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RE: Parents rights - 2/28/2014 6:25:24 PM   
fucktoyprincess


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quote:

ORIGINAL: DomKen

quote:

ORIGINAL: fucktoyprincess

Kali, thanks for all the info and links.

As a general response to the overall thread, it is my understanding that there is no definitive test for mito - so I'm not sure how the sister has a definitive test result for it.

There are a number of tests that can be done. The most common kind of mito disease, mitochondrial myopathy is diagnosed by muscle biopsy. Based on what is described in the Boston Globe article that seems to be what she was being treated for so she should have gotten that test to confirm the diagnosis.

So this begs the question of why they would not administer this test - it is expensive, but considering all the issues surrounding this, it would seem to be necessary to do this muscle biopsy. And certainly they've had time (!)
From looking up different mito sites on the web I still find the descriptions of diagnosis confusing. There are some sites that say there is no definitive test. Could this be because if the muscle biopsy comes out negative it doesn't mean the person couldn't still have mito? (I don't mean a false negative, I just mean a lack of sensitivity of the test where it can't always pick it up?) Anyway, even the mito info on the web seems confusing. Check out the following: http://www.mitoaction.org/blog/how-do-i-know-if-i-have-mito

< Message edited by fucktoyprincess -- 2/28/2014 6:28:55 PM >


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RE: Parents rights - 2/28/2014 6:32:23 PM   
LookieNoNookie


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quote:

ORIGINAL: thishereboi

It scares me how little control we actually have over our own kids lives. Being sick is scary enough for a child but this is over the top.

http://www.huffingtonpost.com/cristy-balcells/first-do-no-harm-how-we-f_b_4843997.html

She also has a facebook page

https://www.facebook.com/pages/A-Miracle-for-Justina/253343311469595

and a petition if anyone is interested

http://grassfire.com/2014/02/justina/?Ref_ID=25258&CID=201115&RID=41344265


How unbelievably painful for her parents. How horrifying.

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RE: Parents rights - 2/28/2014 7:23:33 PM   
DomKen


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quote:

ORIGINAL: fucktoyprincess

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: fucktoyprincess

Kali, thanks for all the info and links.

As a general response to the overall thread, it is my understanding that there is no definitive test for mito - so I'm not sure how the sister has a definitive test result for it.

There are a number of tests that can be done. The most common kind of mito disease, mitochondrial myopathy is diagnosed by muscle biopsy. Based on what is described in the Boston Globe article that seems to be what she was being treated for so she should have gotten that test to confirm the diagnosis.

So this begs the question of why they would not administer this test - it is expensive, but considering all the issues surrounding this, it would seem to be necessary to do this muscle biopsy. And certainly they've had time (!)
From looking up different mito sites on the web I still find the descriptions of diagnosis confusing. There are some sites that say there is no definitive test. Could this be because if the muscle biopsy comes out negative it doesn't mean the person couldn't still have mito? (I don't mean a false negative, I just mean a lack of sensitivity of the test where it can't always pick it up?) Anyway, even the mito info on the web seems confusing. Check out the following: http://www.mitoaction.org/blog/how-do-i-know-if-i-have-mito

Like I wrote up thread mito diseases have become the hypochondriac's fashionable illnesses of late like multiple chemical sensitivity was a decade ago. Mitochondrial disease is actually an umbrella term for any illness involving a dysfunction of the mitochondria. It can present as almost anything from type 2 diabetes to various sorts of muscular dystrophy.
http://en.wikipedia.org/wiki/Mitochondrial_disease

Some less than honest doctors are taking advantage of this to prey on the people who want to believe they are ill.

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Profile   Post #: 43
RE: Parents rights - 2/28/2014 9:10:43 PM   
graceadieu


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quote:

ORIGINAL: fucktoyprincess

I've seen other assertions about this case, and it isn't clear to me what the facts really are. Some are claiming that BCH believes it to be Munchausen Syndrome by proxy


While none of us know the facts, that is a valid concern. Parents with that issue can seriously harm their children because they feed on the attention its gets them.

quote:

and I have also read that that BCH and the social workers are under a court order not to talk about the case (why?? - what is the sensitive information that they can't discuss?).


I would think HIPPA would prevent them from discussing it with people other than her family and doctors.

quote:

It just seems implausible that so many people would agree that she needed to be in the psych ward of a hospital if her real and only condition is mito or some other purely physical ailment.)


Agreed. It seems odd. It's unlikely the state would have her committed to inpatient care for a year (at considerable taxpayer expense) unless she were deemed a danger to herself. Patient rights laws don't really permit that. I wonder if they think it's not Munchausen by proxy, but rather Munchausen's itself or that she's making herself ill, and that's why she hasn't improved? Who knows.

ETA: I did a little cursory research, and it looks like mitochondrial diseases are incurable and often fatal, so if she does have it, she may be getting worse just because it's progressing towards that end.

< Message edited by graceadieu -- 2/28/2014 9:12:08 PM >

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RE: Parents rights - 2/28/2014 9:35:28 PM   
graceadieu


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quote:

ORIGINAL: fucktoyprincess
So this begs the question of why they would not administer this test - it is expensive, but considering all the issues surrounding this, it would seem to be necessary to do this muscle biopsy. And certainly they've had time (!)


That's a good point. According to the Boston Globe article kalikshama posted, the inpatient care where she's at costs the state $1,000/day. The test can't possibly be nearly that expensive.

< Message edited by graceadieu -- 2/28/2014 9:36:56 PM >

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RE: Parents rights - 2/28/2014 9:44:55 PM   
BamaD


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quote:

ORIGINAL: graceadieu

quote:

ORIGINAL: fucktoyprincess
So this begs the question of why they would not administer this test - it is expensive, but considering all the issues surrounding this, it would seem to be necessary to do this muscle biopsy. And certainly they've had time (!)


That's a good point. According to the Boston Globe article kalikshama posted, the inpatient care where she's at costs the state $1,000/day. The test can't possibly be nearly that expensive.

Maybe they are so sure they are right they see no need to perform the test to prove it one way or the other (and why take
the chance of being proven wrong).

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People don't believe they can defend themselves because they have guns, they have guns because they believe they can defend themselves.

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Profile   Post #: 46
RE: Parents rights - 2/28/2014 10:02:40 PM   
DomKen


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From: Chicago, IL
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quote:

ORIGINAL: graceadieu

quote:

ORIGINAL: fucktoyprincess
So this begs the question of why they would not administer this test - it is expensive, but considering all the issues surrounding this, it would seem to be necessary to do this muscle biopsy. And certainly they've had time (!)


That's a good point. According to the Boston Globe article kalikshama posted, the inpatient care where she's at costs the state $1,000/day. The test can't possibly be nearly that expensive.

The only thing I can think of is she won't consent to the biopsy, or any other test. She may be a ward of the state but there is no way they would do such an invasive test against her will.

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RE: Parents rights - 2/28/2014 10:29:43 PM   
BamaD


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quote:

ORIGINAL: DomKen

quote:

ORIGINAL: graceadieu

quote:

ORIGINAL: fucktoyprincess
So this begs the question of why they would not administer this test - it is expensive, but considering all the issues surrounding this, it would seem to be necessary to do this muscle biopsy. And certainly they've had time (!)


That's a good point. According to the Boston Globe article kalikshama posted, the inpatient care where she's at costs the state $1,000/day. The test can't possibly be nearly that expensive.

The only thing I can think of is she won't consent to the biopsy, or any other test. She may be a ward of the state but there is no way they would do such an invasive test against her will.

But they can hold her against her will.

< Message edited by BamaD -- 2/28/2014 10:31:49 PM >


_____________________________

Government ranges from a necessary evil to an intolerable one. Thomas Paine

People don't believe they can defend themselves because they have guns, they have guns because they believe they can defend themselves.

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Profile   Post #: 48
RE: Parents rights - 3/1/2014 8:54:01 AM   
fucktoyprincess


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Shouldn't there be an attorney representing the child in this case to demand the muscle biopsy test. If she tests positive for mito, and the parents were right all along, then theoretically, absent any other issues, she should be released to the custody of her parents, or at the very least be treated for the symptoms of mito.

Another poster mentioned that mito is fatal and the only treatment is symptomatic treatment - not sure of this myself, but this would explain why she is getting worse, if she in fact has mito.

Well meaning people do make mistakes, but I'm still going to stick with my gut which says that a whole group of doctors, nurses, staff, social workers, lawyers, judge(s) could not possibly all be making the same mistake of overlooking a real physical ailment and mistakenly thinking it is a psychiatric disorder. At the very least, perhaps she has a serious psychiatric disorder AND mito, but the parents were only treating the mito, and therefore, everyone feels she is better off hospitalized/institutionalized.

It's all awful, and of course I am sympathetic to the fact that on the surface it looks like well-meaning parents had their daughter taken away from them over a dispute between doctors - but everything in this thread points to the fact that we are all missing some very important facts from this case. My money is on the child having serious psychiatric issues above and beyond the mito - in other words, the mito is the least of her health concerns...

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Profile   Post #: 49
RE: Parents rights - 3/1/2014 8:01:51 PM   
BamaD


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quote:

ORIGINAL: fucktoyprincess

Shouldn't there be an attorney representing the child in this case to demand the muscle biopsy test. If she tests positive for mito, and the parents were right all along, then theoretically, absent any other issues, she should be released to the custody of her parents, or at the very least be treated for the symptoms of mito.

Another poster mentioned that mito is fatal and the only treatment is symptomatic treatment - not sure of this myself, but this would explain why she is getting worse, if she in fact has mito.

Well meaning people do make mistakes, but I'm still going to stick with my gut which says that a whole group of doctors, nurses, staff, social workers, lawyers, judge(s) could not possibly all be making the same mistake of overlooking a real physical ailment and mistakenly thinking it is a psychiatric disorder. At the very least, perhaps she has a serious psychiatric disorder AND mito, but the parents were only treating the mito, and therefore, everyone feels she is better off hospitalized/institutionalized.

It's all awful, and of course I am sympathetic to the fact that on the surface it looks like well-meaning parents had their daughter taken away from them over a dispute between doctors - but everything in this thread points to the fact that we are all missing some very important facts from this case. My money is on the child having serious psychiatric issues above and beyond the mito - in other words, the mito is the least of her health concerns...

You would think there is an appointed attorney, but I suspect he was appointed by the people who aren't doing the tests.

_____________________________

Government ranges from a necessary evil to an intolerable one. Thomas Paine

People don't believe they can defend themselves because they have guns, they have guns because they believe they can defend themselves.

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Profile   Post #: 50
RE: Parents rights - 3/3/2014 6:25:45 AM   
Yachtie


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BOSTON (CBS) – The Massachusetts Department of Children and Families confirmed Friday it’s working to send a teenager at the center of a bitter state custody dispute back to her home state of Connecticut.

The agency also announced that Tufts Medical Center will soon begin overseeing the treatment of 15-year-old Justina Pelletier, an apparent victory for her parents.

Pelletier has spent the past year in Massachusetts state custody undergoing psychiatric treatment as her parents and doctors at Children’s Hospital clashed over her diagnosis and treatment.



Good news and I hope the family sues.

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Profile   Post #: 51
RE: Parents rights - 3/3/2014 6:29:55 AM   
Kirata


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quote:

ORIGINAL: fucktoyprincess

I'm still going to stick with my gut which says that a whole group of doctors, nurses, staff, social workers, lawyers, judge(s) could not possibly all be making the same mistake of overlooking a real physical ailment and mistakenly thinking it is a psychiatric disorder.

They've been doing it for years.

The most important lesson from 83,000 brain scans

K.


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Profile   Post #: 52
RE: Parents rights - 3/3/2014 8:53:12 AM   
MAINEiacMISTRESS


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We had an incident like this happen with one of the families that used to come in My store. Their toddler kept getting broken bones from doing NOTHING, and the hospital reported them for child abuse. The state held him in custody saying the parents were physically abusing him (even though he had not even one bruise on his body). They had a long battle with the hospital and DHS, and THANKFULLY they finally found a doctor who properly diagnosed the child as having a rare bone disorder that made his bones extremely fragile (you would have thought the hospital would have been able to diagnose this themselves from his xrays). The boy was eventually returned to his loving parents and receive proper treatment for his condition...but wow, I witnessed the devastating shame they experienced when they were accused of abusing him. I don't think the parents will ever fully recover from that emotional trauma.

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Profile   Post #: 53
RE: Parents rights - 3/3/2014 11:11:47 AM   
MercTech


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When a physician is not presented with an instant diagnosis they often attribute psychosomatic reasons to the symptoms. I've actually had that happen twice in my life.

I was having repeated sinus infections and extreme pain. The eyes would even swell shut. The physician kept handing me benedryl and pseudofed and telling me to go back to work.
I was sent to stress counseling with a psychologist for my symptoms.
I passed out in a restaurant and the ER doctor actually did some tests. I has hospitalized for over a month with spinal meningitis.

After an accident with a runaway diesel generator and several minutes in an atmosphere of hot carbon black and atomized diesel fuel I started getting debilitating headaches and blurring of the vision. When an X-Ray only seemed to show "mucusoidal buildup consistent with chronic sinusitis" I was sent to psych for evaluation of my "migraines".
Thankfully, the psychiatrist conferred with an ENT specialist and had a CT scan done. I had a cyst growing in my left maxillary sinus. The biopsy showed a fleck of carbon black that had lodged in the sinus and formed the core of a cyst that was pushing on the optic nerve.

Misdiagnosis and insufficient diagnosis are much more endemic that the medical industry would have you believe. The long held concept of "treat the immediate symptom and see if the body will heal itself" is thoroughly embedded into the industry. Anything that truly needs a root cause analysis is passed around like a radioactive potato between specialists.

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Profile   Post #: 54
RE: Parents rights - 3/3/2014 11:32:25 AM   
BamaD


Posts: 20687
Joined: 2/27/2005
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quote:

ORIGINAL: Kirata


quote:

ORIGINAL: fucktoyprincess

I'm still going to stick with my gut which says that a whole group of doctors, nurses, staff, social workers, lawyers, judge(s) could not possibly all be making the same mistake of overlooking a real physical ailment and mistakenly thinking it is a psychiatric disorder.

They've been doing it for years.

The most important lesson from 83,000 brain scans

K.



They spent 11 years doing that to me over an allergy.

_____________________________

Government ranges from a necessary evil to an intolerable one. Thomas Paine

People don't believe they can defend themselves because they have guns, they have guns because they believe they can defend themselves.

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Profile   Post #: 55
RE: Parents rights - 3/3/2014 11:34:09 AM   
BamaD


Posts: 20687
Joined: 2/27/2005
Status: offline

quote:

ORIGINAL: MercTech

When a physician is not presented with an instant diagnosis they often attribute psychosomatic reasons to the symptoms. I've actually had that happen twice in my life.

I was having repeated sinus infections and extreme pain. The eyes would even swell shut. The physician kept handing me benedryl and pseudofed and telling me to go back to work.
I was sent to stress counseling with a psychologist for my symptoms.
I passed out in a restaurant and the ER doctor actually did some tests. I has hospitalized for over a month with spinal meningitis.

After an accident with a runaway diesel generator and several minutes in an atmosphere of hot carbon black and atomized diesel fuel I started getting debilitating headaches and blurring of the vision. When an X-Ray only seemed to show "mucusoidal buildup consistent with chronic sinusitis" I was sent to psych for evaluation of my "migraines".
Thankfully, the psychiatrist conferred with an ENT specialist and had a CT scan done. I had a cyst growing in my left maxillary sinus. The biopsy showed a fleck of carbon black that had lodged in the sinus and formed the core of a cyst that was pushing on the optic nerve.

Misdiagnosis and insufficient diagnosis are much more endemic that the medical industry would have you believe. The long held concept of "treat the immediate symptom and see if the body will heal itself" is thoroughly embedded into the industry. Anything that truly needs a root cause analysis is passed around like a radioactive potato between specialists.

And once that gets into your medical every doctor who sees it has an out if they don't know what the problem is.

_____________________________

Government ranges from a necessary evil to an intolerable one. Thomas Paine

People don't believe they can defend themselves because they have guns, they have guns because they believe they can defend themselves.

(in reply to MercTech)
Profile   Post #: 56
RE: Parents rights - 3/3/2014 12:11:24 PM   
BamaD


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Joined: 2/27/2005
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quote:

ORIGINAL: Yachtie

BOSTON (CBS) – The Massachusetts Department of Children and Families confirmed Friday it’s working to send a teenager at the center of a bitter state custody dispute back to her home state of Connecticut.

The agency also announced that Tufts Medical Center will soon begin overseeing the treatment of 15-year-old Justina Pelletier, an apparent victory for her parents.

Pelletier has spent the past year in Massachusetts state custody undergoing psychiatric treatment as her parents and doctors at Children’s Hospital clashed over her diagnosis and treatment.



Good news and I hope the family sues.

That is good news.

More on this and an





STATE LOCAL

Missing boy, seized girl have Massachusetts' child services under fire



A missing 5-year-old boy and a 15-year-old girl’s forced estrangement from her biological family have put the spotlight on Massachusetts’ troubled Department of Children and Families.

The two cases are just the latest in a series of disturbing events involving children entrusted to the department over the last decade or more. But now, lawmakers are vowing to hold social workers and the administrators who manage them, accountable. A report released last July found 95 children died while in the department’s care between 2001 and 2010, and a top-to-bottom state audit is now under way.



"If a social worker doesn't do his or her job, they need to be held responsible, but it goes just beyond the lying social workers,” said Democratic state Rep. David Linsky. “If supervisors don't do their job, they need to be held responsible. If middle management doesn't do their job, they need to be held responsible, and all the way up the chain of authority here."

"If a social worker doesn't do his or her job, they need to be held responsible, but it goes just beyond the lying social workers.”

- Massachusetts Rep. David Linsky

The two latest cases to make headlines involve 15-year-old Justina Pelletier, who was put in foster care even though her parents say all they did was follow doctor’s orders, and Jeremiah Oliver, a 5-year-old boy the department inexplicably lost track of.

“Right now we don't know what happened to Jeremiah Oliver,” Linsky said. “We don't know if he is dead or alive."

Gov. Deval Patrick noted that the social worker responsible for monitoring Jeremiah’s safety has been fired, as well as her immediate supervisor and a program manager. According to Patrick, the social worker had failed to conduct required visits, and her supervisor made false entries in the case file indicating that the visits had, in fact, been made.

Patrick hopes for more answers from an independent review he commissioned by the Child Welfare League of America. Its findings are due in the coming weeks. In the meantime, he has called for increased funding to the DCF in 2015, money the DCF states it will use to enhance screening and investigations.

"I think we have a great opportunity, ironically, by this terrible tragedy to rethink and to reinvigorate the department and I want to assure the public that that is what we intend to do," Patrick said.

One lawmaker questioned whether simply increasing funding is enough to reform the agency charged with protecting the state’s most vulnerable citizens.

"You have to ask yourself, is a shortage of resources responsible for the failure to communicate adequately, the failure to be accurate in reporting, falsifying documents, lying about specific situations?" Republican state Sen. Bruce Tarr asked.

Jeremiah Oliver was first reported missing by his 7-year old sister, who told school officials that her mother’s boyfriend was abusing her and that she had not seen her little brother for months. The social worker handling Jeremiah’s case failed to complete routine home visits, last checking in on the child in May 2013. His mother, Elsa Oliver, is being charged with several counts, including reckless endangerment of a child, and is awaiting trial.

Justina, who lives in Connecticut, was taken into custody by the DCF after her parents disagreed with a diagnosis and treatment plan suggested by doctors at the Boston Children’s Hospital. Her primary care doctor had diagnosed her with Mitochondrial Disease, a condition that affects cells throughout the body. But when the doctors at Boston Children’s Hospital told authorities her condition was partly psychologically induced, DCF took custody of the girl.

The agency has been under fire for several years. In 2010, 23-month-old Kaydn Hancock was beaten to death by his mother, who pleaded guilty to manslaughter and is serving time. She had broken the boy’s arm just weeks before the fatal beating, and although DCF removed Kaydn from the home initially, he was returned less than a week later.

"I was calling them, begging, pleading, crying, just anything because I was desperate for help,” Kaydn's maternal great-aunt, Andrea Rizzitano, told Fox News. “Not only did his mother rob him of his life, but DCF robbed him of his life because they put him back into a situation that he was in imminent danger."

A spokesperson for the DCF told Fox News in an email that "the most recent child fatality report showed a decline in child fatalities."
other problem the State has.





_____________________________

Government ranges from a necessary evil to an intolerable one. Thomas Paine

People don't believe they can defend themselves because they have guns, they have guns because they believe they can defend themselves.

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Profile   Post #: 57
RE: Parents rights - 3/3/2014 1:40:23 PM   
DomKen


Posts: 19457
Joined: 7/4/2004
From: Chicago, IL
Status: offline
quote:

ORIGINAL: Kirata


quote:

ORIGINAL: fucktoyprincess

I'm still going to stick with my gut which says that a whole group of doctors, nurses, staff, social workers, lawyers, judge(s) could not possibly all be making the same mistake of overlooking a real physical ailment and mistakenly thinking it is a psychiatric disorder.

They've been doing it for years.

The most important lesson from 83,000 brain scans

K.

You'll believe any quack won't you
http://www.washingtonpost.com/lifestyle/magazine/daniel-amen-is-the-most-popular-psychiatrist-in-america-to-most-researchers-and-scientists-thats-a-very-bad-thing/2012/08/07/467ed52c-c540-11e1-8c16-5080b717c13e_story.html
http://www.sciencebasedmedicine.org/spect-scans-at-the-amen-clinic-a-new-phrenology/

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Profile   Post #: 58
RE: Parents rights - 3/26/2014 9:18:49 AM   
BamaD


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Joined: 2/27/2005
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FR
BOSTON (AP) — A Connecticut girl has been placed in the permanent custody of Massachusetts child welfare officials amid a legal dispute involving different medical diagnoses by two hospitals.


Juvenile court Judge Joseph Johnston in Boston issued the ruling Tuesday in the case of 15-year-old Justina Pelletier of West Hartford, Conn., whose parents sought custody. A family friend says the couple is devastated by the ruling.

The Massachusetts Department of Children and Families took emergency custody of Justina last year.

Tufts Medical Center had treated Justina for mitochondrial disease, a disorder that affects cellular energy production. But Boston Children's Hospital later diagnosed her problems as psychiatric.

When Justina's parents, Linda and Lou Pelletier, rejected the new diagnosis and tried to take her back to Tufts, the Massachusetts department took custody of the girl.

From msn.com



_____________________________

Government ranges from a necessary evil to an intolerable one. Thomas Paine

People don't believe they can defend themselves because they have guns, they have guns because they believe they can defend themselves.

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Profile   Post #: 59
RE: Parents rights - 3/26/2014 2:41:27 PM   
DomKen


Posts: 19457
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From: Chicago, IL
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quote:

ORIGINAL: BamaD

FR
BOSTON (AP) — A Connecticut girl has been placed in the permanent custody of Massachusetts child welfare officials amid a legal dispute involving different medical diagnoses by two hospitals.


Juvenile court Judge Joseph Johnston in Boston issued the ruling Tuesday in the case of 15-year-old Justina Pelletier of West Hartford, Conn., whose parents sought custody. A family friend says the couple is devastated by the ruling.

The Massachusetts Department of Children and Families took emergency custody of Justina last year.

Tufts Medical Center had treated Justina for mitochondrial disease, a disorder that affects cellular energy production. But Boston Children's Hospital later diagnosed her problems as psychiatric.

When Justina's parents, Linda and Lou Pelletier, rejected the new diagnosis and tried to take her back to Tufts, the Massachusetts department took custody of the girl.

From msn.com



I still think there is a lot more to this story that we're not getting.

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Profile   Post #: 60
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