Keeping Jani Alive: The Perils Of Childhood-Onset Schizophrenia

July 1, 2009 — -- On a trip to a park near their home in Valencia, Calif., last week, a boy approached Michael Schofield and his six-year-old daughter January, called Jani, to admire their dog, trading stories with Jani about his own dog. Then, without warning, Jani hit the boy in the chest.

"She hit him in the chest because Wednesday-the-rat told her to," Schofield said.

But Wednesday-the-rat is not a contrived, "devil made me do it" excuse to punch someone. Jani suffers from schizophrenia, a chronic, severe, and disabling brain disorder most strongly characterized by sensory hallucinations. Jani can see Wednesday-the-rat and hear him demand that she hit the curious boy and feel him biting her until she complies.

"She's really tortured by this," Schofield said. "It really forces her all the time to do things she doesn't want to do."

Cases of childhood-onset schizophrenia such as Jani's are rare but can be extremely severe, often having poor outcomes. Because so few children have the disease compared with those who develop schizophrenia as adults, there are fewer resources to help children and their families cope with the hallucinating or spending significant amounts of time as if in another world -- Jani's is called Calalini.

Schizophrenia affects about 1.1 percent of the United States population, according to the National Institutes of Mental Health. The vast majority of people with schizophrenia develop the disorder between ages 17-24. Cases after age 40 and before age 13 are rare and estimates for the incidence of childhood-onset schizophrenia range from 1 in 10,000 to 1 in 30,000.

But it does exist. And Jani's parents and doctors say she is one such case.

Recognizing Childhood-Onset Schizoprhenia

Recognizing a child has schizophrenia can be difficult because some of the symptoms are consistent with stages of development.

"Many children between 5 and 8 have imaginary friends and talk about imaginary worlds," said Dr. Mark DeAntonio, a child psychiatrist and director of Adolescent Inpatient Service at the Resnick Neuropyshicatric Hospital at UCLA where Jani receives treatment. "But they understand that other people don't share that. [Schizophrenics] are totally absorbed by that world... They'll prefer it or demand that it's more real than the world they're around."

Hallucinations Can Be Frightening

But these hallucinations are not always a comforting retreat from reality.

"Often it's a very disturbing world," DeAntonio said. "People die, people are evil, they [can] make a person do bad things."

For children with schizophrenia, hallucinations are less torturous than they might be to someone who develops the disorder in adolescence because they have a neurotypical frame of reference. A child may simply think it's normal to hear voices and that it happens to everyone. Jani's first imaginary friend appeared when she was 2 and ½ years old. Soon there were hundreds.

But while the hallucinations may seem normal, they still come from frightening places, which can cause someone with schizophrenia to lash out, becoming irrational paranoid and violent.

Schofield said it became apparent that Jani was not controlling these creatures herself, but that she was at their mercy.

"One minute she would be really sweet and loving and all of sudden she'd just turn. Literally it was like the Exorcist -- she would become another person. Her eyes would change, her demeanor changed, her voice flattened out," Schofield said. "Her imaginary friends are not imaginary at all but command hallucinations. They tell her to hurt herself or someone else."

Getting Help for Schizophrenia

Schofield and his wife also had a difficult time getting help for Jani because of the stigma that aggressive behavior in a child indicates that the parents are at fault due to abuse or neglect.

Though schizophrenia has a strong genetic component, some triggers can precipitate the disorder. In children, these triggers can be a history of brain trauma, having a seizure disorder or being premature. Alcohol or drug use during pregnancy can also increase the risk for brain damage.

Controling schizophrenic hallucinations and other symptoms requires strong drugs that have side effects including weight gain, diabetes, and hypertension.

Jani's current regimen is Tegretol, an anti-seizure drug that is also a mood stabilizer, Thorazine, the only anti-psychotic that has worked for her, and lithium, which helps the effects of the Thorazine.

The Dangers of Schizophrenia Medications

For many, medications can successfully control psychotic episodes, but nothing can prevent the disorder from developing and there is no cure. As children grow, the schizophrenia persists, slowly robbing their minds of their cognitive abilities.

"People with childhood-onset are more impaired because they haven't gone through normal developmental processes, unlike people afflicted in their 20s, who have acomplished some of those developmental tasks," said Dr. Dost Ongur, clinical director of the Psychiatric Disorders Division at McLean Hospital in Boston. "Schizophrenia leads people to live very limited lives. In general, the prognosis for schizophrenia is poor."

As children become more aware of the difference between themselves and those around them they constantly struggle between what they know to be reality for themselves and what they are told is the true reality. Medications and therapy are meant to help make that distinction, but it is easier for people with childhood-onset schizophrenia to regress back to their own world.

"Kids are much more likely to simply respond to the delusions," said Dr. Donald Condie, assistant professor of child psychology at Harvard Medical School, and adults are better able to talk their way out of them. "Therefore, the cognitive behavior therapy you can try with adults won't work with kids."

Stunted Devlopment Common for Schizophrenic Children

Lacking the proper development, children with schizophrenia can develop maladaptive coping strategies as they get older -- avoiding difficult tasks, refusing to go to class or speak with their teacher if they have trouble, and self-defeating attitudes that keep them from trying new things.

"It's very tough on a family seeing a child whose development is derailed very early," Condie said.

People with schizophrenia are at high risk for suicide, which accounts for about one in five deaths in this population. This impulse includes children, although it is less likely that they will complete suicide because they are under constant supervision. Schofield said Jani has said she wants to die and has attempted to take her own life several times, including an attempt to jump out a window, choking herself with her hands, and saying she will crawl into the oven.

Keeping Jani Alive

As Jani's parents look to the future, Schofield said their focus will be to provide stability and as many good moments as possible.

"While other parents might be fantasizing about their child going to Harvard, we just want to keep her alive," Schofield said. "It's not a done deal she will have adult schizophrenia. But [it becomes] more likely if her symptoms don't go away and there's a good chance this is a lifetime thing... Our hope for the future is that she stays alive and that she has enough moments of happiness as she grows up."

Learn more about Jani Schofield at www.januaryfirst.org.