One teen's progression into serious mental illness

Years before Samantha heard the dread word schizophrenia, there was a parade of other diagnoses.

At age 12, she had an eating disorder: A classmate called her fat, and she stopped eating. She also started cutting herself.

In ninth grade, the Bucks County teen bailed out of a group trip to a concert. She couldn't stand the thought of being around so many people. "They're all going to look at me," she thought. Social anxiety, a therapist said.

A couple of years later, she thought FBI agents were following her. She felt them, but couldn't see them. Delusional disorder.

Just before she turned 17, she started seeing the agents and hearing voices: "Brandon" tells her to kill people. "Alice" calls her fat and worthless. A nameless old lady just says, "They're coming for you."

That was in January. Her doctor now says she has schizoaffective disorder, a combination of mood problems and schizophrenia. Schizophrenia alone is a mental illness so fearsome that the doctor said some parents would rather learn their child had cancer.

Samantha's mother, though, has come to see her as a symbol of hope.

"It's amazing to me," her mother said, "the grace and the dignity she shows every single day in dealing with it."

The mother, who is a teacher, and daughter, now a high school senior who gets As and Bs, are certain that Samantha's classmates would not accept her mental illness. They agreed to talk about the girl's experiences as long as her full name was not used. Samantha is her middle name.

She has long blond hair and a pretty face that she aims at the floor much of the time. She has to force herself to make eye contact, an act that feels "intimate" and threatening to her.

After years of treatment near home, she started seeing therapists in June at Hospital of the University of Pennsylvania. A team of researchers there, led by psychiatrist Raquel Gur, is trying to figure out how to identify and begin earlier treating young people with schizophrenia (see accompanying story).

Schizophrenia is often diagnosed in late adolescence or early adulthood, but patients usually are sick for two or three years before parents get worried enough to take them to a doctor, Gur said. The hope is that earlier treatment will help patients have more normal lives.

While there are themes in patient histories - anxiety and depression are among them - Gur said each patient was different. Most girls who worry about their weight or begin cutting themselves do not develop schizophrenia. Doctors have not yet figured out who will or won't become more seriously ill.

The key message for parents, Gur said, is to pay attention, especially when psychological problems begin to affect school performance or friendships. Don't ignore symptoms.

Samantha's mother certainly sought help. The cutting upset her. Then she noticed that her once-social daughter had cut herself off from her friends. A warm, outgoing woman herself, the mother found her daughter's emotional coldness mysterious.

Usually open, Samantha hid her delusions for four months. "I was so scared to tell anyone because I'm going to be put in an institution for the rest of my life," she said. "I didn't know what it was. I just knew it wasn't right."

She finally told her therapist and her mother. They've been on a journey ever since to find medications and other treatments that work. There have been several hospitalizations and two suicide attempts.

The current regimen helps quiet the voices, Samantha said, but she still hallucinates. She said matter-of-factly that she saw a dozen small spiders crawling on the coffee table as she talked to a reporter.

She doesn't feel up to extracurricular activities, so last summer, she threw herself into research studies at Penn. She had four MRIs and EEGs. The researchers measured her sense of smell, as well as her ability remember faces and identify emotions.

She's on new medications and does weekly cognitive behavior therapy. Her therapist has taught her relaxation techniques, including yoga, coloring, reading, and writing. She uses upbeat pop music to drown out the voices. She and her therapist write down the good things that happen to her each week, and he tells her to read the list every day. She practices making eye contact.

She's making friends again and isn't afraid to raise her hand in class. Her mother thinks she has become more empathetic and emotionally open.

Both think that Samantha may be ready to go to a local college next year.

Samantha no longer thinks she'll spend her life in a hospital. She thinks she'll finish school and have a job.

215-854-4944

@StaceyABurling

www.inquirer.com/health_science