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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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15939 clicks; posted to Main » on 09 Jan 2014 at 10:53 PM (32 weeks ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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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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