Justina Pelletier

[psychsurvivor 2]

For a 10 minute summary of the issues surrounding the validity of psychiatry as a medical discipline, I recommend this interview with https://en.wikipedia.org/wiki/Bruce_E._Levine , posted today by the Open Paradigm Project,

 

[OldMaid 1,838]

http://www.google.com/search?q=differences%20in%20post%20mortem%20schizophrenic%20brains

[psychsurvivor 2]

http://www.google.com/search?q=differences in post mortem schizophrenic brains

http://www.madinamerica.com/2013/10/genes-childhood-behavior-problems-nonreplication-curse-psychiatric-molecular-genetic-research/

 

And we are done with it, read about this other fiasco,

 

http://www.madinamerica.com/2014/03/blood-test-schizophrenia-83-accuracy/

 

You might find it hard to believe that peer reviewed literature publishes junk, specially medical literature and very specially psychiatric literature, but that is what I have been trying to explain through these pages.

 

I give you that you have been brainwashed by NAMI. But before continuing to make a fool of yourself, you should spend some time reading the references I have provided. As Bruce Levine explains above, it's the leaders of mainstream psychiatry that are abandoning the propaganda that you are spewing here .

[FeelingMN 273]

Will Hall, the primary author of the guide, is a former psychiatric patient and is passionate about informed choice when it comes to psychiatric medications. Hall, no anti-drug ideologue, begins by pointing out that in U.S. society there are confusing messages about drugs, and this results in a great deal of fear:

 

Drugs become demons or angels. We need to stay on them at all costs, or get off them at all costs. We look only at the risks, or we're too frightened to look at the risks at all. There is no compromise: It's black and white, all or nothing. It's easy to fall into absolutist thinking when it comes to psychiatric drugs. Pro-drug advocates focus on the risks of extreme emotional states, while anti-drug advocates focus on the risks of taking drugs. But it is the belief of this guide, and the philosophy of our pro-choice work at the Freedom Center and the Icarus Project, that either-or thinking around drugs is a big part of the problem.

 

"Making harm reduction decisions," says Hall, "means looking honestly at all sides of the equation: how drugs might help a life that feels out of control, how risky those same drugs might be, and the role of options and alternatives. Any decisions involve a process of experimentation and learning, including learning from your own mistakes and changing your goals along the way."

 

http://www.huffingtonpost.com/bruce-e-levine/psychiatric-drugs_b_1833424.html

 

[psychsurvivor 2]

http://www.google.com/search?q=differences in post mortem schizophrenic brains

Also that shrinkage has been explained recently as caused by neuroleptics, not by "schizophrenia",

 

http://www.nature.com/news/2011/110207/full/news.2011.75.html

 

Consistent with what has been observed in primates,

 

"David Lewis, a neuroscientist and psychiatrist at the University of Pittsburgh, Pennsylvania, found that healthy non-human primates, given doses of antipsychotics similar to those given to humans, showed brain volume reductions of around 10%, mostly attributable to loss of the glial cells that support and protect neurons"

 

More importantly, the fact remains that there is no way to tell a schizophrenic brain from a normal brain without a priori information. The studies you mention (just as the alleged "blood test") all suffer from selection and hindsight bias (meaning, once you you know that the person is schizophrenic you can derive all kinds of correlations, the problem is that those correlations then do not translate into biomarkers with predictive power, which is what science is all about).

 

And yes, that means that you have been giving your mother brain shrinking drugs .

[psychsurvivor 2]

http://www.huffingtonpost.com/bruce-e-levine/psychiatric-drugs_b_1833424.html

Note that this article is from 2012, when many of the fiercest critics of psychiatry were cautious about not offending "the establishment".

 

All that changed in 2013 when Mr Insel came out with his criticism of the DSM first (April 2013), and the massive usage of neuroleptics (August 2013). The more recent commentary by Bruce Levine (like the above interview) is much less accommodating.

[penultimatestraw 473]

I never questioned your credentials, nor did I say you don't have more experience with mental illness than I do.

 

I just find it curious you attack anyone who questions anything about the BCH by saying nobody can do so because they don't have the facts due to BCH being unable to release any info by law. And then you turn around and claim to know what is going on because you have an MD after your name.

 

You can't have it both ways, Doc.

I haven't "attacked" anyone, unless provoked first. I have tried to respond sincerely to those who question my reasoning, unless they insult or otherwise are dismissive of my posts.

 

We do have some facts: BCH docs believe the girl was a victim of medical child abuse and custody was taken away indefinitely from the parents by the courts. Everything else is heavily biased by what the parents tell the media. The BCH docs have said very little, because they are prohibited from releasing confidential patient info.

 

We are all guessing as to what is the most likely scenario, I just happen to believe there had to be something pretty bad going on for the BCH docs, child protective services and courts to take such drastic action. I say this in part because I know I wouldn't start down that path without overwhelming evidence. You and a few others prefer to think the parents are telling the truth, maybe because you can relate to parents better than a group of doctors.

 

And some are inherently distrustful of mental health professionals and government, at least one of you extremely so.

[rollinghills60 0]

Among the facts we have are:

 

1) A renowned metabolic specialist believes Justina has a metabolic disorder.

 

2) BCH refused to consult with this metabolic specialist, who had previously been employed by BCH before moving to Tufts.

 

3) Justina's psychologist from Connecticut testified that he believes she has "mild depression" secondary to her medical issues.

 

4) At least two surgeons from Tufts (including, according to what I have read, the Chief of Surgery) believe that the cecostomy surgery was justified.

 

5) Justina was treated by psychiatrists at BCH for over a year, yet she is still in a wheelchair.

 

6) The judge has received a huge amount of negative press. Legal experts, both conservative and liberal, have pointed out that his far reaching gag order was unconstitutional.

 

7) Not all BCH doctors are competent and/or trustworthy. Within the last couple of years, one psychiatrist affiliated with the hospital lost his license because he decided that a patient's problems were due to "evil spirits," and he neglected to report it when the patient said her mother had tried to kill her. Another doctor affiliated with the hospital recently pleaded guilty to possession of child pornography.

 

Surely no one believes that the judge rescinded the gag order and that DCF dropped their request for prosecution of Lou Pelletier for violating it just to be nice. The judge has been humiliated and undoubtedly feels resentful toward the Pelletiers.

 

No one has leaked any information indicating that Justina's condition is not as bad as her family says it is. The law may prohibit medical professionals from doing so, but since when has the law stopped people from leaking information? And what about other parents and patients? Parents visit their children on Bader 5, and would have seen Justina. Many patients would have come and gone during Justina's lengthy stay. Some of he kids/teens at Wayside are day patients. Not only would their parents have seen Justina when they came to drop them off or pick them up, but the kids are home at night, where at least some of them can tweet and get on Facebook, etc., as well as talk to their friends and their friends' parents. No one who hasn't been living under a rock could have missed the news stories about Justina, and I am certain that it would be impossible to keep all these people quiet if the Pelletiers were lying about her condition.

[NewbieJr 540]

OMFG Another one.

[FlaHawker 24]

OMFG Another one.

Starting the work day off with a bang, eh Newbs

[FlaHawker 24]

OMFG Another one.

How about you do some work today and not ripoff your employer?

[NewbieJr 540]

Starting the work day off with a bang, eh Newbs

6

[NewbieJr 540]

How about you do some work today and not ripoff your employer?

7

[drobeski 3,061]

Rolling took the lead

[FeelingMN 273]

Also that shrinkage has been explained recently as caused by neuroleptics, not by "schizophrenia",http://www.nature.com/news/2011/110207/full/news.2011.75.html

Consistent with what has been observed in primates,

"David Lewis, a neuroscientist and psychiatrist at the University of Pittsburgh, Pennsylvania, found that healthy non-human primates, given doses of antipsychotics similar to those given to humans, showed brain volume reductions of around 10%, mostly attributable to loss of the glial cells that support and protect neurons"

More importantly, the fact remains that there is no way to tell a schizophrenic brain from a normal brain without a priori information. The studies you mention (just as the alleged "blood test") all suffer from selection and hindsight bias (meaning, once you you know that the person is schizophrenic you can derive all kinds of correlations, the problem is that those correlations then do not translate into biomarkers with predictive power, which is what science is all about).

And yes, that means that you have been giving your mother brain shrinking drugs .

The brain scans also showed that those who suffer from schizophrenia demonstrated the highest tissue loss in the first 2 years after their first episode, after which point it slowed down significantly.

To be fair, this study also concluded drugs caused tissue loss:

The results showed that the higher the dosage of anti-psychotic medication in patients, the more brain tissue was lost.

 

http://www.medicalnewstoday.com/articles/266102.php

 

So OldMaid is right. As are you. And that, in a nutshell sizes up this argument. Nobody is absolutely correct on these things, which is why I think you leave your options open as to what constitutes the best form of treatment for individuals in need of it. At the end of the day, we all want what's best for the people we're talking about. We're gonna come about it from different perspectives. That's a good thing.

[Mike Honcho 4,045]

semantics

 

[drobeski 3,061]

 

 

Word games ?

Fox news ?

Koch bros ?

 

 

 

 

[psychsurvivor 2]

To be fair, this study also concluded drugs caused tissue loss:

http://www.medicalnewstoday.com/articles/266102.php

So OldMaid is right. As are you. And that, in a nutshell sizes up this argument. Nobody is absolutely correct on these things, which is why I think you leave your options open as to what constitutes the best form of treatment for individuals in need of it. At the end of the day, we all want what's best for the people we're talking about. We're gonna come about it from different perspectives. That's a good thing.

CS Lewis said,

 

"Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive"

 

Why can't we all agree that psychiatry should have no right whatsoever to impose itself on people who want nothing to do with it? I brought the example of John Nash and, again, I encourage everybody to watch the "Brilliant Madness" documentary that was produced for PBS' "The American Experience" which makes it very clear that John Nash resisted the type of interventions advocated by OldMaid . Towards the end, Sylvia Nasar -the author of the book "A Beautiful Mind" - states her opinion that the reason John Nash recovered is that he was surrounded by people who never gave up on him as a human being. OldMaid wants us to forget that people are souls, they are just "chemical imbalances" that can be "fixed" with drugs, by force if necessary.

 

OldMaid is full psychiatry Kool-Aid but empty of understanding for those who are different, including her own mother.

[psychsurvivor 2]

Word games ?

Fox news ?

Koch bros ?

. As long as it stays there...

 

I have been compared to the KKK before for criticizing psychiatry, which is ironic, because if there is a party obsessed with social control is the party that officially endorsed both slavery and the Jim Craw laws in its platform. The same party out of which the KKK was born. Now, the same party, wants to exercise social control by way of identity politics or by having psychiatrists who are mostly Democrats. So much so that even the NRA seems now realizing that a blanket statute that would take away second amendment rights from the so called "mentally ill" is not such a good idea after all,

 

http://www.nraila.org/legislation/state-legislation/2014/3/colorado-oppose-misguided-mental-health-legislation.aspx

 

"Expansion of instances when a mental health hold can be issued and removal of the option to choose a jury trial in civil commitment and substance abuse adjudications will only work to harm individuals in Colorado. This is a thinly veiled attempt to infringe on your Second Amendment rights."

[psychsurvivor 2]

Among the facts we have are:

 

1) A renowned metabolic specialist believes Justina has a metabolic disorder.

 

2) BCH refused to consult with this metabolic specialist, who had previously been employed by BCH before moving to Tufts.

 

3) Justina's psychologist from Connecticut testified that he believes she has "mild depression" secondary to her medical issues.

 

4) At least two surgeons from Tufts (including, according to what I have read, the Chief of Surgery) believe that the cecostomy surgery was justified.

 

5) Justina was treated by psychiatrists at BCH for over a year, yet she is still in a wheelchair.

 

6) The judge has received a huge amount of negative press. Legal experts, both conservative and liberal, have pointed out that his far reaching gag order was unconstitutional.

 

7) Not all BCH doctors are competent and/or trustworthy. Within the last couple of years, one psychiatrist affiliated with the hospital lost his license because he decided that a patient's problems were due to "evil spirits," and he neglected to report it when the patient said her mother had tried to kill her. Another doctor affiliated with the hospital recently pleaded guilty to possession of child pornography.

 

Surely no one believes that the judge rescinded the gag order and that DCF dropped their request for prosecution of Lou Pelletier for violating it just to be nice. The judge has been humiliated and undoubtedly feels resentful toward the Pelletiers.

 

No one has leaked any information indicating that Justina's condition is not as bad as her family says it is. The law may prohibit medical professionals from doing so, but since when has the law stopped people from leaking information? And what about other parents and patients? Parents visit their children on Bader 5, and would have seen Justina. Many patients would have come and gone during Justina's lengthy stay. Some of he kids/teens at Wayside are day patients. Not only would their parents have seen Justina when they came to drop them off or pick them up, but the kids are home at night, where at least some of them can tweet and get on Facebook, etc., as well as talk to their friends and their friends' parents. No one who hasn't been living under a rock could have missed the news stories about Justina, and I am certain that it would be impossible to keep all these people quiet if the Pelletiers were lying about her condition.

Very well said. Do not expect an intelligent rebuttal from the sage in residence, old fart penultimatestraw. He expressed his views very clearly: BCH doctors are immaculate gods who cannot do any wrong and so is incompetent judge Johnston .

[FeelingMN 273]

CS Lewis said,

"Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive"

Why can't we all agree that psychiatry should have no right whatsoever to impose itself on people who want nothing to do with it? I brought the example of John Nash and, again, I encourage everybody to watch the "Brilliant Madness" documentary that was produced for PBS' "The American Experience" which makes it very clear that John Nash resisted the type of interventions advocated by OldMaid . Towards the end, Sylvia Nasar -the author of the book "A Beautiful Mind" - states her opinion that the reason John Nash recovered is that he was surrounded by people who never gave up on him as a human being. OldMaid wants us to forget that people are souls, they are just "chemical imbalances" that can be "fixed" with drugs, by force if necessary.

OldMaid is full psychiatry Kool-Aid but empty of understanding for those who are different, including her own mother.

Psychiatry to the left, anti psychiatry to the right, and a lot of people in the middle whose needs aren't being addressed. The Lewis quote applies to your movement as well. You're advocating a one size fits all solution for a problem that may very well be comprised of a million different variants. Let's take each individual separately and focus on their needs. Adopt different approaches. See what works. Maybe we don't medicate right away.....maybe we don't medicate at all...but maybe medication is the answer for some.

 

OldMaid did what she thought was right for her mom. I will not disparage her for that.

[FeelingMN 273]

Very well said. Do not expect an intelligent rebuttal from the sage in residence, old fart penultimatestraw. He expressed his views very clearly: BCH doctors are immaculate gods who cannot do any wrong and so is incompetent judge Johnston .

Actually, I think he said they could be wrong and that he wasn't as easily swayed by the media coverage. He also said he would admit if he was wrong if he was proven so.

 

[KSB2424 3,085]

Actually, I think he said they could be wrong and that he wasn't as easily swayed by the media coverage. He also said he would admit if he was wrong if he was proven so.

 

 

FeelingMN, I really like the angle and your overall veiwpoint about this topic.

 

Pyschiatry should be totally re-evaluated on how Dr's treat, laws around it, and how we as society view it. I think both you and this phsch dude agree there. I alos like the thought of there isn't a one size fits all, black or white issue, but a nuanced approach custom for each individual. Great thoughts there.

 

Obviously this physch dude has strong opinons that are on one end of the spectrum, and without trying to rehash this thread I'll try to tidy up in a paragraph or two where I do agree with his general premise (even if I won't go as far as he alludes).

 

To take away a persons freedom, whether that be for criminal trespasses or because somebody deems them crazy, it has to be beyond resonable doubt. There has to be a burdern of proof on those taking away that freedom or from that family. And it has to be overwhelming (beyond reasonable doubt). We have this in place for our criminal justice system the best we can. It seems in phschiatry however the standards are not as high, nor are the standard of controls put in place to limit mistakes. For a person to be taken against their free will due to A doctor or A hospital or A judge simplying saying so where there are official differing opinions and diagnosis (reasonable doubt) goes against this countries values. It just does. Unlike the physcsurvivor, I'm not saying doing so is never justified. I'm saying it HAS to be fully justified based on high standards and beyond any doubt.

 

I think even the most ardent detractors of this particular case can agree there is bunch of reasonable doubt this little girl may have been misdiagnosed and incorrectly taken as a result by the Hospital. When the question arises of taking a persons freedom away, we should always err on the side of caution is all I'm saying. From all I know and have read about this case that was not done, some folks are erroring on the side of themselves and covering their butts instead. And that does irk me.

[drobeski 3,061]

. As long as it stays there...

 

I have been compared to the KKK before for criticizing psychiatry, which is ironic, because if there is a party obsessed with social control is the party that officially endorsed both slavery and the Jim Craw laws in its platform. The same party out of which the KKK was born. Now, the same party, wants to exercise social control by way of identity politics or by having psychiatrists who are mostly Democrats. So much so that even the NRA seems now realizing that a blanket statute that would take away second amendment rights from the so called "mentally ill" is not such a good idea after all,

 

http://www.nraila.org/legislation/state-legislation/2014/3/colorado-oppose-misguided-mental-health-legislation.aspx

 

"Expansion of instances when a mental health hold can be issued and removal of the option to choose a jury trial in civil commitment and substance abuse adjudications will only work to harm individuals in Colorado. This is a thinly veiled attempt to infringe on your Second Amendment rights."

these facts will conveniently become semantics around here.

[NewbieJr 540]

these facts will conveniently become semantics around here.

8 words, no misspellings. Two of them over six letters. I'm impressed.

[Mike Honcho 4,045]

8 words, no misspellings. Two of them over six letters. I'm impressed.

 

Next thing you know, he'll string together a sentence that actually has something to do with the topic.

[NewbieJr 540]

 

Next thing you know, he'll string together a sentence that actually has something to do with the topic.

Semantics

Fox News

 

Libtards

[drobeski 3,061]

 

Next thing you know, he'll string together a sentence that actually has something to do with the topic.

rmff

[MDC 5,903]

skiense iz dum end eckspurts r dummerer.

[Mike Honcho 4,045]

rmff

 

LMAO---you're too focking dumb to even use that correctly.

[penultimatestraw 473]

Among the facts we have are:

 

1) A renowned metabolic specialist believes Justina has a metabolic disorder.

But he never attempted the most commonly used diagnostic procedure to confirm his suspicion of mitochondrial disease. So the diagnosis is in question. And there is a possibility she has both mitochondrial disease and suffers from medical child abuse.

 

2) BCH refused to consult with this metabolic specialist, who had previously been employed by BCH before moving to Tufts.

Korson is part of her current medical treatment team.

 

3) Justina's psychologist from Connecticut testified that he believes she has "mild depression" secondary to her medical issues.

OK. So it remains one group of doctors(BCH) + courts versus family and another group of doctors (Tufts). How do you know who is correct?

 

4) At least two surgeons from Tufts (including, according to what I have read, the Chief of Surgery) believe that the cecostomy surgery was justified.

I don't remember reading this. Do you have a link?

 

5) Justina was treated by psychiatrists at BCH for over a year, yet she is still in a wheelchair.

And this proves what? Although some medications were discontinued, none of the vitamin/antioxidant cocktail which treats mitochondrial disease were. Interestly, at least some of the discontinued meds were psychoactive (you know, the poisons purveyed by the pharmacists and quacks).

 

6) The judge has received a huge amount of negative press. Legal experts, both conservative and liberal, have pointed out that his far reaching gag order was unconstitutional.

Of course it is an unpopular decision to take a child from their parents. And he may have overstepped his bounds; this does not negate whether Justina was a victim of MCA. Do those legal experts have all the same info as the Mass courts?

 

7) Not all BCH doctors are competent and/or trustworthy. Within the last couple of years, one psychiatrist affiliated with the hospital lost his license because he decided that a patient's problems were due to "evil spirits," and he neglected to report it when the patient said her mother had tried to kill her. Another doctor affiliated with the hospital recently pleaded guilty to possession of child pornography.

Not all Tufts docs are great either. And bad parents exist.

 

Surely no one believes that the judge rescinded the gag order and that DCF dropped their request for prosecution of Lou Pelletier for violating it just to be nice. The judge has been humiliated and undoubtedly feels resentful toward the Pelletiers.

No idea.

 

No one has leaked any information indicating that Justina's condition is not as bad as her family says it is. The law may prohibit medical professionals from doing so, but since when has the law stopped people from leaking information? And what about other parents and patients? Parents visit their children on Bader 5, and would have seen Justina. Many patients would have come and gone during Justina's lengthy stay. Some of he kids/teens at Wayside are day patients. Not only would their parents have seen Justina when they came to drop them off or pick them up, but the kids are home at night, where at least some of them can tweet and get on Facebook, etc., as well as talk to their friends and their friends' parents. No one who hasn't been living under a rock could have missed the news stories about Justina, and I am certain that it would be impossible to keep all these people quiet if the Pelletiers were lying about her condition.

Her getting worse doesn't prove she wasn't abused.

Congratulations on your new IP address! I've answered half these questions previously, but brief responses are above.

 

Also what is your opinion of psychiatry, psychoactive medications and involuntary commitment?

[penultimatestraw 473]

Actually, I think he said they could be wrong and that he wasn't as easily swayed by the media coverage. He also said he would admit if he was wrong if he was proven so.

 

And I'm not an old fart!

[rollinghills60 0]

Congratulations on your new IP address! I've answered half these questions, but cliff note responses are above.

Huh? Are you really so arrogant as to assume that only one person could possibly disagree with you?

 

I didn't actually ask any questions, so there was nothing to answer. Some of your comments seem totally unrelated to the preceding paragraph - for instance, what does the fact that "Of course it is an unpopular decision to take a child from their parents" have to do with whether or not a gag order is unconstitutional?

And this makes no sense at all: Her getting worse doesn't prove she wasn't abused. If the parents had somehow convinced those poor innocent, incredibly naive doctors to medicate their daughter with unnecessary and dangerous medications, why wouldn't Justina's condition improve when she was taken off of them, and was given over a year of treatment in Bader 5?

 

I am sure you know that a muscle biopsy is not a definitive method of diagnosing mito:

Myth

A muscle biopsy is the "gold standard" for diagnosis of mitochondrial disease.

Fact

Although the muscle biopsy is a powerful diagnostic tool, it should not be considered a "gold standard." Examination of a biopsy includes microscopic evaluation, enzyme testing, and genetic testing. Although all U.S. labs that offer muscle biopsy meet strict laboratory guidelines, there is no agreed-upon standard approach for enzyme testing. Furthermore, a muscle biopsy with full analysis costs well over $10,000 and poses both surgical and anesthetic risks. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing -- in either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy.

 

http://my.clevelandclinic.org/disorders/mitochondrial_disease/hic_myths_and_facts_about_mitochondrial_diseases.aspx

 

I have relatives who have received care at Boston Children's Hospital. I know some of the doctors and other medical professionals who have treated Justina, and I know someone with mito who has been treated by a few more. Viewing pain as psychosomatic seems to be pervasive at BCH, in contrast to the pediatric department at another Massachusetts hospital with which I have had experience. I have witnessed BCH staff trying to convince a child that her pain was all in her head, after an accident that was the result of a staffer chatting with her co-workers rather than paying attention to what she was supposed to be doing. I personally know three children who have spent time at the Wayside facility, which can be a terrifying place for a child who did not grow up streetwise, and probably even for those who did. I know for a fact that there are some excellent doctors at BCH, and some that are not.

 

It was wrong for BCH to refuse to collaborate with Dr. Korson or Justina's other doctors at Tufts. It was wrong for BCH to exclude Dr. Flores, the gastroenterologist, from Justina's treatment team. It was wrong for BCH to refuse to allow Justina to be transferred to Tufts immediately, rather than to wait for over a year.

[crackattack 513]

Hot damn!! Two of them now! I know this one though. His name is Teddy. His dad is a looney. A looney up in the nuthouse in Togus. He put his ear to a stove and burnt it off. Your dad is crazier then a shitthouse rat. Its no wonder your acting the way you do. Looney, looney, looney.

[penultimatestraw 473]

Huh? Are you really so arrogant as to assume that only one person could possibly disagree with you?

 

I didn't actually ask any questions, so there was nothing to answer. Some of your comments seem totally unrelated to the preceding paragraph - for instance, what does the fact that "Of course it is an unpopular decision to take a child from their parents" have to do with whether or not a gag order is unconstitutional?

And this makes no sense at all: Her getting worse doesn't prove she wasn't abused. If the parents had somehow convinced those poor innocent, incredibly naive doctors to medicate their daughter with unnecessary and dangerous medications, why wouldn't Justina's condition improve when she was taken off of them, and was given over a year of treatment in Bader 5?

 

I am sure you know that a muscle biopsy is not a definitive method of diagnosing mito:

Myth

A muscle biopsy is the "gold standard" for diagnosis of mitochondrial disease.

Fact

Although the muscle biopsy is a powerful diagnostic tool, it should not be considered a "gold standard." Examination of a biopsy includes microscopic evaluation, enzyme testing, and genetic testing. Although all U.S. labs that offer muscle biopsy meet strict laboratory guidelines, there is no agreed-upon standard approach for enzyme testing. Furthermore, a muscle biopsy with full analysis costs well over $10,000 and poses both surgical and anesthetic risks. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing -- in either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy.

 

http://my.clevelandclinic.org/disorders/mitochondrial_disease/hic_myths_and_facts_about_mitochondrial_diseases.aspx

 

I have relatives who have received care at Boston Children's Hospital. I know some of the doctors and other medical professionals who have treated Justina, and I know someone with mito who has been treated by a few more. Viewing pain as psychosomatic seems to be pervasive at BCH, in contrast to the pediatric department at another Massachusetts hospital with which I have had experience. I have witnessed BCH staff trying to convince a child that her pain was all in her head, after an accident that was the result of a staffer chatting with her co-workers rather than paying attention to what she was supposed to be doing. I personally know three children who have spent time at the Wayside facility, which can be a terrifying place for a child who did not grow up streetwise, and probably even for those who did. I know for a fact that there are some excellent doctors at BCH, and some that are not.

 

It was wrong for BCH to refuse to collaborate with Dr. Korson or Justina's other doctors at Tufts. It was wrong for BCH to exclude Dr. Flores, the gastroenterologist, from Justina's treatment team. It was wrong for BCH to refuse to allow Justina to be transferred to Tufts immediately, rather than to wait for over a year.

Seriously, I think you are an acquaintance of psychsurvivor. Why? Because we infrequently have new posters here, let alone two who are so passionate about an obscure topic. And this is a fantasy football site, not a mitochondrial disease forum. If you tell me you don't know psychsurvivor I'll apologize. How'd you find us? What do you think of mainstream psychiatry?

 

I addressed your statements on a point-by-point basis.If you don't understand my responses I can't help you to comprehend. Read the rest of the thread as most of your points have already been discussed. I'll elaborate one of them though.

 

Muscle biopsy is not always definitive, but it is a standard tool used in the diagnosis of mitochondrial disease. Genetic testing isn't widely available, and the info we have suggests no definitive diagnosis had ever been made. Regardless, any treating doctor who wasn't completely inept/evil would want to obtain the records to support her original diagnosis before potentially taking her from her parents - for the bazillionth time, no physician would take this decision lightly. The threshold for such an action is exceedingly high, as the consequences of a wrong decision are harmful to the patient, family and treating doctors. Any doctor can commit malpractice, but multiple doctors and an entire hospital backing their decisions?

 

And the pain/anesthesia risks from muscle biopsy are arguably less than she was exposed during cecostomy. And the cost is definitely less.

[OldMaid 1,838]

Hot damn!! Two of them now! I know this one though. His name is Teddy. His dad is a looney. A looney up in the nuthouse in Togus. He put his ear to a stove and burnt it off. Your dad is crazier then a shitthouse rat. Its no wonder your acting the way you do. Looney, looney, looney.

Chopper... Sic balls!!!!!

[crackattack 513]

Chopper... Sic balls!!!!!

I'll rip your head off and shat down your neck!

[psychsurvivor 2]

 

Pyschiatry should be totally re-evaluated on how Dr's treat, laws around it, and how we as society view it. I think both you and this phsch dude agree there. I alos like the thought of there isn't a one size fits all, black or white issue, but a nuanced approach custom for each individual. Great thoughts there.

 

Obviously this physch dude has strong opinons that are on one end of the spectrum, and without trying to rehash this thread I'll try to tidy up in a paragraph or two where I do agree with his general premise (even if I won't go as far as he alludes).

 

To take away a persons freedom, whether that be for criminal trespasses or because somebody deems them crazy, it has to be beyond resonable doubt. There has to be a burdern of proof on those taking away that freedom or from that family. And it has to be overwhelming (beyond reasonable doubt). We have this in place for our criminal justice system the best we can. It seems in phschiatry however the standards are not as high, nor are the standard of controls put in place to limit mistakes. For a person to be taken against their free will due to A doctor or A hospital or A judge simplying saying so where there are official differing opinions and diagnosis (reasonable doubt) goes against this countries values. It just does. Unlike the physcsurvivor, I'm not saying doing so is never justified. I'm saying it HAS to be fully justified based on high standards and beyond any doubt.

 

Very much agree with what you say here with a qualification. I think there should be no role whatsoever for so called "mental health professionals" in the decision of when a person should be locked up against his/her will. The conditions under which somebody can be arrested should be decided through the democratic process, as we do for the criminal justice system. We do not let lawyers have a blanket right to decide when some conduct is deemed criminal, even though practicing bar members have probably higher expertise in current law than most legislators. That role lies in legislators themselves because they are the ones accountable to the people. The notion of psychiatrists having a blanket right to put into the DSM behavioral patterns that can then be used to lock up somebody against his/her will, even if the standard is dangerousness, and even if the burden of proof is raised to "beyond reasonable doubt" is simply wrong. If the legislature wants to make it a crime to "hear voices" or to "fear HIV more than the average", so be it. Those discussions would take place in the open, and voting will be exercised by people who have to answer questions to the public. The DSM is decided and voted in secrecy by a group of self appointed mind guardians. That's pure evil.

 

I already posted this earlier in the thread, but for the new comers, you should consider the case of Christina Schumacher,

 

https://www.youtube.com/watch?v=DrgLV96X8h0

 

This is a case in which even under our American standards, which are higher than Europe's, testimony by Christina's family members that she was a suicide risk was used to lock her up preemptively under so called "emergency powers". She spent a total of 1 month involuntarily committed until a judge reviewed the decision and declared the original detention illegal. Note that this is not a case in which somebody was freed after one month. What the judge said is that the facts in her case did not warrant a preemptive lock up as an "emergency". So depending on the state where you live, even when the law protects you, psychiatrists can still give you a very hard time .

[penultimatestraw 473]

Huh? Are you really so arrogant as to assume that only one person could possibly disagree with you?

 

I didn't actually ask any questions, so there was nothing to answer. Some of your comments seem totally unrelated to the preceding paragraph - for instance, what does the fact that "Of course it is an unpopular decision to take a child from their parents" have to do with whether or not a gag order is unconstitutional?

And this makes no sense at all: Her getting worse doesn't prove she wasn't abused. If the parents had somehow convinced those poor innocent, incredibly naive doctors to medicate their daughter with unnecessary and dangerous medications, why wouldn't Justina's condition improve when she was taken off of them, and was given over a year of treatment in Bader 5?

The first bolded statement was based on:

 

6) The judge has received a huge amount of negative press. Legal experts, both conservative and liberal, have pointed out that his far reaching gag order was unconstitutional.

 

I was commenting on the negative press being predicated by the emotionally charged topic of removing a child from parental custody. The judge's inappropriate gag order (I'll take your word for it, as I have no idea) is irrelevant in determining Justina's underlying diagnosis.

 

The second bold statement is pretty self-explanatory. There are many variables at work here; the medications are only one. FWIW, she has remained on the main treatments for mitochondrial disease, of which there are very few that are scientifically validated. I was mocking the extreme viewpoints of some posters when I described the psychoactive meds which were discontinued.

[OldMaid 1,838]

I'll rip your head off and shat down your neck!

Actually, the appropriate reply from me should have been: "MY FATHER STORMED THE BEACH AT NORMANDY!#@!" But "Chopper...Sic Balls!" was the first one to pop into my head.