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(ABC)   Tufts Medical Center says a teenager has mitochondrial disease. Boston Children's Hospital disagrees--by declaring the symptoms psychosomatic, taking her from her parents, and denying her any medical treatment except to say it's all in her head   (abcnews.go.com) divider line 224
    More: Followup, mitochondrial disease, Tufts Medical Center, Children's Hospital Boston, foster care  
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8879 clicks; posted to Main » on 25 Feb 2014 at 6:47 PM (7 weeks ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2014-02-25 09:41:20 PM

mongbiohazard: It's a genetic disease... isn't there a test for this which could clear the whole thing up? I mean, instead of guessing as to whose diagnosis is the accurate one can't we just use science? Is there no test for a mitochondrial disease?


Mitochondria are remnants of our ancient microbial past. They are symbionts with their own genetics.

The mitochondrial DNA is fully inherited from the egg producer (i.e. the one with the womb and vajayjay). People can and do sequence that DNA.

That being said, it totes be decades since i took genetics. To say people fully understand the code would be kind of a big assumption, though. Even if the kid doesnt have a disease on the list doesnt prove a lack of disease.
 
2014-02-25 09:42:22 PM

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


Absolutely.  The fact that this was not allowed prior to the child being removed from parents is an over reach.  The lack of transparency does not serve any protection in this case.  Especially at this point.  Unseal the documents.

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


Where does the daughter want to be?
 
2014-02-25 09:48:06 PM

MemeSlave: Ask Meg and Charles Wallace about mitochondrial disease.


Haven't read that in 30 years and I immediately knew the reference. Bravo!
 
2014-02-25 09:53:55 PM

pla: Someone else already said it.  Tie-breaker eval.  Appropriate treatment for girl.  If time proves one sides conclusively correct, losers get the death penalty with no appeals.

If the parents have somehow "faked" this, they deserve a slow and painful death.  If BCH and CPS has wasted a year of everyone's life to save face, they deserve even worse.  Let a third party make the call in the interests of doing the best thing for the girl, see who had it right, and the wrong side gets gassed.

Something many of you have overlooked here - This won't end until the girl's death.  You don't interact with CPS and have the situation resolved in any reasonably sane manner.  Even if she lives to see 18 this won't end, because once under the jurisdiction of the self-masturbatory "family" court system, young adults frequently remain trapped in it well into their late 20s.

BCH may - may - have her best interests at heart.  CPS' default tactics seriously make me wonder how they can maintain adequate staffing levels due to parents completely losing their shiat and going postal.


You're a goddamned idiot, and I don't care if I get another 3-day fark vaction for saying so.
 
2014-02-25 09:55:30 PM

nyseattitude: bborchar: badhatharry: bborchar: badhatharry: hardinparamedic: mongbiohazard: It's a genetic disease... isn't there a test for this which could clear the whole thing up? I mean, instead of guessing as to whose diagnosis is the accurate one can't we just use science? Is there no test for a mitochondrial disease?

Diagnosing a mitochondrial disease is not as simple as a chromosome assay. And it's not one disease. It's an umbrella term.

badhatharry: still not as bonkers as CPS and doctors that will never admit that they made a mistake.

And it would not be a black eye to Tufts if they were proven to be wrong on such a public case? Don't pretend like BosChildrens has everything to lose here.

Everybody is covering their ass.

Well, if she is misdiagnosed either way, the family could sue...and the parents are real nutjobs, whether or not they are lying.

I believe the parents are kind of nuts. Lots of parents are kind of nuts. They were doing what they thought was the right thing. Taking away their kid is very farking outrageous.

They are nutjobs because instead of doing whatever they can to get their child back, they are more interested in being proven right.  Whether the kid has an illness or not, I don't know, and I can't even hazard a guess because we don't have enough information.  But they aren't doing anything they are supposed to do to get her back...not a SINGLE thing.  They argue with the doctors, bring needles to visits, argue with the social workers, break gag orders and threaten to sue medical facilities that would take care of their daughter without even seeing it.  THAT'S why I think they are nuts...I don't have to know whether or not the child is crazy or actually sick to realize that the parents are attention whores.

Children's has portraid them in a negative light since day one when the parents insisted on a feeding tube for her nutrition. Since then they, and DCF, have painted them negatively. It got off to a really bad start because Children's took ...


None of which has anything to do with their subsequent belligerent behavior.  They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.  I have two chronic diseases that require daily medication and if I wouldn't have taken my medical supplies in with me when visiting my daughter.  If they TRULY wanted their daughter back at home with them, they would have bent over backwards to do what they had to do.  That's what any rational parent would do...but they are doing everything they can not to get their daughter back, but to drum up sympathy for their situation.  Whatever is wrong with the girl, I hope they can help her...but I don't think her parents are necessarily capable of making the right decisions for her, either.
 
2014-02-25 09:55:53 PM

LavenderWolf: pla: Someone else already said it.  Tie-breaker eval.  Appropriate treatment for girl.  If time proves one sides conclusively correct, losers get the death penalty with no appeals.

If the parents have somehow "faked" this, they deserve a slow and painful death.  If BCH and CPS has wasted a year of everyone's life to save face, they deserve even worse.  Let a third party make the call in the interests of doing the best thing for the girl, see who had it right, and the wrong side gets gassed.

Something many of you have overlooked here - This won't end until the girl's death.  You don't interact with CPS and have the situation resolved in any reasonably sane manner.  Even if she lives to see 18 this won't end, because once under the jurisdiction of the self-masturbatory "family" court system, young adults frequently remain trapped in it well into their late 20s.

BCH may - may - have her best interests at heart.  CPS' default tactics seriously make me wonder how they can maintain adequate staffing levels due to parents completely losing their shiat and going postal.

You're a goddamned idiot, and I don't care if I get another 3-day fark vaction for saying so.


*vacation

/At least my idiocy is just a typo, and I'm not advocating the death penalty for 30 people OR the victim's family over a possible misdiagnosis.

//You admittedly don't know all of the facts in the case, but brazenly advocate death for either side...
 
2014-02-25 09:56:10 PM

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

Absolutely.  The fact that this was not allowed prior to the child being removed from parents is an over reach.  The lack of transparency does not serve any protection in this case.  Especially at this point.  Unseal the documents.

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

Where does the daughter want to be?


Anyhwere where the walls aren't padded and there are no bars on the windows.  Even if mom is crazy, it must be better than being stuck in the psychiatric ward.
 
2014-02-25 10:00:18 PM

bborchar: They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.


i think she was attempting to sneak in her older sister's midichlorian drugs to save her baby form the evil doctors.
 
2014-02-25 10:04:32 PM

Flab: bborchar: They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.

i think she was attempting to sneak in her older sister's midichlorian drugs to save her baby form the evil doctors.


Probably.  Her excuse for it didn't make any sense and it's not what any sane person would have done when they were trying to get their daughter back.
 
2014-02-25 10:06:22 PM

bborchar: Flab: bborchar: They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.

i think she was attempting to sneak in her older sister's midichlorian drugs to save her baby form the evil doctors.

Probably.  Her excuse for it didn't make any sense and it's not what any sane person would have done when they were trying to get their daughter back.


Agreed.  And a sane person wouldn't threaten to sue a long term care facility, that's willing to take his daughter in, before actually seeing it, either.
 
2014-02-25 10:15:43 PM

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

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

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


This is the same hospital that did it to another, younger child a while back--I can't get the link, but it's on Fark so a TotalFarker could.
 
2014-02-25 10:17:50 PM

rebelyell2006: badhatharry: hardinparamedic: badhatharry: I believe the parents are kind of nuts. Lots of parents are kind of nuts. They were doing what they thought was the right thing. Taking away their kid is very farking outrageous.

If they had reason to suspect that the parents were deliberately altering the child's diet, or spiking the kid with medications or chemicals to mimic the effects of a mitochondrial disorder - or were attempting to convince providers of her having a disease like that when she did not, no it's not.

But we don't know what went on at Boston. Because not only are they bound by HIPAA and COBRA acts, but they've complied with the gag order. Everything has come from the parents.

Secret courts and gag orders is no way to run a free country. If they have evidence she was being harmed they need to charge the parents with a crime.

Normally if a minor is a victim of a crime, they will do what they can to minimize identifying the minor and will limit what they tell the press.


They should do that at all times anyway.

accused =\= guilty

private =\= public


Pretty much 90% of all modern journalism would disappear overnight if we actually had ethics.
 
2014-02-25 10:20:31 PM
Dr. Mark Korson, chief of metabolism at Tufts, is an expert on the subject and made the mitochondrial diagnosis.

he was ignored entirely by BCH. At one point BCH recorded that she had never had any diagosis despite being under his direct care.


somatoform disorder is an outdated, blanket diagnosis no longer used in current psychological evaluation or psychiatric care. it means, literally, "you feel stuff that isnt real".

She hasnt gotten better despite being locked up away from family for a year.

Gee. Tough one.
 
2014-02-25 10:26:26 PM

hardinparamedic: Until the last three weeks, the only news outlets regularly carrying this story have been

NaturalNews and it's affiliates, Glenn Beck and TheBlaze, and several right wing blogs. That's what I meant.


BTW - Although I agree it is a nutty conspiracy site, when did a holistic medicine website become a "right-wing" site?  As far as I knew it is a 50/50 mix of anti-vaxxer anti-GM holistic crystal-healer types (decidedly left-wing), and anti-pharmaceuticals, anti-government conspiracy theories.  (non-partisan just plain whackiness).  A quick google tells me the founder and the website endorse the Canary Party, and the Green party.
 
2014-02-25 10:33:57 PM

kling_klang_bed: Well, considering mitochondria is the engine of cells, that supplies energy, it'd seem highly unlikely any living thing on this earth could survive that. And for it to be psychosomatic would be extremely unlikely, unless your mind has the power to highjack a primordial part of your cells. Just sayin'!


You quite literally have no idea what you're talking about, do you?
 
2014-02-25 11:04:32 PM

justtray: Over in two.

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

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


You mean like the doctors at Tufts?

/RTFA. Sounds like there's a medical pissing contest going on with this girl and her family in the middle.
 
2014-02-25 11:16:03 PM
bborchar:

Children's has portraid them in a negative light since day one when the parents insisted on a feeding tube for her nutrition. Since then they, and DCF, have painted them negatively. It got off to a

None of which has anything to do with their subsequent belligerent behavior.  They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.  I have two chronic diseases that require daily medication and if I wouldn't have taken my medical supplies in with me when visiting my daughter.  If they TRULY wanted their daughter back at home with them, they would have bent over backwards to do what they had to do.  That's what any rational parent would do...but they are doing everything they can not to get their daughter back, but to drum up sympathy for their situation.  Whatever is wrong with the girl, I hope they can help her...but I don't think her parents are necessarily capable of making the right decisions for her, either.

Oh bull. They told the parents she didn't need a feeding tube and ended up with egg on their face. That was how the situation escalated to begin with. The parents, the medical staff from Tuffs, and a specialist in California repeatedly asked for outside opinions and where denied.  Denied for what reason? Good question, nobody knows and there is no logical answer to deny other evaluations. DCF has kept medical information from the courts deliberately. Why? This same Doctor and his team that pushed for this diagnosis have done so in the past regardless of how loose the diagnosis considered in the medicinal world.

"If they TRULY wanted their daughter back" Are you even a parent? I certainly hope not.
Who in their right mind would knowingly sign a binding agreement saying they can not take their child to a medical facility that has been successfully treating said child and must adhere to set rules that conflict with the child's welfare?  The girl was successfully being treated at Tuffs and was sent to Children's to see a specialist for examination of her intestines. Within three days she was diagnosed by a psychiatrist and never even saw the Doctor she was supposed to see. Next thing the parents find out is she never saw the Doctor she was supposed to see, they opened a case with the DCF, ANY opinion outside of Children's was not welcomed and they where not allowed to take their daughter anywhere else for treatment.

Now, to present day, how many non-answers, bs excuses, lack of answers, lies and general political bs can any average American take in one year?
 
2014-02-25 11:22:05 PM
The diagnosis will be confirmed by autopsy.
 
2014-02-25 11:23:39 PM

willfullyobscure: Dr. Mark Korson, chief of metabolism at Tufts, is an expert on the subject and made the mitochondrial diagnosis.

he was ignored entirely by BCH. At one point BCH recorded that she had never had any diagosis despite being under his direct care.


somatoform disorder is an outdated, blanket diagnosis no longer used in current psychological evaluation or psychiatric care. it means, literally, "you feel stuff that isnt real".

She hasnt gotten better despite being locked up away from family for a year.

Gee. Tough one.


And the DCF deliberately excluded his reports, diagnosis and all Tuffs medical records from their reports to the Judge assigned to the case. That on its own should be scrutinized and reviewed by the courts.
 
2014-02-25 11:26:27 PM
huh?
 
2014-02-25 11:26:45 PM

Thunderpipes: All power to the state! Individuals have no rights! Woo hoo! Liberalism!

Liberal Vermonters just got a 2 year old killed because they gave her back to a mom that previously broke her leg. Here the state won't even let a second opinion be heard?

Maybe we should let the government take care of everything, they are so good at it.


So when doctors suspect child abuse and act to keep a child from being abused it's the evil governments fault?

I have an idea, how about we hire more and better trained workers who can actually do their job instead of kneecapping them with tax cuts for the 1% and then complaining that they just can't do anything right?
 
2014-02-25 11:30:31 PM

Greek: justtray: Over in two.

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

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

You mean like the doctors at Tufts?

/RTFA. Sounds like there's a medical pissing contest going on with this girl and her family in the middle.


The physiatrist who pushed for the diagnosis refuses to admit he could be wrong and it's not the first time either. I sincerely hope he, and his "team" that pushed for this and refused to hear any and all objective reasons, should be barred from medicine for life. Course politics won't allow it.
 
2014-02-25 11:32:30 PM

justtray: Over in two.

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

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


Things like a diagnosis from a different medical center?
 
2014-02-25 11:33:42 PM

nyseattitude: bborchar:

Children's has portraid them in a negative light since day one when the parents insisted on a feeding tube for her nutrition. Since then they, and DCF, have painted them negatively. It got off to a

None of which has anything to do with their subsequent belligerent behavior.  They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.  I have two chronic diseases that require daily medication and if I wouldn't have taken my medical supplies in with me when visiting my daughter.  If they TRULY wanted their daughter back at home with them, they would have bent over backwards to do what they had to do.  That's what any rational parent would do...but they are doing everything they can not to get their daughter back, but to drum up sympathy for their situation.  Whatever is wrong with the girl, I hope they can help her...but I don't think her parents are necessarily capable of making the right decisions for her, either.

Oh bull. They told the parents she didn't need a feeding tube and ended up with egg on their face. That was how the situation escalated to begin with. The parents, the medical staff from Tuffs, and a specialist in California repeatedly asked for outside opinions and where denied.  Denied for what reason? Good question, nobody knows and there is no logical answer to deny other evaluations. DCF has kept medical information from the courts deliberately. Why? This same Doctor and his team that pushed for this diagnosis have done so in the past regardless of how loose the diagnosis considered in the medicinal world.

"If they TRULY wanted their daughter back" Are you even a parent? I certainly hope not.
Who in their right mind would knowingly sign a binding agreement saying they can not take their child to a medical facility that has been successfully treating said child and must adhere to set rules that conflict with the child's welfare?  The girl was successful ...


Way to cross the line, a$$hat.  Yes, I am a parent, actually, and AS a parent, I'm looking at what these people are doing and it makes NO SENSE.  None.  If they think their child is being mistreated so damn badly, then why on earth would they do EVERYTHING in their power to ensure their child stays in the custody of the people they feel are purportedly killing her?  When your child is taken from you, you do what you are told in order to get her back.  Period.  It doesn't matter if you are right or wrong, you do what you have to do to get her back.  I don't know what's wrong with her, and I'm not even going to speculate...there isn't enough reliable information in any of these stories to even make a guess, but I'm simply looking at the behavior of the parents, and the mother especially, and I'm not seeing people who are acting in the best interest of the child.  They are doing absolutely everything they aren't supposed to do in this situation.  Just because the mother demanded a feeding tube and the kid ended up needing a feeding tube later doesn't mean that the mother suddenly has more medical knowledge than the doctor and isn't enough of a reason for ANY doctor to rip a child away from a family...this whole conspiracy nonsense is ridiculous.  The hospital, doctors, nurses, social workers, DA and judge weren't all 'in this' to make the hospital look good and the parents look bad...they parents have made themselves look bad and whatever the child's actual condition may be, the parents probably aren't fit to take care of her in the present circumstances.

Now, do you want to call CPS because I happen to have an opinion that doesn't agree with yours?
 
2014-02-25 11:35:13 PM

LowbrowDeluxe: Almost every time we've ever had a case anywhere similar to this we get a couple of days of OMG OUTRAGE HOW DARE THEY DOWN WITH THIS SORT OF THING and then it turns out the parents are giant humungous massive scumbags of one order or another.


As someone who has frequently been either a public servant or involved in the medical field, I can say this without reservation:

Always doubt the story the claimant/litigant is making in the media.

Although none of my own clients have been in the media, clients of my departments or companies have and there has literally not been a single case where the client has not twisted the story, omitted pertinent facts, or outright lied.

And it is endlessly frustrating that we are totally unable to correct the facts or defend ourselves because of privacy laws, we just have to put up with the resultant abuse from other clients.  The media will say "we contacted the company/department but they declined to comment" and treat that as "fact checking".  Of course we declined to comment, we're legally unable to do so in any meaningful manner!

I would 100% be in support of changing privacy laws so that if a person goes to the media with a complaint, the subject of the complaint is allowed, through some form of tribunal process, to release information to correct or clarify the story.
 
2014-02-25 11:38:10 PM
there is such a thing as Munchausen by Proxy but I though it was usually perpetrated by the mom or other female caregiver. Not both the mom & dad.

The kid was fine until after having the flu, isn't the flu sometimes a trigger for disorders?

BTW if my hypothetical sick kid was taken away from me for over a year and the court ruled that the kid was going to be stashed away in a non-medical facility, I might faint or shout as well.

\just sayin'
 
2014-02-25 11:39:51 PM

squirrelflavoredyogurt: Thunderpipes: All power to the state! Individuals have no rights! Woo hoo! Liberalism!

Liberal Vermonters just got a 2 year old killed because they gave her back to a mom that previously broke her leg. Here the state won't even let a second opinion be heard?

Maybe we should let the government take care of everything, they are so good at it.

So when doctors suspect child abuse and act to keep a child from being abused it's the evil governments fault?

I have an idea, how about we hire more and better trained workers who can actually do their job instead of kneecapping them with tax cuts for the 1% and then complaining that they just can't do anything right?


"Child abuse" in Mass is a highly sensitive topic. A few cases where blatantly ignored a while back and since then it turned into a "zero tolerance" policy. If you don't report it and something was/is wrong you are in a lot of trouble so now anyone, even anonymously, can report it. That turns it into a legal liability and nobody wants to be sued over it. The "zero tolerance" policy puts everyone, schools, medicinal, athletics and anyone you can imagine on the edge. In all reality you could report someone over a "gut feeling" and the guardians or parents are guilty until proven innocent.
 
2014-02-25 11:42:38 PM
So why haven't the parents been arrested yet? I mean, if the government says they've done something so bad to have the child removed from their custody, then why wouldn't they charge the parents with the crime?
 
2014-02-25 11:53:56 PM
Bborchar

Are you even a parent? I certainly hope not.


Way to cross the line, a$$hat.

Two things.

First and foremost, I apologize for saying that. Not for questioning you, but for saying "I certainly hope not".  I said it in haste, I regret saying it and I'm sorry I did. If I could rescind my comment I certainly would.

Second, that was all of your reply I read and felt the need to apologize immediately. Give me a moment or two and I'll read the rest. I am on a mobile device and it's cumbersome on fark so please bear with me.
 
2014-02-25 11:54:52 PM

czetie: kling_klang_bed: Well, considering mitochondria is the engine of cells, that supplies energy, it'd seem highly unlikely any living thing on this earth could survive that. And for it to be psychosomatic would be extremely unlikely, unless your mind has the power to highjack a primordial part of your cells. Just sayin'!

You quite literally have no idea what you're talking about, do you?


Per chance I do, from a theoretical standpoint (which is the rock I'm standing on). And to say I quite literally don't know what I'm talking about would perhaps would also say I'm talking from a metaphorical point of view? Please learn what 'quite literally' means before you use it, thanks. Thank you, drive through! :-)
 
2014-02-25 11:59:08 PM

Egalitarian: stashed away in a non-medical facility


Boston Children's is non-medical now? Huh.
 
2014-02-26 12:03:34 AM

bborchar: When your child is taken from you, you do what you are told in order to get her back. Period. It doesn't matter if you are right or wrong, you do what you have to do to get her back.


This is victim blaming.  Your energy is being directed at the wrong party.

I cant imagine what I would do if my child was taken from me.  And if my child were being harmed....well, the last thing the abductors would want to do is remove any reason to restrain myself.
 
2014-02-26 12:34:26 AM

The My Little Pony Killer: Egalitarian: stashed away in a non-medical facility

Boston Children's is non-medical now? Huh.


From TFA: (I know, reading is hard)

Family court Judge Joseph Johnston has sent Justina to Shared Living Collaborative in Merrimac, a non-medical facility run by the state, according to the family.
 
2014-02-26 12:48:23 AM

legion_of_doo: mongbiohazard: It's a genetic disease... isn't there a test for this which could clear the whole thing up? I mean, instead of guessing as to whose diagnosis is the accurate one can't we just use science? Is there no test for a mitochondrial disease?

Mitochondria are remnants of our ancient microbial past. They are symbionts with their own genetics.

The mitochondrial DNA is fully inherited from the egg producer (i.e. the one with the womb and vajayjay). People can and do sequence that DNA.

That being said, it totes be decades since i took genetics. To say people fully understand the code would be kind of a big assumption, though. Even if the kid doesnt have a disease on the list doesnt prove a lack of disease.


I work in a lab that focuses on mitochondria.  It's shown that 1 in 5000 people have a genetic mitochondrial defect involved energy generation; it's estimated that 1 in 2000, maybe more, people do.  Mitochondrial DNA encodes for 45 genes; mitochondria have over one thousand proteins.  The vast majority of proteins in mitochondria are found on nuclear DNA, and we've had a really rough time tracking down which genes are critical.  Recent work has elucidated a lot of the genes involved, but we're finding new ones regularly.

Mitochondrial disease is special.  Most doctors aren't trained in it; it isn't something covered in most general medical doctor courses.  Patients are special; most have good days and bad days, they deal with a lifetime of attempted treatments, no cures, and no treatments that alleviate all of the symptoms.  They struggle to have the basic energy to live, and this results in a wide range of symptoms that can change over time.  Parents who have kids with mito diseases have a new set of problems:  No one knows what mito disease is, including many doctors, so they constantly have to explain why their snowflake needs special food, or needs a nap regularly, or why they're in a wheelchair today and walking tomorrow.  I've spoken to parents who have had difficulty getting their kid discharged when hospitalized while traveling.  Hospitalization is a regular situation for these kids, but their normal isn't our normal, so the parents can have problems discharging a 'sick' child.

That said, I haven't worked with MitoAction (just UMDF) as far as patient advocacy groups go, so I don't know how reliable they are.  Part of me hopes these parents are bad parents, because I'd like to think the courts could figure this out.  If this kid really has mito, it shouldn't be hard to get specialist doctors to testify or at least provide a statement. And if the kid does have mito, treatment is vital.
 
2014-02-26 12:49:23 AM

bborchar: nyseattitude: bborchar:

Children's has portraid them in a negative light since day one when the parents insisted on a feeding tube for her nutrition. Since then they, and DCF, have painted them negatively. It got off to a

None of which has anything to do with their subsequent belligerent behavior.  They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.  I have two chronic diseases that require daily medication and if I wouldn't have taken my medical supplies in with me when visiting my daughter.  If they TRULY wanted their daughter back at home with them, they would have bent over backwards to do what they had to do.  That's what any rational parent would do...but they are doing everything they can not to get their daughter back, but to drum up sympathy for their situation.  Whatever is wrong with the girl, I hope they can help her...but I don't think her parents are necessarily capable of making the right decisions for her, either.

Oh bull. They told the parents she didn't need a feeding tube and ended up with egg on their face. That was how the situation escalated to begin with. The parents, the medical staff from Tuffs, and a specialist in California repeatedly asked for outside opinions and where denied.  Denied for what reason? Good question, nobody knows and there is no logical answer to deny other evaluations. DCF has kept medical information from the courts deliberately. Why? This same Doctor and his team that pushed for this diagnosis have done so in the past regardless of how loose the diagnosis considered in the medicinal world.

"If they TRULY wanted their daughter back" Are you even a parent? I certainly hope not.
Who in their right mind would knowingly sign a binding agreement saying they can not take their child to a medical facility that has been successfully treating said child and must adhere to set rules that conflict with the child's welfare?  The girl ...


Due to fark limitations on mobile devices I can not respond to you without your comments being cut off. I'm on my ipad not my desktop.

This is a local "situation" to me and I've let that get the better of me I suppose. There are many situations, discussions and evidence that indicate the hospital, DCF and the State are are in the wrong yet they are unwilling to admit so in any way shape or form. With the parents having their child detained for over a year it's easy to paint them as troublesome or any other similar adjective. That's what politicians do and if you are anywhere near Boston and in a significant, or possibly a significant, role then politics are involved. Hands down, politics are involved. Children's doesn't have a PR campaign and marketing department for the hell of it.
Here, on a blog, we can agree that you do what you need to do to get your child back. How ever things are quite different when sitting in a room with a legally binding agreement that will incarcerate you for bringing your child to a facility that has proven to better the welfare of your child.

Honestly if it where me...   I would have had my firm on these people from day one and I would have tripled down on law firms. These people can't and they have to deal with the ugly side of things. From the start they have been dealt a stacked deck and they are dealing with it the best they can on their own despite being far out of their league. We all know it's very difficult for one to "battle" large institutions and government agencies.

I had to copy and paste my previous reply. Hope you saw it.
I'm very sorry I said that. Not only do I feel horrible about saying it I'm embarrassed and regretful for even thinking it. It simply wasn't just or called for and I'd like to offer my apology again. I wish the best for you and your family.

Goodnight
 
2014-02-26 01:13:14 AM

nyseattitude: bborchar: nyseattitude: bborchar:

Children's has portraid them in a negative light since day one when the parents insisted on a feeding tube for her nutrition. Since then they, and DCF, have painted them negatively. It got off to a

None of which has anything to do with their subsequent belligerent behavior.  They lost visitation rights when the mom inexplicably took needles into her daughter's room...and the excuse for it (diabetes) was flimsy at best.  I have two chronic diseases that require daily medication and if I wouldn't have taken my medical supplies in with me when visiting my daughter.  If they TRULY wanted their daughter back at home with them, they would have bent over backwards to do what they had to do.  That's what any rational parent would do...but they are doing everything they can not to get their daughter back, but to drum up sympathy for their situation.  Whatever is wrong with the girl, I hope they can help her...but I don't think her parents are necessarily capable of making the right decisions for her, either.

Oh bull. They told the parents she didn't need a feeding tube and ended up with egg on their face. That was how the situation escalated to begin with. The parents, the medical staff from Tuffs, and a specialist in California repeatedly asked for outside opinions and where denied.  Denied for what reason? Good question, nobody knows and there is no logical answer to deny other evaluations. DCF has kept medical information from the courts deliberately. Why? This same Doctor and his team that pushed for this diagnosis have done so in the past regardless of how loose the diagnosis considered in the medicinal world.

"If they TRULY wanted their daughter back" Are you even a parent? I certainly hope not.
Who in their right mind would knowingly sign a binding agreement saying they can not take their child to a medical facility that has been successfully treating said child and must adhere to set rules that conflict with the child's welfare?  ...


I appreciate it, sorry if I got upset.  I have been on both sides of the 'doctors are idiots/doctors are great' debate.  My daughter was born with a birth defect (a patent urachal remnant) which required surgery, and when I first brought up my concerns to the nurses at the pediatrician's office, I was brushed off with the "oh, it's normal" bit and the "over-protective new mother" routine.  It wasn't diagnosed until she was a month old and I went to a different doctor, who immediately realized what it was and sent us to the hospital immediately for tests.  I was also concerned about my son's lack of progress when he was a year and a half old, and even though I had friends and family members tell me that I was worried over nothing, I went ahead and had him tested, and sure enough, he had a speech delay.  So I know what it's like to be thought of as the 'overbearing parent', and I know that, as a parent, I would do anything to make sure my child was taken care of.  So, first and foremost, I just want this child to get the help she needs, whether it is psychiatric, medical or both.  I'm not given to conspiracy theories, and as we've only heard the parents' side of the story, it's very easy to see that they believe they are being railroaded.  Now, that very well could be true, but I don't believe I am victim blaming when I read some of the stuff they have done that just sets off my internal alarm bell.   I would be mad as hell if the state tried to take my child...but I also know that I wouldn't do anything that might jeopardize my chance of getting her back (like bring needles into a psych ward when visiting her).  Personally, I think that even if the parents aren't making it up, they aren't necessarily acting in her best interest at the moment with some of their behavior and another person (a neutral party) should be in charge of the child's welfare- someone without bias.  Get another opinion from other doctors, compare how the child is doing with how she was before.  I don't think she should be permanently be taken from her family, but I don't know if her parents are the ones who should be in charge of her welfare at this time.  Basically, my first thoughts go to 'what is best for the child' and not so much 'what is best for the parents' or 'what is best for the doctors' in this situation.  Hopefully, that's what they are thinking, too.
 
2014-02-26 01:46:04 AM
They won't let the family take care of her because she was brain dead, now mostly dead. Every week, the parents get to see an embalmed corpse in a viewing area of a specially set up backroom in a mortuary.

The parents themselves are under court-ordered psychiatric watch, but cannot be confined against their wills as long as they are non-violent.

The parents see their child getting worse because the body is slowly decaying.
 
2014-02-26 02:25:40 AM
willfullyobscure: somatoform disorder is an outdated, blanket diagnosis no longer used in current psychological evaluation or psychiatric care. it means, literally, "you feel stuff that isnt real".

Um, what?

Somatoform Disorder is included in the DSM-V
 
2014-02-26 02:27:21 AM

Prometheus_Unbound: The My Little Pony Killer: Egalitarian: stashed away in a non-medical facility

Boston Children's is non-medical now? Huh.

From TFA: (I know, reading is hard)

Family court Judge Joseph Johnston has sent Justina to Shared Living Collaborative in Merrimac, a non-medical facility run by the state, according to the family.


It really is, isn't it?
 
2014-02-26 02:28:50 AM

ThrobblefootSpectre: hardinparamedic: Until the last three weeks, the only news outlets regularly carrying this story have been NaturalNews and it's affiliates, Glenn Beck and TheBlaze, and several right wing blogs. That's what I meant.


BTW - Although I agree it is a nutty conspiracy site, when did a holistic medicine website become a "right-wing" site?  As far as I knew it is a 50/50 mix of anti-vaxxer anti-GM holistic crystal-healer types (decidedly left-wing), and anti-pharmaceuticals, anti-government conspiracy theories.  (non-partisan just plain whackiness).  A quick google tells me the founder and the website endorse the Canary Party, and the Green party.


NaturalNews is run by Mike Adams, a "FARK Libertarian", "FARK Independant" 9/11 conspiracy theorist who makes Alex Jones look sane and balanced. He's also an "ex"-scientologist who thinks they're given an unfair rap by the internet.
 
2014-02-26 03:10:38 AM

Wake Up Sheeple: They won't let the family take care of her because she was brain dead, now mostly dead. Every week, the parents get to see an embalmed corpse in a viewing area of a specially set up backroom in a mortuary.

The parents themselves are under court-ordered psychiatric watch, but cannot be confined against their wills as long as they are non-violent.

The parents see their child getting worse because the body is slowly decaying.


Um did you even read the article this has nothing to do with Jahi McMath? This is a completely different situation in a completely different state.
 
2014-02-26 03:26:02 AM

CRtwenty: Wake Up Sheeple: They won't let the family take care of her because she was brain dead, now mostly dead. Every week, the parents get to see an embalmed corpse in a viewing area of a specially set up backroom in a mortuary.

The parents themselves are under court-ordered psychiatric watch, but cannot be confined against their wills as long as they are non-violent.

The parents see their child getting worse because the body is slowly decaying.

Um did you even read the article this has nothing to do with Jahi McMath? This is a completely different situation in a completely different state.


Huh? Why'd you bring up Jahi McMath?
 
2014-02-26 04:00:43 AM
Hmm... "sent on a referral to a GI specialist", that suddenly gets switched for a psych smells similar to tactics I've personally seen psychs use to get a required 2nd opinion for a involuntary hold.

The doctors at Tufts could have noticed something that suggested Münchausen by proxy, but didn't want to act on it on their own and request the assistance and 2nd opinion of another facility (BCH). The "referral" is then just a cover to get the kid to the other hospital.

Even if they had their own psych facilities (no idea what they are equipped for), they might have wanted an entirely new set of doctors to independently verify tha serious nature of a Münchausen accusation. This is speculation, of course, but it would explain a "disagreement" between the facilities and would be consistent with tactics used by psychs.
 
2014-02-26 05:00:39 AM

Wake Up Sheeple: CRtwenty: Wake Up Sheeple: They won't let the family take care of her because she was brain dead, now mostly dead. Every week, the parents get to see an embalmed corpse in a viewing area of a specially set up backroom in a mortuary.

The parents themselves are under court-ordered psychiatric watch, but cannot be confined against their wills as long as they are non-violent.

The parents see their child getting worse because the body is slowly decaying.

Um did you even read the article this has nothing to do with Jahi McMath? This is a completely different situation in a completely different state.

Huh? Why'd you bring up Jahi McMath?


The girl in tfa isn't brain dead.
 
2014-02-26 05:12:35 AM
Religious - check
hard to diagnose disease - check
attention whore mother - check
statement that the entire medical profession is wrong and colluding against them - check

I`m calling fake on this one.
 
2014-02-26 06:19:05 AM

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

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

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

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

The average person lacks the basic educational foundation and knowledge of medicine to put that together. I can take the symptoms of flu to WebMD and plug them in.  That doesn't mean I have pancreatic cancer.




In my experience, the average doctor isn't much better. The parents in this case sound like loud and obnoxious assholes but I'm not sure that makes them wrong. One article linked here mentioned the psychiatrist who pushed hard for the current diagnosis has had a child removed from parents because of the same diagnosis on the past.

I'm curious to see what happens after the girl is transferred to another hospital. One article suggested the disorder her parents claim she has occurs in 1 in 2000 people, which puts it about on par with narcolepsy from some of the numbers I've seen. And I've had a hell of a time with doctors not having a clue what they're doing or how to diagnose it. One sleep specialist thought I had to have sleep apnea and that narcolepsy involved falling down and sleeping attacks (when cataplexy and sleep attacks are different things and I've heard maybe one account of them occurring together). Hell, the doctor who did my sleep study wouldn't initially diagnose me with narcolepsy even though I met the diagnostic criteria at the time (sleep latency under 10 minutes with 3 sleep onset REM periods or whatever they call that during the MSLT) because my sleep latency wasn't quite short enough to him and because I didn't have full-on collapses from cataplexy (he only considered the full body collapse type to be cataplexy).

I hope the girl's okay but my experience as someone with a difficult case of a rare disorder (and probably a form not really established yet), I find it hard to have faith that the children's hospital is most likely doing everything right.

/current internist is treating me with hypersomnia as a label
//do have all the classic and specific narcolepsy symptoms, but also sleep drunkenness and long sleep time which aren't typical
///would kill to get into a study and take flumazenil since none of the stimulant-related meds have worked without shredding my working memory
 
2014-02-26 06:21:34 AM
I bet it's Lupus.
 
2014-02-26 06:33:59 AM

kling_klang_bed: And to say I quite literally don't know what I'm talking about would perhaps would also say I'm talking from a metaphorical point of view? Please learn what 'quite literally' means before you use it, thanks. Thank you, drive through! :-)


No, it would mean you're speaking from a completely ignorant point of view. You don't know what you're talking about. Literally. Please learn what English means before you use it, thanks.
 
2014-02-26 07:17:54 AM
Hmmm, so the girl is essentially being diagnosed with Munchhausen by proxy, in that her parents are suspected of convincing her she has a terrible non-existent illness. And then, when her mother heard the verdict of the hearing, she went into "shock" and needed to be carried away in a stretcher for no apparent reason.

Yeah. I'm thinking the doctors may have gotten this one right.
 
2014-02-26 07:25:43 AM

TheBeastOfYuccaFlats: From the stories I've been told via my super intelligent doctor friend, the number of "weird illnesses" in children that are actually some combination of Munchhausen Syndrome by Proxy and psychosomatic illness is surprisingly high.


Damn... right off the bat.  I have a lengthy CSB that I just don't have time to type.  Short story is that I have a son that had some issues where my now ex-wife doctor shopped until she found a doctor that diagnosed my son with mitochondrial disorder.  The doctor prescribed about 40 different vitamins and herbs that we had to give to him every single day.  DId I mention this doctor also sold those very same vitamins out of his office?  I dutifully gave those pills to my kid, and when I asked him how they made him feel, he said "I feel like I have the flu."  He was 4 when we started.  Meanwhile she was homeschooling him, which really translated to him playing on the computer all day while she surfed facebook to solicit attention about how wonderful she is for getting treatment for her sick little boy.

Sorry the description is rushed, I have to get to work soon.  EIP.

I wonder if the phrase "methylation cycle" was somewhere in the course of the case.  I WISH I could find a doctor that could finally call foul on her, and actually label the Munchausens like it should be.   To this day she screams and shouts how sick of a little boy he is and that I'm a horrible negligent father by not putting him back on his "nutritional protocol".

I now have full custody of the kids, they have improved greatly since they are not around her as much.
 
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