I found this article quite disturbing

[Greenmama2]

As the parent of a child who stood out similarly from 1-3 (not to mention had similar sleep patterns). Thankfully our concerns with her now are much more tame and life with her isn't particularly dangerous.

http://www.smh.com.au/lifestyle/edge-of-the-abyss-20120820-24h4r.html

I hope their lives are more peaceful from now on.

Edited to add the byline

[Michael Schofield thought his young daughter, Janni, was a genius, until he realised her bright mind masked an inner darkness.

 

 

Read more: http://www.smh.com.au/lifestyle/edge-of-the-abyss-20120820-24h4r.html#ixzz24kVeFtmB

[2smartones]

I remember seeing her on one of those health channels a couple of years ago. Very disturbing.

[IsabelC]

That's an amazing story. Terrible how it took the family so long to get a diagnosis though.

[Barbara H]

They have done quite a bit of media from the Discovery Channel to a new book the father has out. The role that the parent's beliefs about IQ played are one of the more interesting parts of the book. When the child acted out or had difficulties socially her behavior was primarily attributed to her high IQ so they didn't try what many might have considered some of the more basic approaches to coping with unusual behaviors.

 

If anyone is having concerns about their kids, I would suggest http://www.amazon.com/Misdiagnosis-Diagnoses-Gifted-Children-Adults/dp/0910707642 would be a good place to start.

[Parrothead]

Wow. What a terrible thing for that family to have to go through.

[roanna]

I just read the whole article and it saddened me but brought back some sad feelings. Over 2 1/2 years ago we walked into my husbands emergency doctor appointment to find out what was wrong with him. (this ends up well) we were there because my husbands weird comments turned drastically into full on paranoia. Every police officer or man in suit was out to arrest him. He had number OCD, checking OCD, symmetry OCD totally consuming. That first visit was the most scary time in our marriage of only 5 years. The doctor was afraid he had schizophrenia.

 

Through a year of cognitive behavioral therapy (CBT) and some meds and a diagnosis of severe OCD with paranoia thoughts ..but not schizophrenia...we had only slightly decreased his problems. Life was so incredibly sad living with someone who has paranoid thoughts.

 

I happened to stumble upon an article from the NIH that said there was a connection with gluten and OCD. I put the plan in motion and made my husband promise to only eat what I gave him for a month. Within 3 days he was a different man. Within a month he decided to go off his medication because it wasn't helping anyway. I was scared it would make a difference if he went off.

 

It's now a year later and my husband has clear thoughts NO paranoia. He could care less about police and is functioning high in his new job. I am so sad for their family because I caught a small glimpse of life with a loved one with mental illness just because of a gluten intolerance.

[MinivanMom]

They have done quite a bit of media from the Discovery Channel to a new book the father has out. The role that the parent's beliefs about IQ played are one of the more interesting parts of the book. When the child acted out or had difficulties socially her behavior was primarily attributed to her high IQ so they didn't try what many might have considered some of the more basic approaches to coping with unusual behaviors.

 

If anyone is having concerns about their kids, I would suggest http://www.amazon.com/Misdiagnosis-Diagnoses-Gifted-Children-Adults/dp/0910707642 would be a good place to start.

 

I've seen two specials on this particular family (or maybe I saw the same special twice :confused:). This was the thing that really struck me. The parents had no limits, no discipline, no guidance of any kind since everything was due to her high-IQ and they didn't want to stifle her creativity. Then they got the schizophrenia diagnosis. Now they appear to have no limits, no discipline, no guidance of any kind since her behavior is due to the schizophrenia. I remember looking at my husband and saying, "[dd8] would have been diagnosed as schizophrenic if she was being raised by those parents!"

 

I don't mean to minimize what those parents are going through nor am I suggesting that she was misdiagnosed. I'm not sure what it was about the parents' interactions with her. Here was this child with a wild imagination and the parents are conversing with her imaginary friends. Here was this child acting out and apparently nobody has the ability to tell her, "No," or reign her in. Throw in some strong anti-psychotics and wham! It's worth watching video of this girl yourself. I found all of the footage of the way the parents interacted with her to be much more disturbing than her actual behavior (though she is currently on meds).

Edited August 29, 2012 by MinivanMom

[8filltheheart]

I know nothing about this family other than what I just read in the article, but coping w/misdiagnoses and multiple failed drug trials is unfortunately not an uncommon experience in terms of childhood mental health care. Our 20 yr old ds was diagnosed as bipolar by a dr that would not listen and prided himself on being "cutting- edge" and diagnosing bipolar patients as young as 2. (insert horrified screaming here!) Our ds has multiple issues, but bipolar is not even close.

 

In order to understand just how hard it is to get good mental health care for children, try equating it to how you envision seeking quality health care in a poor third world country. There are not enough mental health professionals. You get put on waiting lists for months. Once you get in a receive a diagnosis, they send you home w/unapproved for children drugs and you basically are left on your own monitoring a child's reactions as a non-dr as to whether or not they are working or causing complications. (I found our ds curled up outside our house carving 666 into his arm after being put on one drug for anxiety.)

 

I know nothing about this family, but dealing w/any of these type of mental issues in your own children can be a nightmare. I wouldn't even begin to attempt to determine what they did right or they did wrong.

[roanna]

Anyone that is dealing with a family member that is not 100% into reality is having a horrific time. I dealt with things the way I did and at times I am sure it wasn't the best. You do what you can to make it through.

[Parrothead]

This was the thing that really struck me. The parents had no limits, no discipline, no guidance of any kind since everything was due to her high-IQ and they didn't want to stifle her creativity. Then they got the schizophrenia diagnosis. Now they appear to have no limits, no discipline, no guidance of any kind since her behavior is due to the schizophrenia.

I'm glad I'm not the only one who noticed that. I got that just from reading the article.

[MinivanMom]

Anyone that is dealing with a family member that is not 100% into reality is having a horrific time. I dealt with things the way I did and at times I am sure it wasn't the best. You do what you can to make it through.

 

:grouphug: Absolutely. I have had to deal with family members with severe mental illness. Anyone who hasn't dealt with these sorts of issues (psychiatrists, psychologists, long-term hospitalizations, the 72-hr revolving door, constantly adjusting meds, etc, etc), they just can't understand. It's a tough road. I can only imagine how much tougher it would be with a child where there can be even less access to appropriate care or meds.

 

However, I think that's why the video of this girl seemed off to me. I know what it's like to deal with people who are dealing with serious mental issues and this situation just didn't seem to quite fit it. She just seemed like a normal, creative kid. What I was watching just didn't fit with my personal experience. I don't know if my own experience is too narrow, but she just seemed like a normal, highly creative, very spoiled (and thus badly behaved) child. Schizophrenia is a big diagnosis to put on a very young child.

 

I think you would just have to watch the documentaries yourself and draw your own conclusions. This was just my personal reaction at the time. I fully acknowledge that I bring my own experiences (and baggage) with me.

[Barbara H]

 

I happened to stumble upon an article from the NIH that said there was a connection with gluten and OCD. I put the plan in motion and made my husband promise to only eat what I gave him for a month. Within 3 days he was a different man. Within a month he decided to go off his medication because it wasn't helping anyway. I was scared it would make a difference if he went off.

 

It's now a year later and my husband has clear thoughts NO paranoia. He could care less about police and is functioning high in his new job..

 

Wow, it is fortunate you ran across that article and it is really important that you share this experience because he's certainly not the only one who has experienced this.

 

I am sure we can all agree that mental health problems can be incredibly difficult for families to cope with and, we need much better availability of mental health services for kids. I don't think we can ever know what is happening with another family, if you read the book though it is clear that the daughter's high IQ was a factor that came in play with trying to sort out what was going on.

[IsabelC]

I don't think we can ever know what is happening with another family, if you read the book though it is clear that the daughter's high IQ was a factor that came in play with trying to sort out what was going on.

 

:iagree:

[Greenmama2]

Does anyone have a link to or the titles of the book or documentaries?

[....]

I just read the whole article and it saddened me but brought back some sad feelings. Over 2 1/2 years ago we walked into my husbands emergency doctor appointment to find out what was wrong with him. (this ends up well) we were there because my husbands weird comments turned drastically into full on paranoia. Every police officer or man in suit was out to arrest him. He had number OCD, checking OCD, symmetry OCD totally consuming. That first visit was the most scary time in our marriage of only 5 years. The doctor was afraid he had schizophrenia.

 

Through a year of cognitive behavioral therapy (CBT) and some meds and a diagnosis of severe OCD with paranoia thoughts ..but not schizophrenia...we had only slightly decreased his problems. Life was so incredibly sad living with someone who has paranoid thoughts.

 

I happened to stumble upon an article from the NIH that said there was a connection with gluten and OCD. I put the plan in motion and made my husband promise to only eat what I gave him for a month. Within 3 days he was a different man. Within a month he decided to go off his medication because it wasn't helping anyway. I was scared it would make a difference if he went off.

 

It's now a year later and my husband has clear thoughts NO paranoia. He could care less about police and is functioning high in his new job. I am so sad for their family because I caught a small glimpse of life with a loved one with mental illness just because of a gluten intolerance.

 

Hi, you pm'd me earlier this year about these experiences, because I was having severe problems with my 7 yro (she was paranoid about Anthrax, was having screaming rages, etc). When I tried to talk to the pediatrician about these things, she said stuff like, "Well, it's because we have such a big family and she's jealous of her sister" or "She's just doing this stuff for attention" or "It's the homeschooling." It was horrible. We cut gluten out of her diet and it made a huge difference (actually, we cut most processed food out of her diet as well). She has been so calm. All the fits stopped and she's stopped the constant hand-washing. Suspecting that she might have some serious food allergies/intolerances, we took her last week to get the full allergy panel and we found out that she's also allergic to eggs. :( Sheesh.

 

Anyway, I just wanted to say "Thank-you!" for posting your story. I never thought that food allergies or intolerances could be linked to behavior like that.

 

OP, sorry if I went off topic.

[roanna]

No one in all the appointments suggested taking gluten out. My husband attended regular weekly psychiatric appointments and these are the top people in the field of OCD etc and no one even mentioned trying a diet change. I want to take the time out to write them and tell them but I haven't gotten around to it.

 

My husband doesn't even remember many of the most traumatic events that happened. At one point a downed tree caused electricity and phone lines to go out and he said "they" were trying to fix it so that "they" could get him. I just cried and cried. He doesn't remember that whole scenario.

 

I'm not on a crusade to say go gluten free world! I just wish someone had told us, someone knew, so I share when I can in case it would benefit someone.

 

I am SO glad it helped you. Makes me so happy. My husband is so good about not eating gluten even though he's sad he can't eat pizza. He is now able to eat hard cheeses and lactose free products. His stomach lining has healed a lot. But gluten issues are not reversible as far as studies show now.

[Katy]

No one in all the appointments suggested taking gluten out. My husband attended regular weekly psychiatric appointments and these are the top people in the field of OCD etc and no one even mentioned trying a diet change. I want to take the time out to write them and tell them but I haven't gotten around to it.

 

My husband doesn't even remember many of the most traumatic events that happened. At one point a downed tree caused electricity and phone lines to go out and he said "they" were trying to fix it so that "they" could get him. I just cried and cried. He doesn't remember that whole scenario.

 

I'm not on a crusade to say go gluten free world! I just wish someone had told us, someone knew, so I share when I can in case it would benefit someone.

 

I am SO glad it helped you. Makes me so happy. My husband is so good about not eating gluten even though he's sad he can't eat pizza. He is now able to eat hard cheeses and lactose free products. His stomach lining has healed a lot. But gluten issues are not reversible as far as studies show now.

 

 

The GAPS diet creator says they are reversable, but I can't seem to manage to stand that diet for long. You might look into it: http://www.gaps.me/ Lots of bloggers have had great effect on all sorts of neurological issues by following the diet..

[roanna]

I don't think my husband would be a candidate for that. I'm not sure about people who have neurological disorders due to it. Our nutritionist was guessing that the gluten was not being processed in his gut but his brain. That he may lack the necessary enzyme to process gluten.

 

I did do the diet like gaps, escapes my mind right now. I started the journey trying to find a reason for my son's issues of severe hyperactivity and aggressiveness and it was months after solving my husband's issue that I finally found out what my son's ADHD symptoms were being caused from....lack of protein in his diet. So simple and easy.

 

So now every meal he has to have at least half of it proteins. If we are out and about and he hasn't eaten in a while he gets aggressive and hyper and I just snag some slices of cheese and within 20 minutes he's a good little boy again.

[deacongirl]

Another perspective on the parents.

http://spitbristleandfury.wordpress.com/2009/07/22/january-first/#comments

 

I have to wonder what the outcome would be with some appropriate limit-setting by the parents.

[Barbara H]

Does anyone have a link to or the titles of the book or documentaries?

 

Here you go:

http://www.amazon.com/January-First-Descent-Madness-Struggle/dp/0307719081

 

http://www.youtube.com/user/JaniFoundation

[....]

Another perspective on the parents.

http://spitbristleandfury.wordpress.com/2009/07/22/january-first/#comments

 

I have to wonder what the outcome would be with some appropriate limit-setting by the parents.

 

Wow. Did you read the comment section?

[deacongirl]

Honestly--the more I have read and watched, the more I think that parenting is the issue *in this case*. And regardless--I do not believe he has the right to put all of this information about the child out there forever in the public domain. I find it abhorrent. I think he is sacrificing his daughter's privacy for publicity. (And that is leaving out the alleged abuse.)

[MinivanMom]

Honestly--the more I have read and watched, the more I think that parenting is the issue *in this case*. And regardless--I do not believe he has the right to put all of this information about the child out there forever in the public domain. I find it abhorrent. I think he is sacrificing his daughter's privacy for publicity. (And that is leaving out the alleged abuse.)

 

My understanding is that the parents have hired a Hollywood agent in addition to the documentaries and the book. The parents seem publicity hungry and just keep putting more and more private info out there. Whatever is really going on . . . and, of course, we can never really know . . . I find this horrible.

 

My heart just hurts for the little girl.

[Free]

I find it strange that some posters here are saying that the girl is just "very spoiled". Surely, the many doctors that the parents have taken her to would be able to know the difference between "very spoiled" and schizophrenia.

 

Even in the most ordinary of parenting struggles, I would think twice before jumping to judge the parents, let alone in a case where the parents are dealing with a grave mental illness such as schizophrenia.

[butterflymommy]

I remember seeing her on one of those health channels a couple of years ago. Very disturbing.

 

I saw that episode as well. What frightened me was how much she reminded me of myself as a kid. I also saw things and was not in touch with reality. Somehow I grew out of it and am a functional adult. I also got the impression she had a lot of autistic tendencies. For some people there is a blurry line between autism and schizophrenia.

[8filltheheart]

nm

Edited August 28, 2012 by 8FillTheHeart

[jillian]

I saw the special "one year later" or something a few months ago and they believe that the brother, Bhodi, is exhibiting symptoms and signs of schizophrenia also.

[deacongirl]

No, others aren't suggesting it, it was from his own words on his own blog. I don't have time to go back and find the links. Something like, "we tried everything...we tried starving her...we tried hitting her as hard as we could..." Clearly the kid needed help. But I am skeptical of the diagnosis. And putting a kid that young on anti-psychotics that have not been tested in children is certainly not without controversy.

[jillian]

Don't even get me started on the failure of the mental health field with children. We are so stuck in the medical model of diagnosing that is really detrimental. Also a lot of the providers do not get paid unless they make a diagnosis. So they are pulled into this ****ed if they do ****ed if they don't situation of let's wait and see to diagnose then they don't get paid (thank you insurance lobbying) and if they do diagnose then they chance being wrong. It's a sticky situation for any mental health provider. (I say we because I am almost finished with my degree in Marriage and Family Therapy)

[Dmmetler]

I really wonder if there isn't some combination of both. When I think of my DD at 3, I could easily see a lot of these things applying to her. At the time, she was very insistent that, for example, she could turn into a unicorn and gallop around at night, spent hours talking to her stuffed animals and insisted that they were real (think Calvin and Hobbes type real), and would go into meltdowns spontaneously. Her diagnosis was that she was gifted and that she had sensory OEs, and that many of these behaviors would recede with consistent parenting and time for her neurological system to mature. They sent me home with a list of books and support groups and websites-and DD home with an early childhood identification as intellectually gifted that got her into kindergarten early, and that was that.

 

I really think, though, that if you'd told me at 3 that she was schizophrenic and needed medication, I would have believed you. Or that she was autistic and needed 20 hours a week of ABA. Or that she was an alien changeling from the planet Krypton, for that matter. I had a degree in child development, was a trained early childhood teacher, and I'd never dealt with a child like her before. Gifted was simply one more label-and it was one that gave clues on how to parent this kid and that it was not only OK, but required to set limits, that it was OK to say "there are no unicorns at the dinner table and to not always humor her imagination" and that there was a difference between meltdowns due to sensory issues, regular kid behavior due to being hungry or tired, and just plain BAD bratty tantrums because she didn't always get her way.

 

I assume there's something to this child that leads the doctors to think "Schizophrenia" and not "imaginative high IQ kid with OEs who needs some strong limits to keep her from ruling the roost". I doubt any parent WANTS their child labeled schizophrenic for any reason other than to finally, hopefully, find something that will help the child.

 

But I get the same icky feeling from his book, TV appearances, and so on that I get from "Genius Baby-2 yr old admitted to MENSA" headlines-that someone is benefiting from this, and it's NOT the child.

[pdalley]

No, others aren't suggesting it, it was from his own words on his own blog. I don't have time to go back and find the links. Something like, "we tried everything...we tried starving her...we tried hitting her as hard as we could..." Clearly the kid needed help. But I am skeptical of the diagnosis. And putting a kid that young on anti-psychotics that have not been tested in children is certainly not without controversy.

 

I've got three kids on the autism spectrum. Yes, it's overwhelming sometimes - especially when they were younger and it was meltdown after meltdown with some lashing out going on. But I never thought of starving or hitting my boys. EVER. I have locked myself into a room to prevent myself from going too far. I have called DH from work or called a friend to intervene.

 

I had to agree with them pointing out that somehow it's 'understandable' because of this child's issues is a crock. I've seen it happen when autistic kids were murdered by their parents. It's like the parent is the victim and everyone forgets about the child that was killed. No, I never would say it was easy or that there is enough support out there but that doesn't translate into excusing it.

 

And you can easily talk some Doctors into a diagnosis. If you know what to say and how to present it. Or you keep at them. They'll do what you want as long as you will shut up and go away.

 

Something about the whole thing feels odd to me. And I have been there and done that in some ways. So I will judge his behavior. If he did indeed admit to hitting his child with all of his strength and starving her he should be treated like any other abusive parent - not given a pass.

 

ETA:

And I have a child on Risperdal. It wasn't an easy decision. But it worked and it's a tiny dose and we've already been able to cut him back. My other two are on Zoloft for anxiety and suicidal thoughts. I know of what I speak. I lost a tooth due to being hit by my oldest once.

 

And I find the opposite true of the medication issue. The first guy I took my oldest too wanted to medicate him without trying anything else. I had to search a long time to find someone who was really careful with meds and dosages. With my kids they need a very small dose to be effective and most Doctors want to start them on large doses.

Edited August 28, 2012 by pdalley

[8filltheheart]

Clearly the kid needed help. But I am skeptical of the diagnosis. And putting a kid that young on anti-psychotics that have not been tested in children is certainly not without controversy.

 

Ummmm, I am wondering if you have ever taken a child to see a mental healthcare professional? I don't know if there are any psychiatric meds that are approved for children......I do know that every single med our ds was put on was not. Literally, med prescriptions are handed out willy-nilly and they tell you to watch out for side effects. And, like I shared earlier, one dr that we saw was treating a 2 yr old for bipolar disorder.

Edited August 28, 2012 by 8FillTheHeart

[kwg]

I find it strange that some posters here are saying that the girl is just "very spoiled". Surely, the many doctors that the parents have taken her to would be able to know the difference between "very spoiled" and schizophrenia.

 

Even in the most ordinary of parenting struggles, I would think twice before jumping to judge the parents, let alone in a case where the parents are dealing with a grave mental illness such as schizophrenia.

 

 

:iagree: He says the little girl was in the hospital for four months. Surely, by then....someone could have called their bluff?

[deacongirl]

Ummmm, I am wondering if you have ever taken a child to see a mental healthcare professional? I don't know if there are any psychiatric meds that are approved for children......I do know that every single med our ds was put on was not. Literally, med prescriptions are handed out willy-nilly and they tell you to watch out for side effects. And, like I shared earlier, one dr that we saw was treating a 2 yr old for bipolar disorder.

 

Yes, I have, and am currently in the middle of decisions regarding meds. I know it is tough for parents to weigh the risks and benefits. More to say on this but I will have to come back later...

[Dmmetler]

:iagree: He says the little girl was in the hospital for four months. Surely, by then....someone could have called their bluff?

 

 

I've read several horror stories written by or about adults who were medicated for suspected mental illness, the medication caused a downward slide, which necessitated hospitalization, which then led to more medication, and so on. The original personality and original behaviors can be masked in all the layers of medication. And from what I've seen my friend experience with her son, who has an ASD and mental health issues, his hospitalization lengths are directly determined by what his insurance will pay-NOT what he actually needs. He has been sent home on several occasions where it certainly seemed like he wasn't ready to go (when he was still actively threatening suicide, for example). If parents/insurance were willing to pay for 4 months of hospitalization, I wouldn't necessarily assume that the hospital staff would look for symptoms that the child wasn't schizophrenic.

 

There's also the results of the Rosenhan experiment in the 1970s (http://en.wikipedia.org/wiki/Rosenhan_experiment). I know my abnormal psych professor in college strongly believed that the only difference between the 1970s and 1990s is that insurance companies now made it harder to hold a person past a few days.

 

I'm not saying this is what happened to this child. But I can well believe that if you had a 5 yr old come in to the hospital with a DX of Schizophenia and apparently hallucinating 95% of the time that this is what they'd see.

[pdalley]

:iagree: He says the little girl was in the hospital for four months. Surely, by then....someone could have called their bluff?

 

No, my brother was in three by the time he was 15. Not one of them ever knew what was going on with him. They put him on some pretty strong meds and sent him home after the insurance was maxed out.

 

He didn't need either of those things. Despite that and because he's a strong person he's a functioning adult who has survived a bunch of things. But it sure wasn't because of any 'help' he got from mental health professionals. They seemed determined to shoehorn him into a diagnosis. I remember at one point they flat out told my mother he'd either get better as a teen or kill her. Turns out he's on the autism spectrum. They didn't have a clue. Which is why I'm VERY skeptical and picky about the people who treat my boys.

Edited August 29, 2012 by pdalley

[kwg]

I've read several horror stories written by or about adults who were medicated for suspected mental illness, the medication caused a downward slide, which necessitated hospitalization, which then led to more medication, and so on. The original personality and original behaviors can be masked in all the layers of medication. And from what I've seen my friend experience with her son, who has an ASD and mental health issues, his hospitalization lengths are directly determined by what his insurance will pay-NOT what he actually needs. He has been sent home on several occasions where it certainly seemed like he wasn't ready to go (when he was still actively threatening suicide, for example). If parents/insurance were willing to pay for 4 months of hospitalization, I wouldn't necessarily assume that the hospital staff would look for symptoms that the child wasn't schizophrenic.

 

There's also the results of the Rosenhan experiment in the 1970s (http://en.wikipedia.org/wiki/Rosenhan_experiment). I know my abnormal psych professor in college strongly believed that the only difference between the 1970s and 1990s is that insurance companies now made it harder to hold a person past a few days.

 

I'm not saying this is what happened to this child. But I can well believe that if you had a 5 yr old come in to the hospital with a DX of Schizophenia and apparently hallucinating 95% of the time that this is what they'd see.

 

No, my brother was in three by the time he was 15. Not one of them ever knew what was going on with him. They put him on some pretty strong meds and sent him home after the insurance was maxed out.

 

He didn't need either of those things. Despite that and because he's a strong person he's a functioning adult who has survived a bunch of things. But it sure wasn't because of any 'help' he got from mental health professionals. They seemed determined to shoehorn him into a diagnosis. I remember at one point they flat out told my mother he'd either get better as a teen or kill her. Turns out he's on the autism spectrum. They didn't have a clue. Which is why I'm VERY skeptical and picky about the people who treat my boys.

 

 

That really is horrible and makes me sad :( You would hope, for kids at least......

[Quad Shot Academy]

:iagree: He says the little girl was in the hospital for four months. Surely, by then....someone could have called their bluff?

 

But, if she has been severely abused and taught she is crazy, she would be or appear to be *crazy*. One video has her as a newborn staring into space and the mom says something like, "What do you see? Something that mommy and daddy don't?" On another video the dad leaves and she asks where he went and the mom says something like, "He is taking a break. I am your staff for today." In the video where she is "trying to cut her arm off." The mom is practically goading her on and blaming it on the fact that her school is on break! I can't fathom why the parents put these videos are on line and why there aren't any videos of her really in a crisis. These parents seem to record everything, but there is nothing that is disturbing . . . other than the parents, IMHO . . . The make huge claims of her IQ too, but never show her saying or doing anything precocious in the early years. I have been on the suspicious side since seeing the first documentary years ago and am even more so now.

 

 

http://www.youtube.com/watch?v=tppzfVpcppw&feature=related

[kwg]

ok. What was that?? She wasn't doing anything wrong in the 2nd one at all. :glare:

[jessicalb]

The videos where she attacks her brother really freak me out.

 

I can't decide if these people are hardworking parents who have managed to mostly keep her behavior under control and that's why she looks so normal on camera so often or if they are nutters who have dragged both of their children to seriously bad places. Probably somewhere in between. I hesitate to judge. I just hope their whole family finds peace and health.

[shann]

I really wonder if a major component of this poor child's "illness" is just sleep deprivation. Her dad says the only way she would stop crying or throwing fits is to take her out all day, to one playground/park and then as soon as she got cranky and bored and started acting out they would take her to another...that sounds like a classic over-tired and over-stimulated child to me. Add in a sensory OE and you could get pretty dramatic results :(

That second video where the mom says Jani is having a psychotic episode??!! All she is doing is rubbing her arm softly with a piece of metal (I didn't catch what is was) and as soon as someone puts their hand out for it she hands it over completely calm. Looks like typical kid bored and wanting attention, hardly out of control and psychotic.

I know I have no right to judge them and we've only seen a tiny peek into their lives yet I can't help but feel that this is the ultimate example of what can happen if you completely indulge a child.

[Greenmama2]

Yes. Also wonder about diet. It would be interesting to compare this child to the feral children.

 

Who are the feral children? I suspect this is in part a lexicon thing. Feral is an activist subculture/urban fashion movement here.

[Dmmetler]

Who are the feral children? I suspect this is in part a lexicon thing. Feral is an activist subculture/urban fashion movement here.

 

 

Feral children are those who have been raised with little or no contact with other human beings-those who were locked in closets and had food tossed in to them once a day. There's debate as to whether these were kids who had developmental disabilities from the start that the adult couldn't handle, so rejected the child, or whether the children acquired these disabilities due to the extreme deprivation/abuse that they underwent. The term relates to the fact that some of the first few recorded were literally raised by animals-or, at least, managed to raise themselves in the wild after being lost or abandoned. http://en.wikipedia.org/wiki/Feral_child

[Greenmama2]

Ah, ok. I had assumed the pp was referring to a specific incident that was well publicised, rather than an entire phenomenon.

 

I just watched a few of the clips, including the Oprah one which did seem a little more convincing than the rest. It's amusing the different things we all get out of it though. I was literally recoiling seeing her seated in front of a meal of packaged pasta and cheese accompanied by cheese on toast. Does this child eat nothing but gluten and casein? I'm lucky that my children can tolerate both those things in moderation unlike many others we know, but my own daughter would definitely be worlds, entire universes in fact more difficult to handle if she ate that.

[Greenmama2]

So yes, I wonder what a difference diet could make for her. Also in almost all of the footage I saw she had rings under her eyes. Sleep deprivation or food intolerance? Either way, addressing those things would ease her suffering a little :(

[Dmmetler]

My friend who's son has been in and out of hospitals has commented that she's convinced that he gets worse when he's in the hospital because of lack of sleep. There's just plain noise all night long, and while they medicate him to get to sleep at all, he struggles with it. So after a few days, when he already went in, usually, in full meltdown mode (since that's usually what happens-he goes into meltdown and takes off, and the police end up called because a over 6 ft tall, raging young man threatening to kill himself and striking out at anything that gets in his way is a scary situation), and normally would have resolved just due to time if he'd had a stable situation, he starts decompensating and gets worse because he's tired and stressed.

 

I'm not sure my DD has ever slept through the night in her life-she slept in short bursts as a baby, and at age 7 often gets up in the middle of the night and reads or does math or logic problems for a bit before she goes to sleep. She's told me that sometimes her brain is too busy thinking for her to sleep, so I make sure she has resources to keep her brain busy if she wakes up and needs that refocusing time (one of my friends was both amazed and appalled when she came to our hotel room on a recent trip, and found DD poring over an algebra book-at 10:00 at night. She commented to a mutual friend that she couldn't understand how anyone could "do that" to a 7 yr old. The mutual friend commented that she must have never slept over at my house or had my DD spend the night-because if she had, she'd understand that it was DD who was doing it on her own!).

 

But I also try my best to schedule nothing before noon, and if I end up shortening a school day because she sleeps late, so be it. (She's doing so right now-DH is traveling for business, which always makes it hard for her to sleep. She took her Earth Science book to bed with her last night, and it won't surprise me in the slightest if she read the whole thing.)

[Sahamamama]

No one in all the appointments suggested taking gluten out. My husband attended regular weekly psychiatric appointments and these are the top people in the field of OCD etc and no one even mentioned trying a diet change. I want to take the time out to write them and tell them but I haven't gotten around to it.

 

Why would you write to them? It isn't that they don't know, it's that there isn't any money in it.

People in the general public need to realize that there is no money in recommending a dietary change. There is money in weekly psychiatric appointments, there is money in drugs, there is money in hospitalizations, but there is no money to made from saying, "Go home and take gluten out of your diet."

 

THAT is why no one told you. My two cents.

[pdalley]

Why would you write to them? It isn't that they don't know, it's that there isn't any money in it.

People in the general public need to realize that there is no money in recommending a dietary change. There is money in weekly psychiatric appointments, there is money in drugs, there is money in hospitalizations, but there is no money to made from saying, "Go home and take gluten out of your diet."

 

THAT is why no one told you. My two cents.

 

Well, sometimes you do try it and it doesn't help. We were GFCF free for a whole year. It made no difference to my kids. It's certainly worth a try in these types of situations. But to say there is no money in it? It's expensive as heck.

[Sahamamama]

Well, sometimes you do try it and it doesn't help. We were GFCF free for a whole year. It made no difference to my kids. It's certainly worth a try in these types of situations. But to say there is no money in it? It's expensive as heck.

No, you completely misread my post. I'm saying that there is no money in it for the physician/psychiatrist, if all he/she does is recommend a diet.

[pdalley]

No, you completely misread my post. I'm saying that there is no money in it for the physician/psychiatrist, if all he/she does is recommend a diet.

 

Ok, I did. And I would agree that it's the first thing to try when it comes to behavioral issues, IMO. No, it didn't help us and it was quite expensive but at least I don't wonder if it would help and I know that it does help for some people.