall Street Journal