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(ABC News)   Tufts Medical Center says a teenager has mitochondrial disease. Boston Children's Hospital disagrees--by declaring the symptoms psychosomatic, taking her from her parents, and denying her any medical treatment except to say it's all in her head   (abcnews.go.com ) divider line
    More: Followup, mitochondrial disease, Tufts Medical Center, Children's Hospital Boston, foster care  
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8942 clicks; posted to Main » on 25 Feb 2014 at 6:47 PM (2 years ago)   |   Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2014-02-25 07:15:33 PM  

MyRandomName: cman: We are only hearing one side of the story

Before everyone goes apeshiat lets remember that

2 sets of doctors, 2 different opinions. Instead of state sanctioned kidnapping, how about a tiebreaker first.


Yeah, that was kind of my thought when i first started hearing about this case. What makes the 2nd doctor automatically correct?
 
2014-02-25 07:15:33 PM  

hardinparamedic: MyRandomName: So Tufts is a fake hospital to you. Got it.

Boston Children's Hospital is world renown for it's immunology, cancer, genetics, and metabolic disorder research and treatment team.

Tufts is renown for it's Pediatric Trauma history.


Quiet, you! It is more important for us to figure out which side Fox & the Republicans are on, and which side Obama & the Democrats are on.
 
2014-02-25 07:16:06 PM  
Sane mothers don't need to be wheeled out of a courtroom because they are upset.

This mom doesn't belong around children.
 
2014-02-25 07:16:14 PM  

NIXON YOU DOLT!!!!!: MyRandomName: Gag order should be illegal. What jury is being tainted?

None.  It's for the protection of the child's privacy, to prevent a kid from being the center of a media circus like this.


HIPPA stops the hospital from talking. a patient can talk about their own disorder until blue in the face. parents were legal guardians, they have the right to do so for their children. your reason for the gag order is quite silly.
 
2014-02-25 07:16:23 PM  

czetie: Does mitochondrial disease prevent her from using the Force?


No but she has smokers cough from smoking, brewers droop from drinking beer.
 
2014-02-25 07:17:06 PM  

Ow! That was my feelings!: Ah, here ya go, ftfa:

"The court really didn't accomplish much," said Mathew Staves of Liberty Counsel , a conservative organization that advocates for "religious freedom, the sanctity of life, and the family," who was at hearing.

//that should clear it up.


Not really. The family wants to treat their daughter medically at Tufts because they believe she has a mitochondrial disease. Boston Children's Hospital thinks it is a psychological condition and has kept the daughter from the parents. That kind of behavior does not really fit with the stereotypical conservative, religious person who thinks God will solve the issue.

The story is missing a lot of background facts. How long has the daughter been being treated by Tufts? Has she previously been sick or have their treatments not really helped? Some articles mention she had this diagnosed years ago and only went to Children's because of a severe case of the flu. Then while at Children's they diagnosed her with a psychological disorder that they believe was caused by the family. The daughter has now been in the hospital's custody for the past year and apparently the daughter has gotten worse.

Nothing really makes sense with the story of why Children's would keep this kid. Or not even get another opinion from another hospital in that entire time. It just seems very negligent of Children's to not go for a second opinion after a year of little improvement especially after a previous hospital had diagnosed her, treated her, and seemingly she had no issues. Another article mentioned UMass medical center may be given permission to take over treatment to defuse tensions.
 
Boe [TotalFark]
2014-02-25 07:18:08 PM  

TheBeastOfYuccaFlats: Rapmaster2000: Sounds like an episode of House.  I'm sure it's been said, but why does no one ever suspect House?  People have these crazy diseases and only House can fix them.  It's like Murder She Wrote.  Every time she comes to town somebody dies.

Who would continue to live in the town that Murder She Wrote lived in?  At least there was an explanation for why people continued to live in Sunnydale.


Don't EVEN get me started on Midsomer.  What a deathtrap.
 
2014-02-25 07:18:09 PM  

NIXON YOU DOLT!!!!!: MyRandomName: Gag order should be illegal. What jury is being tainted?

None.  It's for the protection of the child's privacy, to prevent a kid from being the center of a media circus like this.


About an hour ago I saw some cows wandering down the road.  Is your barn door open?

/not really YOU "your"
//speaking generally
 
2014-02-25 07:18:11 PM  

MyRandomName: HIPPA stops the hospital from talking. a patient can talk about their own disorder until blue in the face. parents were legal guardians, they have the right to do so for their children. your reason for the gag order is quite silly.


The courts cannot mandate a release of that patient's medical record to the general public so amateur internet Houses like you can determine what's wrong with the child. And the hospital cannot violate COBRA or HIPAA by doing so on it's own accord, and can only release what is confined with in the terms of a request for information from the parent or guardian, or what is subpoena by a court order.
 
2014-02-25 07:18:51 PM  
 
2014-02-25 07:19:14 PM  

hardinparamedic: MyRandomName: Mitochondrial disease doesn't have different symptoms based on age.

Which one? Do you even know what you're talking about?

MyRandomName: Basically your argument is Tuft Hospital is full of shiat doctors. Got it.

My argument is I am apt to believe a center world renown for metabolic disorders versus a center which does not specialize in it. Nothing more, nothing less. Stop putting words in my mouth and attributing them to me, ass.


That is the basis of your argument. Again, 2 sets of doctors, 2 opinions. Get a third. You dont get to pick and choose which doctor is to be trusted more. Medicine doesn't work that way. Get a third opinion. It would stop the whole mess fairly quickly, don't you think?

A 3rd independent analysis by a respected doctor would end the whole mess. Why is that not even a consideration in your book? This issue could have ended a year ago.
 
2014-02-25 07:19:36 PM  
Here's a story from the Boston Globe that features the doctor from tufts heavily. Pretty well written and in depth piece on what has been happening.

And here's a story from the Daily Fail that claims her 25 year old sister his also been diagnosed with mitochondrial disease.
 
2014-02-25 07:20:59 PM  

legion_of_doo: hardinparamedic: MyRandomName: So Tufts is a fake hospital to you. Got it.

Boston Children's Hospital is world renown for it's immunology, cancer, genetics, and metabolic disorder research and treatment team.

Tufts is renown for it's Pediatric Trauma history.

Quiet, you! It is more important for us to figure out which side Fox & the Republicans are on, and which side Obama & the Democrats are on.


Quite amazing that the only ones who have brought in politics are the ones hoping the state, and I guess liberalism, wins.

Ive only stated a third opinion is kind of due by now. Apparently that is a radical idea.
 
2014-02-25 07:22:57 PM  

MyRandomName: That is the basis of your argument. Again, 2 sets of doctors, 2 opinions. Get a third. You dont get to pick and choose which doctor is to be trusted more. Medicine doesn't work that way. Get a third opinion. It would stop the whole mess fairly quickly, don't you think?

A 3rd independent analysis by a respected doctor would end the whole mess. Why is that not even a consideration in your book? This issue could have ended a year ago.


it's a small point but I think what a lot of medical people are thinking is a "set of doctors" isn't really a thing. They have like 30 genetics folks at Boston Childrens, and literally hundreds of internal medicine attendings there. I'm sure first, second, third and fourth opinions have already been obtained. Munchhausen by proxy is a diagnosis of last resort for pediatricians.
 
2014-02-25 07:23:16 PM  
I guess my questions would be:

1. If this is a rare, genetic disorder with devastating consequences, wouldn't this child have exhibited those symptoms from childhood on?  It's not something that would just strike a year ago after the child was normal for 13 years, right?

2. Can't this be verified by genetic tests or some other tests?

3. Can they get a third opinion?

Seriously, just wondering these points, the article is shiat for information because of the gag order and the terrible writing.
 
2014-02-25 07:23:52 PM  

MyRandomName: That is the basis of your argument. Again, 2 sets of doctors, 2 opinions. Get a third. You dont get to pick and choose which doctor is to be trusted more. Medicine doesn't work that way. Get a third opinion. It would stop the whole mess fairly quickly, don't you think?

A 3rd independent analysis by a respected doctor would end the whole mess. Why is that not even a consideration in your book? This issue could have ended a year ago.


Stop putting words in my mouth, Ass. Second warning.

And medicine DOES work this way: a doctor who does not specialize in Metabolic disorders diagnosing and managing him/herself an utter zebra like a mitochondrial disease SHOULD bring about questions about the diagnosis and treatment from that doctor, instead of that doctor sending the patient out to a specialist who is trained in genetics or metabolic disorders. An Inborn Error of Metabolism like a mitochondrial disease is not something that is able to be diagnosed by your family pediatrician, nor is it something that is commonly encountered by them.

From what I understand about this case, Boston Childrens reported the suspected abuse because the child was found to have been "doctor shopped" among various pediatricians and ERs in the area, each time with a different diagnosis of a chronic disease, not just a mitochondrial disorder. (And yes, there ARE different s/s of mitochondrial disorders. It is NOT just one disease)
 
2014-02-25 07:25:19 PM  

plewis: czetie: Does mitochondrial disease prevent her from using the Force?

No but she has smokers cough from smoking, brewers droop from drinking beer.


I don't know how you came to get the Bette Davis knees, but worst of all young man you've got Industrial Disease.
 
2014-02-25 07:25:24 PM  

beaverfetus: it's a small point but I think what a lot of medical people are thinking is a "set of doctors" isn't really a thing. They have like 30 genetics folks at Boston Childrens, and literally hundreds of internal medicine attendings there. I'm sure first, second, third and fourth opinions have already been obtained. Munchhausen by proxy is a diagnosis of last resort for pediatricians.


Shh. Don't let it slip that there are entire departments in these Children's Hospitals that specialize in the treatment of these disorders, not just one doctor. He might have to go with a new straw to grasp at.
 
2014-02-25 07:28:47 PM  

bborchar: I guess my questions would be:

1. If this is a rare, genetic disorder with devastating consequences, wouldn't this child have exhibited those symptoms from childhood on?  It's not something that would just strike a year ago after the child was normal for 13 years, right?

2. Can't this be verified by genetic tests or some other tests?

3. Can they get a third opinion?

Seriously, just wondering these points, the article is shiat for information because of the gag order and the terrible writing.


Yes
Yes
and Yes.

All have probably been done. Likely the only reason the parents dont look like the child abusers they are is because HIPAA is protecting them by keeping it all secret.

There's a reason they're battling this in the public using emotional appeals. They mistreated their daughter, giving her drugs and undergoing procedures for 11 months at Tufts.
 
2014-02-25 07:29:12 PM  

justtray: Over in two.

I'm always siding with the Doctors barring facts that prove otherwise.

On one hand we have people professionally educated and trained to diagnose disease. On the other we have a woman that faints in a court room, who is simply convinced her child has a very rare genetic disease, based on.... things.


You know, I don't know the full truth of this story and there are some brilliant minds out there in the field of medicine, but all you have to do is watch two or three episodes of "Monsters Inside Me" or "Mystery Diagnosis" or, say talk to people walking down the street to see and hear endless stories of men and women misdiagnosed or undiagnosed with life threatening diseases all day.  Hell, my aunt had a surgical sponge left in her spinal column for ten years.  Just having professional training doesn't mean you're flawless and there's so much information open to the average person today that it's easy to read up on symptoms and treatments for diseases yourself.
 
2014-02-25 07:30:08 PM  

ActionJoe: apparently the daughter has gotten worse.


The only ones saying the daughter has gotten worse is the parents, who have no reason to say she's gotten any better, obviously.

Given that HIPAA (two "A"s, one "P", folks) prevents the hospital from discussing the details of treatment to the public, it's pretty clear that this article was sourced almost entirely from the family's claims.  Not really good reporting.

The amount of obvious hyperbole on the part of the parents and their legal team is impressive, though.  Given their description of supervised visits, I'm surprised they didn't an in a "detail" of how the DFS supervisors were armed (there were a half dozen DFS employees at every visit?  really?  social services departments are notoriously understaffed, no one is sending more than one or two, max, to these visits) with big scary guns and stared at them menacingly while summoning demons, who were tasked with keeping the child sick.
 
2014-02-25 07:32:19 PM  

FloridaFarkTag: The older daughter also has a medically verified case of mitochondrial disorder....so I doubt the parents are making anything up

This story has been out for a year now...the family pretty much just ignored the gag order...I do not blame them

This is a kidnapping, plain and simple. This family has shown much restraint. I think a lot of folks having a hospital kidnap their child would be capping some hospital folks


This happened with an infant last year didn't it?
 
2014-02-25 07:32:31 PM  
Glad you fools managed to turn this into a red vs blue affair, even though it has nothing to do with your politics.
 
2014-02-25 07:33:02 PM  

justtray: Over in two.

I'm always siding with the Doctors barring facts that prove otherwise.

On one hand we have people professionally educated and trained to diagnose disease. On the other we have a woman that faints in a court room, who is simply convinced her child has a very rare genetic disease, based on.... things.


WHICH doctors?

We have the doctors at Tufts Medical Center who back the claim of mitochondrial disease, and we have the doctors at Boston Childrens who back their own theory of hypochondria. Which doctor should we trust? The doctor chosen by the family, or the doctor who performed emergency care?
 
2014-02-25 07:33:52 PM  

justtray: bborchar: I guess my questions would be:

1. If this is a rare, genetic disorder with devastating consequences, wouldn't this child have exhibited those symptoms from childhood on?  It's not something that would just strike a year ago after the child was normal for 13 years, right?

2. Can't this be verified by genetic tests or some other tests?

3. Can they get a third opinion?

Seriously, just wondering these points, the article is shiat for information because of the gag order and the terrible writing.

Yes
Yes
and Yes.

All have probably been done. Likely the only reason the parents dont look like the child abusers they are is because HIPAA is protecting them by keeping it all secret.

There's a reason they're battling this in the public using emotional appeals. They mistreated their daughter, giving her drugs and undergoing procedures for 11 months at Tufts.


Thanks.  I figured as much, but I don't like to make assumptions without facts...which this article is lacking enormously.
 
2014-02-25 07:34:50 PM  

hardinparamedic: From what I understand about this case, Boston Childrens reported the suspected abuse because the child was found to have been "doctor shopped" among various pediatricians and ERs in the area, each time with a different diagnosis of a chronic disease, not just a mitochondrial disorder. (And yes, there ARE different s/s of mitochondrial disorders. It is NOT just one disease)


According to the Boston globe article I linked above, you're wrong.

The doctor at Tuft's, Korson, referred her to a Boston Children's doctor for gastrointestinal problems.

Also, Korson happens to be the "chief of metabolism" at Tufts, whatever that means and for whatever it's worth.
 
2014-02-25 07:35:06 PM  

justtray: There's a reason they're battling this in the public using emotional appeals. They mistreated their daughter, giving her drugs and undergoing procedures for 11 months at Tufts.


I'm willing to bet this is the case, actually. We had a case locally where a grandmother was giving her granddaughter low doses of hydrocarbons in her food to lower her WBC count and make her look like she had leukemia to solicit donations from people. She was only caught because they caught her spiking her food tray in the hospital.

Munchousen's By Proxy is a last-resort, exclusionary diagnosis made after ALL OTHER diseases and issues have been ruled out. I'm more than willing to bet the physician ordered a genetics assay and blood work which showed that she didn't have the disease. And there is very little chance this is a single doctor to doctor pissing contest. The doctors don't do the reporting, they go to social work typically and social work investigates and makes the report. There is no way the hospital would stand behind this doctor's department and team if there wasn't evidence to back him/her up.

teenytinycornteeth: Just having professional training doesn't mean you're flawless and there's so much information open to the average person today that it's easy to read up on symptoms and treatments for diseases yourself.


The average person lacks the basic educational foundation and knowledge of medicine to put that together. I can take the symptoms of flu to WebMD and plug them in.  That doesn't mean I have pancreatic cancer.
 
2014-02-25 07:35:37 PM  

MyRandomName: hardinparamedic: MyRandomName: Mitochondrial disease doesn't have different symptoms based on age.

Which one? Do you even know what you're talking about?

MyRandomName: Basically your argument is Tuft Hospital is full of shiat doctors. Got it.

My argument is I am apt to believe a center world renown for metabolic disorders versus a center which does not specialize in it. Nothing more, nothing less. Stop putting words in my mouth and attributing them to me, ass.

That is the basis of your argument. Again, 2 sets of doctors, 2 opinions. Get a third. You dont get to pick and choose which doctor is to be trusted more. Medicine doesn't work that way. Get a third opinion. It would stop the whole mess fairly quickly, don't you think?

A 3rd independent analysis by a respected doctor would end the whole mess. Why is that not even a consideration in your book? This issue could have ended a year ago.


You know, I think this may be the first time I've ever agreed with a post of yours.  I guess it just goes to show that it's better not to put people you disagree with on ignore, because they may surprise you someday.


MyRandomName:Quite amazing that the only ones who have brought in politics are the ones hoping the state, and I guess liberalism, wins.

Aaaaaaaaand we're back to normal again, I see.  Carry on.
 
2014-02-25 07:38:06 PM  
By the way, those of you claiming Boston Children's Hospital wins over Tufts because "fark you they do"...

It's not like BCH has ever, EVER, been guilty of malpractice.

http://www.boston.com/news/health/articles/2009/12/19/jury_finds_2_d oc tors_at_childrens_hospital_caused_boys_death/

BCH is infallible apparently, but Tufts is wrong.

Instead of a third opinion you are advocating for the State to be the Medical Doctor of the child as they are the ones choosing which opinion is valid and which is not.

Instead of the state deciding which opinion is valid, let a third respected doctor to do so.  The state has no medical training to make the necessary decision on which set of doctors is right.
 
2014-02-25 07:39:52 PM  

Nix Nightbird: their own theory of hypochondria


I don't think the term "hypochondria" appears once in the entire article.  Furthermore, I don't think hypochondria means what you seem to think it means.
 
2014-02-25 07:40:14 PM  

Elegy: According to the Boston globe article I linked above, you're wrong.

The doctor at Tuft's, Korson, referred her to a Boston Children's doctor for gastrointestinal problems.

Also, Korson happens to be the "chief of metabolism" at Tufts, whatever that means and for whatever it's worth.


From The Article You Linked: In short order, a team of different Children's doctors had disputed Korson's working diagnosis of mitochondrial disease for Justina and accused her parents of medical child abuse.

She was never definitively diagnosed. That term means "We are pretty sure that's what it is, but let's ask someone else what they think"
 
2014-02-25 07:41:09 PM  

MyRandomName: By the way, those of you claiming Boston Children's Hospital wins over Tufts because "fark you they do"...

It's not like BCH has ever, EVER, been guilty of malpractice.

http://www.boston.com/news/health/articles/2009/12/19/jury_finds_2_d oc tors_at_childrens_hospital_caused_boys_death/

BCH is infallible apparently, but Tufts is wrong.

Instead of a third opinion you are advocating for the State to be the Medical Doctor of the child as they are the ones choosing which opinion is valid and which is not.

Instead of the state deciding which opinion is valid, let a third respected doctor to do so.  The state has no medical training to make the necessary decision on which set of doctors is right.


Show me a hospital of any moderate-to-large size that has never had a malpractice suit won against them and I'll show you some green cheese from the moon.
 
2014-02-25 07:41:32 PM  

Jument: czetie: Does mitochondrial disease prevent her from using the Force?

I was going to say "why doesn't she just force choke her way out of it"...


You know who else had a rare cellular disorder? Nope, not him. Nope, wrong again. Maybe this will help:

static3.wikia.nocookie.net

/Alma Wade is one of those truly scary characters you will always remember.
 
2014-02-25 07:41:55 PM  

MyRandomName: It's not like BCH has ever, EVER, been guilty of malpractice.


Which no one ever said.

MyRandomName: BCH is infallible apparently, but Tufts is wrong.


Which no one ever said.

MyRandomName: Instead of a third opinion you are advocating for the State to be the Medical Doctor of the child as they are the ones choosing which opinion is valid and which is not.


Which no one has ever said. The state consults experts in the field of metabolic disorders.

MyRandomName: Instead of the state deciding which opinion is valid, let a third respected doctor to do so.  The state has no medical training to make the necessary decision on which set of doctors is right.


Fine. Let's send her to Children's Hospital of Philadelphia. Or St. Louis. Or UCLA.
 
2014-02-25 07:45:23 PM  

TheBeastOfYuccaFlats: ActionJoe: apparently the daughter has gotten worse.

The only ones saying the daughter has gotten worse is the parents, who have no reason to say she's gotten any better, obviously.

Given that HIPAA (two "A"s, one "P", folks) prevents the hospital from discussing the details of treatment to the public, it's pretty clear that this article was sourced almost entirely from the family's claims.  Not really good reporting.

The amount of obvious hyperbole on the part of the parents and their legal team is impressive, though.  Given their description of supervised visits, I'm surprised they didn't an in a "detail" of how the DFS supervisors were armed (there were a half dozen DFS employees at every visit?  really?  social services departments are notoriously understaffed, no one is sending more than one or two, max, to these visits) with big scary guns and stared at them menacingly while summoning demons, who were tasked with keeping the child sick.


This.

You have to wonder why the family is bringing in "additional first amendment lawyers" to impose gag orders on anyone and everyone involved in this case.  Anything that has to do with their child's diagnosis would be protected by HIPAA.  What are they trying to keep from getting out?
 
2014-02-25 07:46:08 PM  

MyRandomName: By the way, those of you claiming Boston Children's Hospital wins over Tufts because "fark you they do"...

It's not like BCH has ever, EVER, been guilty of malpractice.

http://www.boston.com/news/health/articles/2009/12/19/jury_finds_2_d oc tors_at_childrens_hospital_caused_boys_death/

BCH is infallible apparently, but Tufts is wrong.

Instead of a third opinion you are advocating for the State to be the Medical Doctor of the child as they are the ones choosing which opinion is valid and which is not.

Instead of the state deciding which opinion is valid, let a third respected doctor to do so.  The state has no medical training to make the necessary decision on which set of doctors is right.


Also Boston Children didn't make the decision to take the child away.  The courts do that, and these cases (all abuse cases) are always reviewed by an independent physician. The doctors simply refer these cases to child-protective services and make their case to them. Your idea that this was a unilateral decision that was only reviewed by 2 physicians or "sets of physicians" isn't correct.
 
2014-02-25 07:47:30 PM  
2 bits.

Is the disorder genetic?

Could she be a hypochondriac to be getting attention from mommie and her older sister?
 
2014-02-25 07:50:23 PM  

duffblue: Glad you fools managed to turn this into a red vs blue affair, even though it has nothing to do with your politics.


The thing is, the kid isnt dead or dying (any more than us living are), there are law talking guys involved, and the doctors in the case cant talk about it... so the joy of it is the red versus blue.

At least until this farked up shiat gets unfarked.
 
2014-02-25 07:50:55 PM  

Shirley Ujest: 2 bits.

Is the disorder genetic?

Could she be a hypochondriac to be getting attention from mommie and her older sister?


Yes, it is genetic, but the diagnosis of which specific mitochondrial disorder requires extensive testing and an experienced clinician who specializes in them. It's not as simple as a chromosomal analysis.

As for hypochondriac, no. They actually diagnosed her with a somatiform disorder at Boston Childrens after their team examined her and worked her up. Tufts only gave her a working diagnosis, but no definitive diagnosis.

As a side note, Boston Children's IEOM team is about three times the size of Tufts.
 
2014-02-25 07:51:48 PM  
Somatoform disorder
 
2014-02-25 07:52:20 PM  

bborchar: justtray: bborchar: I guess my questions would be:

1. If this is a rare, genetic disorder with devastating consequences, wouldn't this child have exhibited those symptoms from childhood on?  It's not something that would just strike a year ago after the child was normal for 13 years, right?

2. Can't this be verified by genetic tests or some other tests?

3. Can they get a third opinion?

Seriously, just wondering these points, the article is shiat for information because of the gag order and the terrible writing.

Yes
Yes
and Yes.

All have probably been done. Likely the only reason the parents dont look like the child abusers they are is because HIPAA is protecting them by keeping it all secret.

There's a reason they're battling this in the public using emotional appeals. They mistreated their daughter, giving her drugs and undergoing procedures for 11 months at Tufts.

Thanks.  I figured as much, but I don't like to make assumptions without facts...which this article is lacking enormously.


I just read another article about this case and in this one the parents said the biopsy was done, the patents claim the test results "were favorable" for a diagnoses for mitrchondrial disease.

The parents are claiming the doctor withheld the results.

so I'm not sure how they could know the results if the doctor allegedly withheld those results.

either bad reporting or something is off with the whole story
 
2014-02-25 07:52:30 PM  

BafflerMeal: Somatoform disorder


Thanks
 
2014-02-25 07:57:27 PM  

hardinparamedic: BafflerMeal: Somatoform disorder

Thanks


Wasn't correcting your spelling (it's the inet and sech).  Just oddly timely.
 
2014-02-25 07:57:33 PM  
There's a Parasite Eve joke here, but I can't seem to find it.

/3rd Birthday can DIAF, by the way
 
2014-02-25 07:58:55 PM  
How about we get a second opinion before you steal the kid?
 
2014-02-25 08:00:40 PM  

omnimancer28: TheBeastOfYuccaFlats: ActionJoe: apparently the daughter has gotten worse.

The only ones saying the daughter has gotten worse is the parents, who have no reason to say she's gotten any better, obviously.

Given that HIPAA (two "A"s, one "P", folks) prevents the hospital from discussing the details of treatment to the public, it's pretty clear that this article was sourced almost entirely from the family's claims.  Not really good reporting.

The amount of obvious hyperbole on the part of the parents and their legal team is impressive, though.  Given their description of supervised visits, I'm surprised they didn't an in a "detail" of how the DFS supervisors were armed (there were a half dozen DFS employees at every visit?  really?  social services departments are notoriously understaffed, no one is sending more than one or two, max, to these visits) with big scary guns and stared at them menacingly while summoning demons, who were tasked with keeping the child sick.

This.

You have to wonder why the family is bringing in "additional first amendment lawyers" to impose gag orders on anyone and everyone involved in this case.  Anything that has to do with their child's diagnosis would be protected by HIPAA.  What are they trying to keep from getting out?


you got that one backwards, the Family is bringing in First Amendment lawyers to fight AGAINST the gag order the judge put on the closed door case. re-read the article. And according to the article the judge put an earlier gag order on the case as well that the parents broke by contacting the news when this first started
 
2014-02-25 08:02:56 PM  

433: [arlingtonwa.org image 315x380]

pretty much this

 
2014-02-25 08:03:57 PM  
Just to throw some gasoline on the fire/ supply some food for thought:

After Crohn's disease was described at Mount Sinai Hospital by Dr. Crohn, many Crohn's suffers were found to be currently admitted to inpatient psych wards for unexplained (presumed at the time to be somatiform) abdominal pain.

/chick is still probably bonkers
//not as bonkers as her mom
 
2014-02-25 08:04:45 PM  

hardinparamedic: Elegy: According to the Boston globe article I linked above, you're wrong.

The doctor at Tuft's, Korson, referred her to a Boston Children's doctor for gastrointestinal problems.

Also, Korson happens to be the "chief of metabolism" at Tufts, whatever that means and for whatever it's worth.

From The Article You Linked: In short order, a team of different Children's doctors had disputed Korson's working diagnosis of mitochondrial disease for Justina and accused her parents of medical child abuse.

She was never definitively diagnosed. That term means "We are pretty sure that's what it is, but let's ask someone else what they think"


No, I was talking about your accusation that they were doctor shopping. The article I links notes that a social worker wrote a report that claimed a doctor at Boston Children's thoughtthey were doctor shopping.

But they technically weren't - they were referred to Boston Children's by their primary care physician, Korson - and the accusation was heresy.

I don't doubt that these people - the mother in particular - are extremely difficult to deal with and do themselves no favors with the people in the system.

But what are you going to do with things like this:

Yet [an internal BCH investigation on the case] cknowledged some contradictions in her care at Children's. For instance, early on the staff had been suspicious of Linda's demand that her daughter get a temporary feeding tube in order to increase her nourishment. But immediately after the parents lost custody, the report noted, Children's had determined that the feeding tube was indeed medically necessary and Justina was given one.

?

Sounds like the medical staff hasn't liked the mother from the outset. She sounds like a holy farking terror to anyone not her kids.

The girl herself wants to go home - I think it should be her choice anyway, at 15 she is old enough to have a voice in her own care.

It also doesn't sound like what the mother and doctor are suggesting that that far outside the realm of possibility, especially since she has an older sister with the same diagnosis from the same doctor. I suppose the doctor could be crazy, too.
 
2014-02-25 08:07:46 PM  

justtray: Over in two.

I'm always siding with the Doctors barring facts that prove otherwise.

On one hand we have people professionally educated and trained to diagnose disease. On the other we have a woman that faints in a court room, who is simply convinced her child has a very rare genetic disease, based on.... things.

the medical opinions of other people who are professionally educated and trained to diagnose disease at another medical center.

FTFY
 
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