Schizophrenia....Dont know what to make of this...

Welcome to UKHIppy2764@2x.png

UKHippy is a long running online community and of likeminded people exploring all interpretations on what it means to be living an alternative lifestyle -- we welcome discussions on everything related to sustainability, the environment, alternative spirituality, music, festivals, politics and more -- membership of this website is free but supported by the community.

  • Watch this video, it is so strange, it seems to me the parents and the doctors wanted to label her strange and 'ill' from the start......


    I dont know, it just does not seem right.


  • Very disturbing. As you say, it seems that the parents are fitting her behaviour into the parameters of an illness. Perhaps its that if they can blame the illness, they don't have to take responsibility for her behaviour themselves. Imaginary friends and temper tantrums are fairly common childhood behaviours, but instead of trying to modify the behaviour, her parents are rewarding it by making a big fuss of it being an illness. Her parents reaction in buying two one bedroomed apartments rather than just handling this in perhaps one three bedded seems very strange too, and perhaps is a clue to their own dysfunctionate coping strategies. Putting a 6 year old on major tranquilisers which have such awful side effects can never be a good idea. If I was their social worker, my main focus would be on the parents, and my gut reaction is that this is child abuse

  • I dont know what to make of it either.....

    I do wonder how ethical it is to treat such a young child with such powerful medication. The side effects of thorazine can be seriously horrendous. One irreversible side effect is tardive dysknesia (repetitive, involuntary movements; grimacing, tongue protrusion, lip smacking, rapid eye blinking etc).

    I only took anti psychotics once and dont plan to do it again any time soon !!! :eek:The word "heavy" doesnt begin to describe the effects it had on me - slurring speech,comatose within 30 minutes of taking it etc.

    The changes/ damage it probably does to a developing brain are frightening....
    Imo, if she ever had a chance of feeling "normal" (yes, I know how subjective that term is) the effect of this medication has seriously diminished if not totally ruled this out for her.:(

    I dont think I would have agreed to my daughter (at that age) having that treatment, no matter how distressed she appeared, or difficult to manage she was. The parents did seem to be asking her some leading questions......Very, very sad.

  • Personally I dont think she has schizophrenia and am very against the use of drugs, I can understand it in some ADULT cases, but not and never should be in the cases of children.....


    I watched Lois Theroux documentary about Americas drugged up nation, and it basically showed the same horrid thing....


    My little brother is far from normal and he had imaginary friends, tonk tonk and all sorts..... I would not put him on medication....


    Its horrid, and I would never wish that on any child, I think she has been forced into the label of schizophrenia.....


    Personally I dont really think it exists....


    I am trying to find documentaries on the illness anyone got any good ones to watch?


    Thanks.

  • Yeah it's really sad the way some parents can be totally irresponible and not see the situation clearly. People feel safe with drugs and labels and if that means keeping their child quiet great they'll do it after all a proffesional recomended it, that's so many peoples mind sets, it's funny you come up with this subject as I've just heard that my 6 year old niece has been refered to a psychiatrist for 'bad behaviour' banging her head against walls and refusing to dress herself apparantly, and when her parents to her to the gp and he started crying the dr told her to shut up, so basically taking the parents side in beleiving its the childs fault for being 'naughty' and having a 'disorder' it makes me sick and I feel so powerless knowing I can't interfere.


    But yes I agree this young girl on this video I believe is suffering a form of child abuse by unaware irresponsible parents and I think emotional and psychological is more widespread than we know and it causes so much long term damage, there's so many dim wit parents out there destroying innocent lives, and it just makes me phyisically sick and hopeless, all we can do as individuals I suppose is spread and live our own awareness.
    In the meantime this link may be intresting :)http://www.sciencedaily.com/vi…d_brain/child_psychology/


  • I don't think this child has schizophrenia but the illness does exist. There is a collection of symptoms that people can experience which is labeled "psychosis". Things like hearing voices, delusions, experiences of thought interference, etc. A person who experiences these symptoms for a long time or in a number of episodes are diagnosed with schizophrenia. These diagnosis (or labels) psychosis/schizophrenia are also subjective. We currently use DSM 4- produced by association of american psychiatrists as guide to which symptoms are given which diagnosis. But this evolves over time- There was once a DSM 3 and a DSM 5 is currently in production. Homosexuality was once a mental illness but we have to go back to DSM 2 for that.
    If you are rich you are less likely to get diagnosed with schizophrenia than if you are poor or especially poor and black. The rich are more likely to get a different label- Bipolar affective disorder is a less scary label.


    But many people experience psychotic episodes. I have met many. For these people the best (?only?) treatment is antipsychotic drugs. They work well and give people who are experiencing a lot of suffering their life back. Thanks to the drug companies these drugs are getting better with less side effects.


    But i see no evidence that this child experiences psychosis. There may be some behavioral issues but nothing that requires very strong tranquilisers. Probably the parents have poor parenting skills. That and a bit of munchausen's by proxy (where the parents fabricate illness in the child so they can get attention). If you go to enough doctors you will get loads of different opinions. The diagnosis of schizophrenia gives an excuse to prescribe antipsychotics. The antipsychotics reduce the bad behavior- Thorazine/chlorpromazine is the most sedating stuff still licenced.


    There is a lot of problems currently with childhood behaviors being medicalised and defined as mental illness, especially in america. this is probably due to a number of factors- The drug companies, Doctors, parents, the current culture, chemicals in food causing mood fluctuations (Have you ever seen a kids party when the fruit Shoots come out?). There are many factors, we cannot just blame the parents.


    I cannot realy think of many good films about scizophrenia. If you want to read a bit more about the bad bits of psychiatry you could check out Thomas Szasz who writes about it.


  • But many people experience psychotic episodes. I have met many. For these people the best (?only?) treatment is antipsychotic drugs. They work well and give people who are experiencing a lot of suffering their life back.


    Exactly. Then people who clearly know little if anything about it try to negate their situation. :rolleyes:


    But i see no evidence that this child experiences psychosis.


    Ditto. But then, she's on anti-psychotic medication, and it's a very short snippet of film. A google search on her doesn't seem to reveal an awful lot on the web that isn't either biased towards her father's take on it, or conversely, written by anti-psychiatry conspiracy theorists. Seems hard to get a balanced view from someone who knows anything about the girl.


    A disclaimer on the her father's blog about the situation stated, "Note: This blog should be taken as representations of my emotional state at the time of writing, not fact."
    Which seems a bit odd considering he's supposed to be keen to give us the 'facts'.


    He also said, "I have had to recall a memory of once trying to throw Susan out of our moving car because I was so angry."


    "Jani saw some of my violent rages. She has seen me hit her mother and her mother hit me back."

    :S


    Lili Marlene at Incorrect Pleasures suggests the girl may have synaesthesia, and is not psychotic:

    "As a non-schizophrenic I really don’t know how schizophrenia works, but I’m pretty sure a genuine, actively psychotic schizophrenic would not spontaneously make a distinction between a thing perceived that is real and a similar thing perceived that is not real. That surely is not the sort of thing that a psychotic person would be expected to do.
    " [snip] "Jani Schofield appears to make exactly this type of distinction, unprompted."

    http://incorrectpleasures.blog…-sorry-that-ill-have.html
    http://incorrectpleasures.blog…ld-evidence-is-there.html

  • im listening to it while fis watching this and im just :O she just sounds like an ordinary kid with messed up parents. instead of the other way round. i know that as a parent you want your kid to have friends etc and be a normal life but panicing about imaginary friends :eek:

  • im listening to it while fis watching this and im just :O she just sounds like an ordinary kid with messed up parents. instead of the other way round. i know that as a parent you want your kid to have friends etc and be a normal life but panicing about imaginary friends :eek:


    Agreed!

  • Found this:



    January First



    I fell in love with January the first time I saw her, although I didn’t even know she was January then. It was Susan’s first ultrasound at 10 weeks. Jani was only a head and four stubby limbs, but the ultrasound found her right away, floating right in the middle, already the largest thing in our life at an inch long.



    The next time we saw her was at 25 weeks. The obstetrician commented on how Jani was face on to the ultrasound, as if she could hear it, hear us, which we were told was unusual. Typically, we were told, the fetus often hides, but Jani was right there. Her eyes were open. We watched her blink.



    She was awake even then, and she would stay awake. She moved constantly, so much so that when on Memorial Day, 2002 Susan did not feel her move for 90 minutes, she panicked and broke down; terrified that Jani had died inside. She cried with relief when Jani finally moved. She had just been asleep.



    She was born on August 8th, 2002 at 1:06am. That is still one of the happiest moments of my life. I can still remember how it felt to hold my child for the first time and the disbelief that I had anything to do with her creation. She made me forget every worry I had felt in advance of her birth. I forgot about the claim that you would spend a million dollars getting a child to adulthood. I forgot about private schools and college funds. It was a moment of pure simplicity. That was Jani’s first gift to me.



    Ninety minutes after birth, lying swaddled in Susan’s arms, her eyes were open and she seemed to follow me and the camcorder around the room, although the nurse assured us newborn babies couldn’t focus.



    The nurses reported Jani was the best-behaved newborn in the nursery. While the other newborns screamed and cried, Jani seemed content.



    On August 10th, we brought her home. The first week passed. Everything seemed normal. Jani slept, drank from her bottle, and watched. Susan and I looked forward to the future, relieved that everything was working out.



    On the seventh day of her life, Jani awoke, but this time she did not go back to sleep. She screamed. Constantly. We fed her. We changed her. We held her. We played with her. Nothing worked.



    When Jani would fall asleep, we would put her down in the crib and run to our bed to sleep while she did. But just as we started to fall asleep, we heard Jani start to howl.




    From that point on, Jani would sleep in bursts of twenty to thirty minutes at a time, 24 hours a day. At three weeks old, she was sleeping a total of three to four hours a day. We took her to our pediatrician to get her checked out. Her physical health was fine. No colic. Jani was meeting her developmental markers. Nothing was wrong. The pediatrician wrote told us “some kids are just more active” and wrote down “irregular sleep patterns.”



    Susan and I went home with Jani. I dropped out of college because I couldn’t function, let alone study. It became pointless to put Jani down when she fell asleep because she would wake up again minutes later. People gave us all sorts of advice. We were told to ‘let her cry it out.’ We tried that once. One hour later, Jani was still screaming, so we picked her up and never did that again.


    Life became a process of getting from one day to the next. We began to work “shifts” with Jani, five hours on and five hours off, in order to give each other some sleep.



    One day, Susan was holding a screaming Jani and had to go out to get the mail. When she went outside, Jani stopped screaming. When she went back inside, Jani started again. A few more times experimenting with going outside and Susan had figured out what our pediatrician could not; the only thing that stopped Jani from screaming was stimulation.



    We learned that the more stimulation Jani got, the happier she was. Taking Jani to the mall and letting her see the crowds bought us quiet, if not sleep. Unlike most other babies, it was impossible to over stimulate her. She was not afraid of large crowds. In fact, she thrived on them. Susan and I spent our time with Jani desperately trying to find the largest group of people we could. We took her to the mall, to play areas, the zoo on the weekend days when it was the most crowded, Ikea. We squeezed ourselves into crowded elevators.



    And we did without each other, because by now the only time Susan and I saw each other was to hand Jani off after our “shift” was done.


    Susan worked overnights and would leave for work at 10pm. I would sit up all night with Jani, holding her while she slept fitfully in my arms. At 9:30, Susan came home from work but there was no rest for her. She took Jani and I went to bed until 2:30pm, when I would take Jani back so Susan could get a few hours.



    We met friends for one activity, like the zoo or a play area. But when the play date was done and they went home, we went on to the next activity. 12-14 hours a day, every day. We had to string four or five major activities together to get any sleep at night.



    By January 2003, Susan told her boss she could no longer work full-time. We were barely functioning. Even when Jani got sick, she would not slow down and sleep, and neither could we, sick or not. We discovered a play area in the Burbank Mall for children five and under. It was closed off so we could put Jani down there and collapse on the floor next to her, knowing she was safe but praying the staff wouldn’t realize Jani was sick and kick us out because we had no energy left to find anything else.




    People were drawn to Jani and her giant blue eyes that seemed to look into their souls. Being out all the time, we met so many parents and so many kids, but none of them were like ours. None of them slept as little as Jani did.



    When Jani was six months old, we went to visit family in San Francisco. It was the Chinese New Year and we were staying near Chinatown. The streets were filled with so many people I had to keep Jani up on my shoulders to keep her from being crushed. She loved it, watching the sea of humanity move around her. That night, she slept for seven hours straight; the first time in her life she had ever done that.



    At five months, Jani would press whatever button on a toy you told her to push. She began to talk at 8 months. At 13 months she knew the alphabet and her numbers to ten. By 18 months, she was speaking in grammatically correct full sentences.



    We thought we understood then. Jani was a genius. That was why she needed constant stimulation and never slept. We drove ourselves day after day, believing that one day Jani would be able to stimulate herself and this would end.


    At two years old, Jani was precocious and adorable. She would chat up anybody and everybody. She had no fear of strangers or climbing six feet above the ground on the jungle gym. She was constantly on the move.



    Shortly before her third birthday, Jani started to play with “Low,” an imaginary cat. Kids have imaginary friends all the time, so we thought nothing of it. She would say “Come on, Low! Let’s go play!” and run across the room. She talked with “Low” all the time.



    By this time Jani could count to one thousand, so we didn’t find it strange when another imaginary friend appeared named “400”, who Jani described as an orange tabby cat.



    But then Jani began to change. She started changing her name, often several times a day. She became Wednesday, then Hot Dog, then Blue Eyed Tree Frog. We didn’t find this strange, either. Kids often change their names. But we were growing uneasy now because when somebody called Jani by her name, she would scream in a rage at them: I’M NOT JANUARY! She started to withdraw from the other kids she had once loved playing with, spending more of her time alone with her imaginary friends. The happy, smiling girl started to fade, replaced by one who seemed angry at everything and everybody.



    By four years old, people were starting to suggest that Jani might be autistic or have Asperger’s Syndrome. So we had her tested. She didn’t, but she did have a 146 IQ. Once again, we thought that Jani was just brilliant, if a little eccentric. She loved to learn. Whatever you cared to teach her, she would learn and she could retain anything. She learned the periodic table (her favorite element is Tungsten). She learned about evolution. She loved science and math. We started making plans to put her in a gifted school.




    But by now, Jani was starting to scream at people. A high-pitched, excruciating and ear-shattering scream when she didn’t get what she wanted. And what did she want? She wanted to work. She would run behind the counters of stores and restaurants, laughing, saying she was sixteen and wanted to work.



    By now, Low and 400 had been joined by hundreds of other imaginary friends, who she normally named after numbers or days of the week. She refused to play with other kids, calling them “thirteens” and saying she was an “eighteen.” Her number kept climbing, into the hundreds and eventually into the thousands. She said she wanted other kids “like her.” We tried to find them, but no matter how smart or verbal the other child was, Jani would always come up with an excuse as to why she couldn’t play with them.



    Still, we reassured ourselves, she’s a genius. This is just a phase. She will grow out of it.


    By four and a half, Jani was so lonely and getting into so much trouble everywhere she went she asked for a sibling, which is how Bodhi came into existence.



    Then the violence began.



    It began right around the time Susan got pregnant. Due to her pregnancy, she was unable to take Jani all over the city for 12-14 hours a day anymore. I had finished my graduate degree and was working. At first it just seemed like Jani was throwing a severe tantrum, except that she hit at us with closed fists, kicked us, scratched and bit until she drew blood. These rages would come out of nowhere and pass just as quickly. Jani would go from sweet and loving to violent and back to sweet and loving within fifteen minutes.



    Those around us, even those within our families, thought Jani was a brat and that we just weren’t disciplining her. We were. But it didn’t matter. Jani’s violence seemed to come without warning and go as quickly as it went.



    When Bodhi was born, my parents came to take Jani so I could be with Susan. Jani was so violent that after a day they couldn’t take it any more. I had to bring Jani with me to the hospital, where she ran into other people’s rooms and attacked Susan and myself, as well as the nurses who tried to stop her.



    Whenever Bodhi would cry, Jani would become violent, but it wasn’t an emotional rage. Her voice went flat and her demeanor remained calm. She would attack us, saying “I am hitting you, Mommy (or Daddy). I’m not hitting Bodhi.”


    For the first time, we sought out a therapist, who upon seeing Jani once and her unprovoked violence sent us to a psychiatrist. The psychiatrist suspected bipolar and put her on medication, but it had no affect.



    By this time we could no longer travel anywhere as a family. We had to take two cars to prevent Jani from screaming at Bodhi when he would cry. One parent took Jani and one took Bodhi. While driving, Jani would unbuckle herself and reach up and shift the car into neutral on the freeway. She took off her shoes and threw them at us while we drove.




    We were referred to a neurologist, but Jani could not sit still for the EEG. The neurologist suspected ADHD, so we tried medications for that, but these only made Jani worse, making her high, followed by a violent emotional crash. Medication after medication was tried. None of them worked and most caused side effects, so we would quickly pull her off even though the psychiatrist wanted to keep upping the doses. We went to therapist after therapist. Each told us something different. Most told us we just needed to be “stricter” with Jani.



    By February 2008 the violence was so bad that we tried to get her hospitalized, but every hospital we called told us they either could not take a child so young or that they had no beds available. After a day of constant hitting and kicking, in desperation, Susan took Jani to BHC Alhambra in Rosemead, CA, the only child psychiatric inpatient hospital that our insurance would accept. But even they would not take her until Susan called Jani “January” and the admissions person saw Jani attack Susan.



    Jani spent three weeks at BHC Alhambra. The doctor there never communicated with Jani’s primary psychiatrist and put her on all the same drugs that had already been tried and discarded. To make matters worse, BHC Alhambra, like most facilities, was set up for teenagers, not children, and so any children that came in were put in with adolescents.



    Yet, Jani never cried for us to take her out. In fact, she never expressed any desire to leave. She only wanted us to visit and bring food. For the first time since she was two, she seemed genuinely happy, even though she was surrounded by teenagers who taught her things we had strived to protect her from.



    Jani wasn’t stabilizing. The staff at Alhambra kept telling us she was fine, yet by the end of the second week, Jani was spending most of her time in the “time out room” fast asleep after being injected with Thorazine. The staff told us nothing. We were terrified for Jani’s safety. She was rooming with a girl who had a history of fondling. The other kids would tell us that Jani would climb the curtains and jump off furniture, which the staff would deny, yet they never gave us a straight answer about why Jani needed constant PRN shots of Thorazine.




    Yet when she would wake up from the Thorazine injections, she was the closest to the daughter we remembered. She would talk to us about herself and not about her imaginary friends.


    We answered the same questions for the nurses, doctors, and social workers over and over again. Were there any complications during pregnancy or birth? No. Has Jani ever been physically or sexually abused? No.



    In desperation, I considered sending Susan and Bodhi to live with Susan’s parents. I didn’t know if Jani could safely live with Bodhi. We didn’t want him to grow up afraid of his sister. We didn’t want him to grow up spending every day visiting his sister in the “psych” ward. Susan and I could take the violence. He couldn’t.



    We could not understand how our five-year-old daughter could be like this. We looked everywhere for answers but nobody had ever seen a case like this, even the doctors.


    We visited Jani everyday in the hospital, taking Bodhi with us because we had no family in the area to watch him. Jani refused to brush her teeth, hair, or take a bath or shower on her own, so we had to do to make sure it was done. We alternated this, but on the night when it was my turn to give Jani a shower one of the nurses found this strange.



    Later that night the Department of Child and Family Services knocked on our door with two Sheriff’s Deputies. A staff member of BHC Alhambra had accused me of molestation. Jani had not confirmed the accusation, so I was simply asked to cooperate with their investigation and allow Jani to be examined, which of course I did. The investigation was closed, the accusation ruled unfounded.



    I wished, and still wish, the cause of Jani’s behavior had been that simple. The worst part of it was not the lack of sleep, the people thinking we were raising a brat, the screaming, the random violence, or even being suspected of being a child abuser. The worst part was the fear that we were losing our daughter forever, losing the bright and happy child she had been, and we were powerless to stop it.




    January Present



    On Monday, January 12th, 2009, paramedics were called to the school when Jani was brought to the nurse’s office, drooling and unable to speak. It turned out she had developed Dystonia, which is when the muscles in her body begin to lock up. It is a side affect of Haldol, which she had been prescribed after going into a protracted psychotic state for three weeks, where she spent almost all her time in her imaginary world, interacting with us only to eat. During that time, she tried to jump out of her second story bedroom window. By this time, her psychiatrist, having seen her for more than a year, had come to believe that Jani’s psychosis was not caused by her emotional state (bipolar) but that her emotional state was caused by near constant psychosis. Her diagnosis was now psychosis NOS (not otherwise specified). Jani had finally confessed to us that 400 the Cat would scratch her unless she hit and that the rats were afraid of Bodhi and wanted her to hit him to drive him away. It was becoming clear that Jani did not control her imagination. It controlled her. What we thought were just hundreds of imaginary friends were actually command hallucinations. A year before, during her first hospitalization at BHC Alhambra, Jani had tried to tell the doctor and staff that the rats and cats were real to her, but they refused to believe her, because of the idea that five year old’s don’t have a firm grasp on reality anyway. But Jani knew. But they wouldn’t listen to her.




    When Jani went to the emergency room, we were terrified, even though the ER doctor assured us Dystonia was not fatal and was easily treated with Benadryl. We had had enough and were terrified our daughter was either going to kill herself (at four she had started asking at what height somebody would die if they fell but I didn’t put it together even when Jani started hanging off the third floor balcony of our apartment) or that her body would die from the medications. We wanted her hospitalized. We wanted somebody to figure this out. The ER doctor wanted her hospitalized, but the local hospital had no “psych” ward and the social worker was unable to get Jani placed (she was told there were no beds available).



    Yet, Jani had been getting better on the Haldol. The violence had stopped and she seemed more like her happy self. But we had no choice but to lower the Haldol because of the side effects. Still, Jani seemed fine when I dropped her off at school on Friday, January 16th, 2009.


    About an hour into class, she started screaming that she wanted to see Bodhi. She then ran from the classroom and through the halls, trying to throw herself THROUGH doors and windows. In a panic, the school staff corralled her into the assistant principal’s office and called the police. The deputy who responded called the Psychiatric Emergency Team who came and evaluated Jani and took her to UCLA.




    Jani spent the better part of six months at UCLA. They have said that she is the most “complex” case they have ever seen. Unlike Jani’s other hospitalizations, UCLA didn’t just prescribe medications and send her home. They actually tried to figure out what was going on. They performed every test at their disposal, or at least the ones Jani would cooperate with. They ruled out autism. They ruled out Asperger’s. They even ruled out bipolar as their tests, just like the school tests, had shown that Jani had no consistent external “triggers.” They suspected schizophrenia, which does exist in our family history, on both sides, but were reluctant to make the diagnosis.



    Months passed. I spent every day fighting with the insurance company (they denied care for Jani three times, forcing me to appeal to the state-UCLA ate thousands of dollars in charges rather than discharge Jani when she wasn’t stable). Jani qualified AB 3632, which meant that the school district would pay for residential care. Yet the only two residential facilities in the entire state of California that would accept a child her age (both in the LA area) rejected her as being “too staff-intensive.” The only residential placement offered to us was in Texas, which we refused, unwilling to let our daughter go out of state where we could not daily make sure she was okay. We drove to visit her in UCLA every day, which was an hour there and an hour back.



    After three months with little improvement, UCLA diagnosed Jani with child onset schizophrenia. When in a psychotic state, no one could reach Jani. She would bite the furniture until her mouth bled because she said it made her teeth feel better. She hit her head against the wall. She tried to jump out the window at UCLA.


    300 mg of Thorazine stopped all this. It did not drug Jani into a stupor. Rather, it made her social. On Thorazine, she would play with the other kids. On Thorazine, she stopped talking and playing with people and animals that weren’t there. On Thorazine she stopped kicking the hospital dog and staff who she loved (and us).


    But that dose of Thorazine came at a terrible cost. It put her into Dystonia, and because she freed from the psychosis, she was terrified. We held her as she screamed in terror that she couldn’t swallow.



    So the doctors had to come down on the Thorazine. And every day we would watch, heartbroken, as she slipped away from us again into the world of her delusions and violence, which isolated her from everybody but us. And eventually, even we couldn’t reach her anymore.


    Unable to get Jani placed in a safe environment where we could still be a part of her life, I began to consider my original idea of sending Susan and Bodhi away so Bodhi would be safe. This came back to me the day that we visited Jani and had not brought her favorite foods. She starting trying to bite Bodhias if to eat him. She was trying to bite him but crying at the same time, saying “bye, bye, Bodhi. I love you.”


    UCLA had no answers. The head psychiatrist there had never seen a case like this in his thirty years of work.



    Susan came up with the idea of two apartments. We traded in our two-bedroom apartment for two one-bedroom apartments across the parking lot from each other. Susan and I were separating, but it would not be my apartment and her apartment. It would be Bodhi’s apartment and Jani’s apartment, which Susan and I alternating nights so that neither child ever spent more than one night away from either parent.



    We divided the family in half so that our son would not grow up afraid of his sister, so that he would enjoy a safe environment. Jani can be very sweet to him. It is our favorite thing to watch them rolling around on the floor together, laughing. Jani truly loves her baby brother. But sometimes, without warning, she will still try to hurt him because the voices in her head will attack her until she does.



    There are no more rages. Today, the thought disorder and irrational thinking are very clear. Jani only needs to hit once, only once, so that the voices in her head will stop screaming at her and 400 will stop scratching her and Wednesday will stop biting her. She experiences hallucinations in four of her five senses.



    When we are out of the hospital, Jani will rip off her clothes in public if she spills even just a drop of liquid on herself. She will laugh and suddenly bolt into traffic because she sees “80” or another hallucination in the street waving for her to come. She will tell people to be careful of Wednesday because she bites. When I tell her Wednesday can’t hurt other people, she tells me “yes, she can. She can hurt them in their head.”



    Today, Jani is on Clozaril, the most powerful anti-psychotic yet invented, which is reserved for only the most serious cases of schizophrenia that have not responded to other medications. It is illegal to give Clozaril unless there are weekly blood tests to check for the destruction of white blood cells. So far, Jani is not having any side effects. So far, the psychosis seems to be abating. Jani still sees the hallucinations, but they do not dominate her life so much. Yet, Clozaril has no sedative effect on her. Still, she is happy again. She is more herself. She is playing and interacting with other kids. She has friends, and she has found friends amongst the kids in the psych unit, because they don’t judge her. She is not weird to them.




    January Future



    When Jani was born, we were worried about her having ten fingers and ten toes. We banked her cord blood because we were afraid of childhood cancers. It never occurred to us that there would be anything wrong with her mind. You don’t think about that.



    Jani’s future is the great unknown. It is for everybody’s child, but none of us like to think like that. We like to plan. We like to envision. We like to dream for our children.


    We don’t do that anymore.



    We only have one dream, and it is that Jani is still around for us to hold in twenty years.


    We want two things; to keep Jani alive and to allow her enough happiness that she wants to stay alive.


    Everything else is a bonus.


    I don’t care if Jani finishes school. I don’t care if Jani never goes to college. I don’t care if Jani never works a day in her life. I don’t care if she lives with us forever.



    All I care about, all Susan cares about is that Jani is alive and is as happy as her illness will allow.


    The prognosis for child onset schizophrenia is worse than that of adolescent or adult onset schizophrenia. This is because the adolescent or adult has had more time to develop cognitively and emotionally before the psychosis started to eat away at them.


    For that is what it does.




    Jani has a 50/50 chance of living to adulthood. Her intelligence makes her risk of suicide higher. However, having a loving and supportive family makes her risk lower.


    And Jani has that. And that may be all she has. The social services that Jani has qualified for are not equipped or trained to deal with a psychotic child. They modify behaviors, which is pointless when the child is not in control of their own mind. Jani can learn all the right behaviors in the world, but that doesn’t mean she can always fight the voices in her head. She tries. She is the strongest and most courageous person I have ever known.


    Susan and I go forward into the future, feeling very much alone. After so many disappointments with social services, we no longer believe there is any one to help Jani. Or us.



    At least not yet. We are working to change that. This is why this website exists. So that you know that children like Jani exist. And they need your help and understanding. So do their families.


    Our family is not alone. Child onset schizophrenia is extremely rare, appearing in only .01% of the population. But it does exist. There are others, screaming in the darkness for somebody to help them.



    Originally, we wanted to tell Jani’s story because we hoped that someone somewhere out there could help us. Now I am pretty sure that there isn’t.


    I think there have always been children like Jani. I just think most of them didn’t live to adulthood.


    Now I want to tell Jani’s story to let other families know that they are not alone, that their children are not just brats, that they aren’t bad parents, and that maybe even if there isn’t a cure, there is each other.


    I live to keep Jani alive, and all like her.


    For all the hell and all the struggles, it has been a privilege to be her father. It is the greatest thing I will ever do with my life.



    If Jani can tell her own story one day, then I did my job.


    PHOTO ALBUMS


    (at Jani’s Journey)



    Links


    (still under Development)


    Contact me



    Jani’s Journey



    LA Times article on Jani



    ABC News Website article on Jani



    Bipolar Nation Radio


    ( My wife’s internet radio show-once a month she does “Childhood Mental Illness Defined” episode)



    Bipolar Nation Radio Childhood Mental Illness Defined Episode #9



    Bipolar Nation Radio


    Childhood Mental Illness


    Defined Episode #8



    Bipolar Nation Radio


    Childhood Mental Illness Defined Episode #7



    Bipolar Nation Radio


    Childhood Mental Illness Defined Episode #6



    Bipolar Nation Radio


    Childhood Mental Illness Defined Episode #5



    Bipolar Nation Radio


    Childhood Mental Illness Defined Episode #4



    Bipolar Nation Radio Childhood Mental Illness


    Defined Episode #3



    Bipolar Nation Radio


    Childhood Mental Illness Defined Episode #2



    Bipolar Nation Radio


    Childhood Mental Illness Defined Episode #1



    Depression & Bipolar News & Resources (includes journalist John McManamy’s blog). I have vetted these resources and John is very balanced. He provides information and lets the patient and loved ones make their own decisions about what is best for their care.



    More Than Words (a blog by a good friend who has two daughters similar to Jani-This woman is one of my heros. Please check out her blog).



    Blog on living after someone you love has committed suicide



    Williams Syndrome




    From Jani’s Journey

  • you need to read it all to be honest, i did and like you thought ah its all the parents but as it goes on i think there is actually something going on with this poor lil girl however i do also think that it has been made worse by the concoction of meds and treatment she has had as well as the way the parents are treating it however by the sounds of it they dont really have a choice as noone seems to want to help.... after reading that article i have to admit i feel i have connected with jani, as some of what is descrided is what i suffer with altho not as severe. i just cant get her off my mind now.

    it is impossible to be unhappy whilst wearing my baby in a tattoo style mei tai!!!

  • i never knew it could affect children that young.i dont think they're over reacting by having two apartments if the writings are true.they're trying to whats right by both their children.but i cant watch the video so i cant see it from that perspective.

  • i never knew it could affect children that young.i dont think they're over reacting by having two apartments if the writings are true.they're trying to whats right by both their children.but i cant watch the video so i cant see it from that perspective.


    i think it was the only option they had left after not getting the help that they searched for... i think if they had the right help it would be possible to stay together

    it is impossible to be unhappy whilst wearing my baby in a tattoo style mei tai!!!

  • Impossible to know what to make of the situation, from those few minutes of film.

    The video makes Jani sound like a typical child testing the boundaries and having temper tantrums, but from the text Ness posted, it does sound like she has some behaviour issues beyond that of an average child her age. Whether they're caused by schizophrenia though, I wouldn't like to say, without reading/watching more of her.

    I've been tripping from sipping the dripping dirty water tap,
    i've been thinking i'm drinking too many drinks all by myself.
    I've been poking a voodoo doll that you do not know I made, for you, of you.

  • That sounds like a very sad story. I think even from watching the video the parents seem to need a lot of help. They didn't seem to know what to do. When I read the post by nessnessinadress, I realised that my original suspicion was right. They had never experienced such behaviour before, they had very little sleep, they only got her into a hospital where there were adolescents because that is what they could afford on their insurance. I am not that sure of her diagnosis but I don't think the parents are so messed up and awful as some people here have mentioned. Most parents never have to deal with sleep problems with children to begin with, never mind the other problems.


    When I have met parents in the UK dealing with children who behaved differently from their peers from a young age, they usually have the support of the NHS or at least some state support. Those parents did not. I don't think any of her behaviour is covered in any parenting books and when you have young children you normally can speak with friends and look at their children to get an idea of how to deal with new challenges but this family couldn't because the child was behaving differently.


    I can't help wondering if appropriate intervention would have saved Jani from having to take the medication she was on. It seems a bit much for such a young child. She seemed very intelligent and may have needed a lot more than her parents could offer her in terms of stimulation. If she is gifted then she could be at risk of emotional trauma that a lot of young children would not experience because they would not understand a lot of complex ideas that she might have. It is sad the hospital treated her the way they did because it looks like her violence became worse during the mother's pregnancy and no one took in consideration that she may well have become mentally ill but also with her level of intelligence she may have needed a lot more emotional support than a child of her age.


    I feel very sad for her that she was put in an adolescent unit when she was such a young child. I also wish they would find a better approach than medication on such a young child because it can have a lasting effect on her.

  • I can't deal with Chlorpromazine, never mind that poor child. Did anyone else notice the bags under her eyes? I had the same thing. The cause? Oh that would be the faces in my walls keeping me awake at night. From the schizophrenia? I hear you say. Nope, from the chlorpromazine. I had drugs to deal with the schiz, drugs to deal with the side effects from the schiz drugs and drugs to make the hallucinations go away.


    That child has quite obviously cottoned on to the fact that her "friends" get her attention. Whether or not she realises the drugs are slowly frying her brain, though, is anyone's guess.

  • I can't deal with Chlorpromazine, never mind that poor child. Did anyone else notice the bags under her eyes? I had the same thing. The cause? Oh that would be the faces in my walls keeping me awake at night. From the schizophrenia? I hear you say. Nope, from the chlorpromazine. I had drugs to deal with the schiz, drugs to deal with the side effects from the schiz drugs and drugs to make the hallucinations go away.


    That child has quite obviously cottoned on to the fact that her "friends" get her attention. Whether or not she realises the drugs are slowly frying her brain, though, is anyone's guess.



    I completely agree with you. Especially because she is so young even she may not know the difference between the effects of the medication and what is meant to be her 'illness'. Having experienced medication induced hallucination myself it makes me shudder to think that poor child is experiencing that.

  • it seems that she was experiencing the same hallucinations before she was put on the meds, and has done through out all the different changes in meds, so i cant see why you say the meds cause the hallucinations. they may change the nature of them, but this child was seeing them long before the meds were used.


    it seems to me that Jani may be suffering a sleep disorder primarily. lack of sleep can cause terrible delusions, and to be unable to reach rem sleep on a regular basis can play havock with the mind. im surprised no one has mentioned it before. the inability to sleep for an early age may well be the cause of the problem, not a symptom.


    whether or not she has schizophrenia i cant say, she certainly has traits of it, the hallucinations and dissasocoiative episodes of violence certainly fit the pattern, as do her feelings of obligation and fear if her 'friends' tell her to do something. just because its unusual for a child to get it doesnt mean its impossible.


    i really feel for her parents, they are by no means perfect parents but they are trying their best to help thier daughter. i ask all those people who condem them to try living all those years in their shoes before condeming them. we are none of us born perfect parents, we have to learn, and from the look of thier other child, who seems healthy and happy, they are not doing a bad job.


    i dont support the use of antipsychotics lightly, i know from watching my ex husband battle with the side effects how terrible it can be, but i also know what it is like to live with someone who is psychotic, and it is far harder than almost anything else in life. trying to keep them safe, and keep our lives together, trying not to forget what reality is like yourself. i could leave, at the end of the day, her parents can't. well they could dump her on social services, who would probably have medicated her anyway, bounced her round foster homes till she was an adult then turned her out to fend for herself. to me it is infinetly preferable that she stay with the parents who love her, despite them not being able to cope with her unmedicated.

    Turned on, tuned in, loved up, trippin out, freaky on the outside, shiny in the middle.

  • it seems that she was experiencing the same hallucinations before she was put on the meds, and has done through out all the different changes in meds, so i cant see why you say the meds cause the hallucinations. they may change the nature of them, but this child was seeing them long before the meds were used.


    I'm not suggesting the drugs are causing the hallucinations. But I have no doubt in my mind that they will be making them worse. Besides, there's no way of knowing whether or not the child's imaginary friends weren't just that! My children have imaginary friends. I'm not abuot to rush out and put them on Prozac!


    It's just as plausible to suggest that the child has some kind of psychic ability. Or maybe shes just a smart kid who's learned that when she had imaginary friends every adult within 100 miles freaked out and it got her attention. Who knows, I seriously doubt drugs are the answer, though, nor do I agree with their choice to divide the family. I imagine parents who have children with ADHD struggle to prevent their child from lashing out, they don't split their family up though...it's just not a healthy coping mechanism.

  • who are we to decide what is a healthy coping mechanism? would leaving that toddler in the same house with his violent sibling be any more healthy?


    maybe she did start it for attention, but most kids grow out of that, they stop, the parents said they tried everything else they could think of to stop it before resorting to meds, and they couldnt control her. now some may say well they are just bad parents, but her behavior was extreme, and she hardly ever slept, can you imagine how physically draining that is, not just for the first few months or years but for 5, 6, 7 years? i can tell you from experience what it is like to have a delusional person keep you awake night after night, i've been there done it and it is hell on earth.with a new baby to look after as well it must have been terrible for them, it was hard enough for me with a 16 month old baby.



    how is it you know the drugs make the hallucinations worse? they affect people in different ways, one persons experience with them is not the same as anothers. is this a medically proven fact, are their studies done? and if so, why would they give it to her if it was going to make the delusions worse, from what the parents have said she is far more in control of her behaviour on the meds, they stated that the new ones have no sedative effect, but allow her control over her 'friends', so she doesnt have to do what they say. surely thats a good thing?

    Turned on, tuned in, loved up, trippin out, freaky on the outside, shiny in the middle.

  • Meh, I just think "who are we to judge", It's easy to look at the situation and blame the parents, but I am sure they are trying to do the best for their child also I am sure the people who are treating her are far more clued up on this than we are.

  • As far as know, actual schizophrenia is very very rare and there have been very few authentic cases. That doesnt mean to say that there arent people out there displaying similar symptoms, who have indeed some other form of mental health problem.
    I dont understand what they are trying to imply by the ultrasound and post birth comments? Its not unusual for babies to have their eyes open during scans, and yes some of them do hide, but not all. Apparently they dont like the sound of the ultra waves. And as for following people around the room after birth and babies not focusing on things, what about it? My son did this. I dont get the relevance. Also, I had 3 imaginary friends pre school age. I wasnt medicated for it.
    I am wondering if they are trying to hard to have a child who is 'unique', and they think this is it.


    Oscar a few hours old, looking at his Gran, possibly.

  • I think them harping on about how she was when she was just born is possibly them trying to come to terms with her problems, you know when you look back on things and try to link them all together to make you feel better? That is what I immediately thought anyway. I am not a cynic. Lol.


    As far as know, actual schizophrenia is very very rare and there have been very few authentic cases. That doesnt mean to say that there arent people out there displaying similar symptoms, who have indeed some other form of mental health problem.
    I dont understand what they are trying to imply by the ultrasound and post birth comments? Its not unusual for babies to have their eyes open during scans, and yes some of them do hide, but not all. Apparently they dont like the sound of the ultra waves. And as for following people around the room after birth and babies not focusing on things, what about it? My son did this. I dont get the relevance. Also, I had 3 imaginary friends pre school age. I wasnt medicated for it.
    I am wondering if they are trying to hard to have a child who is 'unique', and they think this is it.


    Oscar a few hours old, looking at his Gran, possibly.