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For Jani Schofield, an abrupt end to first grade *

September 18, 2009 |  7:00 am

Janimain 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

July 9, 2009

July 9, 2009

July 19, 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

Photo: January Schofield. Credit: Lawrence K. Ho  /  Los Angeles Times

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Comments (117)

I guess you parents should try anyway to give her only natural food, without preservants, colorants etc. as it is well known they can harm children and maybe make them hyperactive. I guess you should also try the holistic treatment because as it can be natural too it won't hurt your child. Too many drugs can't be a long term solution and you should find other more natural as they don't have side effects conversely to drugs or Occidental medicine.

i think you are very smart and you are 100% right your a very smart person we need more ppl like you in this world

New age hippie idiots who think that natural remedies alone will cure absolutely everything and badmouth anything that requires an Rx drive me completely nuts. Natural remedies and diet modification have their benefits, but if you think a preservative-free diet will actually cure schizophrenia you have NO idea what it’s all about. Yes, some drugs have side effects. That’s why there is continuous research into new and better medicines. But it doesn’t mean that they should all be shunned entirely. All you are doing is showing your willful ignorance by pointing your holier-than-thou finger at these poor parents. Shame on you. Try some sympathy. Better yet, participate in fundraisers for research and educate yourself at the same time. Oh, and by they way, holistic medicine is not a type of treatment, it’s a way to approach treatments while incorporating emotional/spiritual well-being.

It's a shot in the dark, but I wonder...if she's getting constant harmful feedback from inside her head, would some sort of constant biofeedback provide an equally insistent, equally persistent counter-suggestion? I don't mean it would be curative, but if it allowed her to have some control over her actions and physical state, it would be a huge benefit both to her and to parents who have to monitor her so intensely, without a break. Surely if you can identify a few classic actions that are warning signs for you, some CalTech class could make it a class project to come up with a detector for those behaviors.

I suggest that answer because it would be free. Getting a bunch of smart students thinking about how to engage with severe mental illness and provide tools for sufferers to exert some level of self control would be a wonderful side benefit.

The Schofields's should be proud of themselves. They're knowledgeable, resourceful, and hopeful. Good luck and may your hope for Jani's stabilization and functioning within normal limits be fulfilled.God Bless YOu!

Your story saddens me so. There should be a better system in place to help those with severely mentally ill children. Health care reform should include strong mental health services. Please email your story to whitehouse.gov, cnn or other new outlet. It deserves to be apart of the public discourse.

How about medical marijuana? It's done wonders for my mental health.

As a parent of a teenager with mental disorders, I so feel for this family. It isn't a picnic, by any stretch of the imagination. I have heard all the natural food and holistic suggestions and they are NOT going to work.

We have a sad situation in this country where there is nothing out there for children with serious mental issues. We are told to hide them at home or put them in institutions, but no one wants to see them--or help them with the coping skills they need to sort of integrate into society. And try finding a psychiatrist that specializes in severe childhood-onset disorders.

Schools don't want our kids because they have to come up with extra personnel/materials/safeguards for them. I have been bombarded by the school district with "suggestions" that I home school or put my child into a very expensive private behavioral school because they don't want to deal with her. No tuition help, of course, even though the district says they do not have the resources.

Right now, home school is a possibility because the medication my child is taking has resulted in traumatic alopecia (hair falling out in clumps) and she won't go to school because the school will not allow wigs or other hairpieces. The excuse for that is they think kids might hide illicit articles in them (!).

It is not every going to go away. It might get better, but not a lot. It is also a lifetime sentence for the parents who will always be the ones caring for children like Jani or my child. Instead of telling us we are bad parents because we KNOW the "new age" cures won't work, how about helping us by pushing for more options for our children's care in a real and meaningful manner?

Oh, and FYI--some doctors advocate NOT cutting off the sugar because sugar interacts positively with some neural medications given to children. Same with caffeine.

Why not "holistic" in combination with "mainstream?" Best of both worlds. Diet modifications and other "holistic" treatments often have few downsides. But I agree, not pursuing mainstream treatments too would be dangerous. Sometimes it is hard to accept that many times medical doctors - the people who should know - don't have all the answers. But medical doctors do have many answers. It is certainly clear the medical doctors do not have all the answers in this specific case. I do not mean any of this comment as a critique of these brave parents. It is however a direct comment on the sad state of our medical system that rewards profit over health.

As a former special ed teacher, I am aware that there is a process in place for parents of children who cannot (for whatever reason) receive a free and appropriate education in the public school setting. Such children may be sent to a private school (that is able to meet their needs) on the district's dime or they may be assigned a one on one aide at their regular public school. When you feel ready to try school again, perhaps a shortened day with a one on one aide will at least give you some respite and if that doesn't work pursue a more restrictive setting. You may need an educational advocate to help you work through this process as I'm sure you are exhausted just trying to get through each day. Good luck, I hope you can find someone to help you and that there are some solutions out there which will help your daughter. Her illness is not anyone's fault and I'm sorry your family is going through this.

These stories just absolutely kill me . . . My heart completely goes out to Jani's parents, who have been amazingly resilient and strong in the wake of setback after setback. I don't know if I could keep slogging on day after day as they do - it goes far beyond the love and understanding that all parents provide to their kids. These folks are absolute saints. Jani looks like and seems like such a sweet little girl - it's horrible that this disease has such a grip on her. I hope that something can be found or done to help this child (and her family) lead a more stable, normal life.

"The goal of attending school, the Schofields say, wasn't so much for Jani to learn ... as to give her a safe place to be during the day so that the parents can have a break."

Sorry but giving parents a break is not why taxpayers fund schools, especially expensive special ed programs. Hire a babysitter if you need a break.

I hope I'm not offending you I'm just trying to help. Have you considered having your home exorcised. The home might be the one that needs exorcism and not your child. The catholic church will perform one if you plead your case. Sometimes the home is the one that needs it because even if you move it can follow you. Medicine doesnt believe in this sort of thing so they wont recommend it. It cant hurt. Especially since these "hallucinations" are asking her to do bad things.

My heart goes out to the Mr & Mrs Schofield. I've known enough schizophrenics to know how difficult

It's too bad you probably cannot trust January around animals -- maybe the fact that they live in the here and now would help.

@Iulu, you obviously don't know very much about "natural food," because then you'd know that lithium (which January takes) is a naturally-occurring substance, commonly found in well water. So much for your "wisdom."

To Michael and Susan, I'm just one of so many people who are reading about Jani, feeling amazed at your strength, and wishing and hoping for the best for you and your family. My heart truly goes out to you.

Lulu, I'm a chemist and I would love for you to educate us all on why "natural" chemicals are so much better than ones we can control in the lab. In some parts of the world, carbon dioxide seeps "naturally" from volcanoes and suffocates living things. There are poisonous snakes that are "natural" as well as deadly tornadoes and hurricanes. Plenty of substances in "natural" remedies can have side effects and many natural remedies/products have not been subjected to the same rigorous evaluation that regular (non-natural) medicines have. Not everything "natural" is better. That's why we have civilization.

They should find "another solution"?
Do you happen to have the solution to schizophrenia in your pocket, or apparently you know of more than one?
Until you gain some knowledge about medicine, including treatment for schizophrenia, keep the advice about "preservants" and "colorants" for the coffee clatch; its of no hope or help to parents with a child doomed (that's the correct word) with a mental illness for which their is frequently no treatment.

I don't know much about mental illness especially in children but have you tried looking into the Mayo Clinic (MN) and see if they have clinical trials running? the Mayo has an excellent reputation with research. I understand the desperate feeling...I feel for you as well as for your daughter. My heart goes out to you.
Jenna (MN)

Thank you so much for sharing your story. My 18 year-old niece was diagnosed with schizophrenia as a child and suffers many of the same symptoms as Jani. Thanks to one of your articles, the doctor tried her on Moban which is helping out at this time. As you well know, it's throwing darts at the dartboard.
I hope you keep us updated with Jani's progress - it makes it feels as though we're not alone with our own struggles. We understand and wish you the best.

Dear Schofields,
I happened to stumble on the "most read" list on today's LA Times, and the heading to Jani's experience caught my attention. I was struck by the humanity and compassion with which you are parenting Jani (and likely, her brother Bodhi as well). I can only imagine the challenges and anguish that you are faced with as parents to a child with childhood schizophrenia, but this story also conveys the compassion, care, and love with which both of you show your daughter. Thank you for continuing to raise awareness of this serious disease. Your courage, bravery, and determination are to be commended.

It sounds like her problem stems from the fact that she was O2 deprived. I think Schizophrenia is a stretch.

what a touching story and such a cute young girl - i'll bet that there are countless readers with their fingers crossed for you~

Schofield's.. I am in awe of your courage. Thanks for being so public about this illness. Prayers to you all. We all need to make this world a more compassionate place with less judgement.. and more understanding.

I've been following this story from the beginning and my heart hurts each time I hear there is no progress in helping this girl live a normal life. I cannot imagine what her parents and sibling go through but I hope they eventually find help for her...

As parents, you know what's right for your child. I hope that something will come along that will be suitable for her and that she can eventually have a normal life.

 


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