Stanford program takes aim at eating disorders

Kristin began starving herself in eighth grade.

“I had low self-esteem,” she said. “I was by no means fat, but my body developed before my other girlfriends’. I got it in my head that if I lost weight I’d like myself more and other people would like me more; I’d be more popular.”

An avid reader of fashion and fitness magazines, she was dismayed by the differences between her body and those of the models she idolized. So first she began to choose health food over junk food, then she started reducing her overall intake, counting calories and weighing herself daily.

“Before I knew it, it became an obsession,” the South Bay resident said. “I was terrified of gaining weight; I measured everything. The thought of not having that control was too scary.”

In four months, she lost 15 pounds. After eight months, she had lost 40.

“It was beyond my control; my life was governed by this fear. It started as a control thing, and by the end I had no control. It was either the hospital or I was going to die.”

The ‘tween with the athletic body became drastically underweight and, at age 12, she was hospitalized in the Stanford ICU with a dangerously low heart rate. Kristin was diagnosed with anorexia nervosa and placed in the Comprehensive Eating Disorders Program at Lucile Packard Children’s Hospital at Stanford.

Now 23, Kristin recently celebrated the 10-year anniversary of her hospitalization. In recovery, with health restored, she’s one of the thousands of former patients who’ve been treated for an eating disorder or participated in research studies at Stanford.

Eating disorders are serious mental illnesses involving abnormal, unhealthy eating behaviors, including anorexia nervosa (self-starvation), bulimia nervosa (binging and purging) and other, non-specified conditions. Stanford’s program was started in the late 1970s and involves staff from the Lucile Packard Children’s Hospital’s Center for Adolescent Health and the Stanford University School of Medicine divisions of Adolescent Medicine and Child Psychiatry.

Though eating disorders affect relatively few people, the impact on those suffering from them is severe. Anorexia has the highest mortality rate of any mental illness.

Treatment for eating disorders has changed since the ’70s, with a shift toward family-based rather than individual therapy, care that is holistic and a majority of patients being treated as outpatients. Research, too, is evolving, with current Stanford researchers now exploring the tie between eating disorders and larger issues of cognition and thinking patterns.

Because eating disorders impact both mental and physical health, Stanford’s joint approach is the key to its philosophy, Dr. Cynthia Kapphahn, medical director for the program, said.

Not only do adolescent patients work with therapists and physicians, but also nurses, nutritionists and others in a team-based, holistic approach to care.

“There’s even a school teacher to help patients stay caught up. It’s one of the few places in the country like that,” she said.

The program offers a 15-bed inpatient unit (currently housed in rented space at Mountain View’s El Camino Hospital) and an ongoing outpatient clinic, with offices in Palo Alto and Mountain View. Kapphahn said she hopes the inpatient clinic, which outgrew its original space, can eventually move back to Lucile Packard when the hospital undergoes its recently approved expansion.

Dr. James Lock, the psychiatric director for the program, said that on average 10 of the inpatient beds are filled at any given time, and that between 300 and 400 patients go through the outpatient clinic each year. New-patient evaluations are held three times a week, and around half of the patients come for treatment. About 10 times more girls are diagnosed with eating disorders than boys, Lock said, but that may partially be attributed to less awareness regarding eating disorders in the male population.

“The stereotype is the rich, white girl, but we see tons of boys, and lots of minorities,” Kapphahn said. She said eating disorders seem to be increasingly common in Latino boys, for example, who’ve been overweight, then lose too much.

“We see eating disorders across all groups,” she said. “But the unconventional people tend to get missed.”

A misconception is that eating disorders in adolescents are the fault of controlling, pressuring parents or the fault of popular culture for emphasizing svelte body shapes and unrealistic beauty standards, Lock said.

“Mothers get blamed because we live in a culture in which lots of women worry about their weight, but in fact anorexia is very rare,” Lock said.

“Everyone is exposed to the same media,” he said, while relatively few develop an eating disorder. While media can be a trigger for unhealthy eating habits, it seems a person needs to have certain genetic and cognitive propensities to develop anorexia.

Kristin said she had problems with anxiety even prior to the onset of her eating disorder.

“I grew up experiencing a lot of anxiety, but it sort of went under the radar,” she said. “I come from a family of ‘Type A’ personalities.”

Lock said there may be similarities between those with eating disorders and those with other mental illnesses, such as anxiety and obsessive-compulsive disorders. Looking at the behaviors and personality of patients from before they were diagnosed with anorexia, as in Kristin’s case, Lock said they “tend to be anxious, driven, perfectionistic people” — the very type who also tend to be quite successful in school and at athletics.

Eating-disorder patients “very commonly have all those traits. If you want to get into Stanford you better have some of those qualities,” Lock said. “I tell parents, ‘If your child does not get straight As, they are very unlikely to have anorexia.'”

Kristin described herself as a regimented child who would “stress about anything,” with even small mistakes such as missing the bus feeling like “the end of the world.

“I would make lists of things to do, and things had to be done a certain way,” she added.

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Might Palo Alto, with its culture of high academic standards and population of driven Silicon Valley go-getters see a higher rate of adolescents with eating disorders than other areas?

“It’s a high-risk population,” Kapphahn acknowledged. Lock added: “We don’t have good data, but there is an association; the vulnerability is probably higher,” since there are both genetic and environmental triggers. Plus, to be able to afford to raise a family in the area, local parents are often high-achieving, extra-driven personalities themselves. And family does play a role.

“Genetic data suggests that inheritability is very high,” Lock said. But, he emphasized, as with media exposure, clearly not all straight-A students or teenagers unhappy with their weight develop an eating disorder.

“Particular people are more susceptible, ones with super-high expectations that spill into eating certain ways,” Kapphahn said, of what happens when such a person turns all their drive and focus onto controlling their eating habits. “There’s a disconnect between high expectations and low self-esteem,” she said.

It’s normal for adolescents to develop body-image concerns as they hit puberty, with girls generally experiencing more weight gain than boys, Lock said, but those who develop eating disorders take such concerns, along with their perfectionistic tendencies, to an extreme.

Kristin’s perfectionism mixed with her low self-esteem created a “perfect combo for an eating disorder,” she said.

There also seems to be a link between the sex hormones that control puberty, particularly estrogen, on brain development and risk for eating disorders. And by far the most cases of eating disorders are diagnosed by age 18, with onsets becoming rare after age 25, Lock said. Once the disease takes hold, “it’s truly shocking how intractable it is, how absolutely compelling,” he said.

“Even when I was at my lowest weight, I never thought I could have anorexia. I couldn’t be thin enough. It was total denial. I was miserable, weak, felt awful, depressed,” Kristin recalled.

Anorexia’s mortality rate is about five to nine deaths per 100,000 sufferers, Lock said. Half of anorexia-related deaths are from cardiac arrests due to weakened, starved hearts, while the other half are suicides. In those cases, the patient “loses all perspective. They have nothing left, no energy for relationships. You just begin to feel like you don’t want to live,” Lock said. And with each passing year of having the disease, the risk of death goes up by 1 percent.

“People don’t think they have a problem; they don’t see it. They say, ‘No, I’m fine,’ even when they’re on a heart monitor in the hospital because their heart rate dropped too low and they’re a skeleton,” he said.

For Kristin, “restricting was all I cared about. Counting calories and exercise was all I lived for. I thought about it 90 percent of the time,” she said.

Bulimia is three to four times more common than anorexia, but comes with its own dangers and long-term health risks.

“It’s equally worrying,” Lock said of bulimia, “but with quite a different set of concerns,” with bulimics struggling more often with appearance-related weight-loss attempts rather than the control issues common in anorexics. Patients with bulimia more often recognize they have a problem and want to stop, but they find themselves trapped in the binge-purge pattern, he said.

“One of the sad things is, eating disorders are still stigmatized,” Lock said. “Families are blamed; patients are blamed; people think they’re influenced by fashion or the media as opposed to having a psychological disorder.”

Kapphahn concurred.

“People feel guilty, like it’s seen as a volitional thing. If you had cancer you wouldn’t be blaming yourself for having cancer. It really is a disease that needs to be treated,” she said.

Though very dangerous, eating disorders are also highly treatable. Lock said in his experience it takes patients between nine months to a year to recover, with 80 to 90 percent able to say they no longer have the disorder.

In Kristin’s case, her parents became concerned by her weight loss but for a while were at a loss as to how to deal with it. She saw a physician and a psychologist but kept losing weight.

“It was the elephant in the room, no one would talk to me about it,” she said. Eventually, she recalled, her mother came up to her room to break the news that she’d need to go to the hospital.

“They want to take you by ambulance, but I’d like to take you myself,” she remembered her mom saying. “I had to face the music.”

Most of the patients who come to Stanford are, like Kristin, fairly local, from the Bay Area or Northern California, although some are referred from across the nation and even the world, Lock said. Traditionally, most eating-disorder patients were treated as inpatients, with months of hospitalization, “but in the last decade by far the largest number are treated as outpatients,” Lock said. “It’s a real movement forward.”

When patients first arrive, medical stabilization is the first priority. Even outpatients are often hospitalized for the first nine to 12 days to make sure they’re physically stable, Lock said.

Kapphahn and her medical team monitor patients’ physical health, helping them recover from malnutrition and a host of side effects that can include low blood pressure, low heart rate or a racing pulse, seizures and more. Nutritionists advise on what meals are appropriate, while for inpatients nurses make sure patients are getting the nutrients they need.

“It’s really hard for patients; they feel overwhelmed and fearful of eating. The nurses are supportive but firm,” Kapphahn said, adding that rarely do Stanford nurses have to resort to the unpleasant nasal-gastric force feeding that sometimes characterized eating-disorder treatment in the past.

Kristin, thinking she’d only be in the hospital for a few days and packing accordingly, ended up staying there for a month and a half.

For a long time she wasn’t even well enough to take solid food and was bedridden. Eventually she was able to use a modified wheelchair, then progress to walking and going to group therapy.

In the hospital, “I went in and out of acceptance. I was scared I was going to die. It was a really lonely time, although my family visited every day,” she said. Finally, she gained 10 pounds and was able to be released.

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While caring for the physical wellness of patients is crucial, Kapphahn said it’s the psychological treatment that is essential for long-term success in treatment.

“Truly, recovery comes through the mental health side,” she said.

For more than two decades, Stanford has been involved in eating-disorders treatment, with Lock as a proponent of what he called evidence-based, family-based therapy for anorexia nervosa, in which the parents and siblings of the patient undergo counseling with him or her and take an active role in the recovery process, including learning about nutrition, making sure the patient eats properly and trying to understand the complexities of the illnesses. Family-based therapy is counter to how anorexia used to be treated, Lock said.

In older days, “treatment left the family completely out,” he said. The belief was that anorexics have parents who are over-controlling and that the disorder “is about defiance and autonomy,” he said, so therapy focused solely on the patient.

“It seems completely crazy to me now,” Lock said, adding that patients would do well at the hospital, but then continue losing weight once they were back home. Having family members involved in the treatment process is key, as the kids suffering from anorexia are initially too disturbed to handle the situation on their own, he said.

“Parents need help helping them. They need to know how to make sure the kid eats every meal, no cheating, no exercise on the side, and make sure their child gets the message, so it disrupts the behavior and it becomes less compelling,” he said. Once well enough to return to school, “they need to be able to manage it in the peer environment, and the parents need to be able to pick up the pieces when it falls apart,” he said.

Family-based therapy is now recognized as the treatment of choice, Lock said. According to a joint study by Stanford and the University of Chicago, published in the October issue of Archives of General Psychiatry, family-based therapy was found to be twice as effective as individual psychotherapy in producing full remission in anorexic teens.

Kapphahn said the medical side of the program was slower to embrace family-based treatments than the psychiatric side, but over the past eight years she’s seen a paradigm shift.

“The hospital was stuck in an old-fashioned model, really contrary to the work Dr. Lock was doing. Now … we really want the families to be there, our program has shifted,” she said.

In Kristin’s case, her parents tried the family therapy, but then dropped out, finding it too difficult.

“My family did everything they could to support me, but they never really tried to understand,” she said. “But I would still recommend family therapy. I think it’s really important; usually there is something there.”

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Cognitive remediation therapy (CRT), which focuses on patients’ thinking patterns and styles rather on specific eating behaviors, is also now used in treating eating-disorder patients. The techniques of CRT are being used to study how the cognitive processes of eating-disorder patients may differ from healthy individuals.

CRT “is something patients tend to really like because it doesn’t ask any questions about food or weight,” Stanford School of Medicine Research Assistant Danielle Colborn said of the treatment, which has also been used in cases of head injury and schizophrenia. Tasks involving memory games, pattern matching and problem-solving quizzes are used to help patients improve brain flexibility.

“It still helps them work toward recovery but without those trigger issues,” Colborn said.

“It’s very new — some as been done with adult women (with eating disorders) but very little has been done with adolescents. We’re starting to change our way of looking at these illnesses, taking into account their cognitive functioning. Before our way of looking at them was specifically ideas about food and eating, but in addition we should look at addressing their thinking processes themselves,” she said.

Colborn and Nandini Datta are two of several Stanford researchers currently conducting studies on the relationship between thinking processes and eating disorders. Though their studies are separate, both involve analyzing how a person’s thinking may correlate to psychological illnesses such as anorexia.

Datta and her team are currently recruiting subjects for her study, titled, “Familial Aggregation Study of Anorexia and Cognition,” specifically in females ages 14-19 with anorexia nervosa, and their family members. The study will focus on pairs of sisters close in age, in which one sister has anorexia and the other does not. She’s also recruiting females from that age group with no history of anorexia to serve as controls in the study.

“We give them a neuropsychiatric assessment that shows their thinking processes with various tests,” including IQ tests and games that test spatial and visual intelligence, Datta said. One such test is the Wisconsin Card Sorting Test (WCST), during which participants have to match cards using shape, color or number, with the criteria for matching continually changing. This measures what is called “set-shifting ability” — flexibility in thinking. Other tests include copying an image from memory, matching a simple image with a more complicated one, and other computer-game-like tasks. The tests focus on central coherence, which Datta described as “the ability to see the big picture rather than just details.”

Anorexics, she said, may be more detail-oriented, making them more successful at some of the tasks and showing cognitive deficiencies in some areas, such as adaptability. Some participants also undergo functional MRI scans, which provide images of their brains so that the potential effect of an eating disorder on brain anatomy can be seen.

“There are not many studies like this done on anorexia yet,” she said, and the hope is that finding predictable cognitive correlations could help identify people who may be at higher risk for developing eating disorders.

“We’re taking a biological view. It’s pretty cool and very new,” she said. “We’re hoping if we can understand these correlates then we can explain it on a biological level.”

Datta’s study is in the early stages, with two families participating so far. The goal is to recruit 40 subjects with anorexia and 40 controls over the course of the five-year study.

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No matter what biological and neurological implications researchers such as Datta and Colborn may discover, for those struggling with eating disorders, “It’s really important to maintain therapy and support,” Kristin said.

Kristin, who continued seeing a therapist on and off in the years since her release from the hospital, went on to study psychology in college and is now a graduate student, working toward her master’s degree in counseling.

“It’s been a slow journey, and I have this awareness when it comes to my health,” she said.

Her weight fluctuated throughout high school and college, and she continued to struggle with unhealthy habits, including a binging-and-purging phase. She said she’s now developed an understanding of her tendencies toward unhealthy thinking patterns.

“I’m definitely aware of my weight, and of my figure, but I don’t count calories, I don’t weigh myself and I don’t stress about food. Food is a source of nourishment. I’m absolutely able to enjoy food,” she said.

She’s found support from the Eating Disorder Resource Center, based in Campbell. Janice Bremis, who herself went through anorexia treatment at Stanford in the 1980s and ’90s, founded the center in 2006.

“I was familiar with the research Stanford was doing. They had all this knowledge but the community didn’t,” Bremis said.

The center offers information on treatments, therapists, insurance help, support groups and more. Kristin has been involved as a volunteer and said she’d like to eventually work as a therapist specializing in eating disorders, anxiety disorders and depression, as well as continuing to teach group fitness classes and advocating for eating-disorder education and prevention.

“Ever since going through it I have wanted to work with people with eating disorders,” she said. “Educating other people about eating disorders and health really heals me.”

More information on Stanford’s research studies is available at edresearch.stanford.edu. More information on the Eating Disorders Resource Center is available at www.edrcsv.org. More information on the Comprehensive Eating Disorders Program at Lucile Packard Children’s Hospital is available at www.lpch.org.