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

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  • #1,361
The other children are all adults.


They certainly can spin it huh?

One day, she was ice skating, perfectly fine.... Then Children's swooped in ...like nazis...and kidnapped her. Right off the rink! Because there was a empty bed and they needed a new lab rat...to torture.
She's at deaths door, but living in a RTC....being dragged to outings to see the Blue Man show.

The parents version is ludicrous. IMO

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  • #1,362
The other children are all adults.

Oh, ok, thanks. I was going to ask that but then I figured if they were referring to them as children and there were multiple ones, they weren't that old. So then yes, the fact that they are at home is totally irrelevant.
 
  • #1,363
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.




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Yes, I think you are completely right.

I just find it strange that Governor Patrick wrote it that way when it doesn't sound like the most politically savvy way to put it. Or maybe he's just really trying to emphasize it has nothing to do with the diagnostic dispute and there's a lot more to it than just extreme medical care.
 
  • #1,364
Yes, I think you are completely right.



I just find it strange that Governor Patrick wrote it that way when it doesn't sound like the most politically savvy way to put it. Or maybe he's just really trying to emphasize it has nothing to do with the diagnostic dispute and there's a lot more to it than just extreme medical care.


I'm not always right, but I'm never wrong;)
lmao


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  • #1,365
Yes, I think you are completely right.

I just find it strange that Governor Patrick wrote it that way when it doesn't sound like the most politically savvy way to put it. Or maybe he's just really trying to emphasize it has nothing to do with the diagnostic dispute and there's a lot more to it than just extreme medical care.

He didn't write it that way. He never said "abused at home." His letter claimed there was a history of neglect at home. But when pressed on what it was, he claimed it was confidential information.
Sounds like nonsense to me. If it's so confidential, why bring it up at all?
 
  • #1,366
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.

All IMO


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rsbm;

As I stated before, mito is treated symptomatically- and it runs in families. Using mito as a working Dx until genetic testing improves/ symptoms evolve/abate is typical- similar to using the PDD-NOS or Autism Spectrum Disorder.

My problem with wording- it is lacking in clarity. There are so many different types of blood panels, as well as urinalysis profiles . No one states what blood panels were performed. Also, some have unusual draws. A tourniquet applied incorrectly, or for too long, or not applied- can severely screw up a few of the labs- and in the case of some mitochondrial deficits, "typical" blood panels are within normal limits.

A muscle biopsy is not always a great idea. They are not a defining test in some types of mitochondrial disease- and they require general anesthesia and are surgical in nature. Most insurance does not cover them and they are roughly $10,000.

I don't know enough about what exactly has gone on except Justina is horribly caught in the middle.
 
  • #1,367
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.


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She isn't safe at home? Says who?
 
  • #1,368
  • #1,369
He didn't write it that way. He never said "abused at home." His letter claimed there was a history of neglect at home. But when pressed on what it was, he claimed it was private information.
Sounds like nonsense to me.

Yes, he definitely isn't saying abuse occurred "at" the home, but that's how it's going to be read, so I just thought he'd dance around it more. Well it is private information, though. He probably doesn't even know the details. The court ruling said Connecticut substantiated allegations of neglect in the home, so I assume that i what he was referring to. That could just mean that when she was living with her parents, they were convincing her she was sicker than she was and stressing her out and all that - it's not necessarily a separate grounds from the medical abuse report filed by Children's. But Children's reported medical abuse and both MA and CT DCF found parental neglect - probably on the same general facts. Parental neglect and neglect in the home usually mean the same thing - it doesn't mean like the house is filthy or she's being beaten - just that the home environment is not healthy.

I think we also have to accept that you really can't test for mito or for somotoform, so no one is going to "win" here, really. No one is going to be proved "right" definitively. I don't believe any doctor "failed" to do a necessary test - there just aren't that many helpful tests. Both diagnoses involve looking at symptoms and possible factors underlying them. There can be overlap. I personally don't believe Children's is denying she has physical health problems - they are saying at least some of the symptoms are psychological, but that doesn't mean all are. It's very sad that she's had so many health struggles.
 
  • #1,370
Yes, he definitely isn't saying abuse occurred "at" the home, but that's how it's going to be read, so I just thought he'd dance around it more. Well it is private information, though. He probably doesn't even know the details. The court ruling said Connecticut substantiated allegations of neglect in the home, so I assume that i what he was referring to. That could just mean that when she was living with her parents, they were convincing her she was sicker than she was and stressing her out and all that - it's not necessarily a separate grounds from the medical abuse report filed by Children's. But Children's reported medical abuse and both MA and CT DCF found parental neglect - probably on the same general facts.

I don't know what he is referring to. I am not sure he himself has a clue as to what he is referring to.
Why exactly would it be confidential? Why are we allowing DCF to remove children without revealing what it is the parents are even accused of? They can claim anything without having to reveal what it is then.
Per what Globe reported, there was some sort of incident several years ago, where mother had concerns about feeding tube put into Justina.
And it was reported to CT DCF as neglect but the case was dismissed.
Is that the episode he claims as history of neglect?
By the way that certainly doesn't suggest mother was pushing procedures on her child that the child didn't need.
And in ultimate irony, later on Children's accused the mother of asking them to put a feeding tube into Justina when she brought her to Children's.
So she was apparently accused of not wanting the tube at first and then of wanting it. Seems like she can't win.
 
  • #1,371
I think we also have to accept that you really can't test for mito or for somotoform, so no one is going to "win" here, really. No one is going to be proved "right" definitively. I don't believe any doctor "failed" to do a necessary test - there just aren't that many helpful tests. Both diagnoses involve looking at symptoms and possible factors underlying them. There can be overlap. I personally don't believe Children's is denying she has physical health problems - they are saying at least some of the symptoms are psychological, but that doesn't mean all are. It's very sad that she's had so many health struggles.

this ^^^. Chronic illness of any form has an affect on the mental health of everyone: patient, family members, medical pros, etc. It's my understanding Justina was seeing a psych before this whole fiasco.

I believe the circus atmosphere as well as 'too many cooks" have impacted everyone involved's mental health negatively- and have hindered resolution.

And- Lawstudent, if you're bored...
http://neuromuscular.wustl.edu/mitosyn.html
 
  • #1,372
I don't know what he is referring to. I am not sure he himself has a clue as to what he is referring to.
Why exactly would it be confidential? Why are we allowing DCF to remove children without revealing what it is the parents are even accused of? They can claim anything without having to reveal what it is then.
Per what Globe reported, there was some sort of incident several years ago, where mother had concerns about feeding tube put into Justina.
And it was reported to CT DCF as neglect but the case was dismissed.
Is that the episode he claims as history of neglect?
By the way that certainly doesn't suggest mother was pushing procedures on her child that the child didn't need.
And in ultimate irony, later on Children's accused the mother of asking them to put a feeding tube into Justina when she brought her to Children's.
So she was apparently accused of not wanting the tube at first and then of wanting it. Seems like she can't win.

Not sure why you are confused - a child's private medical information is not given to the governor. It is given to a small amount of investigators for DCF and the judge. Additionally, custody proceedings are generally kept secret as well - anything involving children is usually confidential. The neglect is related to the medical charges - if there was more to it (like she was living in filthy conditions or beaten), it seems like there would be criminal charges, which would be public. If the parents were prosecuted, this would all have to be disclosed. But not in custody proceedings which are focused on the child. I realize that means there is potential for coverups, but surely you can see why we don't want all this information public in general.

I think the history he is referring to is whatever CT substantiated, but we don't know what that is because they did not assert jurisdiction to address it.
 
  • #1,373
this ^^^. Chronic illness of any form has an affect on the mental health of everyone: patient, family members, medical pros, etc.

And- Lawstudent, if you're bored...
http://neuromuscular.wustl.edu/mitosyn.html

It most certainly sounds to me that Children's are specifically denying Justina has mitochondrial disease. Children's wanted her taken of medications she was taking for mitochondrial disease, diagnosed her with somatoform, and forbade parents from seeking another opinion.
 
  • #1,374
Not sure why you are confused - a child's private medical information is not given to the governor. It is given to a small amount of investigators for DCF and the judge. Additionally, custody proceedings are generally kept secret as well - anything involving children is usually confidential. The neglect is related to the medical charges - if there was more to it (like she was living in filthy conditions or beaten), it seems like there would be criminal charges, which would be public. If the parents were prosecuted, this would all have to be disclosed. But not in custody proceedings which are focused on the child. I realize that means there is potential for coverups, but surely you can see why we don't want all this information public in general.

I think the history he is referring to is whatever CT substantiated, but we don't know what that is because they did not assert jurisdiction to address it.

Parents were neither charged nor prosecuted for anything here. CT DCF might claim they substantiated something in response to MA DCF, but they refused to take the case (at least that is what the judge claims), and Justina was living with her parents while in CT (and CT DCF had no problems with it).
So it certainly makes me question as to what exactly CT DCF claims it substantiated.
 
  • #1,375
...

I think we also have to accept that you really can't test for mito or for somotoform, so no one is going to "win" here, really. No one is going to be proved "right" definitively. I don't believe any doctor "failed" to do a necessary test - there just aren't that many helpful tests. Both diagnoses involve looking at symptoms and possible factors underlying them. There can be overlap. I personally don't believe Children's is denying she has physical health problems - they are saying at least some of the symptoms are psychological, but that doesn't mean all are. It's very sad that she's had so many health struggles.

Children's isn't denying she has physical problems. What they are claiming is that the reason for these problems is mental-thus diagnosis of somatoform (or conversion disorder). They are claiming there is no physical reasons for her physical problems. That is the definition of somatoform.
Diagnosis of somatoform assumes patient experiences real physical issues, but that these issues are caused by patient's mind (and not diseases like mitochondrial disease).
It would be a completely different treatment protocol to treat someone for somatoform vs. to treat someone for mitochondrial disease.
Which is why Children's wanted to discontinue her medications she was on for mitochondrial disease and parents refused.
 
  • #1,376
It most certainly sounds to me that Children's are specifically denying Justina has mitochondrial disease. Children's wanted her taken of medications she was taking for mitochondrial disease, diagnosed her with somatoform, and forbade parents from seeking another opinion.


This too ^^^. I simply do not understand why she was not transferred immediately back to Tufts- with their recommendations. Doctors disagree all the time. They used to call each other too ....
 
  • #1,377
It most certainly sounds to me that Children's are specifically denying Justina has mitochondrial disease. Children's wanted her taken of medications she was taking for mitochondrial disease, diagnosed her with somatoform, and forbade parents from seeking another opinion.

Maybe, but I'm not convinced of it. Or they could be acknowledging physical symptoms and attributing them to something else. The medication wasn't "for" mito, but to treat symptoms that were thought to be mito-related. The only mito-specific treatment is the vitamins. So they could have decided some symptoms were mito-related and others were not, or that a better treatment plan was indicated for mito-related symptoms, in addition to mental health care for those that they did not attribute to mito. You can't actually forbid parents from seeking another opinion, especially when they already had the diagnosis. They forbid them from discharging her and taking her elsewhere because they suspected abuse. I mean if Tufts was willing to take her and they wanted to go there, it's not even a second opinion - I find it hard to believe Children's would even care, though they'd still have to report the suspected abuse. But I don't think they wanted to discharge her home because they were concerned - but the parents can call up anyone they want about her condition.

Parents were neither charged nor prosecuted for anything here. CT DCF might claim they substantiated something in response to MA DCF, but they refused to take the case (at least that is what the judge claims), and Justina was living with her parents while in CT (and CT DCF had no problems with it).
So it certainly makes me question as to what exactly CT DCF claims it substantiated.

I never said they were prosecuted - that's why everything is confidential!

I just don't think you quite get the process:

1) There is the initial investigation in CT, which is not substantiated. That case ends. I don't know much about the details of that case. I believe it a MA doctor who called in the report to CT? Could be wrong on that. But because the report was made to CT, they could investigate, and they have automatic jurisdiction over residents in such reports.

2) Children's makes a medical abuse report to Mass DCF - they could have reported it to CT, but it seems in this case they were trying to get urgent action, and only MA could take urgent action. MA has the right to investigate anything reported to it within MA, but then most states have a law that says the state of residence has jurisdiction to take actual action - MA is the only state that does not. So MA instead just asked CT to take over the investigation and that MA would give them all the information gathered within their investigation (states generally cooperate in social services - both could have jurisdiction to take action, but they just work something out). Because it became urgent in the eyes of DCF, they took emergency custody but couldn't really do something more permanent because it was expected that CT would assert jurisdiction.

3) CT seems to kind of agree an initiates an investigation using the information MA gave to it, and reports back to MA that their assessment is the parents are unfit. Not much info on what it is that they found. MA says ok so then you are going to take action? And they say no we will not assert jurisdiction you can take our findings and continue with your handling of the situation. (there's some rangling in here about trying to find a placement but I think it became too difficult and both sides got annoyed and gave up) The judge in his ruling basically seems to worry that he even has jurisdiction, which is why he's not ordering the psych tests. But he felt he had to take action now because the only state that could have had it said it wouldn't challenge MA's claim of jurisdiction, so his hands were rather tied. If MA had the law CT has, they couldn't have taken permanent custody - it would have had to become a CT issue. I think he's uncomfortable with the jurisdictional scheme in thiscase and that's why he rants at CT.

MA DCF has the right to investigate anything, regardless of residence, that happens in MA. Jurisdiction comes into play when you are taking non-emergency action, which only happened recently.

Interestingly, it would seem that the parents could appeal for lack of jurisdiction, but they haven't mentioned that, so I don't know if that has any chance of being successful. Not sure what you do if CT won't help out. And they may think CT might not be more favorable.

4) CT closes its investigation. It doesn't move to take any action in court. If it did, it would be asserting jurisdiction, and all the related matters currently happening in MA could be ended for lack of jurisdiction with the understanding that CT will now decide what will happen. But because it took no action, it never asserted jurisdiction, so MA is stuck with it, but CT did do an investigation that substantiated the idea that the parents were unfit. The investigation is a separate matter than actual court action. The judge just relies on their recommendations. It's not like an actual ruling.
 
  • #1,378
This too ^^^. I simply do not understand why she was not transferred immediately back to Tufts- with their recommendations. Doctors disagree all the time. They used to call each other too ....

well, it does take some time to determine liability. Somebody is going to pay for all of these specialists' involvement. The Court has apparently now decided the medically responsible party is Tufts. Financial responsibility will soon follow. If Dr. Korson remains on their faculty a year from now, I'll be surprised. He failed to perform a muscle biopsy and the metabolic workup was "unremarkable" yet he invited scrutiny and wanted to be the center of all this and now he is.

JMO
 
  • #1,379
Somebody is going to pay-her medical insurance DCF put her on after taking custody. Dr. Korson isn't going anywhere. Muscle biopsy isn't mandatory.
Children's could have carried out muscle biopsy to rule out mitochondrial disease.
Which is what they are supposed to do for somatoform diagnosis-rule out other diseases first.
 
  • #1,380
well, it does take some time to determine liability. Somebody is going to pay for all of these specialists' involvement. The Court has apparently now decided the medically responsible party is Tufts. Financial responsibility will soon follow. If Dr. Korson remains on their faculty a year from now, I'll be surprised. He failed to perform a muscle biopsy and the metabolic workup was "unremarkable" yet he invited scrutiny and wanted to be the center of all this and now he is.

JMO

A muscle biopsy for mito is not the conclusive test.

Myth
A muscle biopsy is the "gold standard" for diagnosis of mitochondrial disease.

Fact
Although the muscle biopsy is a powerful diagnostic tool, it should not be considered a "gold standard." Examination of a biopsy includes microscopic evaluation, enzyme testing, and genetic testing. Although all U.S. labs that offer muscle biopsy meet strict laboratory guidelines, there is no agreed-upon standard approach for enzyme testing. Furthermore, a muscle biopsy with full analysis costs well over $10,000 and poses both surgical and anesthetic risks. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing -- in either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy.

Myth
A muscle biopsy is a muscle biopsy no matter where and how it is done.

Fact
Muscle removed for biopsy can be tested in many ways. For example, enzyme testing can be done on either ground-up muscle or on mitochondria extracted from muscle. Testing on extracted mitochondria is performed in only a few medical center laboratories and must be performed immediately. This procedure is known as a "fresh biopsy." In an alternative procedure, called a "frozen biopsy," the muscle is quickly cooled and stored at -80 degrees Celsius for testing at an outside facility. The scientific community is currently debating the advantages of testing "fresh vs. frozen" mitochondria. Some evidence indicates that the "fresh biopsy" may be the superior method. Other types of mitochondrial testing of the muscle biopsy may need to be conducted; a limited number of laboratories offer such testing.

http://my.clevelandclinic.org/disor...s_and_facts_about_mitochondrial_diseases.aspx


MA DCF could have followed Justina to Tufts.
 
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