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

[lawstudent]

Just a run down of some articles - bear with me.

The judge’s four-page decision . . . was remarkable for its detail and forcefulness. Johnston faulted Connecticut’s child protection agency for its failure to get involved in a case involving a child from its state, and faulted Pelletier’s parents for their verbally abusive manner and haphazard decision-making that he says has sabotaged plans to move their daughter closer to home.

Remarkable in comparison to what? We don't have many details, and how can it be "forceful?" Either he takes action or he does not. All of this is literally opinion and loaded language - sabotage has a different meaning than being vocally displeased and rude, which is more what this sounds like.

Johnston wrote that the parents called Boston Children’s Hospital personnel Nazis . . .
More recently, he wrote, “there has not been any progress by the parents. Rather, the parents . . . continue to engage in very concerning conduct that does not give this court any confidence they will comply with conditions of custody.” . . .

You never say a judge "wrote" anything - you say ruled or found if it's an order. I know this seems minor, but it really isn't. It's not opinion - these are factual findings (legally, whether you believe them to be true) entitled to a lot of deference and totally different than if a judge wrote something in another context. It's really inaccurate to say a judge "wrote" even if it sounds minor. Also, "more recently" - what does this mean? In a different ruling?

In his ruling, Johnston, for the first time publicly, stated his belief that Pelletier suffers from “a persistent and severe Somatic Symptom Disorder" . . .

He is not "stating his belief" - he is stating the factual finding of the court based on the evidence provided - it's a huge difference!

The judge’s ruling reinforces his earlier decision that the state child protection agency met its burden . . .of proving the Pelletiers were unfit to handle their child’s complex needs . . .

. . .

Later decisions do not "reinforce" earlier ones - that is a totally wrong interpretation. And "proof" is not required either. This isn't a criminal case.

Johnston also denied a request by lawyer Mathew Staver of Liberty Counsel in Florida to help represent the parents. Staver said he plans to take part in a plan to appeal Tuesday’s ruling on legal grounds, a process that he hopes might reverse the custody decision earlier than the summer.

. . .

I assume they mean they denied his motion to be admitted to appear before an MA court, where he is unlicensed - you can get an exception sometimes, and it happens pretty frequently. This makes it seem like the judge just wasn't letting them hire lawyers which is not within his power. He didn't "deny his request to help" - that's a bit ridiculous. Obviously he's still planning on taking part in appeal "on legal grounds" - what other grounds are there?

In tone, Johnston’s ruling made it appear he had lost patience . . .

"Made it appear" is not proper reporting, and it implies the judge made his decision because he got annoyed. I'm sure he had lost patience, but that's not really the issue.

He appointed a court investigator to advise him and come up with possible solutions.

And, what did that person say?

At a hearing in February, the judge wrote, the parents agreed to a deal where Justina would be moved to a Connecticut program under the temporary custody of that state’s child-protection agency. But a month later, through Staver, they informed another lawyer in the case that they would accept no state oversight and would agree only to their daughter’s returning home.

. . .

If the deal was transferring her to Connecticut CPS, the parents were not involved in that. They may have expressed approval and been cooperative and told the judge they thought it was a good step towards resolution, but they were not getting any custody under that deal, so I don't see how they could have "agreed" to it. They can't agree to custody - they lost it. Only a judge can approve custody. And apparently Staver is helping them, and who is the other lawyer? Who does that lawyer represent? And they can't not accept state oversight - clearly if they did support that plan, they understood it was state oversight, and regardless they have no right to reject state oversight or any power to "disagree" and hamper the plan. CT just apparently decided they didn't want to deal with it and gave up on working with that plan.

Previous efforts to find a residential treatment center for Justina in Connecticut have failed, largely due to the reluctance of many providers to get involved in a high-profile controversy. One facility in Connecticut that had tentatively agreed to accept Justina last year balked after her father threatened to sue it.

. . .

They really could specify what type of facility she needs since they are having such a hard time finding one - that would probably explain the whole case. What services are they arguing she needs? And how do they know it's due to reluctance if they don't ask? And "balked" is not an appropriate journalistic word, and how do we know it was in reaction to the father's threat?

The Department of Children and Families took emergency custody of the teen on Valentine’s Day 2013 after a diagnostic dispute arose between some doctors at Tufts Medical Center and Boston Children’s Hospital . . .

. . .

Who are "some doctors"? How many? What specialty? I thought only one doctor was involved at Tufts. And she wasn't taken because the doctors fought with each other....she was coming from CT .... that was kind of a different issue.

Pelletier remained at Children’s for almost a year, most of the time in a locked psychiatric ward. . .
. . .

WHY?!? That is a huge question - a locked psychiatric ward for several months implies something huge was going on. But they skim over it. They act like that's normal treatment for somotoform disorder.

Mahoney, the parents’ spokesman, said they are troubled that their daughter has yet to be seen by physicians at Tufts. Department of Children and Families officials said Pelletier’s visits at Tufts will take place soon, now that the parents “reached an agreement” with Tufts over a number of issues.

What does this mean? What issues? Why do the parents have to agree with Tufts for Justina to see a specialist if it is needed?

I mean some people view these issues as minor, but that's why journalism is what it is right now. These are major failures to follow up, verify, or explain things accurately. And if the information is not available, they should state that and cite some experts who explain possible reasons for such actions.

 

[SophieRose]

I posted this early in the thread about a teen that died from Mito last year.

http://www.registerherald.com/news/...Corynna-Strawser-leaves-behind-lasting-legacy

Her blog
http://courageforcorynna.tumblr.com/

 

[lawstudent]

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

Just to clarify, I believe the Globe is biased towards the parents, not against them. No conspiracy - just sloppy reporting.

 

[MyBelle]

Just to clarify, I believe the Globe is biased towards the parents, not against them. No conspiracy - just sloppy reporting.

The focus of the Globe is on the child, not the parents. Sloppy reporting? The Globe included the actual document signed by the Judge. If you think it is so unreliable, why not stop reading it?

http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthScience/Graphics/SCAN.pdf

 

[lawstudent]

Another article:

Mark Korson, a soft-spoken, goateed native of Canada, prided himself on always keeping his cool, even when the highly stressed patients and families around him were losing theirs.

Okay, so this is an interview with Korson, right? Great, we can get his side . . .

Staring at his desktop computer, surrounded by a sea of paperwork and multiple coffee mugs personalized with photos of his young son, Korson started to type.

This must be an ongoing investigation - sounds like they really have a grasp on this.

Korson stressed that there were no empirical tests to support the hospital’s new psychiatric diagnosis for Justina of somatoform disorder, which describes a patient with symptoms that are real but for which no physical or biological explanation can be found. “It is a clinical hunch,” he wrote, “a best guess.”

Nonetheless, to advance this new diagnosis suggesting a powerful psychological component to Justina’s weakness, eating problems, and chronic constipation, “the team has demanded that Justina be removed from the home and severe restrictions imposed on contact with her parents. This represents the most severe and intrusive intervention a patient can undergo.”

"Nonetheless, to advance a new diagnosis..." I mean, this is basically stating as fact that Korson is right and the doctors at Children's are part of a conspiracy. Half that sentence is an opinionated statement, and the other half is a direct quote, with no real qualification. So in order to advance their diagnosis, the team demanded that she be removed from the home. According to Dr. Korson's email and the journalist, even though Korson can't know that since it goes to the Children's doctors' mindset. And I don't think Children's can demand her removal from the home - they can make a report that they suspect abuse. DCF demanded that. And they didn't do that in order to "advance their diagnosis", but because of it, regardless of people's belief in it.

Child protection specialists stress how much children can suffer at the hands of parents intent on “over-medicalizing” or interfering with their care. But parents, including the Pelletiers, contend they were hit with these charges simply because they disagreed with the hospital’s diagnosis and wanted to take their child elsewhere for treatment.

Those opinions don't actually contradict - child protection specialists are essentially admitting parents are hit with charges because they insist on a different diagnosis with more "medicalization" and keep wanting a different strategy - they just believe it is more dangerous than the parents do. So why not look at how courts tend to draw the line and what biases might exist that we need to address?

The problem is that there are few good paths to resolution once doctors are convinced that parents are harming their child. The tools available are exceedingly blunt and emotionally inflammatory: The system basically requires doctors to suggest the parents are unfit and may deserve to temporarily lose custody of the child, as well as any voice in the child’s treatment.

Doctors are mandatory reporters, right? It has nothing to do with being "convinced" - they have to report that. Exceedingly blunt and inflammatory?? As opposed to what? Exceeding implies some other alternative . . . if they are reporting parents are harming their child, then yes they are questioning fitness - it's not "basically" requiring that - that is what happens. But they aren't suggesting anything about custody, just reporting their suspicions to DCF.

The Department of Children and Families is supposed to referee such disputes, but the agency is ill-equipped to intercede at the highest levels of medicine. Across the entire state, the DCF staffers with formal medical training consist of just one half-time pediatrician, one half-time psychiatrist, and a handful of nurses.

So did they intervene? Or is it just that the Globe thinks they are incompetent? We don't know from this. And "referee" is a bizarre term to use, and how many doctors do they need?

No doctor wants to miss diagnosing this relatively new but still murky cellular energy-production disorder because it can be fatal. . .

[An expert's] recommendation for resolving these conflicts, widely shared by child-abuse specialists at top hospitals, is to convene the clinicians involved in the child’s care over the years, try to reach consensus on a plan, and work with the parents. The state child protection agency can orchestrate such a meeting as can the hospital. Boos said it’s critical that all key players be allowed to air their views candidly yet respectfully. “It’s better,” he said, “if everyone took a humility pill.”

Well it's not one disorder, and they finally asked an expert, who wants everyone to "take a humility pill" and work together, which obviously is not an option in this case because it has miserably failed, regardless of who is at fault. Very helpful and practical.

After Justina had been missing from school for several weeks without explanation, her friends began leaving worried, tearful messages on her cellphone. When Justina finally mustered the strength to call them back, they were relieved.

“I miss you,” her friend Hannah Goldberg said.

“I miss you, too,” Justina replied.

Without explanation? DCF is not going to come to the school and hold an assembly. The parents had to explain. It was illegal for anyone else to do so. How do they know it had anything to do with her strength or lack of, and the fact that she misses people also has nothing to do with this story or her true diagnosis - I would think she greatly misses her friends and family. I understand the need for a personal touch to the story, but this is totally out of context.

During the year before her hospitalization, when she attended a private school in Connecticut designed for children with learning disabilities . . .

What was her disability? I don't think they've even mentioned that mito causes learning disabilities - they just said it can be fatal. Seems like something worth looking into, since there is a connection.

She used a wheelchair to get around the corridors, because she hadn’t been walking since before she arrived by ambulance in February.

Before this they went into a lot of detail about how much she enjoyed iceskating. Are they going to at all explain why she's now in a wheelchair, how that relates to mito, whether there was an injury, anything?

Bader was generally library-quiet. The security and oversight were tight, because the unit specializes in treating children and teens with depression, schizophrenia, eating disorders, and other serious psychiatric illnesses that might make them a threat to themselves or to others.

Is the write in that ward? I mean how do you set the scene? I assume they chatted with her parents, but it's still just weird. And they acknowledge why most children are there - why not look into that a bit more? The issue is not really does she have somotatoform, but why the heck is she there when that's not a normal treatment? That is the issue they should investigate, but they are stuck on it having to be mito and that being the real issue.

During one visit with Justina, Linda had held needles in her lap. When confronted by staff who insisted she put them away, she complied and explained they were for her diabetes. Linda described the needle incident to the Globe as an innocent mistake.

This clearly implies the doctors were being way overboard - "confronted" and "insisted." She has needles in a locked psych ward where people harm themselves! She may not have meant it, but yes, they will be forceful about that!

The affidavit showed considerable deference to Children’s. It quoted liberally from hospital records and interviews with staff members there, including accusations that Justina’s parents were obstructing her care. It said the Children’s doctors “do not know where the parents picked up the current diagnosis and they are hard to disprove.” It included negative comments from Justina’s Connecticut pediatrician about how Linda and Lou had “fired” multiple doctors and “encouraged” the diagnosis of multiple medical problems.

. .. However, the affidavit failed to mention that the social worker had interviewed Korson, and that Korson had explained the origins of the working diagnosis of mitochondrial disease that he had given Justina.

But he is a specialist in such disorders - presumably they sought him out because they suspected she had mito. Doesn't it seem more likely Children's doctors mean they don't know how they picked it up originally, and not that Korson introduced it to them? And affidavits do not have to include all the information - just the facts for their motion. It's not supposed to be unbiased.

When the parents received an e-mail from the person the judge had appointed as an independent investigator to advise him in the case, they were outraged to see her list an affiliation with Children’s in the e-mail.

What was the affiliation?!? This seems like a big thing.

Tellingly, though, the report concluded by noting that it was only “advisory.” As for its recommendation that Justina’s case be reviewed by doctors outside Children’s, previous efforts to do that — first at Tufts, then at Baystate in Springfield — had already fizzled. Hospitals can be reluctant to join in such reviews in cases where a family’s behavior has been difficult and full reimbursement by insurance is in doubt. But the family blamed Children’s for dooming these efforts.

This is the ETHICS COMMISSION of Children's Hospital!! Nothing is "telling" about it being "advisory" - do they have any authority? I assume they can *only* issue advisory opinions - they are a commission, not a board!

Oh and the Korson stuff appears to be all from emails/their own imaginings, since he can't talk about it!!

 

[lawstudent]

Elizabeth’s case had also hinged on a dispute over whether her problems were physical or psychiatric. . . . In the end, as part of an agreement forged by the juvenile court, the state child protection agency, and the parents’ attorney, Beth Maloney, Elizabeth’s care had been moved to a team at Massachusetts General Hospital, and her parents had agreed to get an apartment in Boston.

But five months into Justina’s saga, there was no hint of a similar path toward resolution.

What resolution? It sounds like he parents never got back custody. Also, their attorney is not a party to any agreements - the parents would be. But since they didn't get any custody, what did they agree to? The state can't "agree" that they will move to Boston - I mean this whole paragraph is bizarre. What about this is something that would help Justina's parents? It sounds like the opposite of what they would want.

Then the discussion about the home being "unsafe" despite never having been visited. I mean, clearly she was not taken away based on unsafe home conditions, so more was said than that. They may have said that meaning that living with the parents was unsafe due to their abuse concerns, but it has nothing to do with the actual home.

In a fit of anger, Lou had threatened to sue the facility if it accepted Justina. But after visiting Webster House, he and his wife softened their view and expressed interest in having Justina there, as a first step to getting her home. Yet by early September, the facility’s administrator e-mailed Lou with bad news: “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.”

So the rejection came after the agreement, not after he threatened to sue. And no mention of an initial acceptance.

Around the same time as Justina’s admission, a 5-year-old Massachusetts girl, who had been treated for mitochondrial disorder at Mass. General, arrived at Children’s. Within a couple weeks, her mother was escorted out of the hospital by security late on a Friday afternoon, and the state took emergency custody of the girl. For the first time in her life, she spent the night without a family member at her side.

And...did the mom get her back? Was the diagnosis ever confirmed? Was another one given? Where were her other family members? I mean, come on - basic reporting!

Different case:

“The fact that Children’s has so much power that they can get us in trouble with a totally different hospital across the city is appalling,” said Jessica Hilliard, the mother involved in that case. Her son Gabriel is being treated for mitochondrial disease. The state did open a new investigation but ultimately closed it.

If abuse is reported, then yes, DCF will follow you to other hospitals. Nothing about this is odd or unjust - it's not Children's "getting you in trouble" - DCF is a state organization. They follow you everywhere. If there is any misconduct in this case, I believe it is by DCF, not Children's.

Boston Children’s Hospital officials, citing patient confidentiality, declined to discuss individual cases or allow any of their doctors to do so.

It's not Children's forbidding them - they would be disciplined by the medical board. They can't just discuss treatment in detail.

Mannie Taimuty-Loomis, a mother who lost custody of three of her children for nearly nine months in a disputed mitochondrial case in Pennsylvania but was ultimately cleared of wrongdoing, felt this isolation. She compares how some hospital staffers treat mothers like her to the refrain from a Lee Ann Womack country music song: “I really hate her, I’ll think of a reason later.”

While I have no doubt this attitude occurs sometimes, this random woman's quote from a song as an authority for the idea that this happens often is bizarre.

Linda explained that Korson, the chief of metabolism at Tufts, had diagnosed Justina with mitochondrial disease, the same disorder that another of her four daughters, 24-year-old Jessica, had been diagnosed with several years earlier.

They keep saying the sister was treated for it - now diagnosed. Which is it? They also talk about the concern of taking her off drugs that boost blood pressure - higher blood pressure increases stroke risk, so I find that somewhat interesting, especially paired with drugs to stop a high heart rate, but I'm not a doctor.

Like his wife, Lou, a balding 55-year-old financial planner with piercing blue eyes, had never been shy about

This sentence is quite grammatically strange, but I find it more bizarre they're describing his eyes like a dating ad - I mean these articles are crazy to me. Clearly they are not just worried about the child in this story - they are heavily involved with the parents, who are giving them most of the information. They explain her mother got the tenacity to fight the state because her parents had fled communism...

When she returned to Justina’s room, Linda found a hospital “minder” who, she learned, would be stationed there around the clock, sitting between her and her daughter.

Who is this person?!? This seems important. DCF or a hospital security guard or what? You don't just say that and move on...

Justina also did not seem to him to be a child suffering from a psychosomatic disorder, since many with that condition tend to avoid school. In contrast, Justina loved school and her friends so much that she resisted Korson’s recommendation for her to reduce her fatigue by switching to a mornings-only schedule.

Clearly that's not the only thing indicative of the issue - I mean, I'm sure he had more reasons for ruling out somatoform - could they have looked into that? I only hear about adults being diagnosed with it normally, so clearly school is not the defining factor.





And how about this:

(Korson and Newton both declined to speak specifically about Justina’s case, but records and correspondence obtained by the Globe describe their thinking.)

I think that says it all. Thanks to the Globe for telling us their thinking from leaked emails and unexplained physical descriptions of Korson, his actions, his office, what stairs he walked up, and all manner of things that apparently were gleaned from emails.

 

[lawstudent]

Finally, re-reading the order, it's the judge who says that no one would take her due to the parents, so that was accurate reporting. He also does say CT "should" have taken her without any explanation, which was a bit weird. But then later he mentions the Interstate Compact, so I believe that's what he means. He also discusses this Act:

"The Uniform Child Custody Jurisdiction and Enforcement Act (UCCJEA) is a Uniform Act drafted by the National Conference of Commissioners on Uniform State Laws in 1997. The UCCJEA has since been adopted by 49 U.S. States, the District of Columbia, Guam, and the U.S. Virgin Islands. The Act became effective in Vermont on 7/1/2011. As of July 25, 2011 the only state that has not adopted the UCCJEA is Massachusetts, although a bill to enact it is pending in its Legislature. Puerto Rico has also not adopted the Act." - Wikipedia.

So weird that only MA hasn't done this - would have saved them all the trouble. Connecticut would have had no choice in jurisdiction it seems otherwise.

Very interesting that he admits they need to do psych evals but refuses to do it - he is furious at Connecticut. The Globe would have been quite correct to say the opinion excoriated that state in a very unusual fashion. That is really all he cares about - he says MA DCF has to do more to get CT involved after admitting they've tried everything so it's kind of strange. He says MA DCF "represented" that CT was investigating, which almost seems like he doubts it, but later discusses their investigation.

 

[jjenny]

Elizabeth Wray (the girl with PANDAS) is back with her mother.
So that case was resolved.

 

[momrids6]

Learning disabilities are common in children with medical conditions, for various reasons.

Low blood pressure also causes problems.

 

[lawstudent]

Elizabeth Wray (the girl with PANDAS) is back with her mother.
So that case was resolved.

Thank you, and I assume maybe that hadn't happened yet at the time that article was published - but I just have no idea why they drew that comparison and said but unfortunately Justina's case didn't appear to be moving towards such a resolution. No resolution favorable to the parents was mentioned in that article. It just had no context.

Learning disabilities are common in children with medical conditions, for various reasons.

Low blood pressure also causes problems.

Yes, I know, and I'm not disputing any of her medical issues because I have no information on that, but I'm saying that if a writer is doing an in-depth story mentioning the father's piercing blue eyes and the doctor gazing at a photo of his son (without ever having apparently talked to the doctor somehow), the writer may want to actually explain the medical issues. That's the whole story.

The learning disability comports with the mito diagnosis to some extent, or it could be totally unrelated. But wouldn't it make sense to point out that it is a symptom of mito, or that there was dispute as to the cause? That's highly relevant. And I know low blood pressure is also dangerous and consistent with her symptoms, but high blood pressure is usually associated with strokes, so I would just think that would be a tricky thing to treat simultaneously. Low blood pressure symptoms worsen upon standing, so maybe that was what the wheelchair and fatigue were attributed to originally, but the medication didn't seem to have helped since she had been losing the ability to walk prior to hospitalization.

 

[momrids6]

Low blood pressure symptoms worsen upon standing, so maybe that was what the wheelchair and fatigue were attributed to originally, but the medication didn't seem to have helped since she had been losing the ability to walk prior to hospitalization.

Mitochondrial disorders effect energy production. www.umdf.org

And, my stating an opinion or fact does not mean I am disagreeing with you. My son has mito- albeit in a different Complex than Justina and her sister- but I can tell this group more about Mito than most doctors.



If you have read the entire thread, you will see I have yet to take a public side in this case...purposefully, I may add.

 

[Blue_Dolphin308]

According to a list allegedly penned by Justina, these are the top 15 reasons why the State of Connecticut should rescue her from Massachusettes DFC and send her home to her parents (errors in spelling not corrected):
LIST

1. Wen I got on harnes thing (sic) they moved my legs I didn’t walk or stand
2. Thay are lying
3. what happen the other nite how did you see me
4. O.T laff at me wen I’m [falling? Balling?]
5. and alot more……

Read more at http://www.commdiginews.com/life/ju...ldren-and-families-15964/#7WBw04MvHaCzqwwA.99

​

 

[lawstudent]

Mitochondrial disorders effect energy production. www.umdf.org

And, my stating an opinion or fact does not mean I am disagreeing with you. My son has mito- albeit in a different Complex than Justina and her sister- but I can tell this group more about Mito than most doctors.



If you have read the entire thread, you will see I have yet to take a public side in this case...purposefully, I may add.

I don't think we have any disagreement either!
:truce:

I have no doubt you know way more than I do by far, but I did read a lot about the condition on that website - pretty much scrutinized it a few days ago. I was only saying that the Globe writers don't appear to have done so and has been generally vague about mito while constantly defending that diagnosis, which is strange. Talking to someone like you who has personal experience raising a child with it would be a very valuable interview for them to run. They briefly reference physical symptoms without drawing a connection to mito or to any other cause, which is the key to this whole diagnostic dispute.

 

[momrids6]

I don't think we have any disagreement either!
:truce:

I have no doubt you know way more than I do by far, but I did read a lot about the condition on that website - pretty much scrutinized it a few days ago. I was only saying that the Globe writers don't appear to have done so and has been generally vague about mito while constantly defending that diagnosis, which is strange. Talking to someone like you who has personal experience raising a child with it would be a very valuable interview for them to run. They briefly reference physical symptoms without drawing a connection to mito or to any other cause, which is the key to this whole diagnostic dispute.

They need to talk to a mitochondrial disease specialist- who are few and booked solid for months, imo. It is such a variable disease, it is hard to generalize it.

I wasn't comparing your knowledge to mine. I was trying to answer the question you asked- not realizing you were questioning the Globe, not asking in general.

Korson is one of the best in this field- and since they cannot talk to him- their best bet is Gropman in DC or Cohen at The Cleveland Clinic. ETA: They would be unable/unwilling to discuss Justina- due to laws and they have not participated in her care though, imo.

My son's symptoms as well as Complex affected are very different from hers- I'd be of no help in establishing anything specific to her diagnosis. I can only attest to Korson's competence.

The Globe reporter is not a medical doctor- probably relying on diagnosis based on hospital/doctor.

 

[lawstudent]

According to a list allegedly penned by Justina, these are the top 15 reasons why the State of Connecticut should rescue her from Massachusettes DFC and send her home to her parents (errors in spelling not corrected):


​

What I find interesting is that while the spelling and other things are way off, the grammatical structure is very good where it doesn't suddenly become nonsensical. I wonder what the learning disability she has been diagnosed with is. Usually grammatical issues are the most common.

This article had some interesting things besides the list:

Well, first off, it's not very objective, but that's pretty upfront so just going with their opinion:

A year ago, Justina was a flourishing 14-year-old girl who lived with her parents in Connecticut, had an active social life and took part in figure skating competitions.
Today, Justina is a wheelchair-bound ward of the state who has been warehoused for over a year in psychiatric facilities with no substantial access to her family and friends, and reportedly has resorted to scrawling SOS letters begging for physical protection from the same State workers charged with her care.

I mean there was an interim period there when she was in Connecticut and treated at Tufts and was deteriorating. That can't be totally ignored.

According to Boston Herald writer Michael Graham, Gov. Deval Patrick has said:

“I see in your letter that you continue to misunderstand the role of the commonwealth in Justina’s case,” Patrick wrote the representative. Justina is in DCF custody because “a judge ruled that her parents were unfit to care for her” in February 2013. “[A] decision,” Patrick wrote, “based on a detailed record of the history of neglect in the home.” …

It's interesting to me that Gov. Patrick is writing to the Herald - usually politicians hate the Herald. Seems like he's pretty aggravated with the Globe when it comes to this story - not used to being torn apart on their pages. Neglect in the home is strange though - so now it is about home conditions? It could just be more of an indication that the family environment was unhealthy in general, but since she had always lived at home, that's where the fears about her health were being fed. But since I know he had that letter scrutinized heavily before it went to the Herald, it seems a bit strange it would say that. The judge said unfit to meet her medical needs, but did acknowledge that Connecticut substantiated neglect allegations. It's hard to follow.

In February 2013, Justina was taken to the Boston Children’s Hospital ER suffering from flu-like symptoms while her doctor at Tufts was on vacation. DCF apparently took custody of Justina because a BCH resident (who was running a somatoform disorder study) decided within 72 hours of meeting Justina that her problems were all up in her head, and the Tufts doctors (who had been treating her for years) had misdiagnosed her with a rare metabolic disorder.

Had not heard a direct reference to this resident before, and I don't think it had anything to do with her doctor being on vacation - he wasn't an ER doctor and wouldn't have seen her otherwise. She wasn't even take to the ER in Boston, was she? ER in CT and then appointment with the Children's doc?

Perhaps unsurprisingly, BCH could find no physical explanation for Justina’s pain, severe musculoskeletal, gastrointestinal and neurological problems after negating the Tufts diagnosis she received from Tufts (which was based on years of observation and treatment).

Okay, I just need to make this clear: "Tufts" did not give her a diagnosis. A doctor did. Do people realize doctors frequently differ on diagnoses? Not saying at all that the mito diagnosis should be quickly discounted without substantiation, but I mean it's not that weird. I'm sure Tufts and Children's doctors differ all the time on diagnoses without it devolving into craziness. I have always struggled with severe insomnia literally since infancy, and my attempts to work that out have involved all sorts of mental health testing. Mental health is obviously more flexible, but I cannot even believe how many different diagnoses I get from reputable physicians. Like, within the same month. It's driving me crazy. And I know it's not serious like mito can be, but I don't think a lot of people seem to realize how many people in the mental health system can have major issues with this. Some people may have been treated with a medication for years based on a diagnosis, and then have to switch doctors for some reason who are very anti-medication and essentially let that person go into withdrawal and tell them they are an addict. Even if there's good reason to suspect that, the person still relied on the other diagnosis for years, and then can have it completely ripped away without all that much questioning. Insurance companies always want all this substantiating to cover mental health prescriptions. Happens a lot with people who say they have chronic pain as well. The fact that 2 doctors say totally different things rarely seems to be questioned in that context.

That was when the State became convinced by BCH’s speculative explanation that Justina’s parents may be suffering from an extremely rare psychiatric condition called Munchausen by proxy, and it was causing them to seek medical attention for Justina by exaggerating, falsifying or even causing Justina’s illness. The State believes that Justina’s grave physical condition is essentially a manifestation of her parent’s mental illness and her own.

Where is this coming from? Is this stated somewhere? This makes sense given what we know, but I didn't think it was substantiated. And how was it then related to the home visit issue?

Nonetheless, Judge Johnston’s decision also placed Justina back in the care of the same Tufts doctors who he believed had misdiagnosed her and acted as pawns for the parents to a degree that posed a “risk of death or serious physical injury” sufficient to effectively terminate their parental rights in the first place.

That's not true - I still don't think it's been established he found she didn't have mito. I mean, actually I know he didn't because it's not in the ruling. Someone can have mito and still be subjected to unnecessary procedures and the doctor isn't necessarily incompetent depending on the situation.

The Pelletier’s other children remain in their parent’s home.

Then it doesn't seem to be a home condition issue at all.

Ultimately, DCF is an agency that falls under the Executive Branch, which is overseen by the governor. It would, therefore, seem that the Governor has the power to furlough prisoners, surely there is something more the governor could do to help Justina and her family.

Yes, he has that power. He does not have the power to individually judge medical situations of patients and supersede their judgment. He could fire the people involved.

When asked about Justina’s case today, Governor Deval Patrick said that “She should be in Connecticut. We have appeared in court to have her sent home to Connecticut. Believe it or not the court has jurisdiction, not us.”

Now I'm confused - did Patrick have anyone read this? Or did he read it? Because they don't have jurisdiction or there could not have been a ruling here. They had jurisdiction once it was reported to them, but then chose not to take action, but any related action could have then become subject to their jurisdiction on request. But they didn't request it and with no pending action in Connecticut, MA can't argue for the issues to be merged.

Experts like Dr. Eli Newberger (who founded BCH’s Child Protection Unit, retired a decade ago) say these somatic disorder labels make great alibis for predators in cases where a child is abused or trafficked, but the trouble in Justina’s case is that it is difficult to know who the real abuser is?

What? How is it an alibi?

At worst, some legislators are asking the types of questions one would want to know if they thought Justina could be part of a “kids for cash” scam that uses deliberate misdiagnosis of mental illnesses to traffic children to the hospitals conducting experiments on them.

This is just ridiculous to me. Who are the legislators? And Children's probably has kids lining up for their experimental trials because they usually exchange those for discounted treatment, and there are a lot of desperate people out there. Not sure why they'd have to pick a random girl and go through all this.

 

[lawstudent]

They need to talk to a mitochondrial disease specialist- who are few and booked solid for months, imo. It is such a variable disease, it is hard to generalize it.

I wasn't comparing your knowledge to mine. I was trying to answer the question you asked- not realizing you were questioning the Globe, not asking in general.

Korson is one of the best in this field- and since they cannot talk to him- their best bet is Gropman in DC or Cohen at The Cleveland Clinic. ETA: They would be unable/unwilling to discuss Justina- due to laws and they have not participated in her care though, imo.

My son's symptoms as well as Complex affected are very different from hers- I'd be of no help in establishing anything specific to her diagnosis. I can only attest to Korson's competence.

The Globe reporter is not a medical doctor- probably relying on diagnosis based on hospital/doctor.

Yeah, I agree they need to talk to another specialist - I would really like to see a more in-depth interview on the condition.

A lot of doctors are talking to the Globe - if they aren't treating her, that's fine legally because it's not confidential. But most doctors probably do not want to speculate as to some other patient's treatment, wisely. That's why they unfortunately get ones who do it for the publicity, not respected specialists, and the information is not accurate and is just kind of good for headlines.

The issue I have with the Globe is not that they don't have a great medical knowledge, but that they interview doctors and have all this correspondence between doctors and yet include only the parts relating to the fight between the family and Children's, and not any actual analysis of the symptoms or treatments. The Globe clearly is taking the position that her parents have been wronged and that this second diagnosis is highly suspect. So why don't they ask somebody if these systems are more consistent with one disorder over the other, or what could explain the decline she experienced and her continuing decline, and all that? What causes a hairline to recede and that sort of weakness? Could there be other explanations? Even someone who isn't a specialist should be able to provide some clarity on why Children's may have decided something differently or how common these things are. What complex is affected for Justina, etc.? Through my work, I know that they report things without ever doing any sort of verification - it's one thing to not be an expert, and another not to consult an expert, or one of the parties being reported on, or even to google the issue. Saying the court passed a law is a major error that anyone who is doing political reporting should not be making - clearly that person did not even read the court ruling but wrote the article anyway.

The writer expresses concern over her meds being removed, but doesn't really mention why she's on the meds or why they were removed and if this is even mito related, other than the vitamins. If they don't follow up, they shouldn't be implying things are being done incorrectly. And they also discuss somatoform disorder as though it doesn't really exist, which I know some people believe, but they also don't seem to understand that it's several disorders. I think if you started asking people about hypochondriacs, they will acknowledge that some people do think themselves into symptoms. It doesn't mean Justina has it, but they're acting like this is a new concept when it's not.

I hope your son is doing well and has been able to get good medical help.

 

[Linda7NJ]

They need to talk to a mitochondrial disease specialist- who are few and booked solid for months, imo. It is such a variable disease, it is hard to generalize it.

I wasn't comparing your knowledge to mine. I was trying to answer the question you asked- not realizing you were questioning the Globe, not asking in general.

Korson is one of the best in this field- and since they cannot talk to him- their best bet is Gropman in DC or Cohen at The Cleveland Clinic. ETA: They would be unable/unwilling to discuss Justina- due to laws and they have not participated in her care though, imo.

My son's symptoms as well as Complex affected are very different from hers- I'd be of no help in establishing anything specific to her diagnosis. I can only attest to Korson's competence.

The Globe reporter is not a medical doctor- probably relying on diagnosis based on hospital/doctor.

Korson has said it wasn't a definitive diagnosis. He wasn't 100% certain.

Children's has said her blood panels were unremarkable and no muscle biopsy was done.

We don't know if her blood panels continued to be unremarkable or if Children's did the biopsy.


Her parents are text book examples of "those parents" that medically abuse their children. They're absolutely and without a doubt attention seekers.....to their daughters detriment.

All IMO


Sent from my iPhone using Tapatalk

 

[Linda7NJ]

I think some are confused by the language used ... Specifically. "Abused in the home"
I think it would be more accurate to say, " while Justina was in her parents care, custody and control she suffered medical abuse.




Sent from my iPhone using Tapatalk

 

[Donjeta]

Quote:
The Pelletier’s other children remain in their parent’s home.

Then it doesn't seem to be a home condition issue at all.

The other children are all adults.

 

[Linda7NJ]

The other children are all adults.

Home is where her parents are. They believe she is not safe under her parents roof, in their home.... So yes... It's a home issue, as she isn't safe there.


Sent from my iPhone using Tapatalk