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(Hartford Courant)   Parents: "Our daughter is sick, please help us." Boston Medical Center: "Go away, she's ours now"   (courant.com) divider line 89
    More: Followup, Boston Medical Center, West Hartford, mitochondrial disease, loss of appetite, Children's Hospital Boston, psychiatric hospitals, Massachusetts Department of Public Health, Department of Children  
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15932 clicks; posted to Main » on 09 Jan 2014 at 10:53 PM (29 weeks ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



89 Comments   (+0 »)
   
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2014-01-09 10:56:17 PM
Trolltastic headlines with 0 comments get greened?

It happens more often than you think.
 
2014-01-09 10:57:03 PM
Wasn't this posted about 3 months ago? I think it may have been a repeat then too...
 
2014-01-09 11:02:45 PM
Question I have is if this was a real disease, wouldn't cessation of the original treatment have already shown her relapsing?

Seems that BMC may be on to something, if the treatment for the psychological issue is keeping the symptoms at bay.

Would not the amount of time have shown some changes if this was physical?
 
2014-01-09 11:03:17 PM
Is this the same one, or a new one?
 
2014-01-09 11:05:27 PM
"Barry Pollack, a Boston attorney for a woman whose daughter was kept in Bader 5 for several weeks, recently wrote a letter to the Massachusetts Department of Public Health demanding that the psychiatric ward be closed. "

Justina Justina bo-bina,
Banana mana fo-fina,
Fi fi momina,
Justina!
 
2014-01-09 11:05:56 PM
I grow weary of these ObamaCare stories. We get it. ObamaCare sucks.

Dnrtfa.
 
2014-01-09 11:08:36 PM

i.imgur.com

 
2014-01-09 11:13:07 PM

itsaidwhat: I grow weary of these ObamaCare stories. We get it. ObamaCare sucks.

Dnrtfa.


Not exactly sure how you got obamacare out of this one, but all power to ya.
 
2014-01-09 11:13:36 PM

BBtB: Wasn't this posted about 3 months ago? I think it may have been a repeat then too...


The linked story is a current update to the previous story. The previous story was hosted at a "natural health" website, the same sort of website that eschews effective and tested treatments and vaccines in favour of holistic and homeopathic treatment.
 
2014-01-09 11:14:45 PM

itsaidwhat: I grow weary of these ObamaCare stories. We get it. ObamaCare sucks.

Dnrtfa.


Well, that explains why you think it has something to do with Obamacare.
 
2014-01-09 11:15:00 PM
Damn, these reads like something out of a 50's horror movie, getting thrown in the looney bin by evil psychiatrists...
 
2014-01-09 11:19:44 PM

Marcus Aurelius: Is this the same one, or a new one?


This is like the 5th or so time this hospital has done this in the last year.  I'd be wary about stepping foot inside their facility.
 
2014-01-09 11:26:20 PM

penthesilea: Marcus Aurelius: Is this the same one, or a new one?

This is like the 5th or so time this hospital has done this in the last year.  I'd be wary about stepping foot inside their facility.


You can check out any time you like but you can never leave.
 
2014-01-09 11:28:46 PM

grumpfuff: Trolltastic headlines with 0 comments get greened?

It happens more often than you think.


This and this only. Subby is a pathetic biatch.
 
2014-01-09 11:31:04 PM

Slartibartfaster: itsaidwhat: I grow weary of these ObamaCare stories. We get it. ObamaCare sucks.

Dnrtfa.

Not exactly sure how you got obamacare out of this one, but all power to ya.


Clearly Bush administration policies led to this sad state of affairs.
 
2014-01-09 11:31:30 PM
jeeze, farkers who don't engage brains before putting mouths in gear.
 
2014-01-09 11:34:55 PM
what we've got here is a failure to communicate
 
2014-01-09 11:38:32 PM
This is a downfall in Mass. Parents are guilty until proven innocent if any allegation is made of them.
 
2014-01-09 11:40:26 PM
I don't think I've ever heard stories of a good mental ward, and citing information from Fox gives leaves me stuck in the middle about both parties. Why does all this depressing stuff come up right before I plan to sleep?

/Fark the mental health care system, it needs to be revamped and improved
//Lost some friends because of it, didn't help the ones who came back.
 
2014-01-09 11:42:32 PM

Virtual Pariah: Question I have is if this was a real disease, wouldn't cessation of the original treatment have already shown her relapsing?

Seems that BMC may be on to something, if the treatment for the psychological issue is keeping the symptoms at bay.

Would not the amount of time have shown some changes if this was physical?


Treatment seems pretty limited http://en.wikipedia.org/wiki/Mitochondrial_disease
The better question is if the psychological treatment isn't effective, would the dr.s at BMC change their diagnoses? I'm thinking the answer is no...

The great thing about a diagnoses of exclusion like somatoform disorder for a dr. is that its hard to prove your diagnoses is wrong, as proving a negative tends to be.
 
2014-01-09 11:44:19 PM
Headline: ZOMG teh hospitals is stealing our babbehs for no reason at all!
Article, albeit a bit buried:

"The definition is when a child has received unnecessary and potentially harmful health care at the instigation of caretakers," Roesler said this week...
Dr. Jurriaan Peters, a neurologist at Boston Children's, wrote that he was "concerned about the distribution of care across multiple providers in different facilities and across state lines, the number of invasive procedures Justina has been submitted to."
According to Peters in another report, Justina has had an exploratory laparotomy, an apendectomy, several colonoscopies and a cecostomy tube placement.


Sounds like there's two sides to the story, at the very least.
 
2014-01-09 11:46:28 PM
Anyone who's ever played Parasite Eve knows exactly what is going on here.
 
2014-01-09 11:47:11 PM
Parents: Our daughter has a weird disorder with nebulous symptoms necessitating multiple invasive surgeries, and our doctor agrees.

Boston Children's: Your daughter is the victim of medical child abuse, i.e. we think you're having all these procedures done on her because you're torturing her for your own sick needs.

And since both conditions are real, whose to say what's happening here?
 
2014-01-09 11:50:57 PM

Virtual Pariah: Question I have is if this was a real disease, wouldn't cessation of the original treatment have already shown her relapsing?

Seems that BMC may be on to something, if the treatment for the psychological issue is keeping the symptoms at bay.

Would not the amount of time have shown some changes if this was physical?


Yeah, but then the parents wouldn't have an excuse to keep the child on a weird diet.  I'm guessing this has something to do with them holding some kind of bizarre magical beliefs about nutrition that are not exactly supported by science.
 
2014-01-09 11:53:00 PM
The obvious solution is to cut her in half.
 
2014-01-09 11:58:16 PM
All of the court procedings are under a gag order. The media, having no solid information, is just speculating. What we know for sure is that there's a LOT more to this story.
 
2014-01-10 12:01:03 AM
This is just bizarre to me. If this girl's symptoms are psychosomatic, wouldn't any tests show they were? I mean if she has an infection, blood samples would show signs of infection (WBCs), and whatnot. I mean we have so many diagnostic tools, and doctors have to sign off on them. If doctors do not think she needs said treatments -- then they're obligated not to undergo them, regardless of what the parents desire.

At the same time, I've never heard of these disorders, so I'm pretty ignorant to this particular situation.

It just seems bizarre that with all the diagnostic tests we run on other people that there would be doctors and nurses out there willing to disobey the hippocratic oath just because the parents say so. It more or less throws the entire medical education system out the window for the sake of parents being able to treat their children like property to do with as they please.
 
2014-01-10 12:05:51 AM

Gyrfalcon: Parents: Our daughter has a weird disorder with nebulous symptoms necessitating multiple invasive surgeries, and our doctor agrees.

Boston Children's: Your daughter is the victim of medical child abuse, i.e. we think you're having all these procedures done on her because you're torturing her for your own sick needs.

And since both conditions are real, whose to say what's happening here?


Just because one party is wrong doesn't make the other party right.

Hitler fought Stalin.
 
2014-01-10 12:11:21 AM

Gyrfalcon: Parents: Our daughter has a weird disorder with nebulous symptoms necessitating multiple invasive surgeries, and our doctor agrees.

Boston Children's: Your daughter is the victim of medical child abuse, i.e. we think you're having all these procedures done on her because you're torturing her for your own sick needs.

And since both conditions are real, whose to say what's happening here?


The parents.  Every time.

There should be due diligence in investigating the child's health and care by whatever organizations either party chooses; but if there is differing legitimate opinions. the decision should be with the parents.

The worst possible outcome is the state makes the wrong decision for the child, and that scenario should be avoided so strenuously that any margin for error should favor the parents as well.
 
2014-01-10 12:15:14 AM

GBmanNC: Virtual Pariah: Question I have is if this was a real disease, wouldn't cessation of the original treatment have already shown her relapsing?

Seems that BMC may be on to something, if the treatment for the psychological issue is keeping the symptoms at bay.

Would not the amount of time have shown some changes if this was physical?

Treatment seems pretty limited http://en.wikipedia.org/wiki/Mitochondrial_disease
The better question is if the psychological treatment isn't effective, would the dr.s at BMC change their diagnoses? I'm thinking the answer is no...

The great thing about a diagnoses of exclusion like somatoform disorder for a dr. is that its hard to prove your diagnoses is wrong, as proving a negative tends to be.


That's why somatoform disorders are diagnosed by exclusion, e.g. test results for real stuff turn up negative.
 
2014-01-10 12:23:29 AM
Mitochondrial disorders cover a wide swathe of symptoms, and often have a notoriously "nebulous" definition.  Even children with negative muscle biopsies can be diagnosed as having a mitochondrial disorder.

Children with definite mitochondrial disorders often suffer from severe weakness, low blood sugar, seizures, invasive infections, developmental delay, temperature instability and a variety of other symptoms.

Because mitochondrial disorders don't alway have a definitive positive/negative test result upon which doctors and parents can rest the diagnosis, some children get suck in the "in between" area.

In some cases, parents want to believe their children have something wrong, and they hang on to a diagnosis of presumed "mitochondrial disorder," even though their child may be normal.  In these cases, no one can really prove or disprove that the child has a mitochondrial disorder.  Sometimes, these children are subject to needless medical procedures, including placement of permanent IV lines for overnight IV infusions of glucose, though not really needed.  In other cases, these measures are warranted.

In other cases, children truly have a disorder, and can become very sick, very quickly.

Don't know about this case to really put in an opinion, but wanted to shed some light onto mitochondrial disorders.
 
2014-01-10 12:29:22 AM

Virtual Pariah: Question I have is if this was a real disease, wouldn't cessation of the original treatment have already shown her relapsing?

Seems that BMC may be on to something, if the treatment for the psychological issue is keeping the symptoms at bay.

Would not the amount of time have shown some changes if this was physical?


I think the last time around there was an article (but not the stupid naturopath one) that said that her symptoms worsened after interaction with her parents on their visits.


Weatherkiss: If this girl's symptoms are psychosomatic, wouldn't any tests show they were?


A lot of medical conditions have no tests that can objectively confirm them, the diagnosis is based on a cluster of symptoms.  That's why I always laugh when people complain about psychiatry being bullshiat guesswork, because "medicine" is frequently not a hell of a lot better.

This girl's symptoms are "weakness, headaches, and abdominal pain".  There is pretty much no objective test to confirm these symptoms exist.  Even muscle weakness can be deliberately faked (malingering, factitious disorder) or a subconscious affectation (somatoform disorder).  The fakers do usually slip up when they're distracted, though.

Usually the first treatment for people with these symptoms would be to give them an anti-psychotic or sub-clinical dose of antidepressant (Amitriptyline, usually).  Even when the pain is objectively "real" (i.e. one caused by a provably damaged nerve) these usually reduce it because mood affects our experience of pain.  But frequently these symptoms are the physical manifestation of an undiagnosed anxiety or depressive disorder.
 
2014-01-10 12:37:00 AM

LoneWolf343: GBmanNC: Virtual Pariah: Question I have is if this was a real disease, wouldn't cessation of the original treatment have already shown her relapsing?

Seems that BMC may be on to something, if the treatment for the psychological issue is keeping the symptoms at bay.

Would not the amount of time have shown some changes if this was physical?

Treatment seems pretty limited http://en.wikipedia.org/wiki/Mitochondrial_disease
The better question is if the psychological treatment isn't effective, would the dr.s at BMC change their diagnoses? I'm thinking the answer is no...

The great thing about a diagnoses of exclusion like somatoform disorder for a dr. is that its hard to prove your diagnoses is wrong, as proving a negative tends to be.

That's why somatoform disorders are diagnosed by exclusion, e.g. test results for real stuff turn up negative.


...Right, that is my critique, that diagnoses of exclusions exist at all.
There are far too many scenarios where test results come up negative, having a default diagnoses that automatically gets applied (especially one as damaging as somatoform disorder, good luck getting believed for any future medical issues) is bad for patients, lazy for doctors, and retards our growth of medical knowledge.
 
2014-01-10 12:37:15 AM

Virtual Pariah: Question I have is if this was a real disease, wouldn't cessation of the original treatment have already shown her relapsing?

Seems that BMC may be on to something, if the treatment for the psychological issue is keeping the symptoms at bay.

Would not the amount of time have shown some changes if this was physical?



go a step further
The Pelletiers are allowed a single, one-hour visit a week with Justina and a 20-minute phone conversation once a week.

WHAT if that contact continues to cause the psychological problems?
HONEY, you are sick and DYING, THEY ARE KILLING YOU HERE!!!!

nightmare no matter what
 
2014-01-10 12:38:24 AM
I have a child with special needs. Some of those needs overlap with those of children who have mitochondrial disease, so I spend a lot of time with mito parents. The procedures they described (except for the appendectomy, which is super common) are consistent with mito. It is also very common to have a clinical, but not genetic diagnosis of the condition because frankly, there are a lot of things that can go wrong with a human being that you just sort of lump together as one condition. It's not uncommon to have one doctor tell you something is wrong and another doctor telling you that nothing is wrong based on the exact same test results. All you can do as a parent is advocate for your child. It is very hard to find that balance between wanting answers and not wanting to look like you want more procedures to be done. I think most parents who have children with special needs are very aware of the scrutiny they are under, and for that reason it is not a good idea to go around looking for different doctors. The downside to that is, you might get stuck with a bad doctor that overlooks or downplays conditions they don't have experience with.

I have a deep resentment towards parents with munchausen by proxy. Not only are they child abusers, but they make it difficult, and at times impossible, for legitimately ill children to find sympathetic and unbiased medical care. The biggest thing I see with the case in reference, is that the girl is quite old, not only to be newly diagnosed with mitochondrial disease (most people I know have children who are seriously disabled as infants, and many of those children die as toddlers), but she is pretty old to be put into a mental ward for nearly a year if nothing was wrong with her. Laws have been changed so that people do not get committed against their will. I also happen to have legal custody of a teenage relative that lives in a psychiatric facility and they made it very clear to me that the patient has the right to leave at any time. Just because the parents lost custody does not mean the girl does not have the right to refuse treatment.

So I guess that leaves me back at square one. Is the child mentally ill?
 
2014-01-10 12:42:10 AM

Frederick: Gyrfalcon: Parents: Our daughter has a weird disorder with nebulous symptoms necessitating multiple invasive surgeries, and our doctor agrees.

Boston Children's: Your daughter is the victim of medical child abuse, i.e. we think you're having all these procedures done on her because you're torturing her for your own sick needs.

And since both conditions are real, whose to say what's happening here?

The parents.  Every time.

There should be due diligence in investigating the child's health and care by whatever organizations either party chooses; but if there is differing legitimate opinions. the decision should be with the parents.

The worst possible outcome is the state makes the wrong decision for the child, and that scenario should be avoided so strenuously that any margin for error should favor the parents as well.


And would you say the same if the child had presented with multiple head traumas and healed bone fractures which the parents claimed was due to brittle bone disease but which the hospital felt was ongoing child abuse?

Just playing devil's advocate here--there is no right answer.
 
2014-01-10 12:43:26 AM

IamPatSajak: So I guess that leaves me back at square one. Is the child mentally ill?


If they aren't now, they will be by the time this crisis is over with.
 
2014-01-10 12:43:41 AM

Frederick: The worst possible outcome is the state makes the wrong decision for the child, and that scenario should be avoided so strenuously that any margin for error should favor the parents as well.


I guess we could jsut stop caring about children.
To be honest, let Darwin take care of this.

So you beat your child, break its bones. MEH
It is your child, you can do what you want.

WHO are we to judge?
God made you beat them? COOL
God said NO TO MEDICINE? COOL

Hell, we let parents brainwash their crotch spawn with religious-cults, why not this?
 
2014-01-10 12:46:09 AM

namatad: Frederick: The worst possible outcome is the state makes the wrong decision for the child, and that scenario should be avoided so strenuously that any margin for error should favor the parents as well.

I guess we could jsut stop caring about children.
To be honest, let Darwin take care of this.

So you beat your child, break its bones. MEH
It is your child, you can do what you want.

WHO are we to judge?
God made you beat them? COOL
God said NO TO MEDICINE? COOL

Hell, we let parents brainwash their crotch spawn with religious-cults, why not this?


Hell, we let parents kill their children by praying them back to wellness when they have easily treatable diabetic conditions with modern medicine.
 
2014-01-10 12:50:40 AM
This is what happens when you take House off the case before the last 10 minutes of the show.
 
2014-01-10 12:55:40 AM

if_i_really_have_to: That's why I always laugh when people complain about psychiatry being bullshiat guesswork, because "medicine" is frequently not a hell of a lot better.


The difference is that medicine occasionally cures people.

So, it's got that going for it.
 
2014-01-10 01:14:48 AM
Interesting that the same hospital pulled a similar stunt with a foreign national recently. I'd go with, either the staff is incompetent or the hospital is desperate for cash.
 
2014-01-10 01:19:13 AM

Frederick: There should be due diligence in investigating the child's health and care by whatever organizations either party chooses; but if there is differing legitimate opinions. the decision should be with the parents.

The worst possible outcome is the state makes the wrong decision for the child, and that scenario should be avoided so strenuously that any margin for error should favor the parents as well.


And when the parents are killing the child for the attention they get from medical providers, and being painted as the brave mommy and daddy by the people around them?
 
2014-01-10 01:23:09 AM

Gyrfalcon: Parents: Our daughter has a weird disorder with nebulous symptoms necessitating multiple invasive surgeries, and our doctor agrees.

Boston Children's: Your daughter is the victim of medical child abuse, i.e. we think you're having all these procedures done on her because you're torturing her for your own sick needs.

And since both conditions are real, whose to say what's happening here?


Fark if I know.  But did the parents have any plans to "treat" her in a way that would have messed her up worse than keeping her isolated in a psych ward for 9 months?  She was being treated by other doctors.  Doctors who I'm sure by now are well aware of the suspicions of the doctors in Boston and will bear them in mind when treating her in the future...  There are plenty of other ways this could have been resolved.
 
2014-01-10 01:29:56 AM

Frederick: The parents.  Every time.

There should be due diligence in investigating the child's health and care by whatever organizations either party chooses; but if there is differing legitimate opinions. the decision should be with the parents.

The worst possible outcome is the state makes the wrong decision for the child, and that scenario should be avoided so strenuously that any margin for error should favor the parents as well.


I would agree with you, in 99 cases out of a hundred, but, you see, I had a friend growing up. His parents were religious extremists with opinions about vaccines being evil, 'alternative' medicine and homeopathy being superior to anything involving actual science, they were seriously into prayer-based cures and they insisted on several occasions that their right to choose their son's treatment trumped everything, including doctors' medical opinion.

Operative word here is had. I had a friend. His parents killed him before we were twelve years old.

Simply because two people have accomplished something rodents and insects do does not always make them right, sane or intelligent.
 
2014-01-10 01:34:51 AM
Beyond the kid and the doctor/parent hoopla, it's that 'Bader 5' assignation that is freaking me out.

Personally I wonder if they could have come up with something more ominous sounding. I know you farkers can, but do you get my drift here?

"Sorry son, not only are you fricken nuts, but we're gonna have to send you to Bader 5."

/why not the 'happy home' or some shiz-nit?
 
2014-01-10 01:50:30 AM
FTA:  Dr. Jurriaan Peters, a neurologist at Boston Children's, wrote that he was "concerned about the distribution of care across multiple providers in different facilities and across state lines, the number of invasive procedures Justina has been submitted to."

According to Peters in another report, Justina has had an exploratory laparotomy, an appendectomy, several colonoscopies and a cecostomy tube placement. The Pelletiers have denied that any of their daughter's symptoms are psychosomatic and have said physicians approved all medical procedures performed on Justina.


I'd just like to point out that Occam's razor here is the following:

On one hand, you have an entire medical facility conspiring to keep one bed occupied fraudulently: nurses, residents, fellows, house medical staff, counsel, and administrators.  Nurses, residents, and fellows do the vast majority of assessments, and if you doubt the sincerity of their interests in seeing patients get well... then I'm sorry for you.  No resident or fellow is going to see any career benefit from playing ball in this kind of game, because too many people see the patient for all of them to be bought off by nefarious adminstrators.

On the other hand, you have two parents who acknowledge shipped their daughter to a large institutions for individual tests regarding a single condition;  I don't know Connecticut all _that_ well, and if I'm wrong please correct me, but it seems incongruous that none of the prior institutions offered a pretty comprehensive set of these tests.

[Note: this analysis focuses on the actual capabilities to provide the procedures in question.  I haven't even addressed the fact that many commenters exhibit an inconsistent, if not openly self-contradictory, assessment of the motives of the healthcare systems involved.  Namely, a common view seems to be that healthcare facilities are profit-driven and selfish and cruel, insofar as the facility in question is Boston Children's Hospital (which is, from a revenue point of view, simply holding the patient). However, the same reasoning would predict that the parents and patient would not have been through a "concerning number" of alternative institutions in order to conduct the wide variety of invasive procedures related to the diagnosis; rather, the consistent assessment would predict that early on, one profit-driven institution would have recognized the possibilities and captured the revenue stream.]

/ not a doctor
// don't play one on TV
///
 
2014-01-10 02:03:40 AM
I hate to interrupt all the conjecture with some fact, but mitochondrial disease is one of those things that is very hard to diagnose - and often only explored after all other known possibilities are excluded.  Some can be diagnosed by a mtDNA southern blot, some by nuclear DNA tests, some by metabolic lab results, some by MRI, some by muscle biopsy - and even then, tests can be inconclusive.

There is also massive variation in the symptomology and severity of mitochondrial disorders.  There are some mitochondrial diseases where the only noticeable symptom is eye droopiness (ptosis) or visual impairment due to optic nerve atrophy - and many with mitochondrial disease live a normal life span with minimal impairment.  On the other end of the spectrum, there are mitochondrial diseases that kill in infancy.  There are even some mitochondrial diseases (like Leigh's disease), where it varies drastically - from severe disability or death in infancy to perfectly normal until a nasty cold puts them on a ventilator and in a wheelchair - often for the rest of their lives.  There are even some that progress slowly for years and years - and then boom, dead or severely disabled in an instant.

Some of the problems with these massive variations, is that most doctors only hear about the most severe cases, so they see a kid with a little muscle wasting and fatigue, some speech issues, maybe vision problems - and never think mitochondrial disease.  The problem with this is that even in the most mild cases of mitochondrial disease, there is significant danger of decline from a particularly bad illness.  If you know ahead of time that your child with a more mild version of mitochondrial disease is at risk of a severe decline during illness, then you can take precautions to prevent that.  And then of course the problem is that if you are successful, the uninformed start to think it's not necessary.

Another problem with mitochondrial diseases are that the only treatment available to try and slow down progression of these diseases are supplements.  Some mitochondrial disease can cause massive deficiencies in certain supplements and often replacing them can mean the difference between a severely disabled child and a seemingly healthy child.  Of course these are the easy ones - where simple lab tests can identify the particular metabolic problem - these are a small subset of mitochondrial disorders.  There is science behind the use of supplements in treating mitochondrial disease - it's not about ground up rhino horn and ginseng - it's things like coenzyme Q10, carnitine, certain b vitamins - go look up the Electron Transport Chain, Krebb's cycle, ATP - and you'll see why trying to boost the body's ability to process certain things makes sense.

And it's not like they are shunning some more proven treatment - there is none.  These are supplements that the doctors who specialize in treating these disorders recommend - with the caveat that we have no idea if they will actually work.

Somatoform disorder is extraordinarily rare, but it is enticing to doctors because they can use it whenever they can't figure out what's wrong.  What used to be "We don't know enough about this yet to know what's going on but we'll keep trying", turns into "oh, it's all in their head!"

It Is disheartening to see how little knowledge has been gained outside of the specialists that treat these disorders over the last 20 years.


tldr:  the actions of the hospital in this case are criminal
 
2014-01-10 02:11:26 AM

Gyrfalcon: And would you say the same if the child had presented with multiple head traumas and healed bone fractures which the parents claimed was due to brittle bone disease but which the hospital felt was ongoing child abuse?

Just playing devil's advocate here--there is no right answer.


Frederick: There should be due diligence in investigating the child's health and care by whatever organizations either party chooses; but if there is differing legitimate opinions. the decision should be with the parents.


As in the case with the parents in the article where their doctor had a medical diagnosis contradicting or even simply not supporting the antagonist party's (Boston Medical) opinion.  For all intents and purposes the two opinions are of equal value.

The parents decide.

/unless we want to set hierarchies on how or why one medical opinion is greater than another and that sounds bad for patients rights
 
2014-01-10 02:19:59 AM

hardinparamedic: Frederick: There should be due diligence in investigating the child's health and care by whatever organizations either party chooses; but if there is differing legitimate opinions. the decision should be with the parents.

The worst possible outcome is the state makes the wrong decision for the child, and that scenario should be avoided so strenuously that any margin for error should favor the parents as well.

And when the parents are killing the child for the attention they get from medical providers, and being painted as the brave mommy and daddy by the people around them?


Medical providers are also the ones who have taken the girl away from her parents.  You kind of have to paint them both with the same brush.  If you trust medical providers with the authority to remove children from parents, wouldnt you also trust them with the diagnosis that brought the so-called "killing attention"?

This isnt an example of comparing holistic medicine with western medicine.  This is an example of professionals within the same field giving incompatible opinions.

The parents get to choose.
 
2014-01-10 02:25:48 AM

IamPatSajak: I have a child with special needs. Some of those needs overlap with those of children who have mitochondrial disease, so I spend a lot of time with mito parents. The procedures they described (except for the appendectomy, which is super common) are consistent with mito. It is also very common to have a clinical, but not genetic diagnosis of the condition because frankly, there are a lot of things that can go wrong with a human being that you just sort of lump together as one condition. It's not uncommon to have one doctor tell you something is wrong and another doctor telling you that nothing is wrong based on the exact same test results. All you can do as a parent is advocate for your child. It is very hard to find that balance between wanting answers and not wanting to look like you want more procedures to be done. I think most parents who have children with special needs are very aware of the scrutiny they are under, and for that reason it is not a good idea to go around looking for different doctors. The downside to that is, you might get stuck with a bad doctor that overlooks or downplays conditions they don't have experience with.

I have a deep resentment towards parents with munchausen by proxy. Not only are they child abusers, but they make it difficult, and at times impossible, for legitimately ill children to find sympathetic and unbiased medical care. The biggest thing I see with the case in reference, is that the girl is quite old, not only to be newly diagnosed with mitochondrial disease (most people I know have children who are seriously disabled as infants, and many of those children die as toddlers), but she is pretty old to be put into a mental ward for nearly a year if nothing was wrong with her. Laws have been changed so that people do not get committed against their will. I also happen to have legal custody of a teenage relative that lives in a psychiatric facility and they made it very clear to me that the patient has the right to leave at any time. Just because the parents lost custody does not mean the girl does not have the right to refuse treatment.

So I guess that leaves me back at square one. Is the child mentally ill?


Maybe not mentally ill, but the article seemed to imply some developmental delay, unless I'm reading it wrong.

You bring up some very good points.

each side has vested interests, and we are unlikely to get the full story, due to a combination of privacy laws and the complications of the case.

Dcfs, the family and the hospital are all in a precarious position here. Sadly, the girl is likely to suffer no matter the outcome.
 
2014-01-10 02:29:47 AM

DiarrheaVanFrank: I haven't even addressed the fact that many commenters exhibit an inconsistent, if not openly self-contradictory, assessment of the motives of the healthcare systems involved. Namely, a common view seems to be that healthcare facilities are profit-driven and selfish and cruel, insofar as the facility in question is Boston Children's Hospital (which is, from a revenue point of view, simply holding the patient). However, the same reasoning would predict that the parents and patient would not have been through a "concerning number" of alternative institutions in order to conduct the wide variety of invasive procedures related to the diagnosis; rather, the consistent assessment would predict that early on, one profit-driven institution would have recognized the possibilities and captured the revenue stream.]


It's not unusual for a doctor to require a test and then recommend places to have it done, then receive and interpret the results, then require further tests. Nor is it out of the question to simply go to whichever facility has the most immediately available appointment. Occam's Razor would actually favour what's happened to the girl. As far as residents and nurses goes, one only has to use the logic of, "Even if the problem is not psychological, the girl is better off kept under observation". And they can lodge their protests if they like.

Regardless, that line of reasoning doesn't apply to the Swiss national who was held by the hospital, although the reason of keeping the bed occupied for profit does.
Seriously, how could anyone argue in good conscience that keeping a Swiss child in an American psychology ward to talk about problems in English, rather than go back to Switzerland for treatment by her own doctor (something the Swiss are renowned for!) was something done for the benefit of the child? They can pick up a phone to verify that the child would go for help in Switzerland - if they actually thought the parents were harmful to the child, they could have even called Swiss family services to meet them at the plane! Instead, they detain a child in a foreign country where the child has no friends or family, and can not speak their mother tongue - that's surely a psychological recipe for success.
 
2014-01-10 02:32:45 AM
My oldest son had medical issues (about 20 years ago) and was on medications.  The school wanted to know what meds he was on (even though he didn't take them at school).  I informed them they did not need to know.  They sent a letter threatening to turn us into child services for neglect.  I finally took a letter to school informing them that what they were doing I considered harrassment and that if the doctor thought they should know I would.  Otherwise fark off.  Never heard from them again.
 
2014-01-10 02:47:08 AM

Frederick: Gyrfalcon: And would you say the same if the child had presented with multiple head traumas and healed bone fractures which the parents claimed was due to brittle bone disease but which the hospital felt was ongoing child abuse?

Just playing devil's advocate here--there is no right answer.

Frederick: There should be due diligence in investigating the child's health and care by whatever organizations either party chooses; but if there is differing legitimate opinions. the decision should be with the parents.

As in the case with the parents in the article where their doctor had a medical diagnosis contradicting or even simply not supporting the antagonist party's (Boston Medical) opinion.  For all intents and purposes the two opinions are of equal value.

The parents decide.

/unless we want to set hierarchies on how or why one medical opinion is greater than another and that sounds bad for patients rights


Well, just to take it one more turn around with my hypothetical brittle-bone patient: So the parents' expert agrees that she has brittle-bone disease, and the hospital's expert agrees that she's being abused. They send her home, under your theory, because the parents' decision trumps the hospitals; and six months later she is found dead of massive head trauma...caused by beatings inflicted by her parents who were, after all, abusing her, notwithstanding the brittle-bone disease. Because, you see, both diagnoses were correct.

Now what?
 
2014-01-10 03:01:43 AM

momalboe: I hate to interrupt all the conjecture with some fact, ...


Assuming what you say is true about mitochondrial disease, it is entirely possible that she does have a form of it AND that her life is threatened by the excessive invasive procedures instigated by her parents. Hospitals are full of germs; surgeries come with risks. The question then is not whether she might have something wrong with her mitochondria, but whether her treatment is remotely appropriate, and if not, whether the parents are responsive to evidence based reasoning.

As for somatoform disorder, no it is not "rare", though obviously it is tricky to compile statistics on it.
And of course it is possible to have somatoform disorder AND any other real illness concurrently.
That doesn't make inappropriate treatment or missed diagnoses any less dangerous.
 
2014-01-10 03:38:15 AM

Gyrfalcon: Well, just to take it one more turn around with my hypothetical brittle-bone patient: So the parents' expert agrees that she has brittle-bone disease, and the hospital's expert agrees that she's being abused. They send her home, under your theory, because the parents' decision trumps the hospitals; and six months later she is found dead of massive head trauma...caused by beatings inflicted by her parents who were, after all, abusing her, notwithstanding the brittle-bone disease. Because, you see, both diagnoses were correct.

Now what?


I'd call this hypothetical the "worst case scenario -parent's choice".  And in this event the state would have the burden of proving an abuse case in court against the parents in defense of the daughter.  If an expert is able to make a diagnosis that supports the parents and there is insufficient independent support for the hospital's claims (such as a corroborating report of suspected abuse by the childs school, or other source that would involve law authorities turning it into a legal matter) then the parents should retain ultimate authority.

It would be an unfortunate situation but worse (by far) would be the converse; what I'd call hypothetically the "worst case scenario -hospital's choice".  Where the girl does have brittle-bone disease presenting as abuse but the hospital is allowed the authority to erroneously remove the girl from the parents and subsequent medical attention causing heartache and death.

In considering "worst case scenarios":
I can forgive a system that puts the responsibility on the parents even when the parents fail the system.
But I cannot forgive a system that puts the responsibility on the state only to have the state fail the parents.
 
2014-01-10 03:43:31 AM

Frederick: Gyrfalcon: Well, just to take it one more turn around with my hypothetical brittle-bone patient: So the parents' expert agrees that she has brittle-bone disease, and the hospital's expert agrees that she's being abused. They send her home, under your theory, because the parents' decision trumps the hospitals; and six months later she is found dead of massive head trauma...caused by beatings inflicted by her parents who were, after all, abusing her, notwithstanding the brittle-bone disease. Because, you see, both diagnoses were correct.

Now what?

I'd call this hypothetical the "worst case scenario -parent's choice".  And in this event the state would have the burden of proving an abuse case in court against the parents in defense of the daughter.  If an expert is able to make a diagnosis that supports the parents and there is insufficient independent support for the hospital's claims (such as a corroborating report of suspected abuse by the childs school, or other source that would involve law authorities turning it into a legal matter) then the parents should retain ultimate authority.

It would be an unfortunate situation but worse (by far) would be the converse; what I'd call hypothetically the "worst case scenario -hospital's choice".  Where the girl does have brittle-bone disease presenting as abuse but the hospital is allowed the authority to erroneously remove the girl from the parents and subsequent medical attention causing heartache and death.

In considering "worst case scenarios":
I can forgive a system that puts the responsibility on the parents even when the parents fail the system.
But I cannot forgive a system that puts the responsibility on the state only to have the state fail the parents.


Well, I admire your ability to divest yourself of emotion to the point that the death of a child can be seen as the "parents failing the system." And I'll admit that this scenario is a tad unrealistic. HOWEVER, it's because of the possibility of the death of a child, and the possibility that abuse could in fact be occurring, that leads hospitals and CPS workers to make decisions like the one being made here.

That both the system AND the parent are FAILING THE CHILD in a horrible way that can't be overstated is sadly missing from your analysis.
 
2014-01-10 03:45:43 AM

Jannock: Beyond the kid and the doctor/parent hoopla, it's that 'Bader 5' assignation that is freaking me out.

Personally I wonder if they could have come up with something more ominous sounding. I know you farkers can, but do you get my drift here?

"Sorry son, not only are you fricken nuts, but we're gonna have to send you to Bader 5."

/why not the 'happy home' or some shiz-nit?


That was just a typo.

www.homedepot.com
 
2014-01-10 04:02:55 AM

Gyrfalcon: Well, I admire your ability to divest yourself of emotion to the point that the death of a child can be seen as the "parents failing the system." And I'll admit that this scenario is a tad unrealistic. HOWEVER, it's because of the possibility of the death of a child, and the possibility that abuse could in fact be occurring, that leads hospitals and CPS workers to make decisions like the one being made here.


What we're talking about is:

Gyrfalcon: whose to say what's happening here?


You seem to be making a predetermined judgement that the parents are not looking after the bests interests of the child -or perhaps are incapable of doing so.  Keep in mind, in your scenario the parents are supported by an expert -what more could the parents do to avoid the will of the hospital or CPS?

Gyrfalcon: That both the system AND the parent are FAILING THE CHILD in a horrible way that can't be overstated is sadly missing from your analysis.


Well, the scenarios we discussed were worst case -meaning death of the child.  It is not a fact that no intervention by the hospital would be detrimental.  Allowing the child and her parents to continue to pursue the advice of their doctor would not necessarily be a failure for either the parents or the system.
 
2014-01-10 04:41:10 AM

Frederick: Well, the scenarios we discussed were worst case -meaning death of the child.  It is not a fact that no intervention by the hospital would be detrimental.  Allowing the child and her parents to continue to pursue the advice of their doctor would not necessarily be a failure for either the parents or the system.


Here's the thing though. You seem to be under the impression that this kind of thing happens on the will of one person. It doesn't. Things like this go through multiple levels of Ethics Committees, multiple attending physicians, multiple social workers, and even Law Enforcement and DCS. No one doctor can say "This is bullshiat and you're doctor shopping to make your kid sick, YOINK!" and ban a parent from involvement with their child.

There are well documented cases of Munchhausen's By Proxy, and one of the major warning signs is doctor shopping and a history of procedures which do not match the diagnosis given. I'm aware of one case in a child with an IBOM, and the results were incredibly tragic. The parent involved would lie about being a healthcare provider to staff caring for their child, would even go so far as to perform medical procedures on the child if any equipment was left in the room, and would intentionally alter the child's diet to "no-no foods" and withhold medicine to get the child sick.
 
2014-01-10 05:24:52 AM

hardinparamedic: Frederick: Well, the scenarios we discussed were worst case -meaning death of the child.  It is not a fact that no intervention by the hospital would be detrimental.  Allowing the child and her parents to continue to pursue the advice of their doctor would not necessarily be a failure for either the parents or the system.

Here's the thing though. You seem to be under the impression that this kind of thing happens on the will of one person. It doesn't. Things like this go through multiple levels of Ethics Committees, multiple attending physicians, multiple social workers, and even Law Enforcement and DCS. No one doctor can say "This is bullshiat and you're doctor shopping to make your kid sick, YOINK!" and ban a parent from involvement with their child.


Are you sure about that?
Even if the process is thorough and objective an individual family wouldnt be able to match the resources of that system giving the parents a disadvantage in essentially needing to prove innocence.

There are also cases where a child removed from parents suffered at the hands of caretakers.  It's not an automatic improvement.  There are cons to weigh on the side of the state as well.

hardinparamedic: There are well documented cases of Munchhausen's By Proxy, and one of the major warning signs is doctor shopping and a history of procedures which do not match the diagnosis given. I'm aware of one case in a child with an IBOM, and the results were incredibly tragic. The parent involved would lie about being a healthcare provider to staff caring for their child, would even go so far as to perform medical procedures on the child if any equipment was left in the room, and would intentionally alter the child's diet to "no-no foods" and withhold medicine to get the child sick.


I understand that.  It's rare but it happens.  And a system with the best people having the best intentions wont eliminate it from continuing to happen.  I'm all for professionals continuing to alert on red flags, and exercising discretion on behalf of children.  But remember, according to the article, the parents have been following the advice of their doctor.  This isnt being reported as a case of parents (alone) vs hospital; its a case of one medical opinion vs another medical opinion.  And the opinion that removes the kid from parents is inexplicably prevailing which I consider extraordinary and without extraordinary justification and evidence.  I think erring on the side of caution favors the parents.

/only able to see their child for an hour a day?  Cruel.
 
2014-01-10 06:40:10 AM

starsrift: Interesting that the same hospital pulled a similar stunt with a foreign national recently. I'd go with, either the staff is incompetent or the hospital is desperate for cash.


I believe so, but could you provide the source on the story of the other patient?
 
2014-01-10 07:24:53 AM

JasonGriffee: starsrift: Interesting that the same hospital pulled a similar stunt with a foreign national recently. I'd go with, either the staff is incompetent or the hospital is desperate for cash.

I believe so, but could you provide the source on the story of the other patient?


RTFA.
 
2014-01-10 07:33:18 AM
upload.wikimedia.org
 
2014-01-10 07:35:40 AM

Frederick: Are you sure about that?
Even if the process is thorough and objective an individual family wouldnt be able to match the resources of that system giving the parents a disadvantage in essentially needing to prove innocence.

There are also cases where a child removed from parents suffered at the hands of caretakers.  It's not an automatic improvement.  There are cons to weigh on the side of the state as well.


I'm pretty sure about it, because I've pulled the trigger on the process before on cases of abuse.

It's not an automatic improvement, but it's a better chance than what they have with the person they are with. You're invoking the nirvana fallacy here - if it's not perfect, just leave them with their abusers.

Frederick: I understand that.  It's rare but it happens.  And a system with the best people having the best intentions wont eliminate it from continuing to happen.  I'm all for professionals continuing to alert on red flags, and exercising discretion on behalf of children.


It's not actually all that rare among parents of "special needs" (I'm not talking about autistic or mentally retarded) children. It's actually not uncommon at all.

Frederick: But remember, according to the article, the parents have been following the advice of their doctor.


And if that doctor is being mislead by a parent who is making her child sick, or purposely altering the results of medical tests by giving the child compounds, poisons or medications to do so, that advice is not valid. Your statement is exactly like saying someone who is doctor shopping for pain med scripts is excused by following doctors orders for those 300-pill bottles of Oxycontin.

Frederick: And the opinion that removes the kid from parents is inexplicably prevailing which I consider extraordinary and without extraordinary justification and evidence.  I think erring on the side of caution favors the parents.


And again, you seem to think the opinion of one medical provider is what can make the decision to remove that child from their parents, which in any case requires a court order - even if it is an emergency bench warrant, or taking the child into legal custody of the State.

starsrift: RTFA.


How, exactly, is this going to "get the hospital cash"? Especially since this is a move which could cost the hospital millions in legal fees and loss from civil suits.
 
2014-01-10 08:01:55 AM

hardinparamedic: How, exactly, is this going to "get the hospital cash"? Especially since this is a move which could cost the hospital millions in legal fees and loss from civil suits.


Speaking of cash, who is paying for the kid's stay? In-patient psych care costs $600-$1000 per day or more. Now I know that Hospitals budget in huge losses from uncompensated care, but that seems like a lot to just hold somebody hostage, especially when the bed could be opened for someone else who needs it. (No, we don't have a glut of mental hospital beds anywhere in the USA) Serious question: If the parents have lost custody, are they and their insurance still liable for their child's ongoing medical bills? Does she go on Medicaid during the time that she's a ward of the state? Or is this some nebulous third situation?
 
2014-01-10 08:02:27 AM
I just want to point out that this did NOT happen at Boston Medical Center, it happened at Children's Hospital.

bad Subby. Bad.
 
2014-01-10 08:26:51 AM
The issue is that two sets of doctors have reached two different sets of diagnosis. The doctors at Tufts, a respected research hospital, think it is a mitochondrial disorder (usually genetic, either arising from a familial mutation or a sudden one, which leads to a significant percentage of a cell's mitochondria producing insufficient energy). They made the initial diagnosis and have also diagnosed the sister of the child in question with a mitochondrial disorder. Mitochondrial disorders are a relatively new discovery in the scientific and medical fields, and not all physicians believe the evidence.

Then the parents took their sick child to Boston Children's Hospital, another respected hospital, for a second opinion like the media always tells people they should when they get an unusual diagnosis. The doctors at Boston Children's Hospital diagnosed the child as having a somatoform disorder. In a somatoform disprder, a mental disorder can produce physical symptoms. Classic ones include false pregnancy, where a patient so strongly desires to be pregnant that the body starts to produce the secondary characteristics of pregnancy (lactation, bloating belly). In this case, the patient so strongly to be like her sick sister, her body is mimicking the symptoms of mitochondrial disease. Somatoform diseases can be treated through psychotherapy.

The parents did not like this diagnosis and decided to take the child back to Tufts. The doctors at Boston Children's Hospital, adamant in their diagnosis, refused to release the patient, assuming she'd be harmed by the wonky treatments for a serious disorder she doesn't have. The doctors that managed to get a court to declare that the child's parents where going to medically abuse their child (such declarations are usually used to force parents who for religious reasons don't believe in modern medicine to surrender their child to the state for medical treatment). Now the child is a ward of Boston Children's Hospital for all medical issue.

I wish they would take the child's blood samples and perform some redox experiments on it. That will settle if it is a mitochondrial disorder very quickly.
 
2014-01-10 08:27:33 AM

Frederick: hardinparamedic: Frederick: Well, the scenarios we discussed were worst case -meaning death of the child.  It is not a fact that no intervention by the hospital would be detrimental.  Allowing the child and her parents to continue to pursue the advice of their doctor would not necessarily be a failure for either the parents or the system.

Here's the thing though. You seem to be under the impression that this kind of thing happens on the will of one person. It doesn't. Things like this go through multiple levels of Ethics Committees, multiple attending physicians, multiple social workers, and even Law Enforcement and DCS. No one doctor can say "This is bullshiat and you're doctor shopping to make your kid sick, YOINK!" and ban a parent from involvement with their child.

Are you sure about that?
Even if the process is thorough and objective an individual family wouldnt be able to match the resources of that system giving the parents a disadvantage in essentially needing to prove innocence.

There are also cases where a child removed from parents suffered at the hands of caretakers.  It's not an automatic improvement.  There are cons to weigh on the side of the state as well.

hardinparamedic: There are well documented cases of Munchhausen's By Proxy, and one of the major warning signs is doctor shopping and a history of procedures which do not match the diagnosis given. I'm aware of one case in a child with an IBOM, and the results were incredibly tragic. The parent involved would lie about being a healthcare provider to staff caring for their child, would even go so far as to perform medical procedures on the child if any equipment was left in the room, and would intentionally alter the child's diet to "no-no foods" and withhold medicine to get the child sick.

I understand that.  It's rare but it happens.  And a system with the best people having the best intentions wont eliminate it from continuing to happen.  I'm all for professionals continuing to alert on red flags, and exercising discretion on behalf of children.  But remember, according to the article, the parents have been following the advice of their doctor.  This isnt being reported as a case of parents (alone) vs hospital; its a case of one medical opinion vs another medical opinion.  And the opinion that removes the kid from parents is inexplicably prevailing which I consider extraordinary and without extraordinary justification and evidence.  I think erring on the side of caution favors the parents.

/only able to see their child for an hour a day?  Cruel.


Don't underestimate the number of shiatty parents out there. I've seen children whose parents have done unspeakable things to them, and it's not as uncommon as the public wants to think.

There are parents out there who don't give a fark about their kids. It's better to err on the side of caution, because the worst that can happen in an uncaring parent's custody is the death of their child.
 
2014-01-10 08:39:51 AM

skinink: "Barry Pollack, a Boston attorney for a woman whose daughter was kept in Bader 5 for several weeks, recently wrote a letter to the Massachusetts Department of Public Health demanding that the psychiatric ward be closed. "

Justina Justina bo-bina,
Banana mana fo-fina,
Fi fi momina,
Justina!


media.tumblr.com

I think season 2 was the best so far.
 
2014-01-10 08:45:50 AM
 
2014-01-10 08:57:25 AM

kortex: grumpfuff: Trolltastic headlines with 0 comments get greened?

It happens more often than you think.

This and this only. Subby is a pathetic biatch.


Ive read the article.
I'm not sure how the headline is trolltastic. or how subby is off base.
Seems to be spot-on to me.
 
2014-01-10 08:59:12 AM

Road Rash: Interesting reading, scroll all the way down:  http://foxct.com/local-news/investigations/stories/hospital-holds-wes t -hartford-girl-for-9-months/


At first, I was in the second 'article' of the list and saw that this is not only something that's gone on before, but as DiarrheaVanFrank suggested, a nurse even resigned over it.
But then I read to the end....Yikes. The girl's sneaking notes out like she was in prison. That's ridiculous, just ridiculous.
 
2014-01-10 09:01:51 AM

HotWingAgenda: Jannock: Beyond the kid and the doctor/parent hoopla, it's that 'Bader 5' assignation that is freaking me out.

Personally I wonder if they could have come up with something more ominous sounding. I know you farkers can, but do you get my drift here?

"Sorry son, not only are you fricken nuts, but we're gonna have to send you to Bader 5."

/why not the 'happy home' or some shiz-nit?

That was just a typo.


Excellent. Great euphemism.
 
2014-01-10 09:27:14 AM

E5bie: Serious question: If the parents have lost custody, are they and their insurance still liable for their child's ongoing medical bills? Does she go on Medicaid during the time that she's a ward of the state? Or is this some nebulous third situation?


It actually depends. In cases where DCS removes the child from custody, their medical care is actually paid for by the taxpayers, the same as if the person was under arrest or an inmate. However, the Hospital is paid the rate which they are contracted to the state with, which tends to be far lower than they would expect to get from State Medicaid.
 
2014-01-10 09:34:55 AM

EmmaLou: Don't underestimate the number of shiatty parents out there. I've seen children whose parents have done unspeakable things to them, and it's not as uncommon as the public wants to think.


So have I, though I've got reason to believe that my social circle is not a microcosm of society at large.

There are parents out there who don't give a fark about their kids.

There are, but not enough that we shouldn't, in the general sense, be trusting parents to raise their children.

It's better to err on the side of caution, because the worst that can happen in an uncaring parent's custody is the death of their child.

It's only better to a certain degree, given the low risk. Beyond that, our "erring on the side of caution" does far more harm than good, saving no additional lives but bringing great harm to many that would not otherwise face any harm at all.
 
2014-01-10 09:48:45 AM

EmmaLou: Don't underestimate the number of shiatty parents out there. I've seen children whose parents have done unspeakable things to them, and it's not as uncommon as the public wants to think.

There are parents out there who don't give a fark about their kids. It's better to err on the side of caution, because the worst that can happen in an uncaring parent's custody is the death of their child.


This. I'm sure the hospital didn't make it's decision lightly to take custody of the child.
 
2014-01-10 09:55:48 AM

Millennium: It's only better to a certain degree, given the low risk. Beyond that, our "erring on the side of caution" does far more harm than good, saving no additional lives but bringing great harm to many that would not otherwise face any harm at all.


Except in the case of the hospital that pulled the trigger with DCS, they are A) Legally required by State and Federal laws to report suspicions of child abuse or neglect, and can face significant sanctions - including the revocation of the licensure of their professional staff which had contact with this patient and failed to report, and B) It's not something that's done lightly, because unless there is documented evidence and a good faith report made, the hospital and it's staff can be liable for civil remedies based on inappropriate action.
 
2014-01-10 09:57:31 AM
I can't comment on the specific case, but I've seen case reports where kids develop conversion disorders secondary to their parents' medical concerns.

As hard as it is for everyone, limiting parental access for a period of time to see if the symptoms improve is sometimes necessary. It is a last resort after all other attempts to make a diagnosis have failed.

Given the legal shiatstorm this is generating for the hospital, I can't imagine they're doing this for any gain of their own. Also, something like this will (or should) involve a LOT of oversight.

/I don't envy anyone involved in this! Glad I'm not involved in psych cases in general.
 
2014-01-10 10:59:29 AM

doglover: Gyrfalcon: Parents: Our daughter has a weird disorder with nebulous symptoms necessitating multiple invasive surgeries, and our doctor agrees.

Boston Children's: Your daughter is the victim of medical child abuse, i.e. we think you're having all these procedures done on her because you're torturing her for your own sick needs.

And since both conditions are real, whose to say what's happening here?

Just because one party is wrong doesn't make the other party right.

Hitler fought Stalin.


WOW Godwin
 
2014-01-10 11:38:56 AM

Virtual Pariah: Question I have is if this was a real disease, wouldn't cessation of the original treatment have already shown her relapsing?

Seems that BMC may be on to something, if the treatment for the psychological issue is keeping the symptoms at bay.

Would not the amount of time have shown some changes if this was physical?


Agreed.  The more I hear of this case the more I think the hospital is right.
 
2014-01-10 12:26:47 PM
greentea1985: I wish they would take the child's blood samples and perform some redox experiments on it. That will settle if it is a mitochondrial disorder very quickly.

Maybe these tests have actually been performed and were negative, confirming Boston Children's Hospital's diagnosis, which is why the court agreed with them to keep the child in their custody.  Remember, the court records are sealed and all parties are subject to a gag order, so we wouldn't know if that's the case.
 
2014-01-10 12:27:08 PM

Bigdogdaddy: My oldest son had medical issues (about 20 years ago) and was on medications.  The school wanted to know what meds he was on (even though he didn't take them at school).  I informed them they did not need to know.  They sent a letter threatening to turn us into child services for neglect.  I finally took a letter to school informing them that what they were doing I considered harrassment and that if the doctor thought they should know I would.  Otherwise fark off.  Never heard from them again.


Yeah you gotta watch those.  Once that data gets in the kid's file, all of a sudden you have teachers who think they should have been in another career treating your child differently because of a diagnosis (and an incorrect diagnosis makes it worse).

It sucks being a young parent and not realizing the rest of humanity is just trying their best and still sometimes farks it up.
 
2014-01-10 12:29:00 PM

Geotpf: greentea1985: I wish they would take the child's blood samples and perform some redox experiments on it. That will settle if it is a mitochondrial disorder very quickly.

Maybe these tests have actually been performed and were negative, confirming Boston Children's Hospital's diagnosis, which is why the court agreed with them to keep the child in their custody.  Remember, the court records are sealed and all parties are subject to a gag order, so we wouldn't know if that's the case.


As a father, I'd say it's more telling that the parents haven't walked in and taken their child back.  Moved to a psych ward?
I'd be walking in at 2am with a sledgehammer and walking out with my kid.
 
2014-01-10 12:40:45 PM

stlbluez: kortex: grumpfuff: Trolltastic headlines with 0 comments get greened?

It happens more often than you think.

This and this only. Subby is a pathetic biatch.

Ive read the article.
I'm not sure how the headline is trolltastic. or how subby is off base.
Seems to be spot-on to me.


The headline makes it seem like the hospital refused to release the daughter for no good reason. When you read the article, you learn its because they thought there might be child abuse.

I'm not taking sides on the issue, but to act like this is just a case where the hospital went "Nope, our child now!" for no good reason? That's trolltastic.
 
2014-01-10 01:09:30 PM
I'm going to guess they suspect Munchausen's By Proxy, which is a psych disorder but not of the child. The only way to make a definitive determination is to remove the child from the parents' custody and see if the medical disorder improves.

I saw a boy just like this when I was practicing and indeed the mother dragged him to specialty care centers in different states where he underwent a lot of tests and surgeries. We were on to her and she fled with the boy. It's really difficult to take custody like that and they probably took it to their Ethics committee.

The disorder is disgusting and the child abuse is solely because the parent wants attention and martyr status. For those of you that don't know the disorder, the woman poisoning the girl in the Sixth Sense is an example of Munchausen's.
 
2014-01-10 01:56:58 PM

IamPatSajak: I have a child with special needs. Some of those needs overlap with those of children who have mitochondrial disease, so I spend a lot of time with mito parents. The procedures they described (except for the appendectomy, which is super common) are consistent with mito. It is also very common to have a clinical, but not genetic diagnosis of the condition because frankly, there are a lot of things that can go wrong with a human being that you just sort of lump together as one condition. It's not uncommon to have one doctor tell you something is wrong and another doctor telling you that nothing is wrong based on the exact same test results. All you can do as a parent is advocate for your child. It is very hard to find that balance between wanting answers and not wanting to look like you want more procedures to be done. I think most parents who have children with special needs are very aware of the scrutiny they are under, and for that reason it is not a good idea to go around looking for different doctors. The downside to that is, you might get stuck with a bad doctor that overlooks or downplays conditions they don't have experience with.

I have a deep resentment towards parents with munchausen by proxy. Not only are they child abusers, but they make it difficult, and at times impossible, for legitimately ill children to find sympathetic and unbiased medical care. The biggest thing I see with the case in reference, is that the girl is quite old, not only to be newly diagnosed with mitochondrial disease (most people I know have children who are seriously disabled as infants, and many of those children die as toddlers), but she is pretty old to be put into a mental ward for nearly a year if nothing was wrong with her. Laws have been changed so that people do not get committed against their will. I also happen to have legal custody of a teenage relative that lives in a psychiatric facility and they made it very clear to me that the patient has the right to leave at any ...


The article doesn't say she was newly diagnosed. It says she has a doctor who the family has been working with at another hospital and that Children's Boston newly diagnosed her with somatoform disorder. The mitochondrial illness doesn't appear to be a "new" diagnosis at all--in fact, it was Children's "new" diagnosis, based on one visit, that the parents rejected and asked to take the child to her regular doctor who had diagnosed her with mitochondrial illness previously (three years ago). What the article does not discuss is whether or not the child had been having difficulties since infancy, presumably because that information, like so much of this case, is under a gag order.

Everyone here--including you--is just speculating. Whether that speculation comes from textbooks or experience, it's still just speculation. Accusing the parents of Munchausen's is a pretty major accusation when the facts aren't out there and you don't know if this kid's been getting seen since infancy to determine what the hell might be going on with her, doncha think? (Yeah, I know... Fark)
 
2014-01-10 06:06:13 PM

Havokmon: Geotpf: greentea1985: I wish they would take the child's blood samples and perform some redox experiments on it. That will settle if it is a mitochondrial disorder very quickly.

Maybe these tests have actually been performed and were negative, confirming Boston Children's Hospital's diagnosis, which is why the court agreed with them to keep the child in their custody.  Remember, the court records are sealed and all parties are subject to a gag order, so we wouldn't know if that's the case.

As a father, I'd say it's more telling that the parents haven't walked in and taken their child back.  Moved to a psych ward?
I'd be walking in at 2am with a sledgehammer and walking out with my kid.


No, you'd be carried out by the cops in handcuffs (if they didn't shoot you first, you know, since you had a deadly weapon on you and all).
 
2014-01-10 07:48:11 PM
Self-hypnosis has a way of shutting those mitochondria things down.
 
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