Mental disorder guide may adopt syndrome that provides psychosis alarm bell

Sharon Kirkey, Canwest News Service 

Mental disorder guide may adopt syndrome that provides psychosis alarm bell

Karen Dare outside her apartment in Ottawa, Ont., Apr. 20, 2010. Dare was diagnosed with schizophrenia when she was 23, and now speaks to high school students about her experience with psychosis and schizophrenia.

Christopher Pike / Canwest News Service


The day the visions and delusions took over her mind completely was the day Karen Dare decided she needed to die.

She was convinced she was going to be the conduit for the apocalypse, that an evil force was about to unleash itself onto the world through her body.

"I need to kill myself," she thought. "I can't be responsible for the destruction of humanity."

She doesn't remember screaming, but she must have, because suddenly paramedics were in her room shouting questions. She couldn't make sense of what they were saying. She couldn't speak or move.

It was her second psychotic episode, and the first time the doctors spoke the word, schizophrenia. She was 23, but ever since Grade 9, Dare began feeling different and disconnected from the world around her, as if everyone were "fake" or actors, and that nothing was real.

They were symptoms of pre-psychosis, a condition at the crux of a proposed new mental illness that is stirring a storm of controversy within the field of psychiatry.

The first draft of the newest edition of the massive tome used the world over to diagnose mental disorders is recommending the addition of a new diagnosis called "psychosis risk syndrome." The idea is to identify "soft" symptoms of psychosis in people at risk for schizophrenia and other psychotic disorders early, before they develop full-fledged delusions and hallucinations.

But critics fear that adding risk syndrome to the Diagnostic and Statistical Manual of Mental Disorders would lead to a huge preponderance of false positives and open the door to medicating vast numbers of people who don't need it. The worry is that children and teens who aren't frankly or floridly psychotic would be treated as if they were, and put on antipsychotics that can cause rapid and substantial weight gain - an average of 12 pounds in 12 weeks -_and elevated blood fats, increasing their risk for diabetes and cardiovascular disease in the long-term. Even in the most expert hands, most of those diagnosed with early symptoms of psychosis don't end up developing schizophrenia.

Proponents say the preferred treatment would be cognitive behavioural therapy and other non-drug treatments. But critics say that, practically speaking, with a label like "psychosis" risk syndrome there is every likelihood people would be prescribed antipsychotic medication.

According to the rationale for adding psychosis risk syndrome to the manual of mental illness, early signs and symptoms of schizophrenia are present years before a diagnosis is made.

With psychotic disorders, "you often get a story from parents who say, 'I had kind of a normal teenager and gradually the kid kind of withdrew . . . and they're talking in sentences that don't make sense all the time, and sometimes they'll just stop talking and look around as if they're listening to something that no one else can hear, and yesterday, my son asked me if I put poison in his food, and, doctor, this just isn't right. There's something going on here,'" says Dr. William Narrow, research director for the American Psychiatric Association task force that is in the midst of writing the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM.

"If it was only going on for the past month, this teenager wouldn't meet the criteria for schizophrenia, but clearly there's something going on, and this child would meet the criteria for the psychosis risk syndrome."

A world leader in the study of schizophrenia says making psychosis risk syndrome official enough for the DSM would mark a revolution in the treatment of the onset of psychosis in youth. "Up until now these young people are basically going crazy on their own," says Dr. Thomas McGlashan.

"And when it breaks, they don't know what's happening,"says McGlashan, a professor of psychiatry at the Yale School of Medicine. "They go out of control, the family doesn't know what's happening, the kid ends up being taken by force into an emergency room because they've become disorganized or paranoid, and that's their introduction to the treatment system. And it sets up a negative relationship with the treatment system that can last the rest of their life."

But other experts in the field say that the criteria being proposed are far too watered down, would cast too large a net and would falsely diagnose at least three children and teens for every one correctly identified.

"You're setting the bar so low, and making it so simple (to diagnose) that, while it's easy for tens of thousands of clinicians out in the field to use, the threshold to meet criteria for the psychosis risk syndrome is so low that you could create a lot of false positives," says Dr. Paul Roy, director of the Champlain District First Episode Psychosis Program in Ottawa, known also as On Track. Roy doesn't prescribe antipsychotics unless, and until, he sees bona fide psychosis.

"The risk is that they're put on medication, or they're told that they may be at risk for progressing to an illness like schizophrenia when in fact they're not. It's stigmatizing. It's terrifying. It's at least extremely upsetting. And you don't really have any substantial evidence that the majority of these individuals are going to progress. You just have a suggestion." Studies suggest that 20 to 35 per cent of people with early symptoms of psychosis actually convert to frank psychosis within two years.

Teens would meet the criteria if they experienced "attenuated," or low-grade, delusions, hallucinations or disorganized speech that occurred at least once a week for a month. But there can be many reasons for teens to behave strangely, Roy says.

"They could be depressed, they could be smoking pot, they could be just having a phase-of-life problem. It's very hard for clinicians who don't see thousands of these things, like a family doctor or even a psychiatrist in the community, to look at this and say, 'This is a schizophrenia prodrome.'"

"I'm not averse in principle to working toward defining a prodrome . . . but this proposed syndrome may be setting the bar too low."

But families of mentally ill children so sick they think they have telepathic powers, who think that if they take a train to another city they can escape the voices in their heads, often struggle to get help. One mother described how she took her teenage son to the doctor every few months with a new ailment. When he complained he was tired, he was checked for mononucleosis. When he complained he was having vision problems he was referred to an eye doctor. When he said his food tasted strange, he was tested for food allergies. "No one ever asked him any question that would lead us to believe he had a psychiatric disorder." When he finally started having full-blown psychosis, he told his parents one day: "Take me to the emergency room. There's something really wrong with me."

Karen Dare, of Ottawa, who speaks to high school students about her experience with psychosis and schizophrenia, says she was discharged from hospital after her first psychotic episode with no instructions or support for her parents on how to deal "with a freshly discharged psychiatric patient."

Dare always felt a little off, but as the disease took hold she was convinced that people were talking about her in code, that she was being watched, and that her ideas weren't coming from her, but that she was somehow being guided by another being. "I could feel myself losing control," she says. "But I couldn't stop it."

It's been five years since her last psychotic episode. "This is not going to happen again," Karen told herself then. She credits the treatment at On Track and alternative therapies in helping her better deal with the triggers that may produce symptoms, "so that this illness no longer becomes me."


