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From We did not know that our schizophrenic daughter January Schofield's imaginary friends were hallucinations By Catherine Elsworth  7:30AM GMT 27 Jan 2013

Jani had always been different. Precociously intelligent, she knew the alphabet by 13 months and, at a year and a half, spoke in grammatically correct sentences. By three, she was quizzing her parents on the Periodic Table. At four, tests revealed an IQ of 146 and an estimated mental age of between 10 and 11. She required constant stimulation and had few friends, preferring the company of a cast of imaginary rats, cats, dogs and little girls. She also hated to be called by her real name, insisting on nicknames such as Blue-Eyed Tree Frog or Rainbow.

The first of Jani’s several hundred imaginary friends, a dog called Low, appeared just before her third birthday. “We just didn’t really think about it,” Michael says. “But it began to get weird with the sheer number. It wasn’t just one or two; they were growing exponentially. By the time she was four, I couldn’t keep track of them all.”   All lived in a place Jani called “Calalini”, a desert island she describes as being “on the border of my world and your world”. Some were simple playmates – a girl called 24 Hours and Midnight the cat.

Jani was prescribed adult doses of powerful antipsychotics, most of which had no effect; her psychiatrist described Jani as having “the highest resistance to medication of anyone I have ever treated”.

Then new playmates arrived … like 400 the cat and Wednesday the rat, who ordered Jani to hurt or scream at people, jump from buildings and attack Bodhi [her brother]. She said they would “scratch and bite” her if she didn’t.

“It really wasn’t until she got violent that we found out that she could not control it,” says Susan. “We were like, 'just tell them to stop’. We were treating them like imaginary friends. We did not know they were hallucinations and had a mind of their own.”

This was not the daughter Michael recognised, the little girl who would ask him to fish drowning bees from the swimming pool. Now the family lived in fear of the 15-minute bouts of “pure fury” that came numerous times each day – usually triggered by Bodhi’s crying...

As Jani’s behaviour went from “rude and withdrawn” to dangerous, her father realised he had become terrified of his own daughter. He describes how Jani, who had always loved animals, would try to beat the family’s dog, Honey, chasing her and calling her names in a voice that sounded like Jack Nicholson’s character in The Shining. One evening she tried to choke herself with the sleeves of her shirt. On Christmas Day 2008, at the age of six, she attempted to throw herself from her bedroom window, saying she needed to “get away”.

By then, her parents had started checking her into psychiatric hospitals. She was the youngest patient by far but, to the Schofields’ alarm, seemed almost at home. “That was the first time I really knew it was what it was,” recalls Susan. “Because she was saying, 'They get my imagination’, and we were on a psychiatric ward, with girls who were bipolar or otherwise mentally ill, and I’m thinking, 'Oh my God’.”

The initial hospital stays – at the only facilities the family’s health insurance would cover – were of little help, leading to no change in Jani’s treatment or diagnosis. Some staff suggested that all Jani needed was stricter discipline.

In early 2009, Jani went berserk at school, trying to hurl herself through windows and doors. Michael arrived to find her locked in an emptied office with a district psychologist. He told the stunned headmistress to call the police. Jani was taken to UCLA, where she was placed under an involuntary psychiatric hold, a law used to confine mentally ill people deemed a danger to themselves or others, and admitted to the psychiatric unit.

When she was finally diagnosed a few weeks later, Michael was hit with the crippling realisation that there was “no cure. It was stronger than I am, and it had more power over Jani than I did.”

Even as the doctors scrambled to find a combination of drugs to control her symptoms, Jani seemed to be getting worse, attacking fellow patients and beating herself in the head. She was hallucinating nearly all of the time and barely interacting with the real world. Doctors warned that she had “a 50 per cent chance of getting better and a 50 per cent chance of getting worse”.

Michael became convinced Jani would soon be “gone forever”. One night he visited her at UCLA and, for the first time, she did not recognise him. “I thought she was going to slip into her world and not come back,” he recalls. “And I thought, when she died, I would go too. I’ve heard people refer to schizophrenia as going down the rabbit hole – it’s a fairly common phrase among families who have a loved one with schizophrenia.”

Endless doctor’s visits, huge doses of powerful medications and traumatic hospitalisations eventually led to the awful diagnosis her parents had never let themselves believe: the Schofields were losing their daughter to schizophrenia, and nobody knew how – or even if – they could bring her back.

While schizophrenia, which affects about one in 100 people at some point in their lives, is disturbing in adults, it is “20 to 30 times more severe” in children, according to Dr Nitin Gogtay, a psychiatrist working on a long-term study into child-onset schizophrenia by America’s National Institute of Mental Health (NIMH).

“With the typical child that comes to us, it’s not surprising to see them actively hallucinating 95 per cent of the time they are awake,” says Dr Gogtay (who has not treated Jani). Most of their hallucinations tend to be “intense and frightening”, with voices telling them to do “violent and gory” things. “For a little child, that is extraordinarily scary.”

Still, it is incredibly rare – the NIMH study, begun in 1990, has to date identified only 130 children under 13 with the condition. It is also hard to treat. Most of the antipsychotics that work in adults, allowing them to have periods without illness, do not work in children. “It’s a devastating illness,” says Dr Gogtay. “It’s extraordinarily hard to see these kids suffer. I don’t think I’ve seen anything more severe in any aspect of medicine.”

Jani, who is now 10, is one of the youngest people in the US to be diagnosed. She was six when doctors at the Resnick Neuropsychiatric Hospital at the University of California Los Angeles told her parents they had “ruled out everything but child-onset schizophrenia”. Earlier theories had included Asperger’s, autism, biopolar disorder, OCD, ADHD and extreme anxiety. “By that point, schizophrenia was the 800lb gorilla in the room nobody would mention,” says Michael.

Until then, he had wanted to believe their daughter’s behaviour was due to her advanced mental age, a type of “early teenage rebellion”. “I was still clinging to the idea that Jani was like Stephen Hawking in the body of a five-year-old; that we just needed to find a psychologist who could work with her and she would be fine. Mental illness didn’t even cross my mind.”

Today, Jani is largely stable, thanks to a cocktail of drugs that include clozapine, a “last-resort” antipsychotic used in children with schizophrenia who do not respond to other drugs. Michael says it’s not known why, but older classes of antipsychotics work better in children than newer drugs. “The trade-off is their little bodies can’t deal with it. So you’re faced with a choice: you either poison the body to save the mind, or you let the mind go to save the body. You’re always walking that tightrope.”

Dr Mark DeAntonio, clinical professor of psychiatry and medical director of the Inpatient Child and Adolescent Service at UCLA, says Jani’s prognosis remains “guarded” because, even with medication, the schizophrenia affects all aspects of her functioning. She is likely to require drugs to control the psychotic symptoms for the rest of her life.

No one knows what causes schizophrenia but genetics could play a role. Susan’s great-uncle was diagnosed schizophrenic and Michael’s mother was delusional and disturbed.

Bodhi, now five, has been diagnosed with autism, but Susan says it remains a possibility that he also has schizophrenia. “Either way,” she says, “we’re prepared.”

Diagnosis for schizophrenia in Britain is different. “We have never come across a case of someone diagnosed at such a young age,” says Paul Jenkins, CEO of the charity Rethink Mental Illness.