Justina Pelletier

[drobeski 3,061]

I sure hope i meet your standards one day ref snuffy, im gonna keep on trying.

[wiffleball 4,793]

you dumb f**** realize you're being catfished right?

[Sho Nuff 720]

I sure hope i meet your standards one day ref snuffy, im gonna keep on trying.

 

Well, you don't seem bright enough to realize when you are being made fun of...so, keep on goin chief.

[drobeski 3,061]

 

Well, you don't seem bright enough to realize when you are being made fun of...so, keep on goin chief.

its a pleasure to be made fun of by you snuffy

[Googballz 39]

I have not been keeping up with this thing.

 

Have the parents been charged with abuse yet?

[NewbieJr 541]

I have not been keeping up with this thing.

 

Have the parents been charged with abuse yet?

No, but the mental patient has finally been banned from the site.

[Googballz 39]

No charges?

 

So she is still being held against her will because the parents disagree with the BCH diagnosis.

[Sho Nuff 720]

Funny that someone thinks absent charges that there could not be medical child abuse.

[Googballz 39]

Funny that someone thinks absent charges that there could not be medical child abuse.

Who said that?

 

I certainly didn't, but common sense dictates that if the "state" takes the "extreme measure" (your hero Pen's characterization) of taking a child away from parents for over a year there must be some evidence of abuse.

 

Where is this evidence?

[Sho Nuff 720]

Ill play along...so you already switched from wanting charges...to needing evidence.

Seems they presented their evidence to the courts. Sorry if that does not satisfy you...but interesting you think you are entitled to said evidence.

Cue "where did I say that?"

And around and around we would go.

Have fun

[penultimatestraw 473]

Who said that?

 

I certainly didn't, but common sense dictates that if the "state" takes the "extreme measure" (your hero Pen's characterization) of taking a child away from parents for over a year there must be some evidence of abuse.

 

Where is this evidence?

This never gets old. Let's see what the courts, the only ones who are reviewing both sides, decide

[rollinghills60 0]

At least posters are actually talking about Justina again. The collective "courts" are not reviewing both sides - just one judge. There are also lots of others who would know if Justina had shown any improvement or if Justina had said or done anything that indicated her parents were abusive. Lots of people work at Wayside and on Bader 5 - not just doctors and nurses, but aides, administrative support people, and custodians, not to mention there are lots of current and former patients. That's probably close to 100 people. Not all of these are bound by law from releasing information about Justina, and even among those who are, it is highly unlikely that NONE of them would have ever let slip anything about her condition to their parents, their significant others, etc.

 

As far as I know, no one has accused them of poisoning or beating Justina or anything of that sort - and surely if that were the case they would have been charged. What specifically do you hypothesize the parents have done?

[crackattack 520]

So what are the true facts of the case? Not opinions, not peoples own bias interpretations of facts, but actual facts. Does the public even have many facts?

[Googballz 39]

This never gets old. Let's see what the courts, the only ones who are reviewing both sides, decide

I agree. They have had over a year to bring abuse charges........

[penultimatestraw 473]

At least posters are actually talking about Justina again. The collective "courts" are not reviewing both sides - just one judge. There are also lots of others who would know if Justina had shown any improvement or if Justina had said or done anything that indicated her parents were abusive. Lots of people work at Wayside and on Bader 5 - not just doctors and nurses, but aides, administrative support people, and custodians, not to mention there are lots of current and former patients. That's probably close to 100 people. Not all of these are bound by law from releasing information about Justina, and even among those who are, it is highly unlikely that NONE of them would have ever let slip anything about her condition to their parents, their significant others, etc.

 

As far as I know, no one has accused them of poisoning or beating Justina or anything of that sort - and surely if that were the case they would have been charged. What specifically do you hypothesize the parents have done?

If the diagnosis of MCA is correct, Justina's parents sought unnecessary medical care, exposing her to risks associated with non-essential tests/procedures/medications.

 

The "legal system" is reviewing both BCH physicians'/DCF's and the parents'/Tufts physicians' "sides." I'm not interested in the opinions of those who aren't privy to the evidence from which the MCA diagnosis was made.

 

But I'll concede that Justina getting worse away from her parents, if that is indeed the case, is not suggestive of the MCA diagnosis. But that isn't the only possibility.

[penultimatestraw 473]

So what are the true facts of the case? Not opinions, not peoples own bias interpretations of facts, but actual facts. Does the public even have many facts?

They have some facts, but are lacking a detailed account of what behavior by Justina's parents predicated the diagnosis of medical child abuse.

[drobeski 3,061]

Keeping a child locked up in a phsyc ward for over a year with once a week supervised visits with her parents.

 

Sounds like a pretty good description of medical child abuse if you ask me.

But thats just me, from an actual parents perspective.

[rollinghills60 0]

If the diagnosis of MCA is correct, Justina's parents sought unnecessary medical care, exposing her to risks associated with non-essential tests/procedures/medications.

 

The "legal system" is reviewing both BCH physicians'/DCF's and the parents'/Tufts physicians' "sides." I'm not interested in the opinions of those who aren't privy to the evidence from which the MCA diagnosis was made.

 

But I'll concede that Justina getting worse away from her parents, if that is indeed the case, is not suggestive of the MCA diagnosis. But that isn't the only possibility.

I assume you mean medical care that they knew to be unnecessary, since the vast majority of parents have brought their children to the doctor for "unnecessary medical care," i.e. to have something checked out, such as a possible ear infection or strange rash, that turned out to be nothing important. Nnot to have such things checked out would have been neglectful. It is ironic that a number of people, including apparently Children's, have criticized the Pelletiers and Dr. Korson for not having done a muscle biopsy - so on the one hand they supposedly sought unnecessary medical care, yet they are being criticized for supposedly not seeking another procedure.

 

So which of the tests/procedures that she had were unnecessary? The removal of the congenital band? The cecostomy? According to the Boston Globe article, it was the cecostomy that Dr. Peters did not think was necessary - not that he is a gastroenterologist. Yet a test for intestinal function was performed before the surgeons decided on this operation; the decision was not based merely or the patient's or parents' reports.

 

1) In order to substantiate MCA, the parents would have had to fool Dr. Korson, a renowned metabolic specialist, Dr. Flores, a gastroenterologist, and the surgeons at Tufts, and the surgeons would have had to misinterpret the results of the test of intestinal function. In order for that to be the case, all those doctors would have had to have been incredibly incompetent and naive. It makes no sense to assume that level of incompetence in a whole group of experienced doctors at a well-known hospital, and yet assume that Dr. Peters could not possibly have jumped to a conclusion without plenty of evidence.

 

2) If there were any concrete evidence that the Pelletiers had exaggerated or falsified any symptoms, someone at Children's Hospital would have leaked that information. The reputation of Children's has been severely damaged by this controversy - that the administration actually posted on their Facebook page about a specific patient is indicative of that. There is no way they can be unconcerned about the negative publicity.

 

3) The scenario that Children's (though not necessarily Dr. Peters) realizes that Justina does have a metabolic disorder, but hypothesizes that her symptoms are made worse by psychological factors could be an explanation. Even then, it is not as if she were not receiving psychological counseling - her psychologist testified in court that he had diagnosed her with mild depression secondary to her illness. Children's is big on behavior modification and medication - not so big on empathetic listening.

[penultimatestraw 473]

I assume you mean medical care that they knew to be unnecessary, since the vast majority of parents have brought their children to the doctor for "unnecessary medical care," i.e. to have something checked out, such as a possible ear infection or strange rash, that turned out to be nothing important. Nnot to have such things checked out would have been neglectful. It is ironic that a number of people, including apparently Children's, have criticized the Pelletiers and Dr. Korson for not having done a muscle biopsy - so on the one hand they supposedly sought unnecessary medical care, yet they are being criticized for supposedly not seeking another procedure.

 

So which of the tests/procedures that she had were unnecessary? The removal of the congenital band? The cecostomy? According to the Boston Globe article, it was the cecostomy that Dr. Peters did not think was necessary - not that he is a gastroenterologist. Yet a test for intestinal function was performed before the surgeons decided on this operation; the decision was not based merely or the patient's or parents' reports.

 

1) In order to substantiate MCA, the parents would have had to fool Dr. Korson, a renowned metabolic specialist, Dr. Flores, a gastroenterologist, and the surgeons at Tufts, and the surgeons would have had to misinterpret the results of the test of intestinal function. In order for that to be the case, all those doctors would have had to have been incredibly incompetent and naive. It makes no sense to assume that level of incompetence in a whole group of experienced doctors at a well-known hospital, and yet assume that Dr. Peters could not possibly have jumped to a conclusion without plenty of evidence.

 

2) If there were any concrete evidence that the Pelletiers had exaggerated or falsified any symptoms, someone at Children's Hospital would have leaked that information. The reputation of Children's has been severely damaged by this controversy - that the administration actually posted on their Facebook page about a specific patient is indicative of that. There is no way they can be unconcerned about the negative publicity.

 

3) The scenario that Children's (though not necessarily Dr. Peters) realizes that Justina does have a metabolic disorder, but hypothesizes that her symptoms are made worse by psychological factors could be an explanation. Even then, it is not as if she were not receiving psychological counseling - her psychologist testified in court that he had diagnosed her with mild depression secondary to her illness. Children's is big on behavior modification and medication - not so big on empathetic listening.

I criticized Korson for avoiding a procedure which could confirm his diagnosis, rather than treat Justina and expose her to other drugs/procedures with inherent risks based on an assumed diagnosis. Granted, muscle biopsy isn't perfect, but it is a standard part of the work up of mitochondrial disease. Not all diagnoses can be made with certainty, of course, and some have no gold standard diagnostic test(s), but Justina's physical diagnosis would be subject to less scrutiny had he done the full work up in the first place. The unlikely complication of pain at the biopsy site isn't a good enough excuse to avoid it IMO. Ultimately, the lack of a confirmed physical cause for Justina's symptoms, in addition to her parents' behavior, is what suggested something else might be going on to the BCH docs. There would be no "fooling" any doctors if the work up was complete.

 

And there is a big difference in taking your child to the doctor's office for evaluation and committing her to lifelong medications. Or doctor shopping until finding a medical provider to perform a rarely utilized and seldom necessary invasive procedure like cecostomy. I know, the Tufts' surgeons said it was necessary, after the tube had already been placed. What test of intestinal function was performed? Why is it that only BCH docs can be subject to concerns of arrogant self-interest?

[penultimatestraw 473]

Keeping a child locked up in a phsyc ward for over a year with once a week supervised visits with her parents.

 

Sounds like a pretty good description of medical child abuse if you ask me.

But thats just me, from an actual parents perspective.

She isn't "locked up" now - she is in a residential facility at the Wayside Youth and Family Support Network in Framingham, Mass. But I agree that keeping her on a psych ward for such an extended period was probably unnecessary. But we don't know why they chose to hospitalize her for so long - the parents were protesting attempts to place her in foster care homes according to some reports.

[rollinghills60 0]

She isn't "locked up" now - she is in a residential facility at the Wayside Youth and Family Support Network in Framingham, Mass. But I agree that keeping her on a psych ward for such an extended period was probably unnecessary. But we don't know why they chose to hospitalize her for so long - the parents were protesting attempts to place her in foster care homes according to some reports.

In what way is Justina not still locked up? She can not leave Wayside - if she were to escape, they would chase her down. Almost every other 15 year old in Massachusetts is able to spend this vacation week enjoying the beautiful spring weather. Justina can not even have a friend push her down the street, much less go to Shoppers' World or the Natick Mall, see a movie, visit the Library or all the many other activities that teenagers take for granted.

 

The Boston Globe article did not state the name of the testing done before Justina's surgery, but it reported that Dr. Korson said, "Justina had received the rare cecostomy surgery only after a sensitive, two-hour-long test measuring how effectively her colon pushed out waste had provided objective evidence that her colon was seriously impaired."

 

Why would I have more confidence in a diagnosis made by a metabolic specialist, a gastroenterologist, and a couple of surgeons than I would in a psychiatric diagnosis made by one doctor who was neither a metabolic specialist nor a psychiatrist? I think that is obvious.

[jerryskids 6,974]

I criticized Korson for avoiding a procedure which could confirm his diagnosis, rather than treat Justina and expose her to other drugs/procedures with inherent risks based on an assumed diagnosis. Granted, muscle biopsy isn't perfect, but it is a standard part of the work up of mitochondrial disease. Not all diagnoses can be made with certainty, of course, and some have no gold standard diagnostic test(s), but Justina's physical diagnosis would be subject to less scrutiny had he done the full work up in the first place. The unlikely complication of pain at the biopsy site isn't a good enough excuse to avoid it IMO. Ultimately, the lack of a confirmed physical cause for Justina's symptoms, in addition to her parents' behavior, is what suggested something else might be going on to the BCH docs. There would be no "fooling" any doctors if the work up was complete.

 

And there is a big difference in taking your child to the doctor's office for evaluation and committing her to lifelong medications. Or doctor shopping until finding a medical provider to perform a rarely utilized and seldom necessary invasive procedure like cecostomy. I know, the Tufts' surgeons said it was necessary, after the tube had already been placed. What test of intestinal function was performed? Why is it that only BCH docs can be subject to concerns of arrogant self-interest?

I apologize if this has been addressed, but did Korson/Tufts choose not to do the muscle biopsy, or did the parents veto it. Because if the former, I don't see how you can hold it against the parents for following the advice of medical experts. If the latter, then yeah, that is suspicious.

[rollinghills60 0]

I apologize if this has been addressed, but did Korson/Tufts choose not to do the muscle biopsy, or did the parents veto it. Because if the former, I don't see how you can hold it against the parents for following the advice of medical experts. If the latter, then yeah, that is suspicious.

According to the Boston Globe article, Korson chose not to do a muscle biopsy:

"Since the first mitochondrial disease cases were identified in the 1980s, the traditional approach to making a diagnosis involved a combination of biochemical tests, muscle biopsies, and genetic tests. But over the years, Korson and a number of other specialists in the field have found all three of these approaches to be imperfect, making mito very difficult to diagnose conclusively.

Korson chose instead to begin by tediously classifying each of the patient’s symptoms, to discern whether the cause for each was related or unrelated to mito. Dizziness, for instance, could be caused by an inner-ear problem or by poorly regulated blood pressure related to mito.

Korson recognized that this approach made him a “lumper,” meaning he was more willing to lump patterns of symptoms together to get to a diagnosis, even if the patient did not have the classical markers associated with the illness. Conversely, he felt others, including some at Children’s, were “splitters,” meaning they avoided making a diagnosis if the patient did not have the classic markers."

[jerryskids 6,974]

According to the Boston Globe article, Korson chose not to do a muscle biopsy:

"Since the first mitochondrial disease cases were identified in the 1980s, the traditional approach to making a diagnosis involved a combination of biochemical tests, muscle biopsies, and genetic tests. But over the years, Korson and a number of other specialists in the field have found all three of these approaches to be imperfect, making mito very difficult to diagnose conclusively.

Korson chose instead to begin by tediously classifying each of the patient’s symptoms, to discern whether the cause for each was related or unrelated to mito. Dizziness, for instance, could be caused by an inner-ear problem or by poorly regulated blood pressure related to mito.

Korson recognized that this approach made him a “lumper,” meaning he was more willing to lump patterns of symptoms together to get to a diagnosis, even if the patient did not have the classical markers associated with the illness. Conversely, he felt others, including some at Children’s, were “splitters,” meaning they avoided making a diagnosis if the patient did not have the classic markers."

Thanks. Penny, rebuttal? I know you've consistently objected to the absence of the test, but do you agree that it was the doctors and not the parents who made that choice? And if so, does that influence your support of the state removing Justina from the parents?

[IGotWorms 4,060]

Thanks. Penny, rebuttal? I know you've consistently objected to the absence of the test, but do you agree that it was the doctors and not the parents who made that choice? And if so, does that influence your support of the state removing Justina from the parents?

[jerryskids 6,974]

I said I apologize if this has been addressed. Why the ?

 

[penultimatestraw 473]

In what way is Justina not still locked up? She can not leave Wayside - if she were to escape, they would chase her down. Almost every other 15 year old in Massachusetts is able to spend this vacation week enjoying the beautiful spring weather. Justina can not even have a friend push her down the street, much less go to Shoppers' World or the Natick Mall, see a movie, visit the Library or all the many other activities that teenagers take for granted.

 

The Boston Globe article did not state the name of the testing done before Justina's surgery, but it reported that Dr. Korson said, "Justina had received the rare cecostomy surgery only after a sensitive, two-hour-long test measuring how effectively her colon pushed out waste had provided objective evidence that her colon was seriously impaired."

 

Why would I have more confidence in a diagnosis made by a metabolic specialist, a gastroenterologist, and a couple of surgeons than I would in a psychiatric diagnosis made by one doctor who was neither a metabolic specialist nor a psychiatrist? I think that is obvious.

How do you know what activities Justina can/cannot take part in at Wayside? Drobeski said she was "locked up in a psych ward", which isn't exactly accurate.

 

A diagnosis based on a collection of nondescript symptoms should be questioned, especially when more definitive testing is available. Plus, mitochondrial disease is known to be associated with MCA. From one of my original posts:

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.

And I doubt just two BCH physicians have weighed in on the evidence of MCA. The family had run-ins with several Tufts physicians well before this ordeal (Boston Globe):

The Pelletiers had butted heads with other doctors in Connecticut — Justina’s pediatrician there would accuse them of doctor-shopping and “firing” multiple providers. And despite their fondness for Justina’s main doctors at Tufts, they had previously clashed with other members of the Tufts staff, who had filed an allegation of neglect with the Connecticut child-protection agency in late 2011.

But we don't have all the info, and those who do seem to think there is enough evidence to keep Justina away from her parents over a year later...

[penultimatestraw 473]

Thanks. Penny, rebuttal? I know you've consistently objected to the absence of the test, but do you agree that it was the doctors and not the parents who made that choice? And if so, does that influence your support of the state removing Justina from the parents?

I don't think we know what discussions were had involving the decision not to pursue biopsy. If Korson's SOP is not to biopsy when the diagnosis isn't confirmed by blood testing, he may want to rethink it in light of the association of mitochondrial disease and MCA.

 

My stance has been consistent: there is a lot of info we just don't know; because of HIPAA, what we are told is heavily skewed by what the parents have said. And the threshold for removing parental custody is generally very, very high. A positive biopsy would make the case for Justina's symptoms being due to a physical illness far more believable, however.

[jerryskids 6,974]

I don't think we know what discussions were had involving the decision not to pursue biopsy. If Korson's SOP is not to biopsy when the diagnosis isn't confirmed by blood testing, he may want to rethink it in light of the association of mitochondrial disease and MCA.

 

My stance has been consistent: there is a lot of info we just don't know; because of HIPAA, what we are told is heavily skewed by what the parents have said. And the threshold for removing parental custody is generally very, very high. A positive biopsy would make the case for Justina's symptoms being due to a physical illness far more believable, however.

But she is 15, so the parents controlled her HIPAA rights prior to them being (presumably) removed. Have they said that Korson didn't order the test? I don't particularly care what his SOP is, I'm merely trying to determine if the parents stopped Korson from running the muscle biopsy.

[penultimatestraw 473]

But she is 15, so the parents controlled her HIPAA rights prior to them being (presumably) removed. Have they said that Korson didn't order the test? I don't particularly care what his SOP is, I'm merely trying to determine if the parents stopped Korson from running the muscle biopsy.

I don't know what the parents have said regarding muscle biopsy. Rollinghills seems to have a bunch of info - but not a lot of links to her source material. Maybe check the Boston Globe?

[penultimatestraw 473]

This is a pretty decent summary, albeit from a blog http://www.harpocratesspeaks.com/2014/03/the-case-of-justina-pelletier-calls-for.html

The Case of Justina Pelletier Calls for Nuance and Moderation

I've given a fair bit of thought as to whether or not to write this post. I may end up inadvertently offending people who have very firm opinions on the matter. The subject is rather controversial, evoking very strong emotions on both sides of the issue, which has gained national attention. The main problem is that what is known stems predominantly from media reports, with verified facts being unavailable. This is the case of Justina Pelletier, a 15-year-old girl who has been the center of a custody battle for over a year between her parents and the state of Massachusetts. The majority of coverage has taken the side of the parents. Most of the people speaking out do so on behalf of the parents, often quite vehemently decrying the Department of Children and Families (DCF) and Boston Children's Hospital (BCH), which started the ordeal. Articles siding with DCF are almost non-existent, but like their counterparts, take a very firm position based on media reports. Rarer still are measured, nuanced analyses of the story.

The dearth of more neutral approaches, and the vehemence with which people have spoken out about this, prompted me to write. I am not going to make any firm conclusions. I will not take a side. There isn't enough verified, primary source information available for me to do so. Instead, I will summarize the details that have been reported and talk a little about the possible scenarios: that the parents are right and that DCF and BCH are right. It is a complex topic about which I'd like to start a conversation, so feel free to post your thoughts in the comments below, but keep it civil.

The majority of information I found about this case comes from a two-part story in the Boston Globe (click here for part 1 and here for part 2) and an ABC News story (here). These articles offered the greatest detail, but they rely largely on anonymous sources when it comes to the details of the dispute. I recommend reading the links at the end of this post for more information and to see examples of some of the reactions I mention. The parties involved in the legal struggles are under a gag order and are not allowed to discuss the case with the media, though Justina's parents have violated that order, appearing, for example, on Fox News. In addition to the gag order, the medical teams involved in Justina's care are also barred from discussing individual patients by HIPAA regulations, which guarantee patient privacy.

The Details, As Reported

Justina Pelletier is 15 years old. For several years, she had been sick off and on. Starting in 2010, she began suffering severe stomach cramps and blockage. After exploratory surgery, doctors at Connecticut Children's Hospital discovered cartilage wrapped around her colon. They removed the cartilage and Justina's appendix, but her condition did not improve. In 2011, her doctors referred her to a gastroenterologist at Tufts, Dr. Alejandro Flores. In 2012, surgeons performed a cecostomy, a relatively new procedure. Dr. Flores referred her to Dr. Mark Korson, a respected specialist in mito disorders. Dr. Korson reportedly made the diagnosis of a mitochondrial disorder by classifying each of her symptoms. He apparently did not order a muscle biopsy, which is a standard means of diagnosing mito disorders, and it is unclear whether or not he ordered blood or CSF tests. Justina's older sister was also diagnosed with a mito disorder after having a muscle biopsy.

In early 2013, Justina suffered a bout of influenza and gastrointestinal symptoms. Dr. Korson recommended her family take her to see Dr. Flores, who had transferred to BCH. Having stopped eating, her parents brought her by ambulance to BCH on February 10. She was seen in the emergency room by neurologist Dr. Jurriaan Peters. After getting Justina's history, he questioned the mito diagnosis, noting that she had not had a muscle biopsy and that her metabolic workup was not unusual. He called in a psychologist, Dr. Simona Bujoreanu. Dr. Bujoreanu reportedly noted that Justina's symptoms got worse when her mother was around. This led to the suspicion of a somatoform disorder, in which distress manifests as physical symptoms not adequately explained by a medical diagnosis.

Justina's parents rejected the psychiatric diagnosis and treatment plan, insisting instead on continuing her medical treatment, which included "Tegretol for neurological problems, Metoprolol for a rapid heart rate, and Midodrine for boosting blood pressure" (Boston Globe). According to the Globe article, it is not the first time they opted against psychiatric treatment for Justina, having rejected mental health services in 2011 as part of Justina's treatment.

This is where DCF became involved, as the BCH doctors suspected medical child abuse, a term that has recently been proposed instead of Munchausen Syndrome by Proxy. Justina was moved to BCH's psychiatric wing, her parents' visitation rights eventually being limited. In the summer of 2014, DCF discussed moving Justina to Webster House in New Britain, CT, but Webster House backed out when Justina's father, Lou, threatened to sue them if they took Justina. Although they eventually visited and softened their stance, Webster House declined to take Justina, stating, "We have determined, unfortunately, that we are unable to take on the risk of becoming involved in a protracted legal battle that could be very costly." In January of this year, she was moved to a foster care program at Wayside Youth and Family Support. In February, DCF discussed transferring her to Shared Living Collaborative, but they allegedly declined to accept Justina because of the nature of the case and media attention it has drawn. This past Friday, February 28, it was reported that DCF is endorsing a plan to return Justina's medical care to Tufts.

Throughout all of this, Justina's parents have stated that her condition has deteriorated. In contrast, BCH says that she has shown improvement, but, due to HIPAA, no details are available.

Articles about this commonly use terms like "kidnapped", "hostage", "horror" and "nightmare". Many frame the issue in terms of parental rights. Some go for the full-on conspiracy-mongering. The majority tend to support the parents, viewing BCH, DCF and the courts as overstepping their bounds and doing far more harm than good for Justina. They tend to assume that Justina's condition as described by her parents is unequivocally correct. Conservative and Christian groups have rallied around the parents, protesting outside the courthouse and holding a vigil outside Wayside Youth and Family Support. State legislators have even started working on a resolution calling for the immediate return of Justina to her parents. Few, if any, articles side with DCF, taking the BCH diagnosis without question. Some mainstream media, like the Boston Globe, have taken a more middle-of-the-road stance, as has at least one state legislator.

The core dispute involves her diagnosis. The Tufts doctors believe that she has a mitochondrial disorder and have prescribed a number of medications and vitamins. The Boston Children's Hospital doctors believe that her symptoms are psychologically based and that the treatment regime for the mito disorder is overtreatment and puts Justina at increased risk of harm. Other than some of the drugs that were prescribed by Dr. Korson, we do not know what all her treatment at BCH involves or whether her family has sought out other treatment options (e.g., alternative medicine). The basis of the "medical child abuse" allegation, therefore, is that Justina is being overmedicated.

So, are her parents and the doctors at Tufts right? Or are the BCH doctors correct? Those not directly involved in the case cannot make that conclusion without knowing all of the information available to her doctors at both locations. We don't have access to the information leading up to the diagnoses, nor do we know the details around whether or not the treatments have been objectively beneficial. What makes this case somewhat unusual is that both Tufts and BCH are large, respected institutions. It's not a case of legitimate doctors against an obvious quack. Rather, we have two competing, relatively new and controversial diagnoses. What is at stake?

If the Parents Are Correct

If Justina's parents are correct and Justina does have a mitochondrial disorder, then erroneously taking her away from her parents can cause completely unnecessary stress and emotional trauma for both Justina and her family. In addition to the psychological burden of separation and dealing with the court system, there are the burdens of time (going to court, driving long distances to visit, etc.) and money (lawyer fees, medical costs for the altered treatment, if not covered by Medicaid, travel expenses and so on) that would otherwise never have occurred. Medically, discontinuation of her treatment plan could, potentially, result in a more rapid progression of her mitochondrial disorder, assuming that the drugs prescribed by her doctors at Tufts have actually been effective in stabilizing her condition.

If she is placed in a foster home, it is possible that the new family will be very loving and attentive to her needs, but there is also the risk that her new caregivers may have been inadequately vetted and may be abusive. That risk is especially concerning in the case of a child with reportedly complex medical needs.

If the parents are correct, and Justina's separation from her family continues, then emotional harm is being done to both her and her family with no benefit.

If Boston Children's Hospital Is Correct

On the other hand, what if the parents are wrong? What if Justina does not have a mitochondrial disorder, but instead has, as BCH contends, a somatoform disorder? What would be the impact of immediately returning her to her parents?

By all accounts, her parents appear to be absolutely convinced that her mitochondrial disorder diagnosis is correct and will correspondingly pursue treatment for that. They had reportedly already been averse to mental health services before they even approached BCH. If Justina were returned to them, it is almost certain that she would resume the cocktail of drugs and vitamins that had been prescribed to her. This could put Justina at increased risk of serious harm from unnecessary drugs for no added benefit: Tegretol (carbamazepine) may increase the risk of developing a serious or life-threatening blood disease, as well as carry other side effects that negatively affect her quality of life; Metoprolol can increase the risk of adverse cardiovascular complications and potentially worsen allergic reactions, if she has any allergies; and Midodrine can dangerously elevate blood pressure, as well as cause side effects that decrease quality of life.

In addition to the risks associated with over-medication, if Justina's symptoms do stem from a psychological cause, she likely would not receive the mental health care that she needs to treat her underlying anxiety. This would mean she would continue to experience physical symptoms, such as pain, nausea, weakness or dizziness potentially leading to more unnecessary and ineffective medical treatment with no resolution of her symptoms.

If BCH is correct, and she is immediately returned to her parents, the she is at risk of physical harm that could be serious and life-threatening.

Hopefully, I've made clear just how complex this case is and how difficult it is for bystanders and laypeople to make any sort of objective, informed conclusion about it. Emotions run very high and often lead people to make hasty judgments not supported by facts. The most common approach I've seen is support for the parents' rights to decide their child's medical care. More extreme versions of this almost seem to view the parents' rights above all else, despite the fact that children are not property; their rights to make medical decisions for their children are not absolute. Certainly, no child should be taken from their home and away from their parents without some damn good reason to do so. Alleging abuse should not be done lightly. Yet few of the sources I've read consider the other side of the coin. There is potential for very serious harm to Justina, if the allegations are correct. Child abuse and custody cases are complicated to begin with, but they are made even more so when medical care enters into the equation. The issue calls for moderate, nuanced discussion, not knee-jerk condemnations of either the parents or BCH/DCF based on insufficient data.

I lean towards believing BCH for reasons I've stated numerous times, but await the official verdict.

[rollinghills60 0]

I did not bother to include a link to the Boston Globe series because I figured it was easy enough to google it.

 

Wayside in Framingham is not a group foster home. It is a "step-down" psychiatric facility that provides day and residential treatment. It includes a school component, but not all patients attend school: http://www.waysideyouth.org/wayside-academy/programs-and-services/ . I find this very concerning, though I doubt that they would decide it was necessary to restrain Justina, due to her condition: "Physical restraints are included in the behavior management protocol." In 1998, a teen at a Wayside facility was killed: http://business.highbeam.com/3972/article-1G1-56354108/death-marlboro-youth-home-examined

 

I know quite a lot about the programs at Wayside, since I have know three teens who were there. The students do not go anywhere unsupervised, and I doubt that they would take Justina on any field trips. It would be too risky, since there are too many people who think violence is the answer, and do not realize that an attempt to grab her could result in injuries to innocent bystanders and would make things worse for Justina and her parents.

 

The other "doctor," Simona Bujoreanu, who was involved in the diagnosis is not a medical doctor. She is a newly minted PhD. Here is a link to some of the articles she has written, including one in which she claims that "Up to 50% of patients in pediatric care will complain of medically unexplained symptoms with significant functional and emotional impairment." http://www.pubfacts.com/author/Simona+Bujoreanu Contrary to what she seems to believe, medically unexplained (yet) does not mean that the symptoms are not medically based.

 

I would very much like to see a citation that provides evidence of this statement: "And the threshold for removing parental custody is generally very, very high."

[penultimatestraw 473]

I did not bother to include a link to the Boston Globe series because I figured it was easy enough to google it.

 

Wayside in Framingham is not a group foster home. It is a "step-down" psychiatric facility that provides day and residential treatment. It includes a school component, but not all patients attend school: http://www.waysideyouth.org/wayside-academy/programs-and-services/ . I find this very concerning, though I doubt that they would decide it was necessary to restrain Justina, due to her condition: "Physical restraints are included in the behavior management protocol." In 1998, a teen at a Wayside facility was killed: http://business.highbeam.com/3972/article-1G1-56354108/death-marlboro-youth-home-examined

 

I know quite a lot about the programs at Wayside, since I have know three teens who were there. The students do not go anywhere unsupervised, and I doubt that they would take Justina on any field trips. It would be too risky, since there are too many people who think violence is the answer, and do not realize that an attempt to grab her could result in injuries to innocent bystanders and would make things worse for Justina and her parents.

 

The other "doctor," Simona Bujoreanu, who was involved in the diagnosis is not a medical doctor. She is a newly minted PhD. Here is a link to some of the articles she has written, including one in which she claims that "Up to 50% of patients in pediatric care will complain of medically unexplained symptoms with significant functional and emotional impairment." http://www.pubfacts.com/author/Simona+Bujoreanu Contrary to what she seems to believe, medically unexplained (yet) does not mean that the symptoms are not medically based.

 

I would very much like to see a citation that provides evidence of this statement: "And the threshold for removing parental custody is generally very, very high."

Stil not the same as being "locked up on a psych ward" IMO.

 

So your contention is the neurologist is the only MD who was involved in Justina's care? Again, we don't know for sure, but I'd be surprised if he alone reviewed the case medically to raise the suspicion of MCA. Remember, we aren't privy to all the facts concering her care at BCH?

 

The last statement is my opinion - like many you have made, it is subjective based on personal experience.

[rollinghills60 0]

My contention is that Dr. Peters is the only MD who was involved in the diagnosis - not the only one who was involved in her care. Assuming that a doctor inserted the feeding tube, that was undoubtedly not Dr. Peters, for instance. As a teaching hospital, I am sure a bunch of interns and residents paraded through her room, It has been my experience that patients don't get a whole lot of actual care from the doctors at most hospitals - typically they drop by for 30 seconds during rounds and then charge you $75 or $100 or more.

 

Tell me how being locked up at Wayside is different from being locked up in a psychiatric ward (unless you are a day patient at Wayside, which I agree is very different). What additional freedoms do you have? Both places typically allow patients off the ward for "field trips," starting with short ones, if the patients obey all their rules. Neither allows a reasonable amount of privacy. Both care far more about how you act than how you are actually feeling. Both force you to take drugs you may or may not want, and check to see if you have actually swallowed them.

 

In some ways, being at Children's is preferable to Wayside for teens who have grown up in a relatively sheltered middle - upper class environment, because the other patients are mostly from a similar background, whereas Wayside has many kids who have grown up "in the system," and/or witnessing gang violence. Actually the environment at Children's might be better for any teen - being surrounded by, say, anorexic girls is not nearly as scary as having to deal with full-grown male teenagers (or female ones for that matter) who have grown up surrounded by violence.

[penultimatestraw 473]

My contention is that Dr. Peters is the only MD who was involved in the diagnosis - not the only one who was involved in her care. Assuming that a doctor inserted the feeding tube, that was undoubtedly not Dr. Peters, for instance. As a teaching hospital, I am sure a bunch of interns and residents paraded through her room, It has been my experience that patients don't get a whole lot of actual care from the doctors at most hospitals - typically they drop by for 30 seconds during rounds and then charge you $75 or $100 or more.

 

Tell me how being locked up at Wayside is different from being locked up in a psychiatric ward (unless you are a day patient at Wayside, which I agree is very different). What additional freedoms do you have? Both places typically allow patients off the ward for "field trips," starting with short ones, if the patients obey all their rules. Neither allows a reasonable amount of privacy. Both care far more about how you act than how you are actually feeling. Both force you to take drugs you may or may not want, and check to see if you have actually swallowed them.

 

In some ways, being at Children's is preferable to Wayside for teens who have grown up in a relatively sheltered middle - upper class environment, because the other patients are mostly from a similar background, whereas Wayside has many kids who have grown up "in the system," and/or witnessing gang violence. Actually the environment at Children's might be better for any teen - being surrounded by, say, anorexic girls is not nearly as scary as having to deal with full-grown male teenagers (or female ones for that matter) who have grown up surrounded by violence.

I disagree with the bolded. Even though he may have initially voiced concerns of MCA, the case has surely been reviewed by other physicians and mental health professionals. Your impression of the residents "parading through her room" hints at your bias against teaching physicians. Absent the "voluminous" medical evidence reviewed by the courts we can only guess, however.

 

I don't know much about Wayside, but it is considered a step down from an inpatient psych unit. This likely means less intensive monitoring by health care providers and more interaction with other residents. A private foster home would likely be better, but didn't her parents reject placement?

[rollinghills60 0]

I disagree with the bolded. Even though he may have initially voiced concerns of MCA, the case has surely been reviewed by other physicians and mental health professionals. Your impression of the residents "parading through her room" hints at your bias against teaching physicians. Absent the "voluminous" medical evidence reviewed by the courts we can only guess, however.

 

I don't know much about Wayside, but it is considered a step down from an inpatient psych unit. This likely means less intensive monitoring by health care providers and more interaction with other residents. A private foster home would likely be better, but didn't her parents reject placement?

No, a private foster home has not been offered as an option. The potential placement in Connecticut was a group facility, as was the potential placement north of Boston. I remember reading somewhere that DCF has been unable to find any foster families willing to take Justina - which is not surprising since it is difficult to find foster placements for teenagers in general, and especially ones with medical issues.

 

You must never have been hospitalized in a teaching hospital, nor had a close relative hospitalized in one, if you think having a group of interns and residents (who look to be about 12 years old to us old folks) show up in your room every morning is not irritating. I have certainly never met anyone who looked forward to it.

 

There is certainly less monitoring medically speaking, but the amount of time spent in group and individual therapy sessions and such is probably about the same at Wayside. There is little difference in the amount of interaction with other residents. Bader 5 serves meals communally, the morning "educational" component is in a group, and of course the group therapy sessions involve interaction among the residents as well, and the majority of the rooms are doubles. It's not as if they are locked in their rooms - in fact, their "privileges" are contingent upon participation in group activities.Wayside is certainly a step-down for those kids who go home at night, because they are there only about the same amount of time they would be in school. For kids in the residential program, however, there is not much difference - fewer psychiatrists and more LCSW's/counselors is about it.

[drobeski 3,061]

2 more dead babies under mass Dcf watchfful eye

[Phurfur 70]

The teen at the center of a custody battle triggered by differing diagnoses by two Massachusetts hospitals was transferred Monday from the Bay State to a facility in her home state of Connecticut, her family told FoxNews.com.

 

The transfer of 15-year-old Justina Pelletier to a facility in Thompson, Conn., comes a day after the family claims they were denied a visit with their daughter in her Framingham, Mass., facility on Mother's Day.

 

"She needs medical and physical therapy, which she hasn't been getting. This is just a lateral move," her father, Lou Pelletier, told FoxNews.com as he was traveling Monday from the family's West Hartford home to see his daughter.

 

The Pelletiers said the new facility is "only 15 minutes closer" than where Justina was being held in Massachusetts. The girl is supposed to arrive at the JRI Susan Wayne Center for Excellence in Thompson by 2:30 p.m., her father said.

 

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

http://www.foxnews.com/us/2014/05/12/justina-pelletier-transferred-to-connecticut-facility-family-says/?intcmp=latestnews

[Phurfur 70]

Justina Pelletier, the Connecticut teen taken from her family more than a year ago by Massachusetts officials after her parents took her to a hospital for help, made a tearful plea to the Bay State family court judge who holds her fate in his hands.

 

In the 45-second, videotaped plea, first posted on a Facebook page set up by supporters of the 15-year-old, Justina is seen sitting in a chair and pleading plaintively with Massachusetts juvenile court Judge Joseph Johnston.

 

"All I really want is to be with my family and friends," the girl says, her voice faltering at times. "You can do it. You're the one that's judging this. Please let me go home."

 

Justina also directs her plea to Massachusetts Gov. Deval Patrick, whose state Department of Children and Families made the initial decision to commit the girl to state care on Valentine’s Day 2013 after doctors at Tufts Medical Center, which had been treating her for a rare condition, and doctors as Boston Children’s Hospital clashed over the cause of her medical problems, which included difficulty eating and walking.

http://www.foxnews.com/politics/2014/06/10/justina-pelletier-makes-tearful-plea-to-judge-asking-to-go-home/

[Googballz 39]

Obvious victim of child abuse by her parents.