February 8, 2006

Genetic Link to Anorexia?

Genetic Link To Anorexia?
LAKE VIEW, Iowa, Feb. 3, 2006

(CBS) There is a startling new theory about what causes some cases of anorexia: It's not the media or other cultural influences, but rather a genetic predisposition.

As The Early Show correspondent Melinda Murphy reports for a two-part series, there has to be a trigger to set the disease into motion. For some, it can be a simple case of a childhood disease such as strep throat. Just last week, 7-year-old Kennedy Pieken was in the hospital. "She got the flu over the weekend and ended up losing five pounds and getting very dehydrated. She wouldn't eat or drink anything," explains her mother, Jodi Pieken. Kennedy had lost five pounds, something she couldn't afford, because this first grader from Lake View, Iowa, has been battling anorexia for three years. "The way she was going, I was afraid she was gonna die. I mean, her hair was falling out. She looked awful," says Jodi.

Kennedy's parents didn't know what to do when their preschooler suddenly stopped eating. "I would wake up in the morning hoping she was still gonna be alive and then thinking, 'OK, now I gotta start the day over again. Trying to get her to eat.' It was awful," Jodi explains. And although Kennedy was only 4, she knew exactly what she was doing. "I nibbled on it a little bit. and then I pretended to eat it. So then I pretended to swallow it, too," says Kennedy. She admits she would put the food in her cheeks and then spit it out later. For five months, Kennedy lived on ice cream, chocolate milk and pudding. Even getting those foods down was a struggle. "Even when she would eat the pudding it would just be like sticking the spoon into the pudding, getting a dab of it, and then putting it in her mouth that way. You know, it would take her almost two hours to eat a little cup of pudding," Kennedy's father, Roger Pieken, remembers.

"There was one point, Roger was holding her with her mouth open. And I was trying to shove a tiny bite of peach into her mouth. She was screaming. Bawling," says Jodi. Asked what caused her to stop eating, Kennedy says, "I don't know. Because my brain was telling me not to eat." Jodi realized this wasn't just a case of picky eating and began to suspect anorexia; she knew the signs, because she has fought the disease herself for years "This summer, actually, I was in Omaha, at a clinic for three weeks with it. Finally, my husband and a friend of mine said, 'You need help. You have to do something.' Cause I got under 100 (pounds)," explains Jodi.

"We're finding more and more that there is a biological predisposition to having an eating disorder, especially anorexia nervosa," explains Dr. Mae Sokol, who runs a unit at Children's Hospital in Omaha, Neb., that specializes in pediatric eating disorders. "You could be born with that biological predisposition, but it doesn't mean that you're going to develop this disorder," Dr. Sokol says.

In other words, a predisposition needs a trigger to set off the behavior. In Kennedy Pieken's case, it was strep throat. Kennedy didn't stop eating because her throat hurt, but because the strep caused changes in her brain, something Dr. Sokol says she has seen before. "A small group of people who get strep throat go on to develop autoimmune diseases — in other words, problems where their body attacks itself," she explains. If your child gets strep throat, Dr. Sokol says, you shouldn't panic. "It is very normal to get strep throat. There's just a small group of children who get a problem with eating after they've developed strep, after the strep is over with." Months after the strep was gone, Kennedy was still losing weight. The Piekens finally took her to the eating disorders program in Omaha. "Her doctor sat me down. And she's like, 'I don't sugarcoat things.' Jodi said, 'You know, this is a life or death situation. And your daughter is in bad shape.'"

Kennedy spent two weeks at the clinic learning about nutrition and diet. Doctors had to use creative therapies to reach somebody her age, and when Murphy first met her a couple of months ago, Kennedy had been eating normally again. But less than two weeks after The Early Show team left, Kennedy got another case of strep, triggering her most recent relapse. The stress brought back her mother's symptoms, too. "The kids do, they notice," says Jodi. "They'll say 'Mom's not eating very good,' and that does hurt me. But it makes me more than upset and then I can't eat. I mean, I just physically cannot eat." Jodi acknowledges that it makes "no sense" that she gets upset with Kennedy for doing the same thing. Kennedy picked at her food for weeks. That's why a bout with the flu sent her back to the hospital and her parents back to the drawing board. "It's been a very frustrating day. The doctor wants, the local doctor wants to send her back to Omaha. But I just don't know if that's the right thing to do," wonders Kennedy's father, Roger.

Kennedy, who turns 8 next week, has since returned from the hospital and is on a very strict eating regimen for the next two weeks. If she doesn't improve dramatically, her parents will have to take her back to the eating disorders unit in Omaha.

Part one of this The Early Show series covered the possibility that some people are born with a genetic predisposition to such disorders. Click here to watch part one. For information from the Omaha Children's Hospital, click here. The National Institute of Mental Health is sponsoring a multicenter, international study seeking to determine whether a gene or genes might predispose individuals to develop anorexia nervosa. The reseachers need families with at least two relatives (sisters, brothers, cousins, aunts, uncles, grandparents) who have or had anorexia nervosa, and who would be willing to participate. The study involves the completion of interviews and questionnaires, and a blood draw. Participants don't need to travel and will be paid upon completion of the study. For more information, call 1-888-895-3886, or e-mail EDResearch@upmc.edu, or visit angenetics.org.

The National Eating Disorders Association (NEDA), headquartered in Seattle, Wash., is the largest not-for-profit organization in the country dedicated to supporting research for the prevention, treatment and cure of eating disorders; supporting state legislative and advocacy efforts for access to treatment; expanding public education and awareness of eating disorders; promoting access and providing referrals to quality treatment for those affected; and providing support for their loved ones. Since the inception of its Helpline in 1999, NEDA has referred more than 50,000 people to treatment and tallies more than 40 million hits annually on its Web site.


  1. YIKES!! This is really scary to me. Scary because of how young this girl is. Scary because her treatment seems focused on making her eat, instead of the underlying problem. I did not read the Part 1 of the series yet, so I will have to go do that, and see what they say about the genetics. I do believe that plays a part, just in general addictive behavior, but I think so much of it has to do with environmental issues. It's the old nurture vs. nature theory.

  2. This is interesting to me. I actally just got an order form from my therapist to order a tape on genetics and ED's. It's from a man who was at the Renfrew Conference this year. I'll let you know when what I think of it.
    This poor child has so many issues, obviously. I wonder if the underlying causes are addressed at the Omaha Center. I also wonder how much her Mom can do, as she is obviously still battling this herself. The part about force feeding the peach was heartbreaking. I can't imagine that was the right way to go, thought maybe was just said to explain the severity of her unwillingness to eat anything.
    So much still to be learned about this....


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