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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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8919 clicks; posted to Main » on 25 Feb 2014 at 6:47 PM (39 weeks ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2014-02-25 06:12:05 PM  
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.
 
2014-02-25 06:13:56 PM  
Oh, and then there's the upsetting prevalence of "there's something wrong with my child" claims that are answered with "well, you can start by not abusing them physically".
 
2014-02-25 06:16:45 PM  
Does mitochondrial disease prevent her from using the Force?
 
2014-02-25 06:19:02 PM  
We are only hearing one side of the story

Before everyone goes apeshiat lets remember that
 
2014-02-25 06:19:43 PM  

TheBeastOfYuccaFlats: Oh, and then there's the upsetting prevalence of "there's something wrong with my child" claims that are answered with "well, you can start by not abusing them physically".


Well if they were normal I wouldn't have to beat them.
 
433 [TotalFark]
2014-02-25 06:28:26 PM  
arlingtonwa.org
 
2014-02-25 06:30:01 PM  

TheBeastOfYuccaFlats: Oh, and then there's the upsetting prevalence of "there's something wrong with my child" claims that are answered with "well, you can start by not abusing them physically".


Related to this, it's not actually terribly easy to get a child taken away from a parent (less easy than it really should be, even in cases when abuse seems obvious), regardless of what some alarmists may say.

It's pretty likely there's a lot more going on here than the parents' "she was fine and now she's a disaster, and it's cuz of her mitochondria" story.
 
2014-02-25 06:36:28 PM  
Mitochondrial Disease...isn't that a Dire Straits tune?
 
2014-02-25 06:37:05 PM  

TheBeastOfYuccaFlats: TheBeastOfYuccaFlats: Oh, and then there's the upsetting prevalence of "there's something wrong with my child" claims that are answered with "well, you can start by not abusing them physically".

Related to this, it's not actually terribly easy to get a child taken away from a parent (less easy than it really should be, even in cases when abuse seems obvious), regardless of what some alarmists may say.

It's pretty likely there's a lot more going on here than the parents' "she was fine and now she's a disaster, and it's cuz of her mitochondria" story.


Yup.  And, because of HIPAA (and a gag order imposed by the judge in this case), the hospital & state can't explain what's going on, leaving the parents' story as the only one getting any publicity.
 
2014-02-25 06:38:37 PM  

Barfmaker: Mitochondrial Disease...isn't that a Dire Straits tune?


Still not as good as "Brothers in Arms" though.
 
2014-02-25 06:50:00 PM  
Yeeeah, I'm gonna go ahead and guess that this hospital wouldnt be inclined to go through the hellish process of removing a child from their parents custody and receive all the obvious negative publicity just because they felt like stirring the pot.
 
2014-02-25 06:50:53 PM  

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


I was going to say "why doesn't she just force choke her way out of it"...
 
2014-02-25 06:51:48 PM  

cman: We are only hearing one side of the story

Before everyone goes apeshiat lets remember that


2 sets of doctors, 2 different opinions. Instead of state sanctioned kidnapping, how about a tiebreaker first.
 
2014-02-25 06:53:05 PM  

El_Perro: TheBeastOfYuccaFlats: TheBeastOfYuccaFlats: Oh, and then there's the upsetting prevalence of "there's something wrong with my child" claims that are answered with "well, you can start by not abusing them physically".

Related to this, it's not actually terribly easy to get a child taken away from a parent (less easy than it really should be, even in cases when abuse seems obvious), regardless of what some alarmists may say.

It's pretty likely there's a lot more going on here than the parents' "she was fine and now she's a disaster, and it's cuz of her mitochondria" story.

Yup.  And, because of HIPAA (and a gag order imposed by the judge in this case), the hospital & state can't explain what's going on, leaving the parents' story as the only one getting any publicity.


Gag order should be illegal. What jury is being tainted?
 
2014-02-25 06:53:06 PM  
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.
 
2014-02-25 06:53:43 PM  
Tuft luck kid.
 
2014-02-25 06:53:49 PM  

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

Before everyone goes apeshiat lets remember that

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


Two doctors enter, one doctor leaves.

Thunderdome!
 
2014-02-25 06:54:35 PM  
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.
 
2014-02-25 06:54:43 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.


Who would continue to live in the town that Murder She Wrote lived in?  At least there was an explanation for why people continued to live in Sunnydale.
 
2014-02-25 06:55:24 PM  
I'm useless
But not for long
My future
Is goin on
Is goin on
Is goin on
 
2014-02-25 06:55:58 PM  

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

Before everyone goes apeshiat lets remember that

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


Hell in a Cell...?
 
2014-02-25 06:56:06 PM  

wyltoknow: Yeeeah, I'm gonna go ahead and guess that this hospital wouldnt be inclined to go through the hellish process of removing a child from their parents custody and receive all the obvious negative publicity just because they felt like stirring the pot.


And the other hospital was just doing procedures on the girl for shiats and giggles? One hospital good, other bad? Based on?
 
2014-02-25 06:56:56 PM  

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

Before everyone goes apeshiat lets remember that

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

Hell in a the Cell...?


*womp womp*
 
2014-02-25 06:58:49 PM  
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.
 
2014-02-25 06:59:01 PM  
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.
 
2014-02-25 06:59:34 PM  

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

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

//that should clear it up.


Strangely, just by having someone like him involved,it makes me think the hospital is doing the correct thing without any additional information.
 
2014-02-25 07:01:23 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.


And they keep trying to try it in the press.  That's always a bad sign.
 
2014-02-25 07:01:35 PM  

TheBeastOfYuccaFlats: Oh, and then there's the upsetting prevalence of "there's something wrong with my child" claims that are answered with "well, you can start by not abusing them physically".


How about mental abuse and belittling them? Is that okay?
 
2014-02-25 07:02:36 PM  
SHE JUST WANTED A PEPSI.
 
2014-02-25 07:03:41 PM  

MyRandomName: And the other hospital was just doing procedures on the girl for shiats and giggles? One hospital good, other bad? Based on?


If you have a child who is ill, you don't take them to an adult or non-pediatric specialty hospital for anything like a mitochondrial disorder - something that SHOULD be diagnosed only after an expert in genetics, metabolic diseases and/or endocrinology sees the child.

And adult hospitals will, as a rule, overtreat or undertreat a child. Defensive medicine.
 
2014-02-25 07:04:00 PM  

MyRandomName: wyltoknow: Yeeeah, I'm gonna go ahead and guess that this hospital wouldnt be inclined to go through the hellish process of removing a child from their parents custody and receive all the obvious negative publicity just because they felt like stirring the pot.

And the other hospital was just doing procedures on the girl for shiats and giggles? One hospital good, other bad? Based on?


Based upon your hatred for anything government-related I'm gonna go with "you have no idea what actually happened and are just being reactionary as usual"
 
2014-02-25 07:04:03 PM  
More info from the fox news article.... *washes self afterwards*

KELLY: And DCF gets custody taken away from the parents. DCF basically, I mean they -- they basically deferred to Boston Children's. They go in there -- they don't have their own medical experts. They go to the judge and say the people at Boston Children says they're -- you know, basically abusing the girl. Gee, judge that's bad, and the judge says oh yeah, that is bad. Custody to DCF. But the problem is there is a whole medical team at Tufts saying it is not abuse, it's medical treatment based on a disease she has called mito.
But here's the thing I wanna ask you, Matt, because this is what the folks at Boston Children's basically say mito is a crock. That's -- that's -- if it exists, it doesn't exist in this case. And what actually is happening is it is not Justina that has psychological issues, it is the parents. From what I read in the Boston Globe, it's the parents, they used to call it Munchausen by proxy. Where the parent -- the child is not sick, but the parents working out some of his -- or her own and creating illnesses in the child and then getting unnecessary treatments and surgeries for the child.

Looks like Mr Boobieser is the big winner.
 
2014-02-25 07:05:34 PM  
Mr Boobieser? WTF

#1, post - er
 
2014-02-25 07:06:00 PM  

justtray: More info from the fox news article.... *washes self afterwards*

KELLY: And DCF gets custody taken away from the parents. DCF basically, I mean they -- they basically deferred to Boston Children's. They go in there -- they don't have their own medical experts. They go to the judge and say the people at Boston Children says they're -- you know, basically abusing the girl. Gee, judge that's bad, and the judge says oh yeah, that is bad. Custody to DCF. But the problem is there is a whole medical team at Tufts saying it is not abuse, it's medical treatment based on a disease she has called mito.
But here's the thing I wanna ask you, Matt, because this is what the folks at Boston Children's basically say mito is a crock. That's -- that's -- if it exists, it doesn't exist in this case. And what actually is happening is it is not Justina that has psychological issues, it is the parents. From what I read in the Boston Globe, it's the parents, they used to call it Munchausen by proxy. Where the parent -- the child is not sick, but the parents working out some of his -- or her own and creating illnesses in the child and then getting unnecessary treatments and surgeries for the child.

Looks like Mr Boobieser is the big winner.


And that is why people with no training in Science or Medicine should not be engaging in science or medical journalism.

That was painful to read.
 
2014-02-25 07:06:00 PM  
Are they sure she just isn't mentally retarded?
 
2014-02-25 07:08:15 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.


He will be on Glen Beck's show to discuss the case.

//not kidding
 
2014-02-25 07:08:40 PM  

MyRandomName: Gag order should be illegal. What jury is being tainted?


None.  It's for the protection of the child's privacy, to prevent a kid from being the center of a media circus like this.
 
2014-02-25 07:09:00 PM  

Boojum2k: MyRandomName: cman: We are only hearing one side of the story

Before everyone goes apeshiat lets remember that

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

Two doctors enter, one doctor leaves.

Thunderdome!


Cut the kid in two. Parents get half, state gets the other half.
 
2014-02-25 07:10:22 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.


I have to admit the same thing crossed my mind. What the hell is Liberty Counsel doing getting mixed up in a case like this? I'm hardly going to let Boston Children's off the hook, but something smells fishy here.

I also wonder why the Politics tab right-wing usual suspects are weighing in so heavily, though perhaps they're just having the same reaction to Liberty Counsel only in the opposite direction.
 
2014-02-25 07:10:34 PM  
I have a novel idea: she dies due to untreated mitochondrial disease then the judge and doctors at the MA hospital get instant death penalty.
 
2014-02-25 07:11:08 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.


So Tufts is a fake hospital to you. Got it.
 
2014-02-25 07:12:11 PM  

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


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

Tufts is renown for it's Pediatric Trauma history.
 
2014-02-25 07:12:39 PM  

justtray: Mr Boobieser? WTF

#1, post - er


I'm okay with either title ;)
 
2014-02-25 07:13:06 PM  

hardinparamedic: MyRandomName: And the other hospital was just doing procedures on the girl for shiats and giggles? One hospital good, other bad? Based on?

If you have a child who is ill, you don't take them to an adult or non-pediatric specialty hospital for anything like a mitochondrial disorder - something that SHOULD be diagnosed only after an expert in genetics, metabolic diseases and/or endocrinology sees the child.

And adult hospitals will, as a rule, overtreat or undertreat a child. Defensive medicine.


Mitochondrial disease doesn't have different symptoms based on age. Basically your argument is Tuft Hospital is full of shiat doctors. Got it.
 
2014-02-25 07:13:52 PM  
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
 
2014-02-25 07:13:56 PM  
"Boston Children's Hospital reported the Pelletier's to the Massachusetts Department of Children and Families for suspected child abuse in February 2013."

Editor FAIL.
 
2014-02-25 07:14:30 PM  

cameroncrazy1984: MyRandomName: wyltoknow: Yeeeah, I'm gonna go ahead and guess that this hospital wouldnt be inclined to go through the hellish process of removing a child from their parents custody and receive all the obvious negative publicity just because they felt like stirring the pot.

And the other hospital was just doing procedures on the girl for shiats and giggles? One hospital good, other bad? Based on?

Based upon your hatred for anything government-related I'm gonna go with "you have no idea what actually happened and are just being reactionary as usual"


Based on your strawman of my views I will go with your continued ignorance.

Please do tell. What do I have wrong. Tuft was paid by the mother to make up a diagnosis. Do go on.
 
2014-02-25 07:14:32 PM  

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


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

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


My argument is I am apt to believe a center world renown for metabolic disorders versus a center which does not specialize in it. Nothing more, nothing less. Stop putting words in my mouth and attributing them to me, ass.
 
2014-02-25 07:14:33 PM  

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

Before everyone goes apeshiat lets remember that

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


Boston children's is about the size of every other pediatrics division in Massachusetts put together times maybe... 5?

Seriously. That place is massive, their GI/ nutrition department is the largest in the world, so is their genetic division. I'm just saying not all opinions are necessarily equal. Boston Children's is a pretty unique place.  Also given the HIPPA constraints, the doctors are always going to be at a massive PR disadvantage.
 
2014-02-25 07:15:14 PM  
Lou and Linda Pelletier, of West Hartford, Conn., have been fighting for their daughter who they say has mitochondrial disease, a rare genetic disorder with physical symptoms that can affect every part of the body.

Does that sound like arsenic poisoning to anyone else here?
 
2014-02-25 07:15:33 PM  

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

Before everyone goes apeshiat lets remember that

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


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

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

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

Tufts is renown for it's Pediatric Trauma history.


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

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

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

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


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

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


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

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

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

//that should clear it up.


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

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

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

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

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


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

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

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


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

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

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


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

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

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

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

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


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

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

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

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

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

Tufts is renown for it's Pediatric Trauma history.

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


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

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

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

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


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

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

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

3. Can they get a third opinion?

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

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

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


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

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

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

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

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


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

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


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

bborchar: I guess my questions would be:

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

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

3. Can they get a third opinion?

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


Yes
Yes
and Yes.

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

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

justtray: Over in two.

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

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


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

ActionJoe: apparently the daughter has gotten worse.


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

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

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

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

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

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


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

justtray: Over in two.

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

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


WHICH doctors?

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

justtray: bborchar: I guess my questions would be:

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

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

3. Can they get a third opinion?

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

Yes
Yes
and Yes.

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

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


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

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


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

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

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

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


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

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

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


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

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

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

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

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

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

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


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


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

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

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

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

BCH is infallible apparently, but Tufts is wrong.

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

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

Nix Nightbird: their own theory of hypochondria


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

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

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

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


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

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

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

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

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

BCH is infallible apparently, but Tufts is wrong.

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

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


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

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

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


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

static3.wikia.nocookie.net

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

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


Which no one ever said.

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


Which no one ever said.

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


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

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


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

TheBeastOfYuccaFlats: ActionJoe: apparently the daughter has gotten worse.

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

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

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


This.

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

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

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

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

BCH is infallible apparently, but Tufts is wrong.

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

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


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

Is the disorder genetic?

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

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


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

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

Shirley Ujest: 2 bits.

Is the disorder genetic?

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


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

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

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

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

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

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

3. Can they get a third opinion?

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

Yes
Yes
and Yes.

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

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

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


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

The parents are claiming the doctor withheld the results.

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

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

BafflerMeal: Somatoform disorder


Thanks
 
2014-02-25 07:57:27 PM  

hardinparamedic: BafflerMeal: Somatoform disorder

Thanks


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

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

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

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

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

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

This.

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


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

433: [arlingtonwa.org image 315x380]

pretty much this

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

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

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

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

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

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

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

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


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

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

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

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

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

?

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

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

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

justtray: Over in two.

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

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

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

FTFY
 
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.
 
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.
 
2014-02-26 08:05:16 AM  

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

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

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

[static3.wikia.nocookie.net image 220x328]

/Alma Wade is one of those truly scary characters you will always remember.


Jesus dude, that was one of a very few games that scared me. Got some good jump scares from a few of the early Resident Evils (Now I just expect those Goddamn zombie dogs to jump through every window) But Alma....holy fark. Two of the most notable experiences where having her spider-run at me in that dark tunnel and when going down a ladder you turn around, nothing there, look down for a second, and then when you look back up BAM! there she is.
That scene here
 
2014-02-26 09:24:48 AM  
Boston Children's Hospital said in a prepared statement to ABCNews.com earlier this month that they "acknowledge the tremendous efforts of our staff in caring for this patient. We are proud of their work and positive impact on the patient."

Wait, wait, wait.  You snatch a kid away from their parents, remove their medical treatment, and keep them locked away, and this makes you proud?

Worthless shiat stains is what they are.
 
2014-02-26 09:28:26 AM  

MythDragon: washington-babylon: Jument: czetie: Does mitochondrial disease prevent her from using the Force?

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

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

[static3.wikia.nocookie.net image 220x328]

/Alma Wade is one of those truly scary characters you will always remember.

Jesus dude, that was one of a very few games that scared me. Got some good jump scares from a few of the early Resident Evils (Now I just expect those Goddamn zombie dogs to jump through every window) But Alma....holy fark. Two of the most notable experiences where having her spider-run at me in that dark tunnel and when going down a ladder you turn around, nothing there, look down for a second, and then when you look back up BAM! there she is.
That scene here


Thank you! I was looking for that scene. I have to confess, that was enough to make me stop playing for a bit. Scared the crap out of me, especially since I was playing in a darkened room due to a buddy's suggestion. I damn near crawled out of my skin when that scene happened.
 
2014-02-26 09:41:36 AM  
I'm always so leery about the MA DCF.  Between the kids who are not protected when they so obviously should have been, to taking kids away from their parents for very minor things, kids drying in their custody, and then this...

http://bostonherald.com/news_opinion/local_coverage/2014/02/unlicens ed _dcf_approved_therapist_faces_teen_sex_assault

Makes you have such faith that this department really has their stuff together...
 
2014-02-26 09:42:52 AM  

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.


Out of curiosity, do hospitals let inpatients self-administer their own medication? I was under the impression that the hospital takes control of that while the patient is hospitalized to ensure that they can keep complete track of medication administration, but I'm not sure if that's universally applied.
 
2014-02-26 09:44:24 AM  
RavenOnyx:

I have two daughters with autism.

 Our previously-neurotypical son had a tonic clonic seizure a year ago and was diagnosed - through Children's - with Juvenile Myoclonic Epilepsy.


Please stop having kids. You have farked up genetics.
 
2014-02-26 09:51:28 AM  

fiddlehead: 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.

Out of curiosity, do hospitals let inpatients self-administer their own medication? I was under the impression that the hospital takes control of that while the patient is hospitalized to ensure that they can keep complete track of medication administration, but I'm not sure if that's universally applied.


No, especially not psych wards.  They administer all of the medication and watch to make sure that it is taken.  Unauthorized needles in a psych patient's room is about the biggest no-no you can do.
 
2014-02-26 10:07:17 AM  

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.


Inpatient surprises me.  An errant psych diagnosis when you have an unidentifiable medical issue does not.  Since symptoms that don't match a diagnosis usually are psych issues doctors will tend to assume anything they can't identify is psych.
 
2014-02-26 10:26:21 AM  

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

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

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

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

This.

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


Aestatis: 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 t ...


Question:  is there a serious downside to treating the kid for mito, in case the first Tufts doc was on the right track?
 
2014-02-26 10:41:06 AM  

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.

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.


No idea who's at fault here (whynotboth.jpg)  but a federal judge I know had a hardened drug dealer/killer (mid-thirties male, in good shape) pass right out at getting a ten year sentence, so, not really dispositive either way.

Stress does weird things to people, is all I'm saying.
 
2014-02-26 10:44:14 AM  

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

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

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

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

This.

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


The gag orders are almost certainly coming from the judge, because the patient is a minor.
 
2014-02-26 11:13:07 AM  

PunGent: omnimancer28: TheBeastOfYuccaFlats: ActionJoe:

Question:  is there a serious downside to treating the kid for mito, in case the first Tufts doc was on the right track?


That's a very good question, and something that hasn't been addressed here.  Mito encompasses a lot of different diseases, and I don't know which form this kid has.  Even mito diseases with the same name can have very different progressions in different kids.  There are no cures and the treatments are mediocre.   One common theme I've heard from talking to patients is how variable the disease is.  You can be fine for a year or even more, and then relapse back into regular hospital visits.  You can usually walk but you're sometimes stuck with just a wheelchair for getting around.  Interrupting treatment could trigger symptoms, or even make symptoms worse, and it could be that resuming treatment in the future returns them to normal.  Or they could end up stuck with a new normal, even on treatment.

As far as whether treatment is dangerous?  The most common I've heard is a cocktail of antioxidants, vitamins, and other necessary nutrients.  There's a clinical trial right now that shows a lot of promise, though.  It could be she had a feeding tube or other kind of 'support' systems that were more surgical in nature, though, and that kind of invasive practice should be avoided on healthy kids.
 
2014-02-26 12:34:49 PM  

nyseattitude: 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.


Cool story bro. This however wasn't a case of someone with a gut feeling, it was a case of doctors who examined the child. I suppose you have another cool story about doctors aren't qualified to diagnose medical conditions though too right?

Child abuse happens everywhere and sometimes people make mistakes and it isn't caught. This however is exactly not that type of case, it's not a neighbor with a grudge, it's a farking doctor. Doctors in Massachusetts are mandated reporters of suspected child abuse, and aren't allowed to report it anonymously.

http://www.mass.gov/eohhs/consumer/family-services/report-child-abus e. html
 
2014-02-26 01:08:45 PM  

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

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

Tufts is renown for it's Pediatric Trauma history.


Interesting though, that the doc in the case doesn't believe that mito is a real disease.  The world renown hospital has a mito specialist.  More interesting is that her sister also suffers from the disease and has been treated for it.
 
2014-02-26 02:57:13 PM  

BGates: Interesting though, that the doc in the case doesn't believe that mito is a real disease.  The world renown hospital has a mito specialist.  More interesting is that her sister also suffers from the disease and has been treated for it.


People have repeatedly said that, but I have seen nothing from the doctor in question or the hospital on this. Every source that has this as a statement has been from the family themselves.
 
2014-02-26 03:34:12 PM  

hardinparamedic: BGates: Interesting though, that the doc in the case doesn't believe that mito is a real disease.  The world renown hospital has a mito specialist.  More interesting is that her sister also suffers from the disease and has been treated for it.

People have repeatedly said that, but I have seen nothing from the doctor in question or the hospital on this. Every source that has this as a statement has been from the family themselves.


Haven't been able to find a source on whether or not the BCH doc believes mito is real.

For what it's worth, one of the article's I read mentioned that the doctor at BCH that diagnosed her with Munchausen's by proxy had only been practicing medicine for 7 months.

Gee, imagine that - you get out of your residency and almost immediately run into a rare, induced psychological condition, just like you read in all those textbooks while you were in school.

What are the odds?
 
2014-02-26 05:02:17 PM  

hardinparamedic: 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


That's Somatic Symptom Disorder and if you either knew anything about the topic or bothered to read your own link you'd see the critical differences between the two and why Somatoform Disorder is out of date.


"Several important changes have been made from previous editions of DSM. The DSM-IV disorders of somatization disorder, hypochondriasis, pain disorder, and undifferentiated somatoform disorder have been removed, and many, but not all, of the individuals diagnosed with one of these disorders could now be diagnosed with SSD. The DSM-IV diagnosis of somatization disorder required a specific number of complaints from among four symptom groups. The SSD criteria no longer have such a requirement; however, somatic symptoms must be significantly distressing or disruptive to daily life and must be accompanied by excessive thoughts, feelings, or behaviors.

Another key change in the DSM-5 criteria is that while medically unexplained symptoms were a key feature for many of the disorders in DSM-IV, an SSD diagnosis does not require that the somatic symptoms are medically unexplained. In other words, symptoms may or may not be associated with another medical condition. DSM-5 narrative text description that accompanies the criteria for SSD cautions that it is not appropriate to diagnose individuals with a mental disorder solely because a medical cause cannot be demonstrated. Furthermore, whether or not the somatic symptoms are medically explained, the individual would still have to meet the rest of the criteria in order to receive a diagnosis of SSD.
"


If this was the model that was being followed, she would be receiving ongoing medical treatment as well as a her delightfully refreshing stay at Arkham. But she's not.

They locked her in the nuthatch and are denying her necessary medical treatment based on an outdated model of a phony diagnosis and ignored existing medical care, treatment and diagnosis because reasons.
 
2014-02-26 05:21:03 PM  

willfullyobscure: They locked her in the nuthatch and are denying her necessary medical treatment based on an outdated model of a phony diagnosis and ignored existing medical care, treatment and diagnosis because reasons.


You might want to amend that with "according to her parents".
 
2014-02-26 05:36:32 PM  

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


There are genetic diseases that sit around like a time bomb, and only manifest at a certain point in life.  Huntington's Corea comes to mind.  A genetic disease that wasn't noticable until adolescence sounds quite plausible to me.
 
2014-02-26 05:49:00 PM  
Considering BCH refuses to allow a second or third opinion, that Tufts already diagnosed mitochondrial disorder, AND she has a sister with the disorder, I'm siding with the parents for the time being. Some flavor of CPS being involved doesn't help either. WTF @ legalized kidnapping by the government/court.
 
2014-02-26 06:38:43 PM  

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

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

Tufts is renown for it's Pediatric Trauma history.

Interesting though, that the doc in the case doesn't believe that mito is a real disease.  The world renown hospital has a mito specialist.  More interesting is that her sister also suffers from the disease and has been treated for it.


You can be surprised at Doctors, a lot of them are very very messed up with farking god complexes. Apparently, there are still doctors out there that believe Celiac disease doesn't exist, not that the GF diet has become trendy among the hippie set, but that Celiac doesn't exist at all. This despite various tests proving that Celiac is a real condition. They are in the extreme minority now but it shows all the schisms that exist in the medical flied and the biatch fights that result.

My Dad's a doctor and I worked at a Mental Health and Addictions hospital, so I know how Doctors think. I'm going to preface this by saying while most Doctors may be farked up in the head it doesn't mean they don't still care about their patients.
 
2014-02-26 06:49:59 PM  

willfullyobscure: They locked her in the nuthatch and are denying her necessary medical treatment based on an outdated model of a phony diagnosis and ignored existing medical care, treatment and diagnosis because reasons.


A floor hospital room is not the "Nuthatch". Sorry. No sell. And again, everything is  according to her parents.

Elegy: For what it's worth, one of the article's I read mentioned that the doctor at BCH that diagnosed her with Munchausen's by proxy had only been practicing medicine for 7 months.


Do you have a source for that, or a link to the article? Because I find it hard to believe a first year fellow in a Pediatrics Teaching hospital would be diagnosing that without involving their attending or a psych attending.

shortymac: You can be surprised at Doctors, a lot of them are very very messed up with farking god complexes. Apparently, there are still doctors out there that believe Celiac disease doesn't exist, not that the GF diet has become trendy among the hippie set, but that Celiac doesn't exist at all. This despite various tests proving that Celiac is a real condition. They are in the extreme minority now but it shows all the schisms that exist in the medical flied and the biatch fights that result.


Please provide a citation of this claim from the Doctor himself, or from Boston Children's - or for that matter from any party other than the parents.
 
2014-02-26 06:52:29 PM  
So what's with people capitalizing 'doctor(s)'?
 
2014-02-27 12:01:59 AM  

CRtwenty: 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.


How would you know? The hospitals can't talk about it and the case is sealed. We've only heard from the two parents who would normally have already regained custody. Something is very, very wrong.

Based on the available "evidence" my interpretation is just as plausible.
 
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