re: Remember that girl in Mass. that was taken from her parents by the state?

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I've seen this waaaaaayyyy over diagnosed. Many shitty docs will defer to this when they have no clue and won't admit they don't know or who to ask.

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It all boils down to this, to me:

IF there are opposing opinions by reasonable, and respected, medical doctors...the PARENTS get to choose the one that treats. Unequivocal, no question about it.

Now, if the consensus medical establishment says "A" and a WITCH DOCTOR says "B"...then, the state has a case.

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Mass General is a different hospital entirely

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Ah, so her care was at Children's Hospital in Boston, not MGH.
Good.

Had read her care was at MassGen.
Regardless, if the case is as presented (and as I've said, there seems something more than meets the eye here), whether we are talking Hopkins, Baylor, Emory, Yale, Mayo the facility actions are inexcusable.

Reading further, it sounds like Boston Children's has a problem with the Mito Disease Dx in general.

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But this hospital — Boston Children’s Hospital — is now the target of national debate regarding practices that have resulted in children being taken away from parents. It’s being called the “dark side to Children’s.”

Not only is there the case of a Connecticut teen (Justina Pelletier) who has been held at Boston Children’s Hospital for 10 months after her parents lost custody of her over accusations of medical child abuse – something they vehemently oppose — but there are now a handful of other similar stories coming to light where parents were stripped of their ability to oversee their child’s care at Children’s.

Jessica Hilliard is one of them.

Hilliard’s relationship with Boston Children’s Hospital dates back to 2006. Her daughter, Eithene, was born with multiple birth defects, so Jessica and her husband would live at the hospital for hundreds of days a year over the next five years.

When she was 2 1/2 years old, the Eithene’s condition began to worsen. Combining knowledge from her own scientific degrees – Hilliard currently studying for a Masters in bioethics – and doing her own research, as many parents with access to the Internet these days would also do, Hilliard suggested to hospital physicians that her daughter be tested for mitochondrial disease.

This is the same complex disease that 14-year-old Justina Pelletier was diagnosed with, something her parents had been treating her for and something Boston Children’s disagreed with when the Pelletiers brought her into the hospital for the flu. This heated disagreement led to state involvement and, 10 months later, Justina is still at the hospital, seeing her parents only once a week as they continue to battle for custody of her.

“When we approached Children’s with the possibility it was [mitochondrial disease], we were immediately met with resistance,” specifically from the hospital’s genetics and metabolism departments, Jessica Hilliard said.

But they kept pressing and eventually had a sample of muscle tissue taken from their daughter’s thigh. The mitochondria in the cells of this tissue and other genetic aspects would be analyzed. This test, Hilliard said, was the “gold standard” for a mitochondrial diagnosis at the time it was conducted on her daughter. The disease, which is the result of a cell’s mitochondria (the energy producing organelle) not functioning properly, can manifest itself is a variety of ways and is therefore difficult to diagnose and has been confused with other disorders.

Cases of misdiagnosis have included somatoform disorder, which is what the hospital says Justina Pelletier really has — a psychiatric disorder that puts the symptoms she’s experiencing all in her head. In the last couple of decades up to just a couple of years ago, there have been reports from the National Institutes of Health describing cases of mitochondrial disease being initially misdiagnosed as somatoform disorder.

Hilliard said the genetics department that had analyzed her daughter’s muscle sample “didn’t believe the results,” which favored a diagnosis of mitochondrial disease. Instead of telling the Hilliards of this initial finding, the mother said doctors withheld the information for three months while they got another specialist elsewhere to test the sample as well. That specialist eventually agreed with the mito diagnosis.

LINK

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Again, hard to discern where spin stops and truth starts in these stories. However, Mitochondrial Disease is real. Treatment techniques are in early iterations and are often experimental. There is a contingent of """old school""" facilities/physicians who pooh-pooh the diagnosis altogether. Boston Children's sounds as if it may possess more than its share of those old-schooler's.

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facilities/physicians who pooh-pooh the diagnosis altogether. Boston Children's sounds as if it may possess more than its share of those old-schooler's.

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Yep. And will not treat it out of spite. F$%k it. Even if it is in her head. If "treating it" makes it better, you do it. Hell, we do it all the time to various degrees. The treatments aren't harmful. Nothing to lose except a child's life.

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I would understand if the choice were :

Dr. says "she needs med tratment"

Parent: "No"


That is NOT the case.

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For what I understand, it kind of is the case, though.

Dr. says "she needs treatment, and the treatment is to stay away from you two"

Parents: No


And here we are today.

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bullshite!!

You left out the part where DOCTOR A says "she needs med help that is different than the one the other doctor (Doctor B) says"

Parent says "I choose Dr. A"


Stop acting like you cannot see a difference in that

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Of course I see a difference, I'm not telling you what I believe, I'm telling you what I think the dr's at BC's are doing. Take a deep breath BHP

IOW, if a dr reasonably believes a child is being abused by her parents, it doesn't matter what a previous dr thinks, they are pretty much legally obligated to do something about it. Again, I have no clue whats going on here specifically, but thats what it seems like from the very little I've read (ie the OP and one other article).

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It's likely that HIPPA prevents Children's from going fully public, so it's a one-sided precept.

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True. But her parents could sign a HIPPA waiver allowing Tufts to discuss the case publicly. That would strengthen their case in public. Libs would have to explain why their own medical expertise trumps physicians from Tufts Medical Center.

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The doctor at Boston hospital has been in practice for less than a year.

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Is there an article discussing this or something?

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As for the custody thing, the anger should be directed at the judge and the Massachusetts DCF.

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No.
If the representation is accurate, Boston Children's and its docs involved are culpable as hell.

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Posted by NHTIGER

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He's the doctor that made the diagnosis. BCH stood by him since he called children services and blew this thing up.