Posted on 03/06/2005 6:16:39 AM PST by beaversmom
Kendall Shanks chewed on a few grains of rice like she was working on a porterhouse steak. Her mother, Brenda Cook, was astonished.
"Oh my gosh! Look at Kendall!" her mother cried, maybe just a little too loud for a restaurant.
As the 2 1/2-year-old continued her vigorous efforts, Mom pretended to chew with cartoonish exaggeration and praised her daughter more boisterously.
"Kendall's such a big girl!" she said, her eyes filling with tears.
She and Kendall's dad, James Shanks, giggled at their toddler's performance. It was only later they wondered what other diners thought of their response to a little girl eating.
Had the spectators known what this family has been through, they might have teared up a little too, because Kendall, a petite 18 pounds, does not eat. She doesn't like food. She doesn't want it.
And she's not alone.
Kendall is among what appears to be a rapidly rising number of youngsters with heart-wrenching eating disorders. While the rest of America worries about childhood obesity, these children refuse food.
"There is a huge lack of awareness; few people really comprehend how many kids this affects. And it only continues to grow," said Amy Ruth, a pediatric speech pathologist.
Often, feeding problems stem from pre-maturity. An estimated 30 percent of premature infants develop eating disorders.
In a way, the children are paying for the medical miracles that keep them alive.
"Clearly, more very low birth weight infants are surviving, and more infants are surviving major heart surgery, and major gut kinds of problems, whereas 10, 15 years ago these babies died," said Joan Arvedson, program coordinator for feeding and swallowing issues at Children's Hospital of Wisconsin.
Kendall Shanks is one of those rescued children. She was the size of a Beanie Baby when doctors took her by emergency Caesarean section three months early in August 2002. By January, Kendall lost all interest in food. When she did swallow a little milk, projectile vomiting followed.
As frustrating as such problems are for the families, they are a disaster for the infants.
Without adequate nutrition in the first two years of life, brain development lags, Arvedson said. To prevent this, kids with feeding problems are fed through tubes into their stomachs. Tube feeding keeps them alive, but it falls short in so many ways.
While using the tube, babies lose the drive to eat and miss the important developmental milestones that come from eating by mouth, said Dr. Robert Bobo, a Toledo, Ohio, pediatric gastroenterologist who works with these children.
Feeding by mouth trains the entire digestive system. It triggers hormones in the liver and gut that make the gut grow faster. It prepares the gums for the eruption of teeth. It prepares the mouth for speech.
And it teaches the baby to eat. Perhaps that's obvious, but the consequences of not learning to eat at the right moments are long-lasting.
Yet eating is hard work, true aerobic exercise for the premature infant. Six cranial nerves and 26 muscles are involved in swallowing, and premature infants, already working harder than they should to stay alive, may not be up to the complex coordination required.
There is no clear-cut rule when it's safe for preemies to try a bottle. But feed them too early and you may assist the launch of an eating disorder.
Oral feeding may use energy the baby does not have to spare. A single oral feeding that looks successful can be exhausting, leading to a second or third attempt that provokes choking.
While the source of feeding problems in most babies can be traced to pre-maturity, medical problems, developmental delays, or anatomical abnormalities, a few children stop eating for less apparent reasons.
Babies born full-term and developing well occasionally can change their minds about food.
Halie Wanless, 2 1/2, weighed 9 pounds when she was born. She liked her bottle. She liked baby food. She had no problem with oatmeal. But nothing else. Lumpy food made her gag.
"We just kept thinking she would eat," said her mother, Heather Wanless of Deshler, Ohio. They tried for more than a year to feed her before turning to a hospital.
"There's nights when we go to bed and her little tummy is growling. I can hear her tummy growling but she won't take anything," Wanless said.
Eating problems are complicated and remedies are time and labor intensive, and often emotionally trying.
As if that wasn't enough, parents also must deal with a world that doesn't believe them.
"You do feel like a failure, because some of the doctors do look at you like, 'Don't you feed this kid?' " said Kendall's mother, Brenda Cook.
"You tell your story a thousand times to people, to waitresses at restaurants, to your family members, and they just don't get it until they see what she does," said Wanless.
"People didn't understand," said Shelby Marckel, whose son, Jarrett, didn't eat until he was 4. "Grandmas and grandpas didn't understand. Aunts and uncles, cousins, didn't understand. "They'd say, 'What do you mean he won't eat? ... Every kid eats. Give him a bottle.' "
The road to eating is a long one. Some children, especially those with neurological problems, will probably never eat by mouth. And even those with simpler problems can be remarkably resistant. There are 8 and 9 year olds still dependent on tube feeding despite an ability to do otherwise.
When a child comes to a feeding team with a problem, the group first has to treat or rule out any immediate medical cause. But even when those problems are fixed by medication or surgery, there are enormous behavioral issues. These babies associate eating with pain. They don't know how to swallow lumpy food. Feeling it in their throat panics them. And many have learned to thrive on the attention and chaos of mommy-time-intensive feedings.
Step by step, those issues are dealt with. Many babies, including Kendall, are fed all night through a feeding tube so they are never hungry. Eventually, Kendall will have to be weaned from the tube, a difficult process for the parents. Although the child still receives adequate nutrition, she gets very hungry.
Kendall's mother is still waiting for her miracle. Her daughter had surgery in April to prevent projectile vomiting, and she's finally beginning to gain weight.
In the meantime, her mother tries not to put too much stock in Kendall's occasional forays into food.
"I can't get overly excited," she said. "I never know what tomorrow holds."
I never even knew this problem existed. Thanks for the post.
I am suspicious of this "disorder". Very suspicious.
My oldest suffered from a condition that wasn't diagnosed at the time. There is a name for it, but I can't remember what it is. Occasionally, the flap over the esophagus doesn't close properly in newborns, and they vomit up everything. We wore trash bags when we fed her. She didn't have a problem with solid food, except that she was very picky. When she was a year old, she weighed 18 lbs.
I had no idea about the problems in this article. Thanks for posting this.
I didn't either to the extent that children had to have feeding tubes; although my first born, like one of the little girls in the article, was funny when we introduced textured/chunks of foods to him. He wanted everything to be smooth. He had a very strong gag reflex and it would often cause him to vomit. He grew and was always in a good percentile for his height and weight so it wasn't too much of a concern. He's 8 now and still has a strong gag reflex. If he gets overfull he'll start gagging which sometimes leads to his food coming back up.
My two year old is somewhat of a picky eater. He doesn't gag or have any problem with chunks of food--he's just likes what he likes and won't try anything new. He'll eat a scoop of peanut butter but won't eat a peanut butter/jelly sandwich. Now what kid doesn't like peanut butter and jelly sandwiches?!?
When I began reading the article I began to get a little angry because the term "eating disorder" brings to mind Anorexia and Bulemia. The article causes me to think that there were digestive disorders that develop into eating disorders. After all if eating makes a toddler sick, it stands to reason that the child may fear eating long after the physical disorder is corrected.
I had heard that preemies were prone to Prader-Willi syndrome. This is kind of the opposite, huh?
What is Prader-Willi? Someone else mentioned that a few weeks ago to me in another post. Is that where the kids eat everything in sight? I watched a show the other day that had a 90 pound 2 year old. That boy ate his every waking moment and the mother encouraged it. I don't know if he suffered from any syndromes or not or just had an out of control mom.
I'd never heard of it either. Both of my kids were preemies--28 & 29 wks--so I could certainly relate to how hard the wee ones have to work to eat and that a fully developed sucking reflex comes very late in gestation. We had feeding problems at the get-go but got over that hurdle relatively soon. Never dreamed that those problems could continue.
That's terrible. How much does he weigh? Prayers sent for a successful surgery.
Kinda 'yuppie' to have "A Girl Named Ken".
Best wishes to your grandboy and his parents. I wish I had more information/knowledge on it. I bet if you did a google search on babies/toddlers and eating problems you could pull up some info. Good luck to you.
Now these boys are suffering from a different kind of disorder.
I think you all can see where this and future articles will lead.
Yes, it's the classic "See Food" disorder.
I have a 6 year old cousin who won't touch ice cream. I though that was strange. He will eat a pop cycle but not ice cream.
FTT, failure to thrive, is uncommon and seen in newborns not in toddlers.
I have noticed that little babies are being treated with adult medications for so many things, after of course being "worked up" with xrays, gastroscopes, etc. Then they are put on Tagamet like drugs,,because they spit up. It seems scary to me that parents can't take a "spitting up" colicky baby without all this medicalization of their children.
I had three. They went thru spitting up, not sleeping, having colic, having the occasional loss of appetite, perfectly normal, that kids have. Now there are an army of helpers waiting to put them on meds, etc.
This just makes me suspicious. LIke it is overtreatment. Maybe I am wrong, I am alot, but I just wonder.
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