Family battling Children’s Hospital to bring teen home for Christmas

[MyBelle]

Well, you comments weren't specific to this case alone. You stated, "No wonder so many kids are in danger in this country." That's what I was responding to.

There's a good chance you are right about this case. I don't know. I have serious concerns about it although I agree with LindaNJ that the parents are making things much more difficult and polarized.

But to say that those of us who have no medical credentials cannot judge the case, that's ludicrous. The child's longtime physician who diagnosed her and treated her for mitochondrial disorder, as well as her long time psych, 100% disagree with the medical team at BCH partially comprised of young, new doctors, who had never met Justina before and who made an immediate decision and diagnosis -medical abuse and somatoform - the latter which has since been in question when it comes to Justina and which is: "a somewhat dubious and quite controversial diagnostic category introduced into the psychiatric classification systems some 25 years ago. Ever since, there has been a debate about the validity of this diagnostic concept, which has a psychodynamic basis and is related to another ambiguous concept of 'somatization'." http://cfids-cab.org/cfs-inform/CFS.case.def/janca05.txt

If all the docs were in agreement in this case, there would be no controversy.

But aside from that, experts give opinions that lay people analyze for validity and accuracy, all the time. Those lay people? Juries. And sometimes just regular people do so, who decide the doctor treating them (or their children) may not be right.

The best we can do with expert opinions when dealing with issues that are not subject to 100% definitive, objective testing, is to listen to the experts and if they disagree, weigh and balance their respective positions.

Finally, Justina's long time doctors were barred from participating in the BCH team treating Justina and later barred from court and giving testimony, at first, when the initial decision to remove her from her parents and then keep her in state custody, was made. Yes, they later allowed them to give testimony but once a court makes a decision, they are quite reluctant to admit there may have bee a mistake and you better believe that the hospital and DCF would defend their decisions just a strenuously as prosecutors who demand a retrial or continue to insist on guilt in cases where clear evidence shows a convicted prisoner serving decades for a crime is, in fact, innocent.

Your opinion appears to be based on quite a bit of misinformation. The facts of this case are now well known and many differ wildly from those alleged by the parents. BCH could not ignore the fact that Justina had not been definitively diagnosed with Mito by Dr. Korson. He had not done a muscle biopsy and BCH couldn't ignore her metabolic work-up. To suggest the care at BCH was somehow compromised because of the doctors' ages really doesn't merit a response. Justina was hospitalized for 3 days at BCH and her medical needs continue to be managed by highly educated and trained specialists.

JMO

“It’s mito,” the mother said.

But Peters had already begun to question that assessment. Here was a girl who was on multiple medications and who had undergone multiple interventions at the hands of multiple specialists, but all that care “has not yielded a definitive unifying diagnosis,” he wrote in Justina’s medical chart.

He noted that two of the criteria often used in arriving at a mitochondrial disease diagnosis were not present in Justina’s case. “Metabolic workup was unremarkable,” he wrote, adding, “She has not had a muscle biopsy.”


http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

[jjenny]

Your opinion appears to be based on quite a bit of misinformation. The facts of this case are now well known and many differ wildly from those alleged by the parents. BCH could not ignore the fact that Justina had not been definitively diagnosed with Mito by Dr. Korson. He had not done a muscle biopsy and BCH couldn't ignore her metabolic work-up. To suggest the care at BCH was somehow compromised because of the doctors' ages really doesn't merit a response. Justina was hospitalized for 3 days at BCH and her medical needs continue to be managed by highly educated and trained specialists.

JMO

“It’s mito,” the mother said.

But Peters had already begun to question that assessment. Here was a girl who was on multiple medications and who had undergone multiple interventions at the hands of multiple specialists, but all that care “has not yielded a definitive unifying diagnosis,” he wrote in Justina’s medical chart.

He noted that two of the criteria often used in arriving at a mitochondrial disease diagnosis were not present in Justina’s case. “Metabolic workup was unremarkable,” he wrote, adding, “She has not had a muscle biopsy.”


http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

What exactly did BCH do to diagnose her with somatoform? There is no test for it at all. There is no objective proof that she has somatoform.
They can speculate all day long that she has it.
That's all it basically amounts to-speculation or a "hunch" (as doctor Korson put it).

 

[MyBelle]

What exactly did BCH do to diagnose her with somatoform? There is no test for it at all. There is no objective proof that she has somatoform.
They can speculate all day long that she has it.
That's all it basically amounts to-speculation or a "hunch" (as doctor Korson put it).

BCH didn't make the diagnosis, educated and trained physician specialists made the diagnosis. Furthermore, the Judge spoke to Dr. Korson at a closed hearing and he's now part of the team managing Justina's care. Why would he do that if he felt she was receiving improper care?

Seems to me if Dr. Korson was so concerned about a proper diagnosis, his priority would have been on performing a muscle biopsy to support his own working diagnosis of Mito rather than accusing other physicians of speculating.

JMO

 

[jjenny]

BCH didn't make the diagnosis, educated and trained physician specialists made the diagnosis. Furthermore, the Judge spoke to Dr. Korson at a closed hearing and he's now part of the team managing Justina's care. Why would he do that if he felt she was receiving improper care?

Seems to me if Dr. Korson was so concerned about a proper diagnosis, his priority would have been on performing a muscle biopsy to support his own working diagnosis of Mito rather than accusing other physicians of speculating.

JMO

Biopsy is dangerous. And maybe Dr. Korson wasn't so concerned because he couldn't possibly envision the child was going to be removed from her parents over a dispute in diagnosis.

 

[MyBelle]

Biopsy is dangerous. And maybe Dr. Korson wasn't so concerned because he couldn't possibly envision the child was going to be removed from her parents over a dispute in diagnosis.

There will be disputes in diagnosis if basic diagnostic procedures aren't performed. Dr. Korson was concerned enough about Justina's sister that a muscle biopsy was done. Justina had multiple, invasive "dangerous" procedures performed. A physician can't ignore a lack of documentation in a diagnosis.

The child was not removed from her parents over a dispute in diagnosis. They removed her because of the fear she was a victim of medical abuse.

JMO

 

[lawstudent]

That's not true. Globe obtained hospital records. This child repeatedly told stuff at BCH she wants to go home.

"Justina repeatedly told staff she wanted to go home, but the decision did not rest only with Children’s. A hospital spokesman said the facility “seeks to transfer patients to less medically intensive environments as soon as they are medically ready and a location is available.” The exact location however, would be up to the state child protection agency."

http://www.bostonglobe.com/metro/20...l-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html

I have to be honest that I'm coming around a bit more to "your" side because something is not adding up reading more and more about this in terms of DCF's choices - part of this is confidentiality, so I don't know how much it can be helped, but huge pieces of this story are missing. You don't need to be a doctor to figure it out - I'm certainly not one - but there definitely are certain standards and procedures that happen and a lot of those details are nonexistent right now, so people need to understand they do not know anything close to what actually happened. Even if this has all just been a terrible injustice, we don't know the half of it.

As I see it covered more in other media sources, my suspicions are rising, although I still cannot figure out what is going on because I don't know why Children's Hospital would work this hard to come up with some evil plot and I do believe the parents have major issues that complicate things. I do think part of it is the parents just pissed everyone off so much that they are victims of retaliation, but I do believe there is still more to this story. The problem with believing this is all the fault of DCF or Children's is that you have to believe so many people were involved in this whole weird transfer to Boston and not seeing the rights specialist and a sudden diagnostic change and then a long term hospitalization plus custody loss...a lot of events and people are in play, and the common players are the parents.

However, I have major issues with the Boston Globe's reporting, and I rely on it a lot for research for work/school/crime researching. I have found glaring inaccuracies in almost every article I've hard to research lately - to the point where I do cannot rely on half of what is in that article. For example, it's unclear if they obtained extensive medical records or if the parents gave them an affidavit submitted to the court quoting from medical records, and since the affidavit was submitted by DCF the info would be selectively chosen in its favor. This is exactly the type of error I see in the Globe - completely wrong legal interpretations, medical interpretations, and terminology. It's pathetic but the Herald has actually surpassed the Globe in accuracy, in my opinion (although it doesn't try to get too in depth so that's fairly easy). I know that sounds like shooting the messenger, but I actually tend to assume the opposite of the Globe's reporting at this point - it's that bad. If they quote from a document or put a direct quote from a person, I believe it. What those documents are, what the implications are, and anything paraphrased is automatically rejected by me if I can't independently verify it. I can't believe the stuff I've seen from them lately.

What's sad is the Globe actually could fill in a lot of these details, even without all the records, just by calling up experts about certain possibilities and looking at some other issues, but they clearly do not even read a lot of what they report on, now that everything is about the number of clicks to their website.

 

[txsvicki]

Biopsy is dangerous. And maybe Dr. Korson wasn't so concerned because he couldn't possibly envision the child was going to be removed from her parents over a dispute in diagnosis.

I wonder if an abdominal muscle sample could have been taken when the flush apparatus was installed?

 

[txsvicki]

http://www.kcci.com/news/woman-with-month-to-live-has-message-for-you/25644938

Also:

Frightening. I can't view videos on this laptop. Did anyone say just what is going to cause her death? Heart failure, liver, lungs...... No wonder the Pelletier's are frantic. They have one daughter with the disease, and probably have very high anxiety building over a number of years.

 

[gitana1]

Your opinion appears to be based on quite a bit of misinformation. The facts of this case are now well known and many differ wildly from those alleged by the parents. BCH could not ignore the fact that Justina had not been definitively diagnosed with Mito by Dr. Korson. He had not done a muscle biopsy and BCH couldn't ignore her metabolic work-up. To suggest the care at BCH was somehow compromised because of the doctors' ages really doesn't merit a response. Justina was hospitalized for 3 days at BCH and her medical needs continue to be managed by highly educated and trained specialists.

JMO

“It’s mito,” the mother said.

But Peters had already begun to question that assessment. Here was a girl who was on multiple medications and who had undergone multiple interventions at the hands of multiple specialists, but all that care “has not yielded a definitive unifying diagnosis,” he wrote in Justina’s medical chart.

He noted that two of the criteria often used in arriving at a mitochondrial disease diagnosis were not present in Justina’s case. “Metabolic workup was unremarkable,” he wrote, adding, “She has not had a muscle biopsy.”


http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

I'm not going off what the parents have stated. I'm going off what her doctors have stated as well as news articles citing information from other sources than the parents.

And the ages and experience levels of the doctors at BCH were relevant enough to merit mention of such in an article critical of what has happened here. More important to me is the fact that they were not familiar with the child or her parents and made a quick decision that medical abuse or neglect was occurring.

In most cases of suspected medical abuse, it takes time to determine what's occurring. They do months of observing. Then, they separate the child from the parents and instant imptovemrnt gives them their answer. This case has followed an atypical pattern when determining medical abuse.

 

[1&2&3]

Thank you lawstudent for a well stated post. I am in total agreement there are missing pieces to this story! Something went very wrong on Justina's admittance at BCH. The biggest question is how she ended up with the team of specialists that saw her. If these issues were explained truthfully, we might see how this nightmare started.

My opinions only.

 

[Linda7NJ]

http://www.kcci.com/news/woman-with-month-to-live-has-message-for-you/25644938

Also:

Thanks gitana, but that's not the article. I was speaking specifically about the other child with Mito that was given a month to live....the one jjenny was talking about.


Sent from my iPhone using Tapatalk

 

[gitana1]

Thank you lawstudent for a well stated post. I am in total agreement there are missing pieces to this story! Something went very wrong on Justina's admittance at BCH. The biggest question is how she ended up with the team of specialists that saw her. If these issues were explained truthfully, we might see how this nightmare started.

My opinions only.

My feeling is the doctors at BCH had a legitimate concern/suspicion exacerbated by agitated, dramatic, demanding and difficult parents. That, IMO, could've led to more of a snap decision than what would've occurred otherwise. Then I think they dug their heels in and became stubborn about their assessment to a degree that, as the kid's doctor stated, they defensively sought to prove their diagnosis.

That's not to say they aren't right. They could be. But I have questions and concerns.

 

[Linda7NJ]

Frightening. I can't view videos on this laptop. Did anyone say just what is going to cause her death? Heart failure, liver, lungs...... No wonder the Pelletier's are frantic. They have one daughter with the disease, and probably have very high anxiety building over a number of years.

What is she dying from?


Sent from my iPhone using Tapatalk

 

[txsvicki]

What is she dying from?


Sent from my iPhone using Tapatalk

Unless I'm mistaken, the article said she has mito. I couldn't watch the video, so wondered which body system is failing and what is going on with it. This girl has chosen to go off her meds.

EDIT: I reread. The article says debilitating diseases, plural, including mito. The article did not say which disease she will die from.

 

[MyBelle]

I have to be honest that I'm coming around a bit more to "your" side because something is not adding up reading more and more about this in terms of DCF's choices - part of this is confidentiality, so I don't know how much it can be helped, but huge pieces of this story are missing. You don't need to be a doctor to figure it out - I'm certainly not one - but there definitely are certain standards and procedures that happen and a lot of those details are nonexistent right now, so people need to understand they do not know anything close to what actually happened. Even if this has all just been a terrible injustice, we don't know the half of it.

As I see it covered more in other media sources, my suspicions are rising, although I still cannot figure out what is going on because I don't know why Children's Hospital would work this hard to come up with some evil plot and I do believe the parents have major issues that complicate things. I do think part of it is the parents just pissed everyone off so much that they are victims of retaliation, but I do believe there is still more to this story. The problem with believing this is all the fault of DCF or Children's is that you have to believe so many people were involved in this whole weird transfer to Boston and not seeing the rights specialist and a sudden diagnostic change and then a long term hospitalization plus custody loss...a lot of events and people are in play, and the common players are the parents.

However, I have major issues with the Boston Globe's reporting, and I rely on it a lot for research for work/school/crime researching. I have found glaring inaccuracies in almost every article I've hard to research lately - to the point where I do cannot rely on half of what is in that article. For example, it's unclear if they obtained extensive medical records or if the parents gave them an affidavit submitted to the court quoting from medical records, and since the affidavit was submitted by DCF the info would be selectively chosen in its favor. This is exactly the type of error I see in the Globe - completely wrong legal interpretations, medical interpretations, and terminology. It's pathetic but the Herald has actually surpassed the Globe in accuracy, in my opinion (although it doesn't try to get too in depth so that's fairly easy). I know that sounds like shooting the messenger, but I actually tend to assume the opposite of the Globe's reporting at this point - it's that bad. If they quote from a document or put a direct quote from a person, I believe it. What those documents are, what the implications are, and anything paraphrased is automatically rejected by me if I can't independently verify it. I can't believe the stuff I've seen from them lately.

What's sad is the Globe actually could fill in a lot of these details, even without all the records, just by calling up experts about certain possibilities and looking at some other issues, but they clearly do not even read a lot of what they report on, now that everything is about the number of clicks to their website.

What exactly has the Globe misreported? The necessary details of this case are all right there often as direct quotes or statements of fact lifted from medical records beginning with the fact that the Connecticut pediatrician filed a complaint against the parents in 2011 out of concern for the multiple "doctor shopping" the parents were engaged in.

Dr. Alice Newton headed the child protection teams for both Boston Children's and Mass General for more than a dozen years. Do you really think she's just retaliating against difficult parents? Or that she's too young to analyze and interpret medical records and form a professional opinion that a child has been subjected to medically unnecessary interventions and treatments?

JMO

 

[lawstudent]

What exactly has the Globe misreported? The necessary details of this case are all right there often as direct quotes or statements of fact lifted from medical records beginning with the fact that the Connecticut pediatrician filed a complaint against the parents in 2011 out of concern for the multiple "doctor shopping" the parents were engaged in.

Dr. Alice Newton headed the child protection teams for both Boston Children's and Mass General for more than a dozen years. Do you really think she's just retaliating against difficult parents? Or that she's too young to analyze and interpret medical records and form a professional opinion that a child has been subjected to medically unnecessary interventions and treatments?

JMO

With regard to other cases I've recently followed out of interest, the Globe has recently reported that the state's highest court both "legalized" upskirting and "passed a law" regarding upskirting - both of which are totally false and actually totally impossible. It also ran a huge story on Blue Cross' prescription drug plan which quoted only executives at Blue Cross (claiming great things about their results) without seeing a single confirmatory document, since that was all proprietary info, according to Blue Cross. So they basically published a press release as an investigative report. Then some government official mentioned raising taxes at a certain entity, and they published the governor announced he was raising taxes at that agency. Then they reported that Vermont wrote a law very similar to MA ban on a new prescription drug, which, unlike MA's law, had not been challenged in court. The law was absolutely in no way similar and merely required something like a patient evaluation (which already happens). They provided no link to the law and clearly had not read it - it was just "a similar law." It's not that they are reporting blatant lies, but their analysis is completely wrong and devastatingly misleading. I have to read some articles in this case for more examples. But the Globe clearly does not question the parents appropriately or ask the right questions of experts or analyze the judicial opinion correctly.

ETA: And in my personal opinion based on what we know, I believe that the parents are mostly in the wrong here. However, I also do believe that when people are difficult and piss everyone off, there is often some retaliation driving it, in addition to actual justifications. It's human nature. This may all be privacy related, but I guess the only thing that is a red flag to me is the diagnosis of "somatoform disorder" in all the court records. That is super vague and I would expect usually that bit more info would be given. I believe the parents are not telling anything near the truth, but I also find the information bizarrely vague. It would be one thing not to mention some of this at all, but the medical stuff that is released seems to be lacking some important information.

ETA again: Specifically, I would either expect the case to involve actual charges and no attempt to return her to the state if they believed this was like a muchausen's-by-proxy or something along those lines. Instead, it seems they believe the parents either will not acknowledge her issues or exacerbate the fears, but not in such an unfounded and abusive way to permanently remove her. So I would expect more references to mental health or emotional issues or a conversion disorder etc., instead of somatoform disorder, which is both vague and specific at the same time.

 

[i.b.nora]

With regard to other cases I've recently followed out of interest, the Globe has recently reported that the state's highest court both "legalized" upskirting and "passed a law" regarding upskirting - both of which are totally false. It also ran a huge story on Blue Cross' prescription drug plan which quoted only executives at Blue Cross (claiming great things about their results) without seeing a single confirmatory document, since that was all proprietary info, according to Blue Cross. So they basically published a press release as an investigative report. Then some government official mentioned raising taxes at a certain entity, and they published the governor announced he was raising taxes at that agency. Then they reported that Vermont wrote a law very similar to MA ban on a new prescription drug, which, unlike MA's law, had not been challenged in court. The law was absolutely in no way similar and merely required something like a patient evaluation (which already happens). They provided no link to the law and clearly had not read it - it was just "a similar law." It's not that they are reporting blatant lies, but their analysis is completely wrong and devastatingly misleading. I have to read some articles in this case for more examples.

I don't see how any of that has to do with this case unless perhaps the same writers were involved. Good grief!!! The first two Globe articles on this case reached no conclusions or final judgements, imo, one way or the other. And, if they are inaccurately reporting on other things that are of concern to you, I advise you contact them directly.

 

[i.b.nora]

Unless I'm mistaken, the article said she has mito. I couldn't watch the video, so wondered which body system is failing and what is going on with it. This girl has chosen to go off her meds.

EDIT: I reread. The article says debilitating diseases, plural, including mito. The article did not say which disease she will die from.

In another video from last year her mother says she has Mitochrondrial Disease, Ehlers-Danlos Syndrome, POTS, Fibromyalgia, Dysautonomia, and some other auto-immune diseases.

http://www.huffingtonpost.com/2013/05/13/iowa-teens-recreate-prom-_n_3267046.html

 

[lawstudent]

I don't see how any of that has to do with this case unless perhaps the same writers were involved. Good grief!!! The first two Globe articles on this case reached no conclusions or final judgements, imo, one way or the other. And, if they are inaccurately reporting on other things that are of concern to you, I advise you contact them directly.

If the Globe regularly publishes articles that completely misrepresent the law and don't conduct accurate fact checking, I'd say that is highly relevant in general with regard to credibility.

 

[MyBelle]

I don't see how any of that has to do with this case unless perhaps the same writers were involved. Good grief!!! The first two Globe articles on this case reached no conclusions or final judgements, imo, one way or the other. And, if they are inaccurately reporting on other things that are of concern to you, I advise you contact them directly.

Indeed. It sure is getting confusing but apparently there are some who subscribe to the belief that this case isn't about protecting Justina from unnecessary medical intervention but rather it's all a vast conspiracy between the Hospital, it's professional staff of specialists, DCF, the Judge and now, the news media in retaliation against the parents who are somehow "victims."

JMO