quote:

ORIGINAL: fucktoyprincess
It seems like it would help to know what the rationale of BCH was to begin with - because we don't have that information at all - only what the parents are asserting the hospital did and said. I have to believe that unless BCH felt the child's life was in imminent danger they would not have acted as they did. But based on what?? And while it appears that BCH did not consult with Tufts, could the parents not have called the Tufts doctors in to testify on their behalf?? This whole thing seriously raises more questions than I feel are answered by the various articles that I've read.

quote:

ORIGINAL: DomKen

I've spent several hours reading up on this case and the information available publicly is frustratingly vague. It could be that the parents are right and this young lady urgently needs the care the want to give her or it could be that she is so convinced she is sick that she fails to thrive despite the best care of one of the top hospitals in the nation. She desperately needs an independent diagnostic evaluation to determine which it is.

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: Aylee

I will note that they refused to do the most rudimentary testing to verify her past medical history, such as the MRI to confirm the childhood stroke of her brain, which was the reason she was on blood thinners and certain neurological drugs. Not to mention there are genetic tests for the markers that indicate for the DNA disease that the girl in question has.

Instead they allowed a doctor to practice outside of his field and disregard the expert opinion of doctors at his OWN hospital and impose his own diagnosis when the patient in question was NOT HIS patient.

Considering his department has done this numerous times (at least several that have been documented), I do wonder what HE or his department head has on the hospital administration, because of the tort liability they have incurred, because at least in this case the physical condition of the patient in question has noticeably deteriorated under their care.

It is enough to make you cry and to confirm that the doctors in the neurology department are criminally incompetent and that the Hospital Administrator needs to be fired.

http://www.childrenshospital.org/centers-and-services/programs/f-_-n/mitochondrial-program

quote:

Mitochondrial diseases are a large group of chronic disorders in which the body's cells have problems making energy. These disorders are relatively common.

They are also very complex, and can affect many different body systems in different combinations. As a result, a child with a mitochondrial disorder may be affected very differently than another child. Some patients' disease can be very serious, while others' may be stable and well-managed for many years.

Boston Children's Hospital's Mitochondrial Program is comprised of world experts with extensive experience diagnosing and treating children with suspected mitochondrial disorders. After a diagnosis is made, we provide the diverse expertise needed to evaluate and manage the various complications these children may face.

Here at Boston Children's, your child will be evaluated and treated by pediatric neurologist Irina Anselm, MD, who specializes in caring for children with mitochondrial diseases. Dr. Anselm works with experts from other specialties at Children's, including Metabolism, Cardiology, Genetics, Gastroenterology and Ophthalmology.

Each of these specialists has particular expertise in working with children who have mitochondrial disorders. Our doctors will work with you to develop a customized plan that manages and addresses your child's individual condition and symptoms, and we will follow your child closely throughout each stage of the treatment process.
snipt.

So the hospital has an entire program and staff now dedicated to a disease that they are on record as saying does NOT exist.

It's not that they do not exist. they definitely exist. but they are grossly over diagnosed. They are the trendy disease of the moment in some circles just like multiple chemical sensitivity was a few years back. I will point out that in all the coverage of this which specific condition she has is never mentioned and there is no such thing as just "mitochrondrial disease" that is an umbrella term for any disease involving a mutation of the DNA of the mitochondria. That could be something as mild as type 2 diabetes to all kinds of esoteric metabolic illnesses. So that generic statement does make me more than a tad suspicious.

quote:

This is a key point which stands out. It seems as if BCH and the Massachusetts child protection authorities are saying that the parents did something horribly wrong, yet they were ostensibly acting on the medical advice of their doctors in Connecticut. If the parents are guilty of "medical child abuse," then doesn't that also implicate the doctors at Tufts? Is this really a legal dispute, or is it more of a medical dispute between medical professionals with conflicting diagnoses?

My experience in dealing with the medical profession is that communication between doctors, hospitals, and other organizations within the medical community is oftentimes very poor. Even communication between departments within the same hospital/organization can be deficient. This may be by design, or it may be administrative incompetence; it's hard to tell.

Certainly, there wouldn't be enough information released to the public, since they can't say anything without authorization. But someone should be authorized to take charge and figure out just what in heck is going on here and make a ruling. I don't know what may be going on medically with her, but the idea of sticking her in a psych ward just stinks to high heaven. It's not exactly biscuits and gravy in places like that, and she's all alone with no contact with her family or friends? She's not even in her home state. Shouldn't it really be up the Connecticut authorities to make the determination here?

quote:

ORIGINAL: Owner59

Do "parents rights" cover "faith healing"?


http://www.huffingtonpost.com/tag/faith-healing-deaths


http://www.katu.com/politics/Bill-to-protect-children-of-faith-healers-in-Idaho-will-not-get-a-hearing-247401091.html

quote:

ORIGINAL: Aylee

quote:

ORIGINAL: Owner59

Do "parents rights" cover "faith healing"?


http://www.huffingtonpost.com/tag/faith-healing-deaths


http://www.katu.com/politics/Bill-to-protect-children-of-faith-healers-in-Idaho-will-not-get-a-hearing-247401091.html

Ya know Owner, I have never been able to answer that question well. I can see both sides of the issue and it is a difficult question.

Yes it should cover it. But, it is a wrong and unethical thing to do to a person that has not reached the age of consent. Or even St. Augustine's age of reason. Yet, that is me imposing my morality on another. (As an example of why that is also a wrong thing to do: I see abortion as infanticide by proxy. Are you comfortable with me imposing my morality about that on others?)

On the other hand, for public health reasons (immunizations and disease vectors) no it should not cover it.

I realize that under the First Amendment a parent should be allowed to make the call that spiritual health is more important that physical health.

It is a double edged sword and I am not sure that there is a good way to reconcile the two sides.

quote:

ORIGINAL: Aylee
Momma has the disease and has responded well to treatment. Older sister has the disease and has responded well to treatment. Younger sister. . . just wants something trendy?

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: Aylee
Momma has the disease and has responded well to treatment. Older sister has the disease and has responded well to treatment. Younger sister. . . just wants something trendy?

I found no claim that the mother is ill. The sister is and has an actual diagnosis which is absent in this case.

quote:

ORIGINAL: BamaD

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: Aylee
Momma has the disease and has responded well to treatment. Older sister has the disease and has responded well to treatment. Younger sister. . . just wants something trendy?

I found no claim that the mother is ill. The sister is and has an actual diagnosis which is absent in this case.

There was an actual diagnosis in her case as well but the "authorities" ignored that in favor of blaming the parents.

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: BamaD

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: Aylee
Momma has the disease and has responded well to treatment. Older sister has the disease and has responded well to treatment. Younger sister. . . just wants something trendy?

I found no claim that the mother is ill. The sister is and has an actual diagnosis which is absent in this case.

There was an actual diagnosis in her case as well but the "authorities" ignored that in favor of blaming the parents.

Nope. No muscle biopsy or any of the other tests that would provide a definitive diagnosis. That was one of the reasons the new doctors got concerned.

quote:

ORIGINAL: BamaD

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: BamaD

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: Aylee
Momma has the disease and has responded well to treatment. Older sister has the disease and has responded well to treatment. Younger sister. . . just wants something trendy?

I found no claim that the mother is ill. The sister is and has an actual diagnosis which is absent in this case.

There was an actual diagnosis in her case as well but the "authorities" ignored that in favor of blaming the parents.

Nope. No muscle biopsy or any of the other tests that would provide a definitive diagnosis. That was one of the reasons the new doctors got concerned.

You are saying that the doctor who may a documented diagnosis of the sister just declared her to have to same thing without taking any tests.
Does that make any sense to you?

quote:

ORIGINAL: BamaD

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: BamaD

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: Aylee
Momma has the disease and has responded well to treatment. Older sister has the disease and has responded well to treatment. Younger sister. . . just wants something trendy?

I found no claim that the mother is ill. The sister is and has an actual diagnosis which is absent in this case.

There was an actual diagnosis in her case as well but the "authorities" ignored that in favor of blaming the parents.

Nope. No muscle biopsy or any of the other tests that would provide a definitive diagnosis. That was one of the reasons the new doctors got concerned.

You are saying that the doctor who may a documented diagnosis of the sister just declared her to have to same thing without taking any tests.
Does that make any sense to you?

quote:

ORIGINAL: calamitysandra

quote:

ORIGINAL: BamaD

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: BamaD

quote:

ORIGINAL: DomKen

quote:

ORIGINAL: Aylee
Momma has the disease and has responded well to treatment. Older sister has the disease and has responded well to treatment. Younger sister. . . just wants something trendy?

I found no claim that the mother is ill. The sister is and has an actual diagnosis which is absent in this case.

There was an actual diagnosis in her case as well but the "authorities" ignored that in favor of blaming the parents.

Nope. No muscle biopsy or any of the other tests that would provide a definitive diagnosis. That was one of the reasons the new doctors got concerned.

You are saying that the doctor who may a documented diagnosis of the sister just declared her to have to same thing without taking any tests.
Does that make any sense to you?

No, he is saying that:

"Justina’s physicians at Tufts Medical Center had been treating her for this illness for about a year, saying she exhibited many of its symptoms, and were still in the midst of determining if she had a clear-cut case of this disorder."

Which is a quote from the article Kali linked.

At least I think that he is refering to this.

I am with Ken. There is not enough information to for an informed opinion. I would especially like to know why the courts have ruled against the parents.

But one thing is absolutely clear. An independent investigation needs to happen, so the girl can get the help she needs (whatever that might be) and start to heal.

quote:

ORIGINAL: fucktoyprincess

Kali, thanks for all the info and links.

As a general response to the overall thread, it is my understanding that there is no definitive test for mito - so I'm not sure how the sister has a definitive test result for it.