Six year old with schizoprenia

[som1luvsmi]

From the LA Times: (http://www.latimes.com/features/health/la-he-schizophrenia29-2009jun29,0,4834892.story)

The parents of a 6-year-old schizophrenic search for help against daunting odds for a patient so young and a case so severe.

.....

Jani normally likes animals. But most of her animal friends -- cats, rats, dogs and birds -- are phantoms that only she can see. January Schofield has schizophrenia. Potent psychiatric drugs -- in doses that would stagger most adults -- seem to skip off her. She is among the rarest of the rare: a child seemingly born mentally ill.

She suffers from delusions, hallucinations and paroxysms of rage so severe that not even her parents feel safe. She's threatened to climb into an oven. She's kicked and tried to bite her little brother. "I'm Jani, and I have a cat named Emily 54," she says, by way of introduction. "And I'm Saturn-the-Rat's baby sitter."
...

"Child-onset schizophrenia is 20 to 30 times more severe than adult-onset schizophrenia," says Dr. Nitin Gogtay, a neurologist at the National Institute of Mental Health who helps direct the children's study, the largest such study in the world on the illness.

"Ninety-five percent of the time they are awake these kids are actively hallucinating," Gogtay says. "I don't think I've seen anything more devastating in all of medicine."

[Zoombie]

Shit.

[CACTUSWENDY]

Ninety-five percent of the time they are awake these kids are actively hallucinating," Gogtay says. "I don't think I've seen anything more devastating in all of medicine."

That is so unreal...no pun intended. Wow.

[Christine N.]

That's enough to make me cry this morning. And hug my six year old.

[scarletpeaches]

That's heartbreaking.

Yeah. Me, saying that. But it just is.

[icerose]

That's awful, my BIL has paranoid schizophrenia, his is severe enough to automatically qualify for SSI, they didn't even hassle him about it, just boom, he was on. He can't hold down a job and that's not for lack of trying, it's the cycle. Thankfully medicine does work for him, he can live independantly and non-violently, he willingly takes his treatments because he has seen himself off them. I'm trying to wrap my head around the idea of a kid being 20-30 times worse. That's scary awful. This kid may end up institutionalized for the rest of her life if they can't find a treatment for her and fast. This is one of those kids where you fear for their whole family.

[Exir]

Wow. This must be very very very very hard for her. And must be a very daunting task for her parents and psychologists.

ETA: and the extent of it. NINETY-FIVE percent of the time!!!!

[SHBueche]

I couldn't access the link, but you provided plenty in your post, thank you. Never heard of a person this young being diagnosed as schizophrenic. Very sad, I suppose the only positive in the story is that she is being treated at such a young age and perhaps with early intervention she can lead a relatively normal life.

[Dommo]

That is some creepy shit. It's too bad that the family can't really get any assistance, as living with a schizophrenic is downright dangerous. Hopefully things work out in the future, and at some point the family can put their daughter in a specialized facility for the mentally ill.

[Exir]

Seeing the videos make my heart break.

[icerose]

I couldn't access the link, but you provided plenty in your post, thank you. Never heard of a person this young being diagnosed as schizophrenic. Very sad, I suppose the only positive in the story is that she is being treated at such a young age and perhaps with early intervention she can lead a relatively normal life.

The problem is the treatments are not working. It said in the article that the heavy doses of anti-psychotics are bouncing off her. That's really bad. If her condition is set itself up to be untreatable, her family is in grave danger. It's not because the kid wants to hurt their family, it's because they can't tell the difference between reality and fantasy.

In the case of my BIL he'd go through this cycle before his meds. He'd be fine going to work then within a week he'd see a glance or people talking and it'd be "They're watching me." Then the next week as he saw more people talk and more people glancing, even if they weren't even looking at him it'd be "They're talking about me." The next week would be "They're following me." Then the next week would be "They're out to get me." The next week the voices would be screaming "I have to get them before they get me." And that's when he'd quit his job. He was scared to death he would hurt someone.

Even on his meds though, he can't be around people regularly day after day or a smaller paranoid scale begins. Even a 15 minute trip through wal-mart by the end he'll be convinced various other customers have been following him and are out to get him. At the end of the cycle he'll go manic depressive, stay in his room for weeks, then emerge right before the beginning of the next cycle and try again. Now he doesn't have to do that and he's doing okay, which we're so thankful for.

If hers is 20-30 times worse, if she's always under that haze of dilusions, that's just scary, and very very dangerous. The condition bypasses the logic sector and goes more for instinct and self preservation. It's really sad and very scary to see someone who's trapped behind that fog.

[regdog]

:(

[Jersey Chick]

wow. That's terrible... :(

[icerose]

I just watched the video. Th fact that her parents have already gotten two separate apartments to keep her away from their son at night, says a lot.

[Alpha Echo]

That is so sad. I don't even...I mean what do you do? How, as parents, do you handle that? I really feel for them. It must be so heartbreaking, and then to actually fear for their lives as well...and how scary for the child! Not knowing what's real and what isn't.

[Kitty Pryde]

I read this article yesterday and I thought it was very powerful. I used to work at a special needs summer camp and we had a handful of kids with psychiatric disorders. It's very scary to see a little kid just lose it and then ten minutes later be crying and clinging to you and apologizing when they realize what they did and that they couldn't control themselves. I can't imagine what those parents go through dealing with it full time. And as much as I don't like that doctors overprescribe psych meds for little kids, in some cases (like this one!) they are the only way to even come close to approximating a normal/safe lifestyle.

That is some creepy shit. It's too bad that the family can't really get any assistance, as living with a schizophrenic is downright dangerous. Hopefully things work out in the future, and at some point the family can put their daughter in a specialized facility for the mentally ill.

They do have some assistance. The article mentioned in-home staff. I'm guessing the girl is officially considered to have a disability and she probably qualifies for disability benefits (here in Cali in-home care for the disabled is called IHSS) and SSI.

[Christine N.]

The problem is the treatments are not working. It said in the article that the heavy doses of anti-psychotics are bouncing off her

My guess would be the rebound effect. IIRC, most textbook cases of schizophrenia happen in the 20's? And I'll bet they're using meds formulated for adults on this poor thing. Many meds that have one effect on adults have the opposite effect on children, called the rebound effect. Many sedatives given to adults, for example, make children hyper. I can only imagine what adult anti-psychotics would do to a child.

I hope they can hit upon the right thing and salvage something of this girl's childhood, and hopefully the adult meds will work for her when she's older.

[som1luvsmi]

Susan proposes that the couple trade in their two-bedroom apartment and rent two one-bedroom units in the same complex. One parent would live with Bodhi and one with Jani on alternating days.

The group discusses the stress on the couple. Both Michael and Susan have relatives who were mentally ill, and both struggle with depression and take antidepressants. They receive no help from their families.

<...>

The two apartments are ready. Jani will live in 925; Bodhi, just across the parking lot in 1035. Jani's apartment is modeled after the psychiatric ward. Her room has only a bed so that, during a tantrum, she can be placed where she won't hurt herself. The living room is called the day room and is packed with toys and games. The kitchen is the supply room.

The Schofields bought walkie-talkies to communicate between apartments. Michael has written Jani's schedule on a large white board, just like the hospital staff did: 14:00, occupational therapy; 15:00, quiet time; 16:00, outdoors; 17:00, dinner; 18:00, recreational therapy.

Whoever stays with Jani at night is referred to as her "staff."

The Schofields have sought home-based special services but aren't hopeful. They've tried to get respite care from a center that helps people with developmental disabilities but were told the service was available only for parents of autistic children.

"We've developed sort of a bunker mentality," Michael says. "Every time Susan and I have relied on other people, we've been disappointed."So, it sounds to me like that they've applied for services, but aren't counting on it. They've sought help before, but it seems that most places are either unwilling or unequipped to deal with a patient so young. Certain types of disability places won't help them because they are geared toward autistic children, not children with severe mental disorders. Their families don't help at all.


Jani opens the door to a small balcony where her parents have set up an easel with paper, markers, paints and chalk. She grabs chalk, scribbles on the board and looks up at her parents, grinning.

"Oh-oh," says Susan, with a sigh. She steps back and calls for Michael to have a look. He does. He says nothing.

400
For those of you who were unable to access the article, 400 the Cat is her oldest(I think) and most dominant hallucination, the one that tells her to do bad things. When she was released from the hospital, it had seemed that 400 had taken a vacation. The fact that he showed up their first day home was disheartening, to say the least.
I believe it was the video that said that 400, and a few others, are the ones she won't let go of, even when the medication is working.

My hope is that the family will be able to find some kind of help, to create some kind of balance in their lives, so that they're not torn completely apart.

[Kitty Pryde]

So, it sounds to me like that they've applied for services, but aren't counting on it. They've sought help before, but it seems that most places are either unwilling or unequipped to deal with a patient so young. Certain types of disability places won't help them because they are geared toward autistic children, not children with severe mental disorders. Their families don't help at all.



Thing is, in California people with developmental disabilities (mental retardation, cerebral palsy, autism, and the like) can get state funding for lots of services (anything from child care to aquatic therapy to life skills training. It's because of the Lanterman Act If you don't have one of those sorts of disorders, you're out of luck. This is probably the sort of thing they were turned down for. Fun fact: if this kid was dual-diagnosed with ADHD or a mild cognitive impairment, she would qualify for loads of hours of all sorts of service.

I speculated they get IHSS in-home care because at the end of the article they said, " Whoever stays with Jani at night is referred to as her "staff."" Though maybe they were talking about the parents. I suspect she is a Medicaid recipient (and thus qualified for IHSS) because she gets a lot of services. It could just e really good health insurance, though.

[som1luvsmi]

Yes, since they made her apartment to be similar to the psych ward, the parents call themselves "staff" when taking care of her.

I live in LA, too. :) I'm really surprised that she hasn't had a multiple diagnosis. But she has her own caseworker, so they must qualify for some kind of help, right? Or is the caseworker just because it was the county who took her to the hospital from school?

[Kitty Pryde]

I think one can get a caseworker from any number of agencies if said agencies feel that one is at risk and in need of service from the agency. (For instance: my partner supervises caseworkers at a nonprofit. These caseworkers serve a bunch of adults, and those adults all ALSO have a caseworker at their nearest Regional Center. Then sometimes if they end up at the hospital they might get a hospital caseworker involved in looking out for them.)

This kid could have a caseworker from the hospital, the school district, DCFS, or a local health or nonprofit agency.

[Cranky]

From what I understand about the Regional Centers in California, they can be super-strict about who gets services from them, and it can vary by location. That is, services provided and who qualifies for them can differ from Northern California to Southern. I've heard of kids with PDD-NOS getting turned down for access to these services because they didn't have "full-blown" autism. (Which cracks me up in a way, since you can have PDD-NOS and be severely impacted...just not in enough areas to qualify for a diagnosis of Autistic Disorder).

Anyway, maybe this is the reason the family can't get services for their daughter, and my God, that just breaks my heart. That poor little girl.

[Kitty Pryde]

From what I understand about the Regional Centers in California, they can be super-strict about who gets services from them, and it can vary by location. That is, services provided and who qualifies for them can differ from Northern California to Southern. I've heard of kids with PDD-NOS getting turned down for access to these services because they didn't have "full-blown" autism. (Which cracks me up in a way, since you can have PDD-NOS and be severely impacted...just not in enough areas to qualify for a diagnosis of Autistic Disorder).

Anyway, maybe this is the reason the family can't get services for their daughter, and my God, that just breaks my heart. That poor little girl.

Schizophrenia doesn't qualify for services under the Lanterman Act at all (even though it's obvious this kid's development is impacted in a way similar to a kid with an ASD), because of the way the law is written. Like I said, if she was severely impacted by mental illness and mildly impacted by ADHD or DD, she would get loads of service hours.

Yeah, funds are tighter now in some regions. I've actually heard of people lying in their assessments of the client's abilities, and saying they were capable of less than they really were, in order to actually qualify for hours of service.

[Cranky]

Schizophrenia doesn't qualify for services under the Lanterman Act at all (even though it's obvious this kid's development is impacted in a way similar to a kid with an ASD), because of the way the law is written. Like I said, if she was severely impacted by mental illness and mildly impacted by ADHD or DD, she would get loads of service hours.

Yeah, funds are tighter now in some regions. I've actually heard of people lying in their assessments of the client's abilities, and saying they were capable of less than they really were, in order to actually qualify for hours of service.

Oh, sorry. I thought that maybe other disabilities might be covered under that...I only ever paid attention to the stuff pertaining to autism. We considered moving there before the economy tanked, so we checked this stuff out, but not that deeply. Thanks for clearing that up for me. :)

[mister_lister]

I am not afraid to admit that I have schizophrenia and prior to medication I was a complete basket case. Very rarely are schizophrenics violent and most adults find some level of recovery with medication. I have been mainly symptom free for 7 years, no relapses.

The problem with dealing with a child is that the brain is not full developed and not only are most medications not very effective in severe cases, they also may effect the brain during it's development AND side effects of the medications are usually more severe.

Mostly the cause of Schizophrenia is theorized to be an imbalance of the brain chemical "Dopamine". Current Anti-psychotic Medications attempt to balance that brain chemical.

Things could change as this child gets older and there is absolutely no reason to loose hope for the future. Things are bad now, but that does not mean they will stay that way.

My heart goes out to the family and the child.

[Glenda]

Heartbreaking, so heartbreaking.

[benbradley]

From the LA Times: (http://www.latimes.com/features/health/la-he-schizophrenia29-2009jun29,0,4834892.story)
"Child-onset schizophrenia is 20 to 30 times more severe than adult-onset schizophrenia,"
So how did they come up with the "20-30 times more severe" figure?

[Dommo]

I was wondering the same thing. Perhaps it has to do with the amount of medication it takes to subdue the hallucinations?

[icerose]

So how did they come up with the "20-30 times more severe" figure?

My guess would be the fact they're under dilusions all the time. My BIL as stated earlier in the thread is considered a pretty severe case and he'll go for weeks without hearing voices or seeing things that aren't there without meds, and the violent cycles are also several weeks in the making.

Whereas this little girl is under dilusions 95% of the time?! And her violent episodes are instantaneous. Those are quite a bit more severe than the severe adult cases. I would probably quantify that by a good 20-30 times more severe, so it looks like it fits to me.

[Williebee]

excuse me, i have to go call my kid now, and tell her how grateful I am that I have her.

[Rebekah7]

I wonder what will happen when she grows up. Even if the medication starts to work then, who knows what the effect of having delusions during her formative years will be?

I hope they find a way to help her.

[Kitty Pryde]

LA Times just published an update on her and her family's situation: http://www.latimes.com/features/health/la-hew-jani-update9-2009jul09,0,7752925.story
"For Jani Schofield, some progress -- and major setbacks"

[darkprincealain]

Thanks, Kitty. Sad stuff, though. :(

[Kitty Pryde]

LA Times just published a six month update on the story: http://www.latimes.com/news/nationworld/nation/la-sci-jani29-2009dec29,0,2251427,full.story

[icerose]

LA Times just published a six month update on the story: http://www.latimes.com/news/nationworld/nation/la-sci-jani29-2009dec29,0,2251427,full.story

I am amazed by what that family is doing. I can't imagine the patience and effort that it takes just to get through the day. I'm glad to see they are starting to get some help but I really feel for them.

[Exir]

Same here, icerose. On the one hand, it's sad that so very few institutions would have Juni. On the other hand, it's very heartwarming that so many people are helping her family cope with such an overwhelming responsibility.

[AryaT92]

Very interesting.

[~*Kate*~]

I didn't tear up until I read about the local psych students who took her on as a project.

[Zoombie]

Is it bad that I read this case...and half of me is screaming in horror, half is sobbing its eyes off...and half is going, "Wow, that would make an *awesome* novel."

[Exir]

...and half is going, "Wow, that would make an *awesome* novel."

Funny thing. Watch Ingmar Bergman's "Through A Glass Darkly". Synchronicity strikes :D

[dancingandflying]

Heartbreaking. Just... heartbreaking.

[Diana Hignutt]

And I thought I was evil. Why would someone post a story this depressing during the holidays? (yeah, I know but it's so damn sad.) May the family find the help they need. Well, the girl seems to at least have a very caring family, and that can make all the difference sometimes. Here's hoping.

[stormie]

I've been told by neurologists and psychiatrists that doctors only know about 10% of the workings of the brain. More--much more--research needs to be done in this area. I really feel for that family.