For Jani Schofield, an abrupt end to first grade *
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It was a summer of ups and downs for January Schofield, the child diagnosed with schizophrenia who was the subject of a Los Angeles Times article on June 29.
Jani spent a good part of the summer in the child psychiatric unit at UCLA.
She was discharged from her second extended stay at UCLA on Aug. 5 on a new medication, Clozaril. The antipsychotic medication can cause serious side effects but has helped many people with schizophrenia to resume functional lives.
For Jani, it’s the last line of defense. There are no other medications to try if Clozaril fails to help her.
The major setback for Michael and Susan Schofield, Jani’s parents, was learning that she was not accepted into a top-flight study on child schizophrenia at the National Institute of Mental Health.
By enrolling in the study, the Schofields had hoped that Jani, who turned 7 in August, would be evaluated by the world’s leading authorities and that they could learn more about the illness. However, at some time in utero, at birth or shortly thereafter, Jani suffered oxygen deprivation that caused cells in a small area in her brain, in the thalamus, to die off. The brain damage is not thought to have caused the schizophrenia, although it’s possible it contributes to the severity of her symptoms. Nevertheless, the defect disqualified Jani from the study because participants must be free of any disorders or injuries other than schizophrenia.
It was a crushing blow to the couple.
‘I was looking for the U.S. government to say, ‘Yes, your child has schizophrenia,’ and that we would have the full force of the federal government behind us,’ Michael said.
Jani was released from UCLA on Aug. 5 and came home to the two-apartment system her parents set up to care for her and keep her baby brother, Bodhi, safe from Jani’s erratic behavior. The Schofields were worried. They had hoped she could attend an outpatient day program for mentally ill children at UCLA. But they were told she was too psychotic. The family, however, has been unable to find other outpatient services for her. No public health services agency, it seems, is qualified to help a family with a psychotic child.
For a few weeks, the Clozaril, which Jani takes along with lithium, seemed to help. She had fewer hallucinations and her violent outbursts waned. She started first grade in a special education class at the Valencia elementary school where she attended a few months of kindergarten the year before. The goal of attending school, the Schofields say, wasn’t so much for Jani to learn (that is difficult due to her fractured attention span) as to give her a safe place to be during the day so that the parents can have a break. When Jani is home, she needs constant attention.
‘The biggest worry we have is not having any services in place,’ Michael said.
The week following Labor Day began badly.
The hallucinations of rats and cats that crowd Jani’s mind were becoming more prominent. Two phantom figures -- Wednesday the rat and Four Hundred the cat -- are the restless hallucinations who urge Jani to do what she calls ‘bad things.’
That week, Wednesday told her to find a place to jump from 50 feet. Jani told her parents about Wednesday’s command but informed them, ‘I’m not listening.’
‘I do think it’s a positive sign that she told us preemptively,’ Michael said.
Four Hundred the cat had returned in early September after a pleasant absence. ‘Jani became very insistent that we had to take care of Four Hundred to keep Four Hundred from bothering her,’ Michael said.
On Sept. 10, while at school, Jani said, Four Hundred told her to run out of her classroom three times. On one occasion, Jani blindly followed the beckoning Four Hundred into the street. She was readmitted to UCLA later that day.
‘We took her back because we feared for her safety,’ Michael said.
The Schofields hope their daughter’s hospitalization won’t be lengthy. The doctors are increasing her dose of Clozaril to 300 milligrams a day -- a dose similar to what adults take. But the couple is struggling with feelings of failure and worries about the future.
‘It hurts like hell to send her back to the hospital,’ Michael said. ‘When she’s in the hospital, we feel like we’ve lost the battle -- not the war, but the battle -- and we need to regroup and prepare for the next battle.’
When Jani is discharged, she will not return to school. ‘I’m better at keeping her out of her psychoses,’ Michael said. ‘Special ed is just not set up for a child with schizophrenia. And it’s difficult to trust anyone else to do what we do for Jani.’
The Clozaril has helped, overall, but it will never extinguish the mysterious animals and little girls that frolic in Jani’s ‘other world,’ which she calls Calalini.
‘What we’ve been told is that the hallucinations will never be entirely gone,’ Michael said. ‘This is the best we can get right now. We’ll just have to muddle through this the best we can.’
Previous stories on Jani Schofield can be found on the L.A. Times website.
June 29, 2009
Readers can follow developments on Jani at Michael’s blog, January First.
Hundreds of L.A. Times readers have sent in questions and comments about Jani’s story. Michael and Susan Schofield sat down recently to answer some questions from readers.
1) Has Jani been tested for epilepsy?
‘She had a complete neurological work-up, an EEG, which was normal, and a sleep test, which showed she has restless limb syndrome. I would like Jani to have a complete neurological workup, but I don’t want to subject her to needless tests. What tests Jani has had are largely controlled by the insurance company. It refuses to pay for a lot of tests. . . . That said, is a neurological problem the cause of her condition? No.’
2) Could her condition be caused by food allergies, nutritional imbalances or deficiencies of some kind?
‘The idea that food allergies or diet could cause psychosis is sort of outside mainstream medicine. For parents who feel their children have been cured of severe mental problems by diet or vitamins, it could just be luck.’ Do you use any natural or holistic therapies? ‘I don’t trust that enough to put my child’s life in the hands of holistic therapies. If it works for other people, great. But we live in constant fear of Jani committing suicide or trying to hurt herself. We are not in the position to try things and see what happens. And I’ll be honest, I don’t think it would work. I don’t believe there is someone out there with a magic answer.’
3) Do you believe prayer helps?
‘Susan and I both believe in a higher power, in God. We believe that we are doing God’s work. I think prayer is wonderful. But I think God’s will is done through people. Prayer is not enough. God sends angels, but they are people who come to help. We welcome people’s prayers. I would say to them, thank you very much. Do what you can do to make the world a better place.’
4) Does Jani have any chromosomal disorders?
‘As far as we know, no.’
5) Isn’t this Asperger’s disease?
‘Asperger’s disease was ruled out by doctors. Jani’s obsessions are psychotic obsessions.’
6) Isn’t this bipolar disorder?
‘Bipolar disorder was ruled out by the doctors. In bipolar, the psychosis is the result of emotional swings, while in schizophrenia, the emotional state is caused by the psychosis. In Jani, violence is brought on by hallucinations.’
7) Does music or art therapy help?
‘In the beginning, the problem was that if she couldn’t do something perfectly, she wouldn’t do it. She’s gotten better at that. She enjoys projects at home. It gives her a feeling of success.’
8) What is the significance of her fixation on numbers?
‘Every schizophrenic has certain hallucinations. My personal theory is that when Jani’s illness was becoming acute, she was learning a lot at the time. She was learning about animals and numbers. At 13 months old, she knew her numbers to 20, and she always loved animals. And I think that is the form her hallucinations took.’
9) Why did you decide to make your story public?
‘I’m tired of trying to explain it to people everywhere we go. We can’t hide. . . . Also, the only way to make this world livable for Jani is to explain to people that she is not a bad kid. She has the most severe mental illness known to mankind. We want to help the world understand this.’
* Jani Schofield attended only a few weeks of first grade last year. Age-wise, she is in second grade this year.
-- Shari Roan