rollinghills60

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.

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 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."

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."

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.

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.

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?

And your mind is not already made up? I actually think Dr. Peters is arrogant because he chose to ignore another doctor's diagnosis without discussing it with him, and in spite of the fact that his area of expertise is epilepsy, not mito or psychiatry. The apparent smirk on his face is just further evidence. Of course maybe he is not smiling because he has bad teeth. I do know more about Children's Hospital than a lot of the posters, because several of my relatives have been treated there. I have lived in Massachusetts almost all my life; I know people who have worked for DCF and their contractors. And I kind of doubt if psychsurvivor and I would agree on much if we were discussing, say, evolution, or single payer health care.

I don't think he made a conscious decision to incarcerate Justina just to stroke his ego. I think his ego biased him against the parents. I have seen this happen more than once - a fair number of doctors and other medical professional think that they deserve not only respect but also complete willingness on the part of their patients to go along with whatever they say just by virtue of their position. I once had to deal with a doctor who acted like any opinion I held as a result of my research was worthless - until I let her know that I had an advanced degree in a related field, and then suddenly she was willing to listen. There are a lot of doctors (and teachers, for that matter), who think that teens should kowtow to them, and don't know how to deal with those who stand up for themselves. In one of the articles I read, it said that Justina at one point demanded to speak to a lawyer. When one of my kids was hospitalized as a teen, she "fired" her physical therapist (the replacement p.t. was fantastic), demanded (successfully) to have different nursing staff assigned to her on a couple of occasions, and demanded to speak to a lawyer when essential equipment that had been promised did not materialize. It was pretty clear that the pediatric medical staff were not used to having teens advocate for themselves so strongly. From what I have heard from a relative in Germany, many, though not all, doctors there are of the "shut up and do what I say" persuasion. Years ago there was an article in the Globe about a young (early twenties) social worker who managed to take nursing twins away from their family, because one of them suffered from brittle bone disease and she thought it was abuse, even though the mother had been diagnosed with a less severe form of it. It took months for them to get their poor babies back, and obviously this totally destroyed their nursing relationship. The social worker was quoted in the article as saying that she did not understand why the parents did not "respect" her because she was a social worker, and that in her home country that respect would have been automatic. Well, thank goodness that is not true in the United States - although apparently some people think it should be. I don't know that you can generalize about psychiatry. CBT or DBT apparently work for some people; I think attempting to uncover "repressed memories," and hypnosis are pretty silly.

I can envision a number of scenarios where the Mass court would not support Children's - a fair and reasonable judge, for instance. I haven't heard that Judge Johnston has been involved in previous cases where there was a diagnostic dispute and Children's suggested medical child abuse, so I assume it was s different judge. Although I obviously can not read the mind of the neurology resident who suggested MCA, but it could be simple arrogance (he certainly appears to be smirking here: http://www.childrenshospital.org/doctors/jurriaan-peters or it could be cultural. I don't know much about the culture in Belgium, where he went to medical school, but apparently in Germany customer service is virtually non-existent, and that seems to be true of patient (or parent) - physician relationships as well - maybe it is similar in Belgium and Amsterdam. At this point, I think the only thing that would sway me to believe that Justina had been abused would be if Justina or her sisters reported abuse. As far as I know, no one has even suggested that the parents actively abused her, by poisoning or something similar. I do not believe that there is any way that the parents could have bamboozled Dr. Korson, Dr. Flores, the surgeons who operated on her, and the insurance company - especially since she was given a test of intestinal function prior to the operation at Tufts.

I do not agree that the longer this drags on, the more probable it is that BCH is correct. I think the judge has dug in his heels, and sees no way to back out without looking like a total idiot, and a cruel one at that - not to mention that by admitting that he/Children's/DCF were wrong, the Commonwealth of Massachusetts and the hospital would undoubtedly be a target of a huge lawsuit. I think it is quite possible that your hypothesis (number 4, I believe) from a previous post - that Children's does agree that Justina has mito, but for some reason also thinks (or wants to continue to pretend) that she has somatoform - is correct. The judge has stated that he wants Connecticut's DCF to take over. I think he hopes that if he can pressure them to do that, he will be off the hot seat, the Pelletiers will be forced to sign an agreement not to sue anyone in order to get Justina back, and the problem will all go away.

I think you are very wrong about there being an extremely high threshold for a diagnosis of medical child abuse. I have read of so many instances of parents of children with rare diseases being accused of medical child abuse. At least one medical school source included "being overly anxious about a child's illness" under the far reaching umbrella of medical child abuse - even when the child had a confirmed medical diagnosis. How anxious is "overly anxious?" How would a parent know precisely how anxious they are expected to be? If they are not anxious enough, then they run the risk of being accused of medical neglect. Do you have a citation for your assertion that there is an extremely high threshold for this diagnosis? What about the conflicts of interest of those psychologists who see it everywhere? What about all those parents of autistic kids back when a lot of doctors believed in the "refrigerator mother" hypothesis? I am sure most of them refuted that - and they were probably ignored because they "had something to gain" - but yet, they were correct. Obviously anyone who has been accused has something to gain by refuting the diagnosis. Anyone who is a parent of minor children has the potential to have something to gain, since one's child could come down with a difficult-to-diagnose illness. I am just grateful that all my children are adults now. I certainly hope that the appeal process vindicates this family, and I think it probably will if they can receive a hearing in federal court, but you obviously have far more trust in Massachusetts' judiciary and DCF than I do. I have lived in Mass almost all my life and know people who have had experience with the family court, with DCF as an employee or a client, with a number of the doctors at Children's and at Tufts. I am not anti-government - I have been a government employee for much of my life. I consider myself strongly liberal - but this is a human rights issue, not a political one.

Unless BCH agrees that Justina does have mito and thinks she also has somatoform, their diagnosis is absolutely in question, because a renowned metabolic specialist does think she has mito. It might not be that big a deal for a healthy person, but that is not necessarily the case for someone who is already in a weakened state. For those who claim that supporting the parents/sisters/Tufts position requires that one thinks there is a conspiracy among BCH/DCF/the judge, the alternative is assuming a conspiracy among the parents, all three siblings, Dr. Korson and the surgeons who operated on her, Justina's Connecticut psychologist, and the psychiatrist Dr. Keith Ablow. DCF does rely on BCH for their "medical expertise," so it is by no means an independent body. The judge was embarrassed by the negative publicity, especially concerning his gag order. In spite of the fact that Children's is well known for the quality of some areas, such as cardiac surgery, I have been unable, even after a great deal of research, to find any indication that their psychiatry department is anything special. For pediatric psychiatry, by far the most well known facility in eastern Mass is McLean Hospital, with Franciscans probably coming in second.

He "can't" have Asperger's syndrome because it was eliminated as a diagnosis in the DSM V, and we all know that's infallible. (sarcasm intended)

Her sister did have a muscle biopsy that was indicative of mitochondrial disease. That is one reason that Dr. Korson did not perform that test on Justina. He might have made a different decision had he known about the disaster that was going to befall her at Children's. It is unethical for Children's to say, "You can't "prove" that she has mitochondrial disease because you didn't do a muscle biopsy previously, and now you've lost your chance to prove it because we're in charge and we won't let you." It's also possible that Justina's health is too precarious now to risk doing a muscle biopsy.