Hilary was diagnosed as bipolar at 16 by an ER doctor and later given antipsychotic drugs before being assessed by a psychiatrist. Now 22, she writes and illustrates children’s books.
Renee Jones Schneider, Star Tribune
In 2005-2006, Hilary was diagnosed with bipolar by an ER doctor, and then given antipsychotics before she was ever formally assessed by a psychiatrist. It took a year before she was weaned off the drugs and back to her old self. She posed for a picture at Ginko Coffee House in St. Paul Wednesday, August 10, 2011, in St. Paul, Minn.
Renee Jones Schneider, Star Tribune
State tries to rein in psychiatric drugs
- Article by: JEREMY OLSON
- Star Tribune
- September 1, 2011 - 5:08 PM
This wasn't the daughter the Minnesota mother had sent off to arts boarding school six months earlier. Her 16-year-old could no longer distinguish hot from cold, or tell if she was hungry. Her paintings, once full of imagination, had become lifeless and blotched.
Mostly, the teenager slept.
The mother suspected antipsychotic drugs. Her daughter had been taking them since an emergency-room doctor, treating her for sleeplessness, had suggested she was suffering from mania due to bipolar disorder.
"This is not how it should be," said the mother, whose first name is Nancy and who asked that her family name not be used in this story.
The downward spiral her daughter, Hilary, endured is a stark tale of an increasingly common dilemma: The high number of patients being diagnosed with psychiatric disorders and prescribed potent medications by primary care physicians, who often lack the time and expertise to get those decisions right.
Now the state is taking action. Starting this fall, in an attempt to reduce misdiagnosis and overmedication, it will require primary care doctors to call a psychiatric hot line before prescribing heavy doses of antipsychotics or other drugs to children on state-funded health plans.
Even though some primary care doctors admit they are in a poor position to diagnose and treat severe mental disorders, the Minnesota Council of Health Plans has found that they prescribe 80 percent of psychiatric drugs.
It's a problem born of a national shortage of psychiatrists, and it can lead children to ineffective or harmful treatments -- as Nancy believes was the case for her daughter.
Family doctors sometimes prescribe drugs in questionable cases because alternatives aren't available, waits for psychiatrists are months long, or because parents grow desperate as their children become bizarre or aggressive, said Dr. Brian Lynch, a Mayo Clinic pediatrician who advised the Minnesota Department of Human Services on forming the consult service.
"At some point," he said, "many providers don't know the direction to go other than to use medications."
Only one symptom
Hilary went to the emergency room in Long Prairie, Minn., on Labor Day weekend, 2005, after sleeping little in her first week at the Perpich Center for Arts Education in Golden Valley. While Nancy figured a sweltering dorm was the cause, she was worried.
That Sunday, a doctor diagnosed her with social anxiety and prescribed an antidepressant and antianxiety drug. Hilary returned on Monday because the drugs made her feel hyper, prompting her to sprint through the woods near her house to try to tire herself out.
This time, a different doctor, Deborah Rasmussen, suspected bipolar disorder and recommended that Hilary be evaluated at St. Cloud Hospital.
Nancy doubted the assessment, especially after receiving a list of bipolar symptoms.
"She has one symptom on this sheet!" she exclaimed.
Rasmussen, reached last week, could not recall Hilary's case, but said she likely wrote down bipolar for the St. Cloud doctors to consider -- not as a presumptive diagnosis.
Nevertheless, the bipolar label is influential. Records indicate Hilary immediately received Zyprexa, an antipsychotic, in St. Cloud -- and that a diagnostic evaluation didn't take place until later. By that time, Hilary had developed new symptoms, including paranoid fears that hospital workers were "testing" her by adjusting the shower temperature and giving her oversized scrubs, her mother said.
"The doctor [who admitted her in St. Cloud] didn't see her before prescribing this," she said. "Just took the word of the doctor in Long Prairie and wrote down 'bipolar' and away they sailed."
A spike in diagnoses
Bipolar diagnoses have increased sharply over the past two decades. The disorder generally was thought not to exist in children until the late 1990s, when Harvard University doctors theorized it was possible. Studies since then have found dramatic increases in the number of pediatric cases and in prescriptions of antipsychotic drugs.
Drug treatment is key in bipolar disorder, which is a biological brain disease. But drugs can be problematic for people whose mania or depression result from other causes. Antipsychotics can have serious side effects, including weight gain and even hallucinations.
Doctors mistakenly put children on these drugs because they don't have the time and resources to distinguish mental illnesses from behaviors that stem from poor parenting or traumatic life events, said Dr. Terence Cahill, a Blue Earth, Minn., physician who also helped create the consult service.
"Are we treating poor parenting skills with potent medication? I think, yeah, sometimes," he said.
Psychiatrists said they often untangle the diagnoses and prescriptions issued by primary care doctors. Sometimes, they are made in error or haste. Other times, the diagnoses are a ruse to meet insurance criteria and get patients admitted to hospitals.
In Hilary's case, doctors might have suspected bipolar disorder because of her move to school, a common trigger for mental disorders, and interpreted her sleeplessness as mania.
Ronald Solberg and Mark Holub, two psychiatrists who treated Hilary, said in e-mails that they did not recall her case. Records collected by Hilary's mother show that Solberg doubted bipolar but kept Hilary on antipsychotics because they helped her sleep.
A first attempt at weaning Hilary off Zyprexa came over two weeks in October 2005. Back home, she felt like her skin was crawling and she grew suspicious. Putting chickens they raised back in a coop, as they often did together, Hilary wasn't sure who Nancy was.
"If you're my mother," she said, "you'll know what my favorite color is."
Nancy knew it was black. Her artistic daughter was fascinated by the color because it was made of all other colors.
Hilary was satisfied by the answer but scared that she couldn't recognize her mother. Nancy was shocked and blamed the medications: "I didn't see it as a resurgence of symptoms, because we hadn't seen them before."
After Hilary tried to run away from home in darkness, her parents took her back to the hospital. Her doctors put her back on Zyprexa.
In some respects, Hilary got unusually timely care and access to hospitals and psychiatrists. Primary care doctors say they often are forced to make treatment decisions because their patients have to wait months to see specialists.
The shortage of psychiatrists is acute in Minnesota, where the per capita rate of these specialists is 33 percent lower than the national rate. The shortage may worsen, as the median age of Minnesota's psychiatrists is 50.8 years.
Solutions have been sparse. Doctors at an Allina clinic in Cambridge, Minn., hired a psychologist to help assess and treat young patients, but had to wait 12 years to find one.
"I have the luxury of an hour with a patient," said Mimi Sa, the clinic's child psychologist. "I really like to get an idea of what side effects would be intolerable and what wouldn't."
Creators of the state consult service hope it will reduce frustrations for doctors lacking such resources. Similar services are working in Washington and Massachusetts.
"There's a need for help, especially in terms of medication management," Lynch said. "I also think there can be help in making the appropriate diagnosis."
Pleading with doctors
Doctors were at odds over whether Hilary needed antipsychotics, and whether she suffered from anxiety, or a reactive psychotic episode brought on by stress. Solberg offered a new theory: conversion disorder. Far from bipolar, the condition results from psychological stress causing physical problems. Records show that the doctor recommended halting drug therapy in November 2005, so Hilary could "bottom out" and convince herself she was OK.
An abrupt halt to the antipsychotics appeared to cause withdrawal symptoms and insomnia. Sleeping pills made matters worse. Hilary became catatonic for hours. As her parents drove her back to St. Cloud, she silently waved her hands like a conductor.
In December 2005, Hilary was transferred to a long-term treatment center in Brainerd, where Holub started her on Abilify, another antipsychotic. She emerged from that hospital in March 2006 still troubled; no longer paranoid but struggling to think clearly or stay awake or show any interest in art.
Nancy pleaded with a new psychiatrist to wean Hilary off Abilify -- slowly this time to avoid withdrawal symptoms.
"The only way we're going to figure out who we have left in this girl is if we discontinue the medication, very slowly," she recalls telling the doctor.
Bit by bit, the symptoms receded as the dosage was reduced. Hilary's spark returned; in the lingering winter she went outside to draw a chalk rendition of a Michelangelo painting on the sidewalk. By summer, she was symptom-free. She returned to the arts school and graduated in 2007.
Now 22, Hilary can talk matter-of-factly about that nightmare year. She is writing and illustrating children's books and working for a company that refurbishes theatrical costumes.
It's impossible to know whether the drugs were at fault, or helped treat a mysterious condition. The smoking gun remains to Nancy that her daughter's worst symptoms emerged after she was put on antipsychotics.
"I just couldn't accept that for her," she said, "because it didn't fit the picture."
Jeremy Olson • 612-673-7744
© 2017 Star Tribune