Missing the signs in a boy's eating disorder

Tara-Leigh Tarantola and son Zachary Haines , whose anorexia went undiagnosed for months. RON TARVER / Staff Photographer
Tara-Leigh Tarantola and son Zachary Haines , whose anorexia went undiagnosed for months. RON TARVER / Staff Photographer
Posted: January 13, 2014

Around November 2012, Zachary Haines began complaining that he was constantly cold, especially after meals. In school, he pulled on sweatshirts after lunch to tough out his shivering, icy-fingered misery.

At that point, his mother didn't know that feeling cold is a classic sign of anorexia nervosa, a psychiatric illness marked by self-starvation.

But common sense told Tara-Leigh Tarantola that her son was eating too little and exercising too much, even though he was a healthy-looking, high-achieving, popular high school senior. She explained her concerns to each doctor and nutritionist - seven in all - over the next five months.

"My son was sent for thyroid ultrasounds, blood tests, and countless other things," said Tarantola, of Douglassville, near Pottstown. "I begged for help. The problem was that my son had been obese at 230 pounds. He lost 100 pounds, so everyone clapped and cheered."

A smorgasbord of biases, misconceptions, and stereotypes kept Haines from being diagnosed until he was so dangerously malnourished he had to be hospitalized. He spent three weeks in an intensive "refeeding" program at Children's Hospital of Philadelphia - where doctors unfamiliar with eating disorders had previously misread the signs.

"I do wish Zachary was diagnosed earlier," said Rebecka Peebles, co-director of the Children's Eating Disorders Assessment and Treatment Program. "What is sad is that his story is not uncommon."

That's why Haines and his mother wanted to share it publicly.

"We need the medical community, teachers, and even personal trainers to know the signs, know the stories, and be able to help these boys," Tarantola said. "I find it no different than assessing teenagers who may be addicted to drugs, cutting to hurt themselves, or who may be suicidal. Actually, this should be easier to spot. The medical facts are there along with the behaviors."

Obsessive behavior

Haines was a chubby kid. No one cared about his weight, least of all Haines himself.

"We come from a family of big Italian men and women," he said. "I was the little meatball."

His attitude changed in May 2011, after he turned 16. The trigger was a physical exam for his driver's permit application. "I was shocked at the number on the scale," he said.

At 5-foot-7, his 230 pounds planted him firmly in the obese range, with a body mass index - a height-weight ratio - of 36. The BMI chart, used as an indicator of weight-related health risks, says "normal" is 19 to 24.

Without telling anyone, Haines vowed to use the summer to shape up. He began running every day, on top of playing basketball and baseball and working part-time. He cut out junk food and sugary drinks, and ate low-fat meals.

"I do everything 110 percent," said the straight-A student.

His mother - a petite woman who was heavy as a child - his older brother, and his stepfather were the first to notice and applaud his shrinking waistline.

But the real thrill was buying new clothes and beginning his junior year 45 pounds lighter. He even wrote an article about his self-transformation that the Reading Eagle published as its weekly "fitness profile."

In hindsight, Haines and his mother agree his behavior became obsessive after he got the Christmas gift he asked for - a gym membership. He worked out daily for three hours, while consuming barely 1,400 calories.

"When she started showing concern, I said, 'Oh, you're crazy,' " Haines said. "But I'd constantly want to lose more weight. It was so easy for me. Even when I was at my worst point, I'd think, 'Oh, I could lose a little more.' "

A defining aspect of anorexia is a distorted self-perception, said psychologist Michael Lowe, a Drexel University eating disorders researcher.

"If a young man says, 'I'm thinner and fit, and I feel better about myself,' that's realistic," Lowe said. "If he says, 'I know I'm thinner but I'm still fat,' then that's a disturbance."

Changes in brain chemistry reinforce the irrational thinking, said Children's psychiatrist Richard Weyler, who is now seeing Haines weekly.

"Paradoxically, there's an addictive quality to starvation," Weyler said. "It creates a sense of euphoria."

Many missed signs

Anorexia is rare, afflicting an estimated eight people out of 100,000 per year.

It's not clear how many of them are male, said Tom Wooldridge, a California psychiatrist affiliated with the National Association for Males with Eating Disorders.

"Ten years ago, researchers were saying 10 percent. Most recently, they're saying 20 percent. Is it being caught more or happening more? I don't know. But I think we've dramatically underestimated the number of men who struggle with body weight and shape."

Peebles, at Children's, said, "The classic bias is that eating disorders only happen in thin, white, perfectionist females. Even the best physicians can have that bias."

Besides not fitting that stereotype, Haines was never technically "too thin," even at 130 pounds, based on the BMI chart and diagnostic criteria for anorexia.

Experts agree the chart is notoriously misleading for athletic males, because it doesn't consider the proportion of muscle to fat. What's more, a sharp drop in weight may be as worrisome as being underweight.

Nonetheless, when Haines went to his family physician in November 2012 to figure out why he was always cold, she was not fazed that he had lost almost half the weight he carried when she did his driver's permit physical.

"She said it was great," Tarantola recalled. "She said most kids were overweight."

Had the doctor asked Haines to take off his shirt, she would have seen his emaciation.

The loss of fat tissue, the body's natural insulation, is why anorexics feel cold and often have low body temperatures. At mealtime, when the blood rushes to the gut for digestion, they may get even colder.

"I was never examined with my shirt off by anyone," Haines said.

He went on to see a Pottstown endocrinologist, a Devon nutritionist, and four doctors at Children's - an endocrinologist, a gastroenterologist, and two liver specialists. Before each visit, Tarantola, an executive assistant at a pharmaceutical company, faxed a letter summarizing her son's medical history and her fears that he was becoming anorexic.

At each visit, the doctors found abnormalities. Haines had elevated liver enzymes, an underactive thyroid, low testosterone, low blood pressure, a low heart rate, abdominal pain, fatigue.

But anorexia wasn't on their radar. The doctors looked for the usual medical suspects, such as celiac disease or a pituitary tumor. When those were ruled out, they found other logical explanations. Heart rate of only 40 beats per minute? Common in athletes. Abdominal pain? Try Prilosec, a heartburn drug.

The turning point came in March 2013. The liver doctors referred Tarantola to Mimi Girten, a registered dietitian in King of Prussia. They knew that Girten specialized in eating disorders, although they didn't tell Tarantola that.

"I really need you to understand the state Zachary is in before you see him in your office," Tarantola faxed Girten. "I have taken him to countless doctors who I feel have not taken me seriously."

The next day, Girten examined Haines and immediately arranged for his admission to Children's. (She declined to be interviewed.)

"She said, 'Your vital signs are so low, we can't believe you're walking around,' " Haines recalled.

Ongoing recovery

Now a freshman at Temple University, Haines, 19, has weekly weigh-ins at Children's to try to keep his weight around 170.

With the help of Weyler, the psychiatrist, and his family, Haines relinquished his dream of going to a distant college and majoring in athletic training. Instead, he is studying advertising, building on his knack for drawing and design.

He seems upbeat, self-aware, and candid about his ongoing recovery.

"The most anxiety-inducing part for me is trying on my clothes," he said. "If I go up a size, I think I'm going to be 230 pounds again. If I eat one bad thing, I throw caution to the ground and can't stop eating. It's all-or-nothing thinking. I'm working on that. The doctors say I have elements of an obsessive-compulsive personality disorder."

As for his mother, her anxiety is easing - except when she thinks of families who may not be so fortunate.

"Zachary had the best-case scenario when it comes to a family in this situation," she said. "We had a close relationship with open communication. He had great friends and loved life. We had private health insurance and access to the best physicians. Imagine if any of those factors were different. He might not be here today."


mmccullough@phillynews.com

215-854-2720

@repopter

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