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Phurfur

Justina Pelletier

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The Massachusetts Department of Children and Families took emergency custody of Justina on Valentines Day 2013 after doctors at Tufts Medical Center, which had been treating her for a rare condition, and doctors as Boston Childrens Hospital, clashed over the cause of her medical problems, which included difficulty eating and walking.

 

At Tufts, Justina had been treated for mitochondrial disease, a group of rare genetic disorders affecting cellular energy production. When Justina began experiencing some gastrointestinal problems, the Tufts doctor treating her, Dr. Mark Korson, wanted the girl to visit Dr. Alejandro Flores at Boston Children's Hospital, according to the family's attorney, Phil Moran. Flores had treated Justina in the past, Moran said, and Korson thought it beneficial for the teen to see a gastroenterologist.

 

What happened next was a "tragic nightmare" for Justina and her family, Moran told FoxNews.com.

 

Justina was taken by ambulance to Boston Children's Hospital because she was in a wheelchair at the time and a heavy snow storm was blanketing the region. Because she arrived by ambulance, she was taken directly into the hospital's emergency room, where a "resident refused to send her to Dr. Flores" and, "declared this was his case," according to Moran. He said the unnamed resident then called upon a psychologist who diagnosed Justina with somatoform disorder -- a mental condition in which a patient experiences symptoms that are real but have no physical or biological explanation. Justina was diagnosed with the disorder "within 25 minutes," Moran claims.

 

The Pelletier family rejected the new psychiatric diagnosis and wanted to bring Justina back to Tufts, Moran said. He claims the hospital tried to force the girl's parents to sign papers preventing them from seeking another opinion.

 

After tempers flared between the Pelletiers and staff at Boston Children's, the hospital notified the state that it suspected the parents of medical child abuse.

 

The girl was kept at Boston Childrens psychiatric ward for nearly a year, but was then slated to be transferred to another state facility. Johnston said the family, which vented its anger in various media interviews, hampered efforts to have her placed as near them as possible. She is currently being held at the Wayside Youth and Family Support Network facility in Framingham, Mass.

 

Lou Pelletier told Fox News it shouldn't surprise anyone that he was left angry after seeing his child taken away.

 

"There's never been a complaint about the Pelletier family regarding our daughter, our family, prior to Boston Children's Hospital getting involved," Pelletier said. "The complaints have been when DCF decided we didn't smile rightly at them or do whatever."

 

He said Johnson ignored the testimony of his daughter's original doctors, who stand by the diagnosis of mitochondrial disease. In the more than a year since the ordeal began, the Pelletiers have only been allowed hourly visits each week with their daughter, whose condition, they say, has deteriorated. She has not attended school or church since the family lost custody of her, he said.

 

"Tufts was working fine with her, diagnosed medically, going to school, ice skating and doing all those things," Lou Pelletier said. "Look at her then and look at her now."

 

Justina's older sister, Jennifer, told Fox News her parents are loving and supportive. Watching her sister's condition worsen in the hands of Massachusetts officials has been frightening, she said.

 

"If something happens to my sister under their care, she's not just going to be another number in the system," Jennifer said. "It's insane."

 

Johnston's ruling leaves it up to the state Department of Children and Families to decide whether or when Justina should be returned to her family, and leaves open the possibility the girl will be in state care until she turns 18. The judge is expected revisit the decision to award permanent custody in a follow-up court hearing on May 25.

 

In the meantime, Lou Pelletier said his family is appealing a decision in which Johnston backed the Boston Children's doctors, and said the family's attorneys have filed a writ of habeus corpus against Massachusetts for wrongful imprisonment.http://www.foxnews.com/health/2014/03/26/justina-pelletier-to-remain-in-custody-massachusetts-judge-rules/

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This makes no sense. Mitochondrial disorders are diagnosed by gene testing on blood or tissue (usually muscle) specimens, which surely had been performed before concluding she had an obscure diagnosis. The hospitals treating her should have access to all of her medical records, and a decision to take custody from her parents would not be taken lightly.

 

Wouldn't be surprised if this is a case of Munchausen by proxy or medical child abuse, where her parents are fabricating Justina's illness because they are crazy. As medical history is protected by law to remain confidential, the treating physicians and DCF can't release all the details. Meanwhile, the crazy parents can say whatever promotes mouth-breathing journalism...

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This makes no sense. Mitochondrial disorders are diagnosed by gene testing on blood or tissue (usually muscle) specimens, which surely had been performed before concluding she had an obscure diagnosis. The hospitals treating her should have access to all of her medical records, and a decision to take custody from her parents would not be taken lightly.

 

Wouldn't be surprised if this is a case of Munchausen by proxy or medical child abuse, where her parents are fabricating Justina's illness because they are crazy. As medical history is protected by law to remain confidential, the treating physicians and DCF can't release all the details. Meanwhile, the crazy parents can say whatever promotes mouth-breathing journalism...

jump to conclusions much ?

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jump to conclusions much ?

Educated guesses, which are much more likely than a hospital abducting an innocent child from a perfectly reasonable family.

 

If somebody said something that sounded crazy about plumbing/electrical work, or whatever it is you do, would you be able to provide a more likely explanation without a ton of details?

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jump to conclusions much ?

Well, what do you know? I've highlighted the salient points: http://www.slate.com/articles/health_and_science/medical_examiner/2014/04/justina_pelletier_s_mitochondrial_disease_boston_children_s_hospital_suspects.html

Linda and Lou Pelletier brought their daughter to Boston Children’s Hospital last year. They were looking for a gastroenterologist to help with 14-year-old Justina’s mitochondrial disease, a rare disorder that causes widespread and nonspecific symptoms. Justina Pelletier never saw a GI specialist, though. Instead, she officially became a ward of the state last week.

The physicians at Boston Children’s concluded that Justina did not have mitochondrial disease. They believed that her symptoms were the result of psychological stress, caused in part by her parents. They accused the Pelletiers of subjecting Justina to dangerous and unnecessary medical treatments. When the hospital petitioned the state to take custody, the Boston Globe picked up the story and painted an unflattering picture of both the state government and the doctors at Boston Children’s Hospital.

It’s easy to get angry about this scenario—and there are some troubling things about the way the conflict has been managed—but the doctors at Boston Children’s deserve a defense. First, we’re essentially hearing only one side of the Justina Pelletier story. Neil Swidey and Patricia Wen, the reporters covering the story for the Boston Globe, have done an admirable reporting job, but hospitals can’t say much about their patients. Linda and Lou Pelletier appear to have provided much of Wen and Swidey’s information. Second, the science is complicated. Mitochondrial disease (Justina Pelletier’s original diagnosis) and medical child abuse (the Boston Children’s diagnosis) can look extremely similar. Both can be deadly if not treated properly.

Mitochondrial disease is a broad category of disorders caused by defects in how energy is produced within cells. The disease can manifest almost anywhere in the body, and symptoms vary widely between patients. The most common symptoms are neurological, because the nervous system demands a large amount of energy. Weakness, poor reflexes, fainting, and headaches are classic symptoms of mitochondrial disease, but even those occur in only 45 percent of sufferers. Liver disorder, abnormal heart rhythms, and kidney failure are also documented symptoms.

Justina Pelletier exhibited some of the symptoms associated with mitochondrial disease. Her speech was sometimes slurred, she had difficulty walking even short distances, and she had severe digestive problems. Her sister had also been diagnosed with the disease. Based on media reports, a mitochondrial disorder seems a plausible explanation.

“Mito,” however, is incredibly difficult to diagnose definitively. Weakness and headaches are symptomatic of hundreds of diseases. Even when combined with chronic fatigue or poor digestion, the list of possible causes remains long. No single test has proven effective at both detecting mitochondrial disease and ruling it out. It is also rare: Mitochondrial disease is believed to occur in approximately one in 8,000 children.

The doctors at Boston Children’s who rejected Justina’s mitochondrial disease diagnosis identified two red flags. First, many physicians attempting to diagnose the disorder look for an accumulation of mitochondria in the cell membranes of skeletal muscles. This finding is often called the “hallmark of mitochondrial disorders.” Media reports suggest that Mark Korson, Pelletier’s doctor at Tufts Medical Center, declined to take a muscle biopsy before diagnosing her with mitochondrial disease. In addition, the doctors at Boston Children’s pointed out that Pelletier’s levels of plasma amino acids and other common blood markers of mitochondrial disease appeared normal.

This doesn’t mean Korson’s diagnosis was wrong. Patients with mitochondrial disease have extreme difficulty with pain and handle anesthesia poorly, so some doctors avoid muscle biopsies. And not all mitochondrial disorders manifest in blood tests. Still, the doctors at Boston Children’s were suspicious.

 

They were also aware that there’s another, more sinister, problem with mitochondrial disease: The diagnosis is sometimes used as a cover for medical child abuse. Also called Münchausen, or hypochondria, by proxy, medical child abuse is the parental practice of subjecting children to unnecessary and dangerous medical care. The parents go from doctor to doctor, dissatisfied when the physician fails to produce a significant, profound, or rare diagnosis. Medically abused children have usually undergone several procedures, some of them risky. They show signs of anxiety that abate when the parent is absent. A 2011 study of medical child abuse cases published in the journal Pediatrics suggested that many medical child abusers seek out a diagnosis of mitochondrial disease, in part because it guarantees a long period of heavy involvement with the medical system. Although the study’s sample size was small, the numbers are still deeply troubling: More than half of children subjected to medical child abuse had been tested for mitochondrial disease.

Just as Justina Pelletier exhibited some symptoms consistent with mitochondrial disease, her case also has some of the hallmarks of medical child abuse. One of her chief complaints was digestive trouble, the most common symptom among medically abused children. She had gone through extreme surgical procedures, including the placement of a permanent port in her belly to flush her digestive tract. Her parents had engaged in physician shopping, and experts at Boston Children’s felt that Justina’s emotional state improved when her mother left the room.

Mark Korson, the Tufts doctor who diagnosed Justina Pelletier with mitochondrial disorder, has criticized the doctors at Boston Children’s on several grounds. First, he argues that there are no objective tests for the diagnosis they have made, which represents nothing more than a “best guess.” True enough, but Boston Children’s could lob a similar accusation back at him, especially considering he apparently declined to use one of the few diagnostic tests available for mitochondrial disease.

Korson also accuses Boston Children’s of taking extreme measures: “[T]he team has demanded that Justina be removed from the home and severe restrictions imposed on contact with her parents. This represents the most severe and intrusive intervention a patient can undergo.” That statement is debatable, to say the least. Separating a child from her parents, although admittedly traumatic, is easily reversible and carries no risk of death. Installing a permanent port entails significant surgical risk, and such ports frequently become infected.

The doctors at Boston Children’s had few options if they really believed in their diagnosis. Just as the treatment for strep throat is antibiotics, the treatment for medical child abuse is separating a child from her parents. Sending Justina Pelletier home would have represented the height of irresponsibility if their diagnosis was correct. One in 10 children who suffers medical abuse eventually dies at the hands of his or her parent.

 

New technologies are coming onto the market that should improve the diagnosis of mitochondrial disease. Courtagen Life Sciences recently released a test that examines all of the genes that govern mitochondrial function. The test, however, is expensive and not yet widespread. Hopefully improvements in diagnosis will blunt the disease’s power as a weapon of medical abuse.

Linda and Lou Pelletier may be the innocent victims of an all-powerful hospital that followed a misdiagnosis to its painful and damaging end. Or perhaps they are sick people who have tortured their daughter with unnecessary medical procedures. They could even be both—the parents of children with mitochondrial disease often suffer from the same disorder, which can cause emotional and psychiatric problems, including in some cases Münchausen. It may be a long time before we know who was right in this case. Even then, it may be wrong to assign blame.

 

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You might want to do some research into the mass dcs program before you have their back.

But certainly not suprised you wouldnt support some hack government agency knowing whats best.

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You might want to do some research into the mass dcs program before you have their back.

But certainly not suprised you wouldnt support some hack government agency knowing whats best.

I don't have the Mass DCS' "back". And this isn't a liberal versus conservative, little vs. big government issue.

 

I am assuming the doctors (pleural) at Boston Children's are competent, perhaps more so than a single physician at Tufts. One who didn't even attempt to make a definitive diagnosis before subjecting the child to potentially dangerous and unnecessary procedures, and in all likelihood committing her to several medications as well. Moreover, doctors generally don't make willy-nilly accusations which result in child protective services getting involved with their patients. I may be wrong, but I think the likelihood of a misdiagnosis and crazy abusive parents is higher than the BC docs and Mass DCS conspiring to imprison the child with a rare condition. One that coincidentally is associated with medical child abuse.

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Jesus, fockin drobs can turn anything into a "political issue." Obsess much?

I did ? Read up on mass dcs saul, then get back to me, read about them forcing visitation for convicted child molesting parents, or the 5 year old thats disappeared and presumed dead.

Its mass, guess who runs these programs bud.

The real hacks, that you love love love.

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I don't have the Mass DCS' "back". And this isn't a liberal versus conservative

The sooner that you realize that lunkheads like Drobeski, GooglePilot, and phurfur see EVERYTHING as political and an 'us vs. them' battle, the sooner you'll be able to make fun of them and just have a good laugh at their expense.

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I did ? Read up on mass dcs saul, then get back to me, read about them forcing visitation for convicted child molesting parents, or the 5 year old thats disappeared and presumed dead.

Its mass, guess who runs these programs bud.

The real hacks, that you love love love.

You sound unstable and stupid.

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I have seen the parents interviewed a few times. They don't seem crazy to me, but who knows. On the face of it I think the hospital is out of line.

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A judge has sided with the medical professionals on this, in large part because of the parents' behavior. :dunno:

 

I'm trying to figure out why you'd call an ambulance so your child can make an appointment with a specialist. Not exactly a life and death situation.

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Jesus, fockin drobs can turn anything into a "political issue." Obsess much?

Jesus, fockin drobs can turn anything into a "political issue." Obsess much?

Right or wrong When the government takes control of your child it is political. You have to be very stupid not to see that. Maybe if it happened to you you would understand.

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I did ? Read up on mass dcs saul, then get back to me, read about them forcing visitation for convicted child molesting parents, or the 5 year old thats disappeared and presumed dead.

Its mass, guess who runs these programs bud.

The real hacks, that you love love love.

The ethics of Mass DCS are irrelevant concerning the underlying diagnosis - the physicians at Boston Children's were the ones who raised suspicion for medical child abuse. They aren't government employees.

 

I already explained why the BC docs are more credible than the Tufts doctor who neglected to perform a critical diagnostic test to establish (or refute) his suspicion of mitochondrial disease.

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A judge has sided with the medical professionals on this, in large part because of the parents' behavior. :dunno:

 

I'm trying to figure out why you'd call an ambulance so your child can make an appointment with a specialist. Not exactly a life and death situation.

That judge must be a filthy libruhl!

 

And people call ambulances for non-emergencies all the time.

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I have seen the parents interviewed a few times. They don't seem crazy to me, but who knows. On the face of it I think the hospital is out of line.

But the hospital cannot provide its "side" of the story, lest they betray patient confidentiality. Putting on a good face for the media does not mean the parents aren't crazy, and people with more information than you or I have decided they aren't fit to care for their child.

 

I've been a doctor for over a decade, and only once have I notified protective services (via social work) of suspected abuse. I was extremely reluctant to do so given the consequences and I'm sure the BU docs didn't take that decision lightly either. What incentive would they have to take this child from her parents?

 

On the other hand, the Tufts physician has promoted at least one procedure that financially benefits him as a result of the suspect diagnosis.

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But the hospital cannot provide its "side" of the story, lest they betray patient confidentiality. Putting on a good face for the media does not mean the parents aren't crazy, and people with more information than you or I have decided they aren't fit to care for their child.

 

I've been a doctor for over a decade, and only once have I notified protective services (via social work) of suspected abuse. I was extremely reluctant to do so given the consequences and I'm sure the BU docs didn't take that decision lightly either. What incentive would they have to take this child from her parents?

 

On the other hand, the Tufts physician has promoted at least one procedure that financially benefits him as a result of the suspect diagnosis.

What part of "but who knows" don't you understand?

 

Neither you, nor I, know the details so making statements about the parents being "crazy" seems a little out of line on your part.

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What part of "but who knows" don't you understand?

 

Neither you, nor I, know the details so making statements about the parents being "crazy" seems a little out of line on your part.

People that know the details have permitted the child to be kept in custody, which implies she is not safe at home. Wonder why that is the case?

 

And I made a disclaimer already that I could be wrong, but my opinion is the likelihood the parents are crazy exceeds that of a fock up by the BU docs and effective abduction of the child from reasonable parents.

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What part of "but who knows" don't you understand?

 

Neither you, nor I, know the details so making statements about the parents being "crazy" seems a little out of line on your part.

Well one of you went to medical school and the other did not. So I suspect he knows a bit more about medical issues/diagnoses than you but call me crazy

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Well one of you went to medical school and the other did not. So I suspect he knows a bit more about medical issues/diagnoses than you but call me crazy

Did I question his medical knowledge?

 

You have to be the dumbest poster on the bored.

 

This would be like you commenting on a legal case from across the country without having all the facts. You wouldn't be dumb enough to jump to conclusions as he has, would you?

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Well one of you went to medical school and the other did not. So I suspect he knows a bit more about medical issues/diagnoses than you but call me crazy

The concept of an educated guess eludes the willfully ignorant.

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The concept of an educated guess eludes the willfully ignorant.

Willfully ignorant? I guess I would have to agree. I don't know all the facts, and I don't claim to. You seem to take some facts and conclude you know everything about the situation.

 

Let's consider this fact:

 

Justina's older sister, Jennifer, told Fox News her parents are loving and supportive. Watching her sister's condition worsen in the hands of Massachusetts officials has been frightening, she said.

 

 

Seems like someone who knows more about the living situation in their house disagrees with your opinion.

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It seems as though the close union between the state and the hospital has effectively backed them up against a wall together. If they admit this as a mistake then they both face substantial lawsuits, so the preferred alternative is to likely spend far less in legal costs and hope the family runs out of money before they can win, or at least find a way to settle for less money. They simple cannot just admit they were wrong.

 

It's why the government demands that people who are in jail and then found to be not guilty first admit guilt in order to secure their release.

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It seems as though the close union between the state and the hospital has effectively backed them up against a wall together. If they admit this as a mistake then they both face substantial lawsuits, so the preferred alternative is to likely spend far less in legal costs and hope the family runs out of money before they can win, or at least find a way to settle for less money. They simple cannot just admit they were wrong.

 

It's why the government demands that people who are in jail and then found to be not guilty first admit guilt in order to secure their release.

You take it as established that the hospital was in the wrong. Did I miss something or isn't that still very much an open question?

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Willfully ignorant? I guess I would have to agree. I don't know all the facts, and I don't claim to. You seem to take some facts and conclude you know everything about the situation.

 

Let's consider this fact:

 

 

 

Seems like someone who knows more about the living situation in their house disagrees with your opinion.

I know how the medical system works.

 

Despite the sister's opinion, the courts have sided with the BU docs, suggesting my educated guesses aren't far off. If it turns out the BU docs are wrong, they should suffer the legal consequences.

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It seems as though the close union between the state and the hospital has effectively backed them up against a wall together. If they admit this as a mistake then they both face substantial lawsuits, so the preferred alternative is to likely spend far less in legal costs and hope the family runs out of money before they can win, or at least find a way to settle for less money. They simple cannot just admit they were wrong.

 

It's why the government demands that people who are in jail and then found to be not guilty first admit guilt in order to secure their release.

Why assume a conspiracy over the more logical explanation?

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You take it as established that the hospital was in the wrong. Did I miss something or isn't that still very much an open question?

I thought you were defending Penultimate's conclusion the parents were crazy and the hospital was right.

 

Now it is an open question?

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I thought you were defending Penultimate's conclusion the parents were crazy and the hospital was right.

 

Now it is an open question?

No you misinterpreted my post. I was simply pointing out the Penultimate knows a helluva lot more about the medical field than you and is just generally much, much, MUCH smarter than you.

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I thought you were defending Penultimate's conclusion the parents were crazy and the hospital was right.

 

Now it is an open question?

No, he was just observing that I likely have more background upon which to make an educated guess.

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I know how the medical system works.

 

Despite the sister's opinion, the courts have sided with the BU docs, suggesting my educated guesses aren't far off. If it turns out the BU docs are wrong, they should suffer the legal consequences.

I will put more weight into the opinion of someone who has lived her entire life in the household over someone who had never even met anyone involved in the situation.

 

It seems to me you are one of those Drs who think just because you went to medical school you know it all. :rolleyes:

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You take it as established that the hospital was in the wrong. Did I miss something or isn't that still very much an open question?

 

The hostipal never administered the requisite tests to establish her condition, what they have done is guess, nothing more. Given that another hospital arrived at another diagnosis, and the girls condition has not improved with the limited access her parents now have, it would seem that the hospital is clearly in th wrong here. The gag order by the judge is also something to consider, given the circumstances one would surmise that the tag team of government and hospital have nothing to fear, but once that order was issued it became clear that they know they overstepped on this one.

 

The parents are going to fight, as they should, ultimately they will have to be ready to settle, and in the end it will ruin them financially, but it will be the only way to wrest their child from an abusive and corrupt system.

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No you misinterpreted my post. I was simply pointing out the Penultimate knows a helluva lot more about the medical field than you and is just generally much, much, MUCH smarter than you.

 

 

I will ask once again, and I am sure you will continue to run away: Where have I questioned his medical knowledge?

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