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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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8904 clicks; posted to Main » on 25 Feb 2014 at 6:47 PM (26 weeks ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2014-02-25 08:08:17 PM

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


If I'm wrong, I'm happy to admit I'm wrong. I'm not involved in the girls care, and I really don't have a dog in the fight other than to argue with someone over the internet.

But I'm not going to side with the girl's parents based on one-sided information, especially from questionable sources in the matter (Liberty Counsel). I'm far more apt to believe Boston Children's because there is not a really good explanation or independent evidence for why not to, and they have a larger and world-renown IEOM team at the hospital there.

Part of me wants the Gag order reversed so we can have all the sides of the story.
 
2014-02-25 08:08:42 PM
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?
 
2014-02-25 08:08:46 PM

beaverfetus: Just to throw some gasoline on the fire/ supply some food for thought:

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

/chick is still probably bonkers
//not as bonkers as her mom


///still not as bonkers as CPS and doctors that will never admit that they made a mistake.
 
2014-02-25 08:10:06 PM
Why would the judge put a gag order in place for this? Why has this dragged out for this long? This isn't Canada. Gag orders are farking stupid especially when apparently it's a battle between two prestigious institutions.

If it was a question of "abuse" then the outcome would have been decided already. But if it's a question of the "science" why are they holding the girl hostage? If the Tufts treatment won't hurt her, then let them treat her. Hell, i think the parents would be happy to still have the same contact restrictions, as long as she's treated at Tufts.

The Liberty Counsel guy being there puts a bad taste in my mouth. Did the family call them in? Is the family religious nutballs? Really, she fainted? Really? Just remove the parents from the argument and let her go back on her previous treatment regimen that was apparently working until she got the flu.
 
2014-02-25 08:11:10 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?


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.
 
2014-02-25 08:13:02 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?


The doctor that called CPS thinks that mitochondrial disease is not a real disease.
 
2014-02-25 08:13:34 PM

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


Suspect him of what?  Giving them cancer?  He's a doctor not a time-traveling super villain.  Mrs. Fletcher on the other hand... well I choose to believe there's actually a lot of murder happening, so much so that an old lady can't pop out to the chemist's without tripping over a corpse.
 
2014-02-25 08:13:56 PM
cache.desktopnexus.com

Really?  I'm the first?

Really?


Christ, I'm old...
 
2014-02-25 08:14:00 PM

badhatharry: The doctor that called CPS thinks that mitochondrial disease is not a real disease.


upload.wikimedia.org

Please cite where he said that.
 
2014-02-25 08:14:14 PM

badhatharry: beaverfetus: Just to throw some gasoline on the fire/ supply some food for thought:

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

/chick is still probably bonkers
//not as bonkers as her mom

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


eh, remember no pediatricians like calling CPS, not a one. Ton of work, really depressing, and on occasion it sets of a shiat storm like this. They called because they thought it was in the child's best interest, whether they turn out to be correct or not.
 
2014-02-25 08:15:33 PM

beaverfetus: eh, remember no pediatricians like calling CPS, not a one. Ton of work, really depressing, and on occasion it sets of a shiat storm like this. They called because they thought it was in the child's best interest, whether they turn out to be correct or not.


Don't forget that this is a hospital we're talking about, not an MD's private practice. They usually report suspicions to social work, who get involved and do their own investigation before calling CPS.

This was not one doctor's decision. That's what people seem to be missing here.
 
2014-02-25 08:15:33 PM

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.
 
2014-02-25 08:18:25 PM

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.


What about the number of weird tricks?  Is that high too or is there really just one?
 
2014-02-25 08:19:38 PM

justtray: Mr Boobieser? WTF

#1, post - er


www.theprospect.net

/filter hilarity never gets old...
 
2014-02-25 08:19:49 PM

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.
 
2014-02-25 08:20:26 PM

hardinparamedic: beaverfetus: eh, remember no pediatricians like calling CPS, not a one. Ton of work, really depressing, and on occasion it sets of a shiat storm like this. They called because they thought it was in the child's best interest, whether they turn out to be correct or not.

Don't forget that this is a hospital we're talking about, not an MD's private practice. They usually report suspicions to social work, who get involved and do their own investigation before calling CPS.

This was not one doctor's decision. That's what people seem to be missing here.


you're right in that many people took a long look at this case. At least where I've worked, however it has been the physicians that make the call, and are in a large part saddled with the paper work, and depositions (much of it is medical reporting after all). Social work I'm sure has been closely involved as well
 
2014-02-25 08:22:49 PM
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.

Also, anyone who manages to 'faint' in court isn't doing herself a lot of credit in terms of making me believe her daughter's condition isn't psychosomatic.

Also like 20 people so far have pointed out the sheer # of doctor's likely involved at Boston, and the steps the process goes through from hospital to DHS to investigation before it even reaches this far.

10 gets you 20 this turns out to be another 'omg, the governments stole mah baby because of my medical marijuana card!...and I keep dropping her on her head'
 
2014-02-25 08:23:05 PM

hardinparamedic: badhatharry: The doctor that called CPS thinks that mitochondrial disease is not a real disease.

[upload.wikimedia.org image 300x163]

Please cite where he said that.


That is what the father said. She was sent the Boston Children's to see a gastro doctor. Before he even got to see her she was seen by a young neurologist. He told the father that mito is not real and believed she was being put through many unnecessary medical procedures. Enter CPS. Kid taken away. Gag order put on everyone involved.
 
2014-02-25 08:23:38 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


Yeah, I was reading about this last week on HuffPo.  The older sister has been treated by world class doctors and no one has suspected abuse.  Then when they take the younger daughter to Boston to see a GI doctor, they call a in psychologist instead (while refusing to let the referred GI doctor see her) and then refuse to let the parents take her home.  It's not like they treated her for months, and gradually suspected abuse.  No, they called a psychologist and the state DCF that same morning, without ever having a medical doctor examine her.  (This according to HuffPo stories on her.)

We don't have all the facts, but I have to admit I'm somehow having trouble seeing the reasonableness of the actions taken at Boston.  It doesn't surprise me though the usual cast of political fundies here who have already decided her fate based on their own political views though.    Hopefully we will get more information later, so the rational people on fark could weigh in with a non-nutjob opinion.
 
2014-02-25 08:26:09 PM

badhatharry: That is what the father said. She was sent the Boston Children's to see a gastro doctor. Before he even got to see her she was seen by a young neurologist. He told the father that mito is not real and believed she was being put through many unnecessary medical procedures. Enter CPS. Kid taken away. Gag order put on everyone involved.


Oh. Well, if the father said it, it must be true.

ThrobblefootSpectre: Yeah, I was reading about this last week on HuffPo.  The older sister has been treated by world class doctors and no one has suspected abuse.  Then when they take the younger daughter to Boston to see a GI doctor, they call a in psychologist instead (while refusing to let the referred GI doctor see her) and then refuse to let the parents take her home.  It's not like they treated her for months, and gradually suspected abuse.  No, they called a psychologist and the state DCF that same morning, without ever having a medical doctor examine her.  (This according to HuffPo stories on her.)


All of the news stories about this child have been on right-wing websites until the past few weeks, with nothing from the opposite side of the fence about it. Every bit of information has come from the parents and their lawyers.
 
2014-02-25 08:26:33 PM
It's psychosomatic. You need a lobotomy. I'll get a saw.

/seriously, no C&H reference yet?
 
2014-02-25 08:30:40 PM

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.
 
2014-02-25 08:32:04 PM

hardinparamedic: badhatharry: That is what the father said. She was sent the Boston Children's to see a gastro doctor. Before he even got to see her she was seen by a young neurologist. He told the father that mito is not real and believed she was being put through many unnecessary medical procedures. Enter CPS. Kid taken away. Gag order put on everyone involved.

Oh. Well, if the father said it, it must be true.

ThrobblefootSpectre: Yeah, I was reading about this last week on HuffPo.  The older sister has been treated by world class doctors and no one has suspected abuse.  Then when they take the younger daughter to Boston to see a GI doctor, they call a in psychologist instead (while refusing to let the referred GI doctor see her) and then refuse to let the parents take her home.  It's not like they treated her for months, and gradually suspected abuse.  No, they called a psychologist and the state DCF that same morning, without ever having a medical doctor examine her.  (This according to HuffPo stories on her.)

All of the news stories about this child have been on right-wing websites until the past few weeks, with nothing from the opposite side of the fence about it. Every bit of information has come from the parents and their lawyers.


And they have been charged with contempt of court.
 
2014-02-25 08:33:07 PM

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.
 
2014-02-25 08:33:20 PM

hardinparamedic: All of the news stories about this child have been on right-wing websites until the past few weeks, with nothing from the opposite side of the fence about it. Every bit of information has come from the parents and their lawyers.


Okay, I can't confirm, or deny that.  I only became aware of the story last week on Huffington Post.   While that rag is admittedly sometimes rather distressingly loose with the facts, I would say it is far from right-wing.  I guess I just don't normally visit these right-wing websites you are referring to.
 
2014-02-25 08:34:17 PM

ThrobblefootSpectre: Okay, I can't confirm, or deny that.  I only became aware of the story last week on Huffington Post.   While that rag is admittedly sometimes rather distressingly loose with the facts, I would say it is far from right-wing.  I guess I just don't normally visit these right-wing websites you are referring to.


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.
 
2014-02-25 08:37:38 PM

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.
 
2014-02-25 08:38:05 PM
I get so angry reading articles like this.

I have two daughters with autism. It took a decade to hear the magic words "you need a developmental pediatrician" to get to the right specialist.

Then came the fight with her school.

Almost four years later, her diagnosis is not just accepted by her regular pediatrician, but subsequent evaluations including those done at school are all in agreement.

In 2010, our youngest daughter was diagnosed.at age 4. Our previously-neurotypical son had a tonic clonic seizure a year ago and was diagnosed - through Children's - with Juvenile Myoclonic Epilepsy.

I don't know this family or "what really happened". I think the fact that their child hasn't improved while under 24/7 care of the hospital may or may not matter - I don't know anything about mito disease.

Thank you to the posters who linked to the other articles with more information about this case.
 
2014-02-25 08:38:41 PM
This seems to speak Ill if the silo-ed nature of the various medical enterprises.

Would seem that the orgs should have all the involved Doctors in a sit down to determine root cause. Once that's established we could discuss whose at fault. Parents or Disease.
 
2014-02-25 08:40:02 PM

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


Okay yeah, I am passingly familiar with NaturalNews, and, speaking as a vegetarian and a ecological tree-hugger, I wouldn't trust them with a 10 foot pole.
 
2014-02-25 08:42:43 PM

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

If I'm wrong, I'm happy to admit I'm wrong. I'm not involved in the girls care, and I really don't have a dog in the fight other than to argue with someone over the internet.

But I'm not going to side with the girl's parents based on one-sided information, especially from questionable sources in the matter (Liberty Counsel). I'm far more apt to believe Boston Children's because there is not a really good explanation or independent evidence for why not to, and they have a larger and world-renown IEOM team at the hospital there.

Part of me wants the Gag order reversed so we can have all the sides of the story.


The story I'm getting through the words on the page is that the mother is a holy farking terror, a real combative biatch when it comes to interacting with the cogs in the bureaucracy.

She's been such a biatch that anyone she deals with her at BCH or DCF says "Munchausen by proxy farking too righ, this biatch is crazy" and refuses to deal with her. Hell, the kid has been denied a third opinion that would settle the case because the clinic involved didn't want to deal with the kid or her mother, and the impending legal actions.

That's the whole key here - the diagnosis BCH and DCF are sticking with pins all of the daughter's problems on the mother. The state is basically telling the family that the mother has made such an ass of herself she's been judged unstable and she won't get her daughter back unless she accepts the diagnosis and (presumably) receives treatment for her "problems."

The fact that the kid hasn't improved leads me to believe the original doctor is correct, but as you say we'll see.
 
2014-02-25 08:42:45 PM

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.
 
2014-02-25 08:43:20 PM
Lets shoot the lawyers on both sides, just to be safe.
 
2014-02-25 08:46:06 PM
shlabotnik: plewis: czetie: Does mitochondrial disease prevent her from using the Force?

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

I don't know how you came to get the Bette Davis knees, but worst of all young man you've got Industrial
Mitochondrial Disease.
 
2014-02-25 08:46:09 PM

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

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

//that should clear it up.

Strangely, just by having someone like him involved,it makes me think the hospital is doing the correct thing without any additional information.


You too?  That juciy tidbit, and the complaint by the father that they weren't even letting the girl go to church, makes me think there's more at stake than just midichlorians.
 
2014-02-25 08:54:15 PM
http://www.athenadiagnostics.com

They offer 15 different panels testing mitochondrial disorders.

You're welcome.
 
2014-02-25 08:58:00 PM
OK, I'm going to go WAAAAAAAAAAAAAAAAAAAAAAAAAAY left field here:

upload.wikimedia.org

PS, a disease that'd attack your mitochondria would leave you dead, many times over. So not buying it.
 
2014-02-25 09:02:28 PM

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.
 
pla
2014-02-25 09:03:51 PM
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.
 
F42
2014-02-25 09:08:34 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.


RTFH, then RTFA
 
2014-02-25 09:14:45 PM
I'm pretty sure its Lupus.
 
pla
2014-02-25 09:16:26 PM
bborchar : They are nutjobs because instead of doing whatever they can to get their child back, they are more interested in being proven right.

Umm... So you think they should do anything they can... for the privilege... of getting to watch her slowly die in front of their very own eyes?

They don't think she has a special brand of limp hair, they think she has a treatable, eventually-fatal disease.  Why would they fight to get her back if doing so explicitly required them to not treat her?

That said, in the same situation, I have to admit I'd take your approach - Play nice, get her back... Then take her to a civilized country that doesn't withhold treatment from sick kids.  So maybe you have a point there.  But as far as what they really believe, I'd call their behavior consistent with wanting treatment, not exoneration.


kling_klang_bed: a disease that'd attack your mitochondria would leave you dead, many times over.

Much like a disease that'd attack chickens leaves the world wing-less?

Not all "disease that'd attack X" means "you have no more X".  In fact, most "disease that'd attack X" outright require the continued existence of X in order to continue to exist, making a high fatality rate something of a counterproductive rarity.
 
2014-02-25 09:17:22 PM

hardinparamedic: beaverfetus: eh, remember no pediatricians like calling CPS, not a one. Ton of work, really depressing, and on occasion it sets of a shiat storm like this. They called because they thought it was in the child's best interest, whether they turn out to be correct or not.

Don't forget that this is a hospital we're talking about, not an MD's private practice. They usually report suspicions to social work, who get involved and do their own investigation before calling CPS.

This was not one doctor's decision. That's what people seem to be missing here.


Not in Mass. DCF is called at the drop of a hat. They don't think twice about it and it's over the top here. People are afraid of the ramifications if the don't due to the "what if" scenario.
 
2014-02-25 09:17:43 PM
Ask Meg and Charles Wallace about mitochondrial disease.
 
2014-02-25 09:22:58 PM
Yeah, this article is so full of OUTRAGE that I'm inclined to not take it seriously. Regardless, Children's has my vote, for several reasons:

1. As previously mentioned in this thread, they have a large number of specialists that have certainly evaluated the patient, and a consensus must have been reached for this action to be taken.

2. Regardless of what laypeople think, doctors DO typically want what is best for their patients. One doctor is NOT enough to get a child taken from the parents. Social work is an independent department that takes this very, very seriously.

3. Just because she hasn't improved (per mom, that is) doesn't mean they aren't helping her. She could be much WORSE off if she had not been treated at Children's. The article also says she was in a wheelchair before she came in to Children's, so she hasn't drastically worsened like the article makes it out to be.

4. The fact that she was referred for diagnosis to Children's does NOT mean her condition is non-psychosomatic. It means they aren't sure what's wrong with her. And if Tufts was so sure about their diagnosis, they would not have sent her there in the first place. They can handle GI issues. That's one of the most basic departments in a hospital.
 
pla
2014-02-25 09:25:22 PM
MemeSlave: Ask Meg and Charles Wallace about mitochondrial disease.

You win.
 
2014-02-25 09:26:41 PM

pla: bborchar : They are nutjobs because instead of doing whatever they can to get their child back, they are more interested in being proven right.

Umm... So you think they should do anything they can... for the privilege... of getting to watch her slowly die in front of their very own eyes?

They don't think she has a special brand of limp hair, they think she has a treatable, eventually-fatal disease.  Why would they fight to get her back if doing so explicitly required them to not treat her?

That said, in the same situation, I have to admit I'd take your approach - Play nice, get her back... Then take her to a civilized country that doesn't withhold treatment from sick kids.  So maybe you have a point there.  But as far as what they really believe, I'd call their behavior consistent with wanting treatment, not exoneration.


kling_klang_bed: a disease that'd attack your mitochondria would leave you dead, many times over.

Much like a disease that'd attack chickens leaves the world wing-less?

Not all "disease that'd attack X" means "you have no more X".  In fact, most "disease that'd attack X" outright require the continued existence of X in order to continue to exist, making a high fatality rate something of a counterproductive rarity.


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'!
 
2014-02-25 09:29:32 PM

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


at the hieght of the east coast Crack epidemic, My fair town of little Richmond Virginia wa named the murder capital of the US per capita because of crack and drug related crime. during that same period of time, Jessica Fletchers reign of terror fell apon the poor hamlit of Cabot Cove.

if you compare the murder rate of the two communities during the same time period, the "per capita" rate would have had Cabot cove up in the top five, right along with DC, RVA and NYC in per capita murder..

But Cabot Cove? it was all white on white upper middle aged/middle class, no one ever speaks of such thing in nice communities like that.. but really, the picturesque coastal villages of new england during those times? according to such documantarians as Steven King, jessica Fletcher, ditective columbo?

a farking killing field....

but, white folk arent capable of such things... so, under the rug it was all swept
 
2014-02-25 09:36:09 PM
Here is my take on it, My family and I went through a slightly similar situation with my brother's court case.

To make a long story short, my Mom was about 6 or 7 months pregnant with my brother when she was struck by a hit-and-run driver (who was possibly high on cocaine, we found out later he was a dealer). Since we didn't have Health Insurance at the time (my Dad was a self-employed Doctor*) so we had to go through our auto insurance and asshole's insurance for his care so that resulted in 12 years of court cases.

Here is the thing about health court cases, this case for me can go either way for me.

See, on the one hand someone CAN Doctor-Shop and get any diagnosis you want, HOWEVER, most Doctors will not testify even if you throw money at them, because it's super stressful and a pain in the ass. So while the parents could doctor-shop for a diagnosis, getting even a legit doctor to testify is a huge pain in the ass.

In our case, the insurance companies claimed that my brother's condition *can be* genetic so you can't *prove* that the car accident did anything to his condition.  Getting medical experts to testify was like pulling hen's teeth and it's super-easy to explain super-obscure medial conditions as "in your head" or 'bizarre genetics" (so YOUR FAULT).


/*He is a neo-con who hates both universal healthcare and HMO/Health Insurance Companies (face palm)
 
2014-02-25 09:36:43 PM

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 issue with the feeding tube. The DCF reports have holes in them, have other medical professionals opinions and diagnoses completely omitted from reports to the court and have refused to meet with or hear from other doctors.

Coincidently they had to put her feeding tube in shortly after due to her worsening conditions without it.
 
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