Healthy Choices

Jordana Steinberg’s story draws families’ attention to new childhood mood disorder

Rene Clark, 54, a mother of three and a self-described nurturer, juggles two jobs. She wouldn’t have it any other way. As a massage therapist, she gets to lay healing hands on hurting clients. As a consultant to seniors downsizing, Clark finds opportunities to ease anxieties and steady shaky emotions.

She’d love to gratify her urge to nurture at home, too, by working with her troubled, explosive teenage daughter, Kim.

But the 17-year-old gives her mother little room to help. Clark worries that interacting with her daughter would only trigger more of Kim’s jarring, draining daily rages. “I try not to engage,” she said. “We’ve sort of learned not to agitate her.”

Today, however, Clark has new hope. The Folsom mother learned of a newly identified severe childhood mental condition – called disruptive mood dysregulation disorder – which affects kids from 6 to 19 years old. Such a diagnosis could explain Kim’s inability to hold her angry moods in check and, importantly, signal an end to family turmoil.

Clark, who asked that the family’s real name be withheld for their privacy, recently read about the disorder in an article chronicling its effect on Jordana Steinberg, the 20-year-old daughter of state Senate President Pro Tem Darrell Steinberg. Hoping to help others, Jordana, a Sierra College student, spoke publicly about her experience for the first time in a Bee article Aug. 31. Few people had heard of the disorder, but now some families in the region believe that they, too, may have a young Jordana in the household.

With the recognition of the disorder in 2013, kids like Kim may be spared inaccurate diagnoses of bipolar disorder, a common fallback for psychiatrists facing a complex set of difficult symptoms. That means she’d also be able to dodge heavy bipolar drug treatments and receive medicines less harmful to developing brains. The exact pharmaceutical solution to DMDD is being tested by researchers developing treatment protocols for the severe childhood mood disorder.

At the National Institute of Mental Health, clinical trials have started to gauge the effectiveness of a far milder combination of drugs for DMDD than those used in bipolar cases.

“The good news about this new diagnosis is that it should help prevent children from being treated with drugs as if they have bipolar,” said Dr. Ellen Leibenluft, chief of the NIMH’s section on bipolar spectrum disorders. “The treatment’s very difficult for a child to bear.”

For more than a decade now, Leibenluft has been exploring whether kids with frequent outbursts, constant angry moods and rages were suffering from an over-reactive mood disorder that’s separate and distinct from pediatric bipolar illness.

Ever since the mid-1990s, when pediatric bipolar became an accepted diagnosis, child psychologists applied the diagnosis liberally. Several studies captured this surge, including one that showed a 400 percent increase in adolescents discharged from hospitals with bipolar diagnoses from 1996 to 2004. Hundreds of thousands of U.S. children are believed to be flagged as bipolar – and heavily medicated as a result.

Many experts voiced alarm over the dramatic uptick, citing concern over the drugs’ effect on children. Leibenluft believes that up to 60 percent of kids labeled bipolar had DMDD instead, and could benefit from far less toxic drugs, such as attention-deficit medicines and serotonin reuptake inhibitors used for depression.

Leibenluft is issuing a nationwide call for 50 more children to join the drug treatment clinical trials at the National Institute of Mental Health in Bethesda, Md. She’s also seeking symptomatic children to undergo brain scans for research on what goes on when children are frustrated.

Over-reaction to frustration, frequent outbursts and a constant low-level of anger, are hallmarks of DMDD. Symptoms can also include characteristics of attention deficit hyperactivity disorder and an overlap of oppositional defiant disorder, in which kids are angrily disobedient and hostile toward authority figures.

There’s usually some language impairment in the mix, experts say, possibly impacting learning, reading or verbal expression. The brains of youths with DMDD are believed to be dancing to a different drummer, so to speak, exhibiting irregular rhythms – or, in medical terminology, dysthymia. Interestingly enough, children with DMDD are found to be poorer at reading facial expressions than other psychologically impaired children.

The latter symptom was discovered when researchers scanned activity in the brain’s amygdala, a center of emotion. In kids with DMDD, they found the amygdala to be low-functioning when children focused on facial expressions, an indicator, perhaps, that the intensely angry child cannot sense when enough is enough.

This may help explain why a child suffering from the mood disorder can be mean-spirited – even heart-breakingly toxic – in targeting family members with their rage.

While family members may recall rages in excruciatingly painful detail, often the child will grow up with little to no memory of her worst moments. This, again, can be attributed to a low-functioning amygdala, experts say. Because the amygdala impacts emotion and memory, lower activity in that section of the brain may inhibit the long-term memory of what triggered the rage and how it played out.

Kim’s over-reactive responses to stimuli have intensified over time, her mother said, especially since she turned 12 and went through puberty. Recently, she verbally assaulted her father with powerfully hateful words, leaving him feeling emotionally wounded and devastated, Clark said. Kim’s grandmother said, “It takes some time to recover, and by then, she’s ready to go at it again.”

Before DMDD was officially accepted as a diagnosable condition, experts engaged in heated debate while updating the latest Diagnostic and Statistical Manual of Mental Disorders (known as DSM-5), a sort of bible of mental disorders for clinicians. Many feared that children with commonplace tantrums would be swept up in the new diagnosis. An initial description of the disorder was titled “Temper Dysregulation Disorder,” and quickly rejected because of that concern.

Day to day, Clark and her daughter face a mountain of difficulties in relating to one another. Kim is now enrolled in her fourth school in eight months. Clark says that, as a mother trying to save her daughter, she is burned out.

But there’s potential for progress, Clark said, in Kim’s twice-weekly participation in neural-feedback therapy designed to train the teen to clear her mind and keep it open and free. Sensors placed on her scalp send a signal when her thoughts rise up and become jumbled or overly intense.

“She is not an evil person,” Clark said. “She just overreacts to everything. She gets so angry she can’t reason with her own mind. We are not a cussing family, but she’ll throws F-bombs around. In the car, she’ll hit me. It’s unreasonable. We change our lives to adapt to whatever mood she’s in.”

In relating to Jordana Steinberg’s journey, the Clarks share a commonality with the Steinberg family: Unconditional love for their child, no matter the tumult.

Jordana, who as a child received a bipolar diagnosis, only recently learned from her therapist that she likely suffered from DMDD instead. During treatment at Summitview residential group homes in El Dorado County, she learned how to retrain her brain and quiet her intense overreactions. Then, in her first year at Sierra College, she decided to drop the heavy meds. She manages stress through exercise, a good night’s sleep, eating right, maintaining a routine and focusing on the positive in day-to-day life.

No doubt, families will find welcome relief in the notion that the childhood disorder may mellow in adulthood, though research does not yet show this to be a certainty, experts say. Scientists do know, however, that DMDD is a predictor for depression and anxiety later in life. But these are increasingly manageable conditions.

Meanwhile, in the Clark household, Kim’s grandmother noted that, “I can’t say enough about how much Kim is loved by her mother, father and, of course, me. She’s a beautiful, beautiful girl. She’s bright; she’s got an incredible vocabulary. But there’s a motor running and somehow she can’t shut it off.”

Kim’s mother said, “I know she loves me. Every once in a while, when I’m sitting down, she plops down in front of me and lets me massage her. Touch is good for healing.”

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