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

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  • #1,381
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.

Time for you to produce links. If Children's didn't do a muscle biopsy for Mito, by all means please cite a link. Mito is the original diagnosis of Tufts. The burden for doing tests rests with Tufts. Thanks.
 
  • #1,382
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.

A muscle biopsy is a test and it was not done in this case, according to Dr. Peters. <modsnip>
 
  • #1,383
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.

Of course muscle biopsy isn't mandatory. But welcome to the real world if you think insurance will blindly pay for medical care or that Children's was under any legal obligation to rule out a diagnosis from another institution.

JMO
 
  • #1,384
Tufts and BCH are both in MA; 2.8 miles apart. I don't consider it an inconvenience for DCF to go Tufts.

Justina isn't an inpatient anywhere. There is no reason for DCF to go to Tufts or any other hospital that I can see. I think as soon as CT takes over the case, oversight of her care will shift to physicians in CT.

JMO
 
  • #1,385
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.

Of course muscle biopsy isn't mandatory but it is totally unrealistic to expect other physicians to respect a diagnosis if it isn't definitive.

I'll be shocked if Tufts renews Dr. Korson's contract because he has exposed them to huge liability, imo.
 
  • #1,386
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


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They are actually not text book examples at all. And that's been something that has added to my concern about this case.

I've read and studied all I can about medical abuse. In all the cases I've come across, not one has been a couple. In the literature, it appears that 99% of cases are moms operating alone. The rest comprise unrelated nurses and a couple dads for the most part, also acting alone.

The text book case is a mother with a medical background of some sort, who has an absent and/or passive husband.
 
  • #1,387
Of course muscle biopsy isn't mandatory but it is totally unrealistic to expect other physicians to respect a diagnosis if it isn't definitive.

I'll be shocked if Tufts renews Dr. Korson's contract because he has exposed them to huge liability, imo.

No he hasn't. And IMO, he's not going anywhere. He is a highly regarded doctor.
 
  • #1,388
Justina isn't an inpatient anywhere. There is no reason for DCF to go to Tufts or any other hospital that I can see. I think as soon as CT takes over the case, oversight of her care will shift to physicians in CT.

JMO

The opinion and discussion were related to when she was first adnitted.
 
  • #1,389
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.

Well, somatoform disorder disables people but mitochondrial can be fatal. If the child dies, mitochondrial would seem to be the more accurate disorder.

<modsnip>

Sure they do. When DCF opens or investigates a case, they track the child no matter where he or she goes, even out of state, until they close the case. DCF absolutely "follow" children they are attempting to protect.
 
  • #1,390
Well, somatoform disorder disables people but mitochondrial can be fatal. If the child dies, mitochondrial would seem to be the more accurate disorder.


Well, yes, if she dies of something that can be connected to mito, I don't think anyone is disputing that. But she hasn't died. I don't think Children's is letting her die to prove a point. Somatoform symptoms don't encompass every symptom out there - if her blood pressure started wildly spiking or dropping, they are not going to say that is psychological. That's not how it works.
 
  • #1,391
Well, yes, if she dies of something that can be connected to mito, I don't think anyone is disputing that. But she hasn't died. I don't think Children's is letting her die to prove a point. Somatoform symptoms don't encompass every symptom out there - if her blood pressure started wildly spiking or dropping, they are not going to say that is psychological. That's not how it works.

At this point she is no longer at Children's and Children's are not in charge of her care.
She has sever symptoms, including GI symptoms, and inability to ambulate, but by diagnosing her with somatoform, Children's claimed it was psychological.
Why would they have a different opinion on blood pressure?
 
  • #1,392
No he hasn't. And IMO, he's not going anywhere. He is a highly regarded doctor.

In my experience--which includes five years at a major research and teaching medical center--even highly regarded doctors sometimes lose the support of the employer when adverse publicity and dollars are involved.

I think this is especially true when it results in a huge financial liability in terms of costs of care.

JMO
 
  • #1,393
In my experience--which includes five years at a major research and teaching medical center--even highly regarded doctors sometimes lose the support of the employer when adverse publicity and dollars are involved.

I think this is especially true when it results in a huge financial liability in terms of costs of care.

JMO

Wouldn't that apply to the doctors in Children's who diagnosed her with somatoform rather than Dr. Korson? I really don't follow your logic here.
 
  • #1,394
Wouldn't that apply to the doctors in Children's who diagnosed her with somatoform rather than Dr. Korson? I really don't follow your logic here.

She still has the diagnosis of somatoform. That hasn't changed. Dr. Korson failed to make a definitive diagnosis of Mito, he failed to diagnose the somatoform and he referred his patient to a physician at another institution.

Not exactly a batting average that instills confidence in the boss, in my opinion.
 
  • #1,395
In my experience--which includes five years at a major research and teaching medical center--even highly regarded doctors sometimes lose the support of the employer when adverse publicity and dollars are involved.

I think this is especially true when it results in a huge financial liability in terms of costs of care.

JMO

That may be true. But there is nothing here that I can see that would have anything to do with economic liability on the part of Tufts or Dr. Korson. He made a diagnosis. There is no malpractice case that has been started and the only people who could bring that would be the child or her parents. Further, such cases are notoriously hard to prove and the parties have to have enough money to fight them- they are not contingency cases typically. Finally, injury directly resulting from diagnosis or treatment would have to be proved.

I'm not sure how Dr. Korson or Tufts could possibly be liable for anything under any other theory of law. They would not be liable for the cost of the child's treatment unless they directly caused the damage leading to the treatment (which would not be the case in a somatoform scenario), and again, the child or her parents are the only ones who would have standing to sue and it appears they like Dr. Korson.

She still has the diagnosis of somatoform. That hasn't changed. Dr. Korson failed to make a definitive diagnosis of Mito, he failed to diagnose the somatoform and he referred his patient to a physician at another institution.

Not exactly a batting average that instills confidence in the boss, in my opinion.

Dr. Korson made a diagnosis of mitochondrial disorder and he and an entire team of doctors treated the child for that. He later said that he couldn't be 100% certain but that appears to be the nature of mito just as tins with somatoform.

Also, he didn't refer her to a different doctor. He advised that the parents consult with the same gastroenterologist who has been treating the kid for a year, as part of her team.

Moreover, only one doctor has diagnosed her with somatoform. The others at BCH had a different diagnosis.
 
  • #1,396
Well, yes, if she dies of something that can be connected to mito, I don't think anyone is disputing that. But she hasn't died. I don't think Children's is letting her die to prove a point. Somatoform symptoms don't encompass every symptom out there - if her blood pressure started wildly spiking or dropping, they are not going to say that is psychological. That's not how it works.

Yes, I agree BCH wouldn't let her die to prove a point. And I know she's not dead. I don't think she close for that matter. But you essentially stated neither diagnosis can bel proved definitively. If she dies of her symptoms, it is not somatoform.
 
  • #1,397
At this point she is no longer at Children's and Children's are not in charge of her care.
She has sever symptoms, including GI symptoms, and inability to ambulate, but by diagnosing her with somatoform, Children's claimed it was psychological.
Why would they have a different opinion on blood pressure?

But, she didn't die at Children's. So obviously she wasn't experiencing untreated fatal conditions there. GI symptoms are a common psychological symptom, as is fatigue. That is why they can result from anxiety, depression, fear, etc. Your blood pressure can spike due to fear, anxiety, etc., but it it doesn't drop to fatal levels because of psychological issues. Psychological stress can only affect certain parts of your body in certain ways - it doesn't make you suddenly develop cancer or cause your bones to break or your kidneys to fail.
Dr. Korson failed to make a definitive diagnosis of Mito, he failed to diagnose the somatoform and he referred his patient to a physician at another institution.

He didn't fail - there is no conclusive test. A working diagnosis based on some evidence is not considered a bad thing - that's the only way some conditions can be diagnosed. And it is common that a doctor would refer a patient to another doctor - just because he specializes in mito doesn't mean he specializes in gastrointestinal medicine. He studies the cellular issues that accompany mito and how to deal with that - he doesn't specialize in how to deal with every possible health complication.
 
  • #1,398
But you essentially stated neither diagnosis can bel proved definitively. If she dies of her symptoms, it is not somatoform.

Right.
 
  • #1,399
But, she didn't die at Children's. So obviously she wasn't experiencing untreated fatal conditions there. GI symptoms are a common psychological symptom, as is fatigue. That is why they can result from anxiety, depression, fear, etc. Your blood pressure can spike due to fear, anxiety, etc., but it it doesn't drop to fatal levels because of psychological issues. Psychological stress can only affect certain parts of your body in certain ways - it doesn't make you suddenly develop cancer or cause your bones to break or your kidneys to fail.

He didn't fail - there is no conclusive test. A working diagnosis based on some evidence is not considered a bad thing - that's the only way some conditions can be diagnosed. And it is common that a doctor would refer a patient to another doctor - just because he specializes in mito doesn't mean he specializes in gastrointestinal medicine. He studies the cellular issues that accompany mito and how to deal with that - he doesn't specialize in how to deal with every possible health complication.

A muscle biopsy is an accepted test for Mito to help form a definitive diagnosis and Justina's metabolic screen was unremarkable. Dr. Korson, after all, is Chief of Metabolic Service. The BCH doctors don't share your view that these two glaring red flags "is not considered a bad thing" nor do I.

And it isn't all that common to refer a patient to a physician that is no longer part of the same medical center. You seem to want to forget that Justina was experiencing difficulty swallowing and walking. Those are not problems that a gastroenterologist would treat and Dr. Flores didn't.

JMO
 
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