The final straw for Carolyn Alves came last fall when she tried to help her daughter Cecelia dress for kindergarten.
The volatile 6-year-old had worked herself into a frenzy as she tried on outfit after outfit, rejecting each as unacceptable. The tantrum at full bore, she scooped up a pile of clothes and hurled them at the front door of the family’s Spanish-style bungalow in Glendale.
The clock ticked past the school’s 8 a.m. bell. Alves pulled her wailing child into her arms and held her on the couch. After several minutes, Cecelia stopped, took a breath and announced that she was ready to go to school.
“It was like watching someone who was having a mental breakdown,” Alves said. Then “a switch went off and she went back to being normal.”
Alves and her husband, Marcos, have consulted five doctors and therapists in the last four years. Cecelia has been diagnosed with a smorgasbord of psychiatric disorders — including the controversial diagnosis of child bipolar disorder — in addition to being called a normal kid.
Experts in pediatric mental health readily acknowledge that their failure to pinpoint the problem with children like Cecelia makes a difficult situation worse. And some of them are pressing for an unconventional solution: a new diagnostic category called disruptive mood dysregulation disorder, or DMDD.
Creating a diagnosis is considered a radical step in mental health circles, and the proposal has sparked much debate. The controversy underscores the fact that therapists simply don’t know what to make of the estimated 3% of children in the U.S. who suffer from severe irritability and emotional outbursts.
“Everyone wishes we could have a genetic test or a blood test” to determine which disorder a child has, said Erik Parens, senior research scholar at the Hastings Center, a bioethics think tank in Garrison, N.Y. “Unfortunately, nature doesn’t work the way we wish.”
As a result, parents may be told their children have conduct disorder, oppositional defiant disorder, attention deficit hyperactive disorder, depression or bipolar disorder — if they get a diagnosis at all.
Adding disruptive mood dysregulation disorder to the list of ailments doctors may consider would reduce the number of children misdiagnosed with bipolar disorder and treated with powerful psychiatric medications, proponents say. And, they add, improving treatment for children who have problems with mood and temper would reduce the number of children at risk of falling through the cracks in school and society.
But critics counter there is no scientific evidence to warrant recognition of a new mental disorder.
As doctors quarrel, parents like Alves struggle with the lack of medical options.
“I feel in limbo right now,” Alves said one afternoon, cuddling her painfully shy daughter. “Having a diagnosis would help me know what direction to take.”
Psychiatrists sharpened their interest in child mood problems several years ago in response to criticism over the number of children diagnosed with bipolar disorder — a debilitating condition in which periods of depression alternate with euphoria or elevated moods. It is considered incurable, although symptoms may be treated with drugs that carry serious side effects.
The idea that bipolar illness can begin in childhood caught hold in the last decade. The number of outpatient visits for children diagnosed with bipolar disorder mushroomed from fewer than 200,000 a year in 1995 to 800,000 in 2003, according to a 2007 study in Archives of General Psychiatry.
The study reinforced the notion that childhood bipolar disorder had become a fad diagnosis.
“The diagnosis means exposure to pretty potent medications,” said Dr. Jan Fawcett, a psychiatrist at the University of New Mexico School of Medicine in Albuquerque. “And, if the diagnosis holds, it means lifetime exposure to these medications.”
Such children often receive drugs like lithium or Depakote, which can cause severe weight gain, sedation and involuntary muscle contractions. They aren’t prescribed antidepressants or stimulants, which could worsen the condition in children who are truly bipolar. If the diagnosis is incorrect, however, children are deprived of drugs that could alleviate their anxiety or depression.
“We had to do something about it,” said Dr. David Shaffer, a child psychiatrist at Columbia University in New York and member of an American Psychiatric Assn. work group that proposed adding disruptive mood dysregulation disorder to the Diagnostic and Statistical Manual of Mental Disorders, the book that forms the bedrock of psychiatry. That would allow doctors to reclassify a significant portion of children who are considered bipolar, he said.
According to the definition under consideration, DMDD would be characterized by severe, recurrent temper outbursts in response to common stressors that are not developmentally appropriate and are out of proportion to the situation. Between tantrums, the child’s mood is nearly always negative, irritable, angry or sad. Such children are not like 3-year-olds who have fits if they don’t get cookies before dinner.
Symptoms would be apparent not just to parents but to teachers and others, and they would be present for at least 12 months before a diagnosis was made in a child under 10. It’s unclear how the condition would be treated, although proponents of the diagnosis say they are trying to reduce the use of antipsychotic medications.
But some of the symptoms can also be found in children with bipolar disorder or other conditions, said Dr. David A. Axelson, who argued against the proposed diagnosis this year in the Journal of Clinical Psychiatry. He and other experts say there is insufficient evidence that a distinct disorder exists.
“The scientific backing for it is quite lacking,” he said. “It doesn’t mean this shouldn’t be a diagnosis in the future, but we need solid scientific studies.”
David Miklowitz, a professor of psychology at UCLA, said he feared that many doctors who were reluctant to label children as having bipolar illness or conduct disorder would adopt DMDD as a default diagnosis.
“I think they are actually solving one problem but creating another,” he said. “The risk, with a diagnosis like this, is that clinicians who are strapped for time will slap on this diagnosis and say, ‘I’ve got it figured out.’ ”
The debate has been polarizing and uncharacteristically bitter for the mental health community. In his recent paper, Axelson and his colleagues charged that the proposal was “a step backward for the progression of psychiatry as a rational scientific discipline.”
And a past editor of the Diagnostic and Statistical Manual of Mental Disorders, Dr. Allen Frances, has written several critiques of the proposal, including one last summer that accused the scientific review group that endorsed DMDD of running a “sham review process.”
“New diagnoses are as potentially dangerous as new drugs, and we need a much tighter regulatory mechanism to ensure that they are both necessary and safe,” Frances said in an interview.
Fawcett acknowledged that more scientific evidence was typically needed to justify a move like this.
“Creating a new disorder should require much more evidence than we have,” he said. “But, on the other hand, there is a much bigger problem here.”
Alves doesn’t care what doctors decide to call her daughter’s condition, but she wants them to come up with a firm diagnosis. She wants strategic help for the child who, at 9 months, was having long bouts of screaming and uncontrollable crying and who, at age 3, would bang her head against the floor if something upset her.
Alves remembers the sunny day in June when the family attended Cecelia’s kindergarten performance at school. Cecelia didn’t want to go on stage and erupted in a 20-minute meltdown before reluctantly joining her classmates.
“It’s more apparent all the time that this is not just a tantrum,” Alves said.