Friday, July 10, 2009

Jani Schofield diagnosed with schizophrenia

For Jani Schofield, some progress -- and major setbacks
The 6-year-old, who has been diagnosed with schizophrenia, doesn't fare well after a change in her environment, and the stress of caring for her takes a severe toll on her family.
By Shari Roan

4:56 PM PDT, July 8, 2009

On June 29, The Times profiled Jani Schofield, a 6-year-old diagnosed with schizophrenia, and her parents in “Jani’s at the mercy of her mind.” The article examined Jani's bouts of rage, her make-believe world, and Michael and Susan Schofield's efforts to keep their family together while also safely raising Jani and her toddler brother, Bodhi. Here is an update on the Schofield family.

Michael and Susan Schofield's plan to keep two apartments and trade 14-hour shifts caring for their 6-year-old daughter, Jani, worked for awhile.

And Jani returned, with modest success, to her elementary school.

But when school ended two weeks later, so did the Schofields' only real respite care, and their lives began to unravel.

The Schofields clashed with the team of workers from a nonprofit provider of mental health services the family was depending on for support. The social workers tried to help, says Michael, but didn't seem to understand that simple parenting techniques and behavioral therapies were irrelevant when caring for a psychotic child.

The cost of two apartments was crushing, and their money woes mounted. Michael and Susan began to argue more often.

When she was discharged June 1 from UCLA's Resnick Psychiatric Hospital, Jani had fewer hallucinations and was less violent. But within a week at home, she began spending more time in her imaginary world of rats and cats and searing temperatures.

Jani's psychiatrist raised her dose of Thorazine, one of three drugs she takes to control the psychosis, but it had little effect. Moreover, Thorazine causes severe photo-sensitivity so time spent at the park and swimming pool, where Jani is mostly easily entertained, had to be dramatically curtailed. She was soon bored with her tiny apartment.

The detailed daily schedule the Schofields crafted to mimic Jani's schedule at UCLA went by the wayside. The point system the couple planned to use to track Jani's behavior and reward her for progress was forgotten.

Both Michael and Susan battle depression and see a therapist. But Michael grew especially despondent.

After three weeks, the couple's hopes of caring for their daughter at home slipped away. Jani was psychotic most of the time, talking about her imaginary friends, gesturing to them, running to the door to allow them access to the apartment. She threatened her baby brother, Bodhi, sometimes kicking him. The toddler grew more anxious and clingy, and the Schofields began to worry about his psychological health and development.

On June 24, while the family was eating breakfast at Denny's, a drop of orange juice spilled on Jani's slacks, a sensation she cannot stand. She began to remove her pants in the restaurant but had not put on underwear that morning. The couple wrestled with her to keep her dressed while she erupted with fury over her wet clothing.

It took an hour to calm her.

The next day, she screamed at the doctor's office where she was undergoing regular lab tests to check for side effects from the high doses of medications. Later, she carried an imaginary rat in the palm of her hand and cautioned onlookers, "Be careful around him. He squirts."

Susan lost her set of keys and Michael yelled at her. Also that day, the family (other than Jani) was ill with a respiratory virus, and Bodhi was diagnosed with asthma.

On Thursday, June 25, Jani's blood test results came back. Her thyroid levels were abnormal and there was blood in her urine. She complained of constant itching.

Susan stayed home in Bodhi's apartment while Michael turned off the lights in Jani's apartment and drove her to UCLA.

January Schofield was re-admitted to UCLA's Resnick Neuropsychiatric Hospital later that day.

"It was really hard to take her back," Michael says. "It feels like a failure. We really wanted to make it work."

Jani's doctors at UCLA have decided to wean her off her current medications and try Clozaril, a last-ditch anti-psychotic that carries the risk of severe side effects. In the meantime, the Schofields are completing paperwork seeking to have Jani admitted to a study on child schizophrenia at the National Institute of Mental Health in Bethesda, Md.

Michael acknowledges that he and Susan need time to regain their mental and physical health before beginning the next round of Jani's life.

The day Jani was readmitted, says Michael, "I felt such a profound sense of despair. We can't get the services that we need to keep her at home. It breaks my heart that the only way we can get a break is to put her back in the hospital."

The staff at UCLA was kind when they saw their little patient again. She has made some progress, one of the nurses reminded Michael; she is less violent.

Jani remembered the staff well and didn't seem to mind going back to the hospital. But after Michael hugged her and said good-night that Thursday, she began to cry softly -- something she rarely does except in anger.

Michael detected a little sob and paused at the door.

"I called back to her, 'Jani, are you OK?' "

"Yes," she said.

No comments: