(MCT) KANSAS CITY, Mo. — Like everything else about 4-year-old Leah Southard, from her tumbling brown hair to her little pink and gray sneakers, the kid-size backpack she wears is darn cute.
And she wears it almost all the time, everywhere. She must be channeling Dora the Explorer, strangers comment with a smile.
Leah can't remove her backpack for long because it's her nutritional lifeline, what keeps her going, literally. Zipped inside is a pump and formula. Leah gets her "meals" exclusively by feeding tube — a 20-hour stream every day.
"It's what has sustained her," her mother, Wendy Southard, says.
She's used it for almost all of her four years, beginning just two months after she was born. In fact, it helped save her life.
But now, with her health stabilized, the rambunctious preschooler could be done with the feeding tube — except that this seemingly simple transition is anything but.
It's not that Leah can't eat. It's that she never has, doesn't know much about it and has almost no interest in it.
She's like thousands of youngsters across the country who must be hooked to feeding tubes as they battle through early medical interventions: They miss the normal progression of learning to eat.
"Lots of times these children have never eaten," says Ann Davis, pediatric psychologist at the University of Kansas Hospital. "How to eat is a skill like any other skill."
And rather than bringing comfort, eating might feel uncomfortable to them, even painful.
Davis is leading a study to investigate the short-term use of amitriptyline, a pain suppressant typically used as an antidepressant, to help wean youngsters off their tubes at home. Fourteen children are enrolled so far at hospitals in Kansas City, Mo., Columbus, Ohio, and New Orleans.
Jose Cocjin, pediatric gastroenterologist at Children's Mercy Hospital, has seen many young patients like Leah.
"They have missed that milestone time to exercise those muscles, to find out that eating is actually good," Cocjin says. "They may have bad reflux, heartburn. And they think, 'if I eat, it will hurt.'"
The Southards of Baldwin City, Kan., agreed to participate in the study at the suggestion of Children's Mercy, where Leah has been treated.
Leah was very sick early on: She spent most of her first year in the hospital. She suffered from severe gastrointestinal inflammation and eventually was diagnosed with Crohn's disease. It's a rare diagnosis for someone so young. She couldn't be fed normally.
Leah began with an intravenous tube, then a tube in her nose and finally her gastrostomy tube, or G-tube, which delivers liquid nutrients directly into her stomach through a port.
That's the method she knows so well. She also knows that her tube, held in her stomach by a tiny balloon, and the mechanism inside her backpack must be monitored.
She even made up a song about it, worthy of a Disney musical: "Pump, why are you beeeeeping?" Leah knows there are several possibilities for the pump's signal. Most likely the formula has run out or the line is plugged.
It's all second nature to the Southards now, but there's nothing simple about the mechanism's maintenance, from caring for the incision site in her stomach to reattaching a pulled-out tube to flushing it when they administer medications. Leah takes 10 "oral" medicines delivered through her G-tube. One drug is administered five times a day.
Things go wrong. The port can pop open, spilling medicine on the floor. A leak at night can mean "feeding the bed" for hours. That's a mess, of course, but also could be serious, leading to dehydration.
Wendy and Andy have missed out on the joy of preparing and sharing good food with their child, daily and on special occasions and holidays.
Here's a 4-year-old who collected candy on Halloween night like any other youngster but had no intention of eating it.
"She was excited about getting candy," says Wendy recently when the family came to the University of Kansas Clinical Research Center in Fairway to meet with Davis.
"She would lick some of the candy, put it in her mouth," Andy says. "But she spit it out. So pretty normal up to the point of chewing and swallowing."
The couple hasn't avoided talking about food with Leah. They go out to eat occasionally, including for pizza. Leah often puts a piece up to her mouth, touches it with her tongue but puts it down. Then she'll suck on some olives and spit them out.
"It draws some attention," Andy says. "We stick out a little bit. And there's the backpack. People see she's wearing it in some peculiar situations."
"I laugh because she says she loves pizza," Wendy says. "She's never actually eaten a piece."
The couple's attitude is upbeat in general and especially to Leah. They don't want her to get the idea that her care is a burden to them.
Leah, who also wears a colostomy pouch, asked for none of this, of course.
"It's our daily life," Andy says. "We obviously try to keep it really positive. We want to fill her with hope and with the encouragement that we're going to find a way to live as close to a normal life as possible."
The study might move them closer to a new normal: freedom from the tube.
The study participants were evaluated by doctors and therapists to rule out physical or medical reasons for food refusal. They are given amitriptyline or a placebo and, as their tube-feeding is gradually reduced, an appetite stimulant called megestrol for several weeks.
The entire program takes about six months. The study is scheduled to be completed in July 2014 but may be extended.
Several inpatient and outpatient tube-weaning programs are used around the country with varied success. Therapists and psychologists coach parents on introducing food. They monitor hunger and behavior and provide help if parents and kids butt heads.
But inpatient programs can be expensive and a burden on families, Davis says. Some require stays of two to four months. Safely adding medications to an outpatient program could be a great new tool, she says.
Hayat Mousa, medical director of a research center at Nationwide Children's Hospital in Columbus, Ohio, says the question of pain-modulation is an important one.
"If we don't take away the pain or allay the pain memories associated with eating, it might be more difficult to transition to oral feeding," Mousa says.
Tube-feeding for infants and youngsters will remain prevalent and even grow, says Cocjin at Children's Mercy, because care continues to improve for premature babies and for infants with heart and other organ ailments.
Some 11,000 pediatric patients are placed on feeding tubes every year, according to one estimate, although some of those are older children more easily weaned from tubes.
"Sometimes kids go years and years without progressing in their eating," Cocjin says.
At the Southard house near Baker University, the past two weeks have seen a change.
Leah is getting extra hours free from her feeding tube, and Wendy and Andy are offering her "real" food six times a day, mostly things she expresses interest in. They're taking occasional videos for the study and talking by phone to Davis about Leah's diet.
"Is your tummy feeling hungry?" Wendy asked a backpack-free Leah late one afternoon recently.
"Yeah!" Leah said.
"What's your favorite snack?" Wendy asked.
"Popsicles!" Leah says.
No, not a Snickers bar. But that's OK. The Southards are concentrating on soft foods while also offering an item or two that would require chewing.
Leah likes applesauce, chocolate pudding, Nutella and frosting. For her, high-calorie is a good thing. She also enjoys crackers and tortilla chips for the saltiness.
Marshmallows and carrots? Not a hit, at least yet.
Another change: Wendy and Andy are allowing themselves to think about life for Leah without a feeding tube, from eating cake with friends at a birthday party, say, to a possible kindergarten career that would include eating normally in the lunch room with classmates.
"It's exciting," Wendy says, smiling a big mom smile. "The trickiest part is finding out what she likes. I feel like a new mom — I don't know what to feed my kid."
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