We failed her. Big time. Boston Children’s was experimenting on Justina Pelletier,

[pnwmom]

Last edited Wed Jul 2, 2014, 09:31 PM - Edit history (11)

and most progressives got snowed by the Harvard docs. We listened to the Harvard docs and the social workers who thought the parents were "rude" -- for fighting back -- and we failed Justina.

And so did the “liberal media" which for the most part ignored her case. It has come out now that the teenager had pneumonia twice while she was under the “care” of the State of Massachusetts for her “somatic disorder.” I bet you didn’t know that. It wasn’t on MSNBC.

Why did most progressives and the liberal media fail to champion Justina Pelletier? The right-wing wants to use cases like this -- why do we let them? Why do we leave the field completely wide open? We care just as much about the safety and health of children as they do -- I would argue that we care a lot more. So why did progressives -- in politics, in the media, and in the public -- largely sit by while Justina was being held without treatment for more than a year?

I think the reason we let the right wing take the reins on this case was simple. The first person the family turned to was their parish priest, and from that point they got support from various religious groups, who were connected to right-wing figures – who correctly saw what was going on and worked hard to free her. Since right-wing people can NEVER be right about ANYTHING – and this was HARVARD, after all – many progressives decided that the parents and their right wing associates must be wrong. They decided to trust Boston Children’s and the State of Massachusetts that they were acting in Justina’s best interests. And they were not.

The people from Harvard who convinced Massachusetts to make her a ward of the state had a vested interest in her case: they were conducting research in somatoform disorder, and she appeared to fit the bill. Based on a 25 minute interview and a 12 hour hospital stay, they decided that her devastating symptoms were psychological, rather than caused by a physical disease – and that the parents were guilty of “overmedicalizing” her. (I am not saying that these doctors deliberately, and with malice, decided to use this girl for their purposes. I believe that their personal biases unconsciously influenced their diagnosis and that the Children's hospital and the state failed to protect her.)

In making this diagnosis, the Harvard docs refused to speak to the specialist at Tufts University who had been treating her and her older sister for mitochondrial disease for years. Then they got the state to take custody away from her parents and put her in a locked psychiatric ward for more than a year, where they could control every moment of her day and everything she put in her mouth. They withdrew all the medication prescribed by her doctor at Tufts, a top specialist in mitochondrial disease, put her through "behavioral modification," and studied her while she deteriorated. For more than a year. While she got pneumonia twice.

And they could do all this because Massachusetts had a law and Boston Children’s had a policy that allowed wards of the state to be experimented on, even in research with significant risk that carried no benefit for the child.

Yes, you read that right. Even significant risk with no direct benefit.

After 16 months in State custody, she was finally released back to her parents – free and clear. Her parents’ care of her is not being supervised by either Massachusetts or her home state of Connecticut – because it turns out they had done nothing wrong. Connecticut always refused to get involved and never even opened a file on her because they had no evidence – other than what Massachusetts was claiming to them about “overmedicalizing” – that would support their own investigation.

The judge who had been involved had placed a gag order on everybody involved, but the father finally decided to break it last fall and go public. Unfortunately, other than the Boston Globe, which ran detailed and supportive investigative pieces on her case, and the Hartford Courant, most of the media coverage was dominated by right-wing and religious organizations. And in this case Fox news got it right.

The left-wing got snowed by Harvard , and possibly by the fact that this was a blue state. Too many progressives – who would otherwise care about this sort of thing – decided there must be something wrong with the parents. We just didn’t know the whole story, people said. And the father was so rude to the social workers! We needed to trust the hospital and the social workers that they were doing the right thing.

Well, they weren’t. And that’s why Washington’s Representative Jim McDermott, a psychiatrist himself (and one of the co-chairs of the Foster Youth committee) is among a group of four in the house (two Democrats and two Republicans) to introduce a bill that would prevent this from ever happening again. No state will ever be allowed to experiment on its wards in research that involves risk and carries no direct benefit to them.

It boggles my mind that this has been legal anywhere but it has. In 2014. In liberal Massachusetts.

Most of the "liberal media" got snowed by the fancy docs at Harvard. The Boston Globe, and the Hartford Courant did not. Fox News didn't either. A hat tip to Fox, for getting it right – for once.

Guardian LV: http://www.donotlink.com/framed?53149

Rep. Jim McDermott highlighted the “strength and bravery” of Justina Pellier and her family, calling it “a guidestar” for the nation. It was their responsibility to make sure children were not the “subject of risky medical experimentation,” he said and for this reason he was working with the other three reps “to pass Justina’s law as quickly as possible.”

(Rep. McDermott, D-Washington, is one of the most liberal members of the house and a psychiatrist himself.)


Justina speaks out: (This interview is from the Blaze because I can't find an interview with Justina on a more reputable site.)

The Blaze: http://www.donotlink.com/framed?53147



___________

The Boston Globe investigation:

http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

[tularetom]

1. After reading this, I'm as outraged by this case as you are, but you realize

that by posting a link to "the blaze" and complimenting Fox, you've turned this thread into an attack on the validity of the story.

Yes, that's the point you were trying to make but not everybody is going to see it that way.

[pnwmom]

5. The problem is that they are the ONLY places where you can find an interview

with Justina now.

So the choice now is to ignore her case, or link to otherwise sketchy sources.

[kcr]

22. It's always been right wing sources. They've taken up this cause.

I definitely don't see itl ike the OP does.

[pnwmom]

51. How do you see it?

And did you read the investigative reports in the Boston Globe?

[kcr]

54. She wasn't kidnapped to beging with and I doubt highly that she was tortured or expiremented on

I see it as a case of extreme anti-government whackos taking up a cause and nothing they report should be taken seriously. I have read the Boston Globe and other news sources. It's a local story here.

[pnwmom]

60. She wasn't kidnapped? The parents lost custody for more than 16 months

because the psychiatrists at Boston Children disagreed with the mitochondrial specialists at Tufts.

Maybe that's not the legal definition of "kidnapping" but it was wrong. Blatantly wrong.

And are you saying that the reporters at the Globe are "extreme anti-government whacks"?

I want to know why the rest of the MSM didn't follow through on what The Boston Globe started.

[kcr]

61. Losing custody isn't the same as being kidnapped. n/t

[pnwmom]

79. It's just a matter of diction in circumstances like this. But you were the person

to use the word kidnapped, not me.

[kcr]

81. Only if you frame it the way the RW lunatics are. n/t

[pnwmom]

98. To the family, that's exactly how it felt. They brought their sick child to see a G.I. doc

and the next thing they knew, she was in the custody of psychiatrists and the state. And they were deprived of her for 16 long months and the judge actually awarded something he called "permanent custody" to the state.

Of course they felt like she'd been kidnapped.

[kcr]

102. As opposed to all the other families who've lost custody, who admit their wrongdoing

and say the government had every right. So, it makes perfect sense to believe them

[pnwmom]

109. The critical difference here is that the state's only claim against them is that they were

"overmedicalizing" because she had somatic disorder, not mitochondrial disease.

So the only people guilty of "wrongdoing" were with the state and the hospital.

The state is no longer pretending that the parents did anything wrong. They're just waiting for the inevitable lawsuit.

[kcr]

112. And it could possibly be true

Parents sometimes do this, and sometimes the kids die when they do.

[pnwmom]

114. The state shouldn't grab custody for 16 months because of something that could "possibly be true."

[kcr]

116. Of course not

But there's no evidence that's what happened.

[pnwmom]

119. There's zero evidence that the parents were overmedicalizing her.

The judge put her back with her original doctors -- the ones the parents chose for her.

So the only evidence is that the parents lost custody for nothing but a huge mistake. And maybe some research results.

[kcr]

122. And you know this how? From the parents and their media representation?

We're getting their side of the story. Of course they say there's no evidence. I've read things that make me think the hospital may have been right.

[pnwmom]

127. From the Boston Globe and the Hartford Courant.

There has never been any charge in court that there was any other issue besides overmedicalizing.

[kcr]

130. So? That can't possibly be a reason to remove a child from care?

Children die because of it. It certainly causes a lot of pain for them.

[pnwmom]

137. It was NOT a good reason to remove a child from care

when they hadn't even bothered to consult with the doctors she and her sister had been seeing for years.

You don't steal custody away from parents based on a "hunch." And that word comes from the mitochondrial specialist himself. He said that the Harvard docs had diagnosed her based on nothing more than a hunch. And he was right. They slapped the diagnosis of somatic disorder on her within 12 hours of her arrival there, based on nothing more than than their gut feelings. And their gut feelings were wrong.

[kcr]

143. How do we know they didn't bother? Did they admit that themselves?

Or is this another claim by the parents and those exploiting the situation to forward their own agenda?

[pnwmom]

149. Because I believe the Tufts doctor, and that was his sworn testimony at a hearing.

He also spoke to the Boston Globe reporters -- and you say you read that, so I don't know why you're asking this.

[kcr]

151. One doctor, who isn't convinced his own diagnosis may be wrong.

And it isn't evidence they didn't consult with any of her doctors.

[pnwmom]

158. He testified that the doctors wouldn't speak with him. That was evidence.

And he was her primary physician, and the person who diagnosed her with the illness they were disputing, so there is no excuse for not talking to him.

[kcr]

160. That's not evidence they didn't consult with anyone.

[pnwmom]

166. They didn't consult with the ONE person who knew more about her case and

the diagnosis they were disputing than anyone else.

Her former G.I. specialist was also prevented from seeing her by the psych docs at B.C.

[kcr]

169. Doctors are never wrong. Except when the ones not on your side.

They didn't consult with the doctor who didn't see the parents were overmedicalizing. What a shock. Also not surpring that that doctor is the ONE doctor who knows the most about her! None of all the other doctors she'd seen, of course.

[pnwmom]

173. So why should the state be able to choose the diagnosis of the psychiatrists

instead of letting the parents decide which diagnosis to believe?

If your child gets sick, do you want the state to be telling you which doctors you must go to?

[kcr]

180. It's your and the parent's claim that that's what happened.

I need actual evidence that a hospital conspired to kidnap a child based on a disagreement over a diagnosis.

[pnwmom]

182. I'm not alleging a conspiracy. But there is overwhelming evidence

that her parents lost custody for 16 months because of a disagreement over a diagnosis.

[kcr]

183. What evidence?

The only evidence I've seen is the parent's claims. You want to believe them and that's fine, but I need actual evidence beyond their claims.

[pnwmom]

185. Read the court documents. You can find them. n/t

[kcr]

197. I have.

It would be helpful if you pointed out where the evidence is there. Maybe I missed it.

[liberalhistorian]

287. The Boston docs refused to even

speak to Justina's own Connecticut doctor, one of the foremost specialists in mitochondrial disease, or any of his team who'd been treating her for YEARS. REFUSED TO EVEN SPEAK TO THEM. Why? Because they weren't interested in anything that would have disputed what their own biases wanted it to be. They decided after just a short interview lasting less than a half hour, and a few hours of hospitalization, that THEIR diagnosis that it was all just in her head was the correct one, period, and the parents should be criminalized for following the treatment of the previous internationally-respected doctor. Meanwhile, in their custody, she rapidly deteriorated and became more and more physically ill. They couldn't blame the parents this time because they refused the parents access to her. They just plied her with more and more of their happy pills.

It's truly frightening when what should be just a medical dispute between medical experts becomes a criminalization of the parents for following said medical experts, and the child being taken away.

[kcr]

303. Claims made by the parents and their supporters

You and others are just assuming they're telling the truth about the doctor's actions and motivations behind them. You don't know, and it's aggravated by the fact that hospitals are hesitant to disclose patient info. So only one side is being told. A side making extraordinary claims. Hospitals colluding with social workers and the government to steal a child based on a disagreement over a diagnosis requires some hefty evidence to back that up. It would require believing that all these people that work for the hospital and the state are evil people acting with malice. It isn't credible.

[liberalhistorian]

308. Sorry, but her own CT doctors

have supported that claim and I doubt if they would risk their own professional credibiity by lying, especially considering that one of them is an internationally-renowned expert. Your unwillingness to believe what is now well-documented is truly astounded. The Boston Globe is a liberal paper and it has done extensive investigative research into this and similar cases within that particular hospital involving the same "experts" and workers, and their research completely backs the parents. And as someone who was once in the legal field, and who's married to an attorney, I know full well that these kinds of things happen a lot more frequently than people would like to think.

Courts too often simply take the word of "experts" at face value without considering other expert opinions or dissenting facts. I've seen social workers with the same kinds of biases as these ones ruin families for no reason other than their own agenda. They are not always acting within the best interests of those they are supposed to be serving. And neither are doctors.

The fact that the child did far worse under the so-called "care" of the hospital, not even permitted to see her own family except for one measly fucking hour a week, and the fact that the judge has returned her to her family and her CT doctors free and clear from any Boston medical or legal supervision should speak volumes to you. It obviously doesn't, which makes me wonder about your own bias.

[kcr]

309. That's assuming the claim about it being about a disagreement over a diagnosis is correct.

The fact that a doctor stands by his or her diagnosis doesn't automatically mean those who suspect abuse are wrong. None of those things speak volumes to me because so much of it is based on speculation from facts presented by one side. You are assuming she got worse because of the doctors at Boston and not because she was subjected to unnecessary medical treatments. I'm not. I'm sorry, but a removal of a child from parents is not an outrageous travesty. Not all removals are permanent. Children being returned to their parents doesn't mean the removal wasn't warranted.

[pnwmom]

436. Taking a child away from her parents is supposed to require some evidence to back it up.

In this case, BC acted on a psychiatrist's hunch. And that hunch was proven wrong when 16 months later the judge took her care away from the psychiatrists and handed her back to the metabolic specialists who had been treating her before this whole fiasco began.

This isn't a matter of choosing sides anymore. This is a matter of fact, and there's only one fact that matters. The judge decided to take her away from the BC docs and send her back to the Tufts doctors -- just as the parents had been asking for from Day 1.

[liberalhistorian]

285. In this case, it was, it's just a matter

of semantics. They were rarely permitted to even see her, were severely limited in their topics of conversation with her, no one listened when she got worse and worse because she wasn't receiving treatment for her actual medical condition that she had been specifically diagnosed with by her Connecticut doctors but they were dousing her with their psychotropics for some bogus "psychological" condition, they were criminalized, hounded, harassed, accused of all kinds of crap against their daughter simply because they followed the treatment protocols of her own doctors who knew her best and knew what her medical condition was.

This was nothing more than a medical dispute, and should never, ever have turned into a vendetta against the parents and gone this far.

[kcr]

302. Parents who've had their children removed aren't allowed to see their children whenever they want

The rest of your post is just claims made by the parents. It was just a vendetta against them, and that horrible hospital colluded with the government to take their child away just because they disagreed with a diagnosis. And this outrageous claim is true and we should believe it because the parents say it is. I think some are injecting their biases against doctors, because rarely do I see people so up in arms over a child being removed from parental custody. Why not the similar passionate defense of other parents who lose their children? Actually, there often is, and it's the same right wingers rushing to the defense of these parents. And our side rightfully defends the practice of removing them then because children aren't chattel. But because the story doesn't involve the Pearls, BabyWise manuals and beatings with plumbing supply line, all of a sudden it's different?

[liberalhistorian]

310. So parents who suddenly and without hardly

any real evidence or due process have their children removed simply because they're following the medical treatment plans and care of an internationlly-known physician should only be permitted to see them for one hour a week? Really? Wow.

And apparently the psychiatrist who said he didn't "believe in" mitochondrial disease must know more than the international medical expert on it (Justina's doctor) and the myriad number of other physicians who treat patients for it, as well as the researchers and authors of numerous articles and research results regarding it. Then again, psychiatrists are starting to consider almost anything to be "all in the head" or "psychosomatic" in origin, despite evidence to the contrary. Brings in more money for them, of course.

[kcr]

311. What psychiatrist said he didn't believe in it? BCH has specialists in mitochondial disease.

The claim that BC doesn't believe in the diagnosis is bogus. It isn't shocking that the parents think the removal is without any real evidence or due process. I'm not going to automatically believe them and think a hospital had their child removed for no reason any more than I would for any other parent who's had their child removed.

[pnwmom]

326. What you are saying might have made some sense before but everything is completely

different now.

You lost this debate. You are wrong and you can't admit it.

Boston Children's has tacitly admitted they did the wrong thing. They recommended to DCF that she be returned back to her parents, under the care of the doctors her parents wanted all along.

They had her for 16 months because they thought they knew better, and they failed MISERABLY.

Deal with it.

[kcr]

331. If BC admitted they were wrong, it should be easy for you to show where that happened.

I think I'll stick with what's worked for me for a long time. And that is not trusting right wing sources.

[pnwmom]

334. They recommended she be returned to her old doctors and her family. That is fact. nt

[kcr]

335. And that's admitting they were wrong how?

Children are never returned to parents unless it was a conspiracy to take them away for no reason? The only explanation is they're admitting they were wrong? Or could it be the parents finally got their act together and it was safe for her to go back?

[Nuclear Unicorn]

341. Save your fingertips.

You're dealing with someone who is pulling out every weak excuse in favor of the offending doctors while simultaneously dismissing out-of-hand coming from the Pelletier camp. The parents being accused of abusing their child are the only ones not afforded the benefit if the doubt.

[kcr]

350. Way to twist my words.

Stating a lack of evidence doesn't mean I'm siding with them and think they're right and Justina's parents and other doctors are wrong. It's stating there's a lack of evidence. This case is no more outrageous than any of the other stories about suspected child abuse. Unlike some who've absolutely made up their minds as to who is guilty and innocent in this story, I haven't. I have no way of knowing for sure. I'm dismissing kooky conspiracy claims put forth by the parents' right wing support. They are people who think children are chattel and parental rights trump all, and object to state interference, so their claims should be taken with a big dose of skepticism.

[Nuclear Unicorn]

356. "It's stating there's a lack of evidence."

kcr (6,863 posts)

102. As opposed to all the other families who've lost custody, who admit their wrongdoing

and say the government had every right. So, it makes perfect sense to believe them

That has no bearing on the Pellitier case. The acts of others are not grounds for bolster the case against for removing Justina from her family.

kcr (6,863 posts)

303. Claims made by the parents and their supporters

You and others are just assuming they're telling the truth about the doctor's actions and motivations behind them. You don't know, and it's aggravated by the fact that hospitals are hesitant to disclose patient info. So only one side is being told. A side making extraordinary claims. Hospitals colluding with social workers and the government to steal a child based on a disagreement over a diagnosis requires some hefty evidence to back that up. It would require believing that all these people that work for the hospital and the state are evil people acting with malice. It isn't credible.

All of which would be admissible in court absent any PROOF they were lying. You assume they are lying by reflexively dismissing everything they say while reflexively accepting as truth everything the Harvard docs claim.

kcr (6,863 posts)

82. Liberal doesn't mean immune to being hoodwinked.

And yet, there is no evidence that Rep. McDermott or others are being hoodwinked. Your reflex is to believe the Pellitiers are the RW are -- doing something.

Here you are accusing, absent of any evidence, the Pellitiers of doctor shopping --

kcr (6,864 posts)

243. I'm not arguing she wasn't sick

Lots of unnecessary medicines and treatments can do that. It's harmful and it can kill. They went to a hospital with expertise in the condition they just knew their daughter had. A condition that isn't easy to diagnose. I can easily see that being a red flag that causes them to consider what the parent's motives are, especially if there are other red flag behaviors that go along with it.

Here you are, without any evidence, accusing the Pellitiers of lying --

kcr (6,864 posts)

254. Is that another contention from the parents?

They froze out another doctor in the same hospital? Hard to believe.

So, anything that doesn't fit your prejudices is discounted.

Here you are, absent any evidence, accusing the Pellitiers of fabricating videos --

kcr (6,864 posts)

167. Video of her in a wheelchair taken by the parents.

Sorry, going to need more than that.

Your bias is more than apparent.

[kcr]

358. I'm not accusing the Pelletiers of lying. I just require evidence to back up their claims.

The more outrageous the claim, the more solid evidence it will take to convince me. I also always view some sources with high doses of skepticism.

[Nuclear Unicorn]

360. "I'm not accusing the Pelletiers of lying. I just require evidence to back up their claims."

kcr (6,864 posts)

167. Video of her in a wheelchair taken by the parents.

Sorry, going to need more than that.

There is no reason except your bias for dismissing the video.

[kcr]

364. I guess my bias is showing by not accepting a questionable source

It's a bias I'll happily admit to. I prefer a reality-based approach to forming opinions. I'm not the type that mindlessly watches Fox news. I think it's possible the Pelletiers are being exploited by that source and it's made everything that much worse for them.

[Nuclear Unicorn]

368. Either the video is an accurate depiciton of reality or it is not.

If you assert it is not accurate then you should provide evidence other than the ad hominem OMFGWTFRWNJZ! There is nothing questionable about the Pellitiers.

[kcr]

373. My assertion isn't that it's not accurate. My assertion is the source is questionable.

Is it your assertion that all video always accurately depicts things?

[Nuclear Unicorn]

376. Nothing makes it questionable except your bias.

Your bias is predicated, not on any evidence, but merely a political dislike. If anyone is making the case that politics pollutes the proper role of the exercise of state authority it is you. You are the epitome of the RWers complaints about the politicizing of power.

[kcr]

378. My bias against RW sources? Guilty as charged.

[Nuclear Unicorn]

383. The RW didn't create the video.

[kcr]

384. So if a UFO conspiracy site doesn't actually make the video they post as evidence

that means it must be real? I guess it's just unheard of for RWers to distort and misrepresent the truth. I never thought I'd have to defend being suspicious of RW sources on DU.

[Nuclear Unicorn]

392. What you're being required to defend is your unsupported, evidence-free allegations.

"RWers to distort and misrepresent the truth," is not a reason to keep children away from their parents. In a free society the state has to prove beyond a reasonable doubt that a crime has been committed before a person can be deprived of their rights. So far your every defense is to give the benefit of the doubt to the state while reflexively accusing the family of lying without any evidence.

[kcr]

394. It's unsupported that RW sources can't be trusted?

And there we are, the agenda. Children have rights of their own separate from their parents and aren't outweigh by the rights of the parents. It isn't to punish parents, it's to protect the rights of children themselves. They aren't possessions. If there is significant evidence of harm, abuse, or neglect, intervention is warranted.

[Nuclear Unicorn]

403. That's not what I said and you know it.

You have to have evidence the video is false. You have to have evidence the doctors at BC were justified in removing Justina from her parents.

Children have rights of their own separate from their parents and aren't outweigh by the rights of the parents. It isn't to punish parents, it's to protect the rights of children themselves. They aren't possessions. If there is significant evidence of harm, abuse, or neglect, intervention is warranted.

All well and good but thus far the case for removing Justina from her family has no evidence to support such an action. And when the venue that does adjudicate such issues -- the courts -- returns Justina to her family you still persist in your mindlessness. There was no evidence to warrant intervention in the first place.

At present your only argument has been "Because -- RWers!" That's not evidence to support taking children away from their families (though I'm starting to suspect RW politics is reason, in your mind, for the forfeiture of parental rights).

[kcr]

406. It seems that's what you're saying to me.

You surely aren't saying that right wing sources are absolutely trustworthy? Your claim that evidence has to be taken at face value from a disreputable source is laughable.

[pnwmom]

438. There was NO significant evidence of harm, abuse, or neglect. None. Zero. Zilch.

And she only deteriorated in the 16 months away from her parents.

So the judge ordered her back with her parents and her original doctors. BC failed her.

You're absolutely right that children aren't possessions of their parents. And they aren't possessions of the state, and they aren't the possessions of the doctors who want to turn them into human subjects so they can test theories on them and publish papers on their cases.

[pnwmom]

437. Justina isn't a UFO. She's a real human being, who people like you

have been treating grossly unfairly, without regard to her individual needs.

[liberalhistorian]

284. What frightens me the most about it is

this was nothing more than a medical dispute between medical experts that one side of "experts" turned into a criminalization of the parents in order, I suspect, to solidify and justify their shaky position, and for their own self-aggrandizing professional reasons. This is beginning to happen more and more and it's truly frightening. Blue states are not at all immune, far from it.

[KT2000]

2. good for McDermott

right wing, left wing - this was a travesty.

[seaglass]

3. We don't know the whole story and I'm skeptical this is the whole truth. n/t

[pnwmom]

6. The fact is that the state finally returned her to the care of her Tufts doctors,

and she was returned to the care of her parents, without conditions. And the Tufts doctor has publicly expressed support for the parents.

And two Democratic Representatives, one of whom is among the most progressive in Congress, and a doctor himself, are supporting her parents.

Of course you're skeptical. The media has largely failed to do its job.

[freshwest]

276. Appreciate McDermott, the OP and analysis more than you'll ever know. You have my heartfelt thanks.

Last edited Thu Jul 3, 2014, 02:25 PM - Edit history (1)

[pnwmom]

277. Thank you, freshwest! n/t

[Lee-Lee]

14. Same here

Need more info..

[pnwmom]

17. I'm sure there will be more once the parents file suit.

But it is fact that the behavioral modification failed to help her walk. That the judge finally, after over a year, removed her from the care of the Harvard psychiatrists and sent her back to the Tufts mitochondrial specialists. And that full custody was returned to her parents without any conditions.

Did you read the Boston Globe two-part investigation? And their follow up reports? If you need more info, that's a good place to start.

[alarimer]

235. It stinks to high heaven that right wing sites are the only place for "news" on this.

Not credible at all. Nor do I trust the parents here.

[pnwmom]

267. The Boston Globe is a liberal paper, and the Hartford Courant is, too.

The Boston Globe in particular gave this very thorough coverage.

What stinks to high heaven is that the rest of the MSM dropped the ball, letting outlets like Fox news take the story and run with it.

[me b zola]

4. K&R

[moriah]

7. Other than the "parent-ectomy", what was the experimental treatment?

If you recall I'm one of the ones who defended the family, but I am curious here.

Yes, I think a law needs to be passed prohibiting experimentation on wards of the state. But if they're just saying that the misdiagnosis and treatment designed to help someone with the psychological problem they thought she had was experimentation, in my opinion that's not the same as experimenting on wards of the state.

[pnwmom]

9. A combination of withdrawing her medications -- which is a treatment in itself --

and a program of "behavioral modification."

The psychologist who originally tagged her with the diagnosis is heavily involved in research on somatic disorder, and has written papers claiming that half of children with undiagnosed physical conditions actually have somatic disorder. I haven't read the details of what she was doing with Justina -- just that she was involved.

There is no standard treatment for somatic disorder. Her behavioral modification program was experimental.

http://www.wfsb.com/story/25435681/plan-is-offered-to-solve-medical-custody-dispute

"She does not belong in a behavioral modification program at all," added Linda Pelletier, Justina's mother.

[moriah]

13. If the misdiagnosis was not done intentionally, treating for a misdiagnosed condition is not....

... experimenting on wards of the state.

While what happened was atrocious, this doctor isn't Mengele.

[pnwmom]

15. It is experimenting if she was enrolled as a subject in a research study

on behavioral modification to treat somatic disorder.

And since there is no standard behavioral modification treatment for somatic disorder, and since her Harvard doctors were actively involved in this research, and since Rep. McDermott (a physician himself) says we need to change the law so that no other Justina Pelletiers can be experimented on like this, I think she was experimented on.

I don't think the misdiagnosis was done intentionally. I've clarified that in the OP. But I think the vision of the psychiatrists and psychologists was clouded by their research interests.

[moriah]

18. "Experimental treatment" vs "experimenting on kids"....

... the two have extremely different connotations.

Experimental treatment includes things like using CBD for seizure control in kids -- and I'd love to see the kids in Colorado who are the guinea pigs for this treatment actually enrolled in real research studies so the efficacy could be determined. Denying wards of the state access to potential new treatments for real diseases, especially if there are no good currently approved treatments or if all options have already been tried, is not something I want to see happen as a result of such a bill.

"Experimenting on kids" makes us think of sewing twins together and other horrific things.

[pnwmom]

21. Psychological experiments might not sound as gruesome but they're still experiments.

And I can hardly believe -- but it's true -- that Boston Children's ethics policies allowed wards of the state to be used as subjects in research studies that carried significant risks, even if there was no expected direct benefit to the child.

"Potential new treatments" don't always work. Sometimes they fail miserably. If a child is dying and there is no other treatment, then maybe an exception to consent laws should be made. Otherwise, studies should NEVER involve anyone without consent -- parental consent, in the case of children.

We used to carry out research on children in orphanages and on prisoners, without anyone's consent. This was wrong then and it's wrong now.

[hedgehog]

260. "Behavior modification" sounds pretty gruesome to me -

it used to be applied to drive out teh gay.

[pnwmom]

268. It is. Imagine that you are very sick, painfully sick, with intense abdominal pain,

headaches and weakness.

And you are being rewarded for suppressing your symptoms and punished for having them.

And they did this to her for more than a year.

http://www.diagnosticrights.org/the-coalitions-letter-on-behalf-of-justina-pelletier/

10. Bader 5’s approach of aggressive behavior modification therapy for children with somatoform diagnosis is an atrocity, and it is one the Court has sufficient evidence to recognize.

No somatoform diagnosis can be decisively confirmed because there simply is no science to support a direct correlation between the absence of medical explanations for symptoms and the presence of mental health disorders. As a result, somatoform diagnosis is notoriously inaccurate, and dangerously so.

It is unconscionable for those who treat somatoform disorder not to take stock of the great potential for diagnostic error in their field. If aggressive behavioral modification techniques are employed, severe emotional harm will certainly result for those diagnosed in error – that is, for those whose genuine physical suffering and disabilities are repeatedly met with punishment designed to encourage impossible control. Aggressive behavior modification therapy for the physical symptoms of children who are actually medically ill is heinous. Because error in somatoform diagnosis can never be ruled out, it cannot be ethical for those techniques to be employed in the treatment of somatoform disorder in children.

The Court is aware that Bader 5 does routinely employ aggressive behavior modification techniques for children with somatoform disorder. Because the Court cannot be certain whether Justina Pelletier does or does not have somatoform disorder, or which of her symptoms are medical and which are somatoform, it is unconscionable to allow further treatment by BCH or any other facility where these techniques will be employed.

I acknowledge that the case of Justina Pelletier brings to the Court a range of considerations about which there has been little specific discussion in the medical field or in the field of bioethics, but nevertheless insist that this in no way relieves the Court of its obligation to overtly discern and respect standard patients’ rights.

I respectfully request a systematic review of the Court’s decisions based on concern to acknowledge and respect these ten fundamental confusions about the rights of Justina Pelletier and her parents, Lou and Linda Pelletier.



Sincerely,

Diane O’Leary, PhD

[hedgehog]

273. Which raises the question, just what the hell is "behavior modification"?

It can lean toward rewards for good behavior, or punishment for bad behavior. It may be an euphemism, just as "enhanced interrogation" is.

[pnwmom]

279. I bet we never find out. I bet that the hospital and insurance company lawyers

are putting together a settlement offer right now, that will contain a confidentiality clause.

So we never find out more about what happened to Justina.

But we'll see.

[moriah]

278. And it's used to treat ADHD, conduct disorder, etc, too.

All real diseases, when a kid actually has them. No, it's not *fun*. But it's a legitimate treatment for some actual psychological conditions. Given the family has been criticized for alleged hyperbole before, putting the specter of "child experimentation" out there -- when the only thing they did was to give her that institution's usual treatment for the disease they reasonably believed she had -- is going to make them seem like they continuously make bigger deals out of things than is required. Plays well with the Tea Party crowd and Freepers, not so well otherwise. So far I don't believe they've even presented evidence that she has been enrolled in any research studies at all, so this is mostly old news.

I've always defended the family. Naturally they are upset at the way their daughter has been treated. And while I question the reasonableness of believing she had Somatic Symptom Disorder in the first place, given that another team of doctors diagnosed her with a disease that explained all of her symptoms, if they honestly believed it was psychological then psychological interventions would be the appropriate standard of care.

And I do stand by my statement that I do not want to see wards of the state denied access to lifesaving treatments because of their experimental status. Research is not all bad. What about when the case comes up where the bio family and the State are both in agreement that the possible risk is massively outweighed by the potential benefits, but a stupid law is prohibiting their kid from getting to participate in the study?

[pnwmom]

288. Behavioral modification shouldn't be a legitimate treatment for somatic disorder.

Here's why.

The diagnosis of somatic disorder is made when doctors can't find an underlying cause to the symptoms: but there is always the very real possibility that there is a REAL physical cause and the doctors just haven't found it. (Or, in Justina's case, that Tufts doctors diagnosed it and BC doctors rejected the diagnosis.)

When I was growing up they thought asthma was psychosomatic. Then they found out it was caused by inflammation in the lungs. Other people have been misdiagnosed with a somatic disorder when they actually had multiple sclerosis, or other diseases. "Somatic disorder" is just a catch-all diagnosis that some psychiatrists will use when other doctors don't understand what is causing physical symptoms.

Now, suppose you are a person with very painful physical symptoms, like Justina had. You're having bouts of nausea and vomiting, or severe intestinal cramping and pain, or migraines. Just some of the symptoms that people with mitochondrial disease can have. You never know when the bout is going to start or how many days it will last.

Now imagine they've just told you that you're not physically sick. That you can control these symptoms with your mind. And they lock you up in a psychiatric ward. And now you're being rewarded when you feel well -- and ignored or "negatively" reinforced when you have symptoms. Think about it. When you're writhing in pain, they negatively reinforce your ("attention-seeking&quot behavior because they think that will help you feel better.

Can you understand why her parents referred to this as torture?

http://www.diagnosticrights.org/the-coalitions-letter-on-behalf-of-justina-pelletier/

10. Bader 5’s approach of aggressive behavior modification therapy for children with somatoform diagnosis is an atrocity, and it is one the Court has sufficient evidence to recognize.

No somatoform diagnosis can be decisively confirmed because there simply is no science to support a direct correlation between the absence of medical explanations for symptoms and the presence of mental health disorders. As a result, somatoform diagnosis is notoriously inaccurate, and dangerously so.

It is unconscionable for those who treat somatoform disorder not to take stock of the great potential for diagnostic error in their field. If aggressive behavioral modification techniques are employed, severe emotional harm will certainly result for those diagnosed in error – that is, for those whose genuine physical suffering and disabilities are repeatedly met with punishment designed to encourage impossible control. Aggressive behavior modification therapy for the physical symptoms of children who are actually medically ill is heinous. Because error in somatoform diagnosis can never be ruled out, it cannot be ethical for those techniques to be employed in the treatment of somatoform disorder in children.

The Court is aware that Bader 5 does routinely employ aggressive behavior modification techniques for children with somatoform disorder. Because the Court cannot be certain whether Justina Pelletier does or does not have somatoform disorder, or which of her symptoms are medical and which are somatoform, it is unconscionable to allow further treatment by BCH or any other facility where these techniques will be employed.

[disequilibrium1]

289. Shades of gray here

The family's exaggerations notwithstanding, there was definite smoke to the fire here. One of the team leaders and early diagnosticians, Simona Bujoreanu, has co-written journal articles on somatoform disorder and was on at least one study team.
http://www.psychosomaticsjournal.com/article/S0033-3182%2814%2900080-2/abstract
She appears an eager beaver publicist for the disorder, suspecting it behind all that difficult-to-diagnose shrubbery.

Another BCH team member, Alice Newton, is also a prolific journal contributor on the subject of child abuse:
http://connects.catalyst.harvard.edu/profiles/display/person/9499

According to the Boston Globe the utterly flippant term for separating a child from a parent -- parent-ectomy-- is part of the BCH pediatric team's vocabulary.
http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

I don't know how anyone could justify locking a kid in a ward a year and a half, depriving her of school, church, friends and family contact, while doctors squabbled about a diagnosis. Apparently psych providers don't realize they're implementing paralogical science to begin with.

[pnwmom]

434. Thank you for all the links, disequilibrium1,

and welcome to DU!

I agree that the use of the term "parent-ectomy" is flippant and unfeeling -- and says a great deal about their attitude toward children and their families.

[hedgehog]

259. Is "somatic disorder" a real disease? I had the impression that the Harvard doctors came up

with this disease and are attempting to prove it exists. There are any number of diseases that were considered to be "all in the patient's head" until someone developed a test which offered physical proof that, yes indeed, something is wrong here. Even when someone has an autoimmune illness, she (and it's typically a she) may be sent to a psychiatrist before she sees a rheumatalogist. (autoimmune diseases often present with a cluster of seemingly unrelated symptoms).

[pnwmom]

269. They used to think asthma was psychosomatic, until they figured out it wasn't.

When I was a kid I didn't bother telling my parents about my breathing problems at night because I was well read enough to know it was all in my head.



There is a controversy in the field about the disorder. The latest version of the psychiatric manual greatly expanded the number of patients who could end up with the disorder, and the editor of the previous manual has spoken up strongly against the new diagnosis, saying that it could sweep up many people with common diseases like cancer and diabetes. (You can be diagnosed with a somatic disorder if you appear to be overly concerned with your symptoms, in the opinion of a doctor.)

One of the Boston Globe articles from a few months ago quoted a doctor at BC who said they no longer were finding the term somatic disorder to be useful -- they preferred the term somatic symptoms, which could apply in connection with other diseases. So the doctors at BC eventually began to reject the general diagnosis, even as they kept the label on Justina.

[moriah]

280. It's in the DSM-V.

http://www.dsm5.org/Documents/Somatic%20Symptom%20Disorder%20Fact%20Sheet.pdf

[pnwmom]

435. Yes, and it's very controversial. The editor of the DSM-IV

took a public stand against the new definition, saying that the definition was far too broad and that it would sweep in many people who had serious physical illnesses, like cancer and diabetes.

http://www.bmj.com/content/346/bmj.f1580

By Dr. Francis Allen, editor of DSM-IV

SNIP

The overinclusiveness of this diagnosis is suggested by the results of the DSM-5 field trial study reported by the somatic symptom disorder work group at the 2012 annual meeting of the American Psychiatric Association. Somatic symptom disorder captured 15% of patients with cancer or heart disease and 26% with irritable bowel syndrome or fibromyalgia, and it had a high false positive rate of 7% among healthy people in the general population.1 The rate of psychiatric disorder among medically ill patients is unknown, but these rates seem high, and the burden of proof before introducing any new diagnosis is that it has a favourable risk to benefit ratio. Yet the proposed diagnosis is unsupported by any substantial evidence on its likely validity and safety and was strongly opposed by patients, families, caregivers, and advocacy organizations.2

The DSM-5 definition of somatic symptom disorder is loose. It requires only one bodily symptom that is distressing or disruptive to daily life, which lasts at least six months. It also requires one of the following psychological or behavioral responses: disproportionate thoughts about the seriousness of symptom(s); persistently high level of anxiety about symptom(s); or excessive time and energy spent on health concerns.3 This is far looser than the (rarely used) definition of somatization disorder in DSM-IV. This required a history of many medically unexplained symptoms before the age of 30 years that occurred over several years and which resulted in treatment being sought or psychosocial impairment. A total of eight or more medically unexplained symptoms were needed from four specified symptom groups, with at least four pain and two gastrointestinal symptoms.4

Previous DSM criteria have always included reminders to clinicians to rule out other explanations before concluding that any mental disorder is present. I suggested to the working group that similar reminders should be included this time and that before somatic symptom disorder is diagnosed clinicians should consider whether the health concerns are completely unrealistic or whether an underlying medical disorder might account for them. I also suggested that clinicians should consider whether symptoms might be caused by one of several mental disorders that often present with physical problems (such as depression, generalized anxiety, or panic disorder). The DSM-5 working group reviewed these suggestions and rejected them.

Misapplication of these catch-all criteria, especially in harried primary care practice, may result in inappropriate diagnoses of mental disorder and inappropriate medical decision making.5 Millions of people could be mislabeled, with the burden falling disproportionately on women, because they are more likely to be casually dismissed as “catastrophizers” when presenting with physical symptoms.

SNIP

[moriah]

442. You aren't telling me things I don't know, I promise you.

I have fibromyalgia, along with bipolar disorder. I know very well what it's like to be told your problems are all in your head, and with bipolar depression there's no doubt that yes, I hurt worse when I'm depressed. The mind does have affect over the body, even when there is something genuinely medically wrong.

What bothers me about the way they tried to treat Justina was that they disregarded a competent doctor's diagnosis which they claimed to be made overbroadly, but the diagnosis they have is already determined to be overbroad. However, there are teenagers and adults with the actual psychological disorder. Also, it can be helpful to have counseling even when you are dealing primarily with physical affects from a disorder -- medical illness can be the cause of another valid psychological condition, called Adjustment Disorder (when life sucks and you're having a harder time dealing with it than you should, to the point it's causing you problems -- as a teenager dealing with my drug-addicted father who was dying of HIV and taking it badly, I had that diagnosis). Of course, that's talk therapy, not strapping someone with a GI appliance to a toilet.

[pnwmom]

443. Absolutely. A person can have both physical and mental or emotional conditions

at the same time. And Justina already had a therapist in CT, who testified on her and her parents' behalf in one of the MA hearings.

The problem with the Harvard psychiatrists' "treatment" is that they decided that her physical illness would go away if they treated her somatic disorder. That would be like withdrawing cancer treatments and telling a patient she should be able to control the disease with her mind -- instead of continuing with the cancer treatment and giving a patient an antidepressant or counseling to deal with the related depression.

[gaspee]

8. I know this family

Have known them for years - mostly Jessica and Lou - I'd only met Justina a couple of times before all this happened. I know them casually from dog shows. What happened to this family is a tragedy - I wish there was some way to get those 18 months back, but there really isn't.

They are a nice, normal family of working class background who, because they have no power or voice, were steamrolled by the state of Massachusetts and Harvard.

[pnwmom]

10. Thank you for speaking up. To me, their "rude" reaction to the social workers

seemed perfectly normal, under the circumstances. It was scary watching all that happen to them. I still can't believe it went on for 16 months.

[riderinthestorm]

11. Justina is now also paralyzed from the waist down.

She had no such problem before and in face was figure skating just before she was seized.



Everyone involved in doing this should face a hefty lawsuit and lose their license

[pnwmom]

12. When she got the flu -- the cause of her going to the ER -- she was severely weakened

and entered the ER in a wheelchair.

But yes, she was figure skating just a few weeks earlier, and her condition only deteriorated once Boston Children's psychiatrists got hold of her.

[riderinthestorm]

16. She now has no feeling below the waist according to the family

I'm guessing this development is what sparked the abrupt transition home.

Impossible to " fake "paralyzed. The somatoform disorder diagnosis disproved in the most awful way

[Nuclear Unicorn]

80. Please tell me this is a temporary condition. n/t

[riderinthestorm]

100. Well the Boston Children's docs, judge and MA DCF better hope so.

If her Tufts doctors can't restore her nerve damage and get her out of that wheelchair, I presume there's going to be a hefty financial pain to pay... to say nothing of Justina's suffering.

[pnwmom]

282. With mitochondrial disease, no one can know.

But the parents are determined to get her physical therapy that they think will help.

[FSogol]

19. Wow! The Blaze thinks liberals are to blame. You've convinced me!

Not.

Ridiculous. Fuck Glen Beck and all the idiot libertarians.

[pnwmom]

23. I think many progressives who should have cared about this

were blinded by the fact that the Glen Becks got to the story first.

But they were right. The M.D.eities at Boston Childrens stole 16 months out of a teenager's life and may have permanently damaged her health. But we thought the parents were "rude" to the social workers and we hated the people who were supporting them, so we did our best to ignore the situation.

[FSogol]

28. "We"? In stories were it is difficult (to impossible) to tell who is right,

why wouldn't you side with independent hospitals and social workers? At any rate, being on Glen Beck's side is most likely an error.

[pnwmom]

30. I read enough in the Boston Globe's investigative reporting

to think it was highly likely that the parents were right and the hospital was wrong.

And the bottom line for me was that in a case where two groups of highly respected doctors have different ideas about treatment, a parent, not the state, should be able to decide.

These are facts, according to the Boston Globe -- not a conservative rag.

The dispute was between Harvard doctors who thought she had a psychiatric illness and Tufts doctors who thought she had mitochondrial disease. The Harvard doctors won. Boston Children's employed the Harvard docs who put her in the locked ward.

Boston Children's Harvard psychiatrists diagnosed her with somatic disorder without talking to her mitochondrial specialist, a top doctor at Tufts Hospital. The B.C. social worker who wrote the report to the judge said she didn't know why the parents were so sure their daughter had mitochondrial disease. This was a lie because the Tufts doctor had personally talked to the social worker and explained Justina's diagnosis. This mitochondrial specialist has publicly taken the side of the parents and testified in court about his diagnosis of Justina.

After more than a year, the judge took her case away from the psychiatrists at Harvard and handed her back to the mitochondrial doctors at Tufts. A few months later, he returned her custody to her parents, in full, without any supervision by either Massachusetts or Connecticut.

It is blatantly obvious that Boston Children's made a huge mistake, and all the signs were there in the Boston Globe investigation last fall. It should never have gone on this long. Thank goodness the father finally decided to ignore the gag order and go public.

[FSogol]

32. "These are facts, according to the Boston Globe -- not a conservative rag." Great, then why bring

Glen Beck and the f'ing Blaze in here with a bunch of nonsense bashing liberals?

[pnwmom]

34. Because Justina's video only got published by the Blaze.

Anyone who wants to listen to Justina -- the actual human being -- has to watch her on places like Fox and the Blaze, because the rest of the media isn't bothering.

[kcr]

63. Because they're the ones reporting the cray cray that some feel back their position

Lots of cherry picking going on with the cites from Boston Globe. I formed my opinion in part from info reported by the Globe.

[Puzzledtraveller]

174. Some progressives are just statists

I think you are a true progressive/liberal for posting this.

[pnwmom]

176. Thanks, Puzzledtraveller.

That is a true compliment.

[kcr]

181. Do you agree with the statement that liberals are statists?

Yes, how horrible, supporting removal of children from abuse.

[pnwmom]

184. Not liberals in general, no.

But you might qualify, based on many of your statements in response to the OP.

The only people who abused Justina were the people who put her in a locked ward and withheld her medical treatment for more than a year.

[kcr]

186. Wait, I thought they used experimental treatments?

Now they withheld treatment? It's hard to keep up.

Your definition of statist is telling. Sorry, but I don't believe in parents owning their children like property and doing with them whatever they want. Thinking that is statist is right wing whacko.

[pnwmom]

188. They did both. They withheld her medications

and put her through a research study involving behavioral modification.

I don't believe in a state owning children like property and doing with them whatever they want. Silly me.

Luckily, Rep. McDermott doesn't either.

[kcr]

193. Withholding the treatments they thought were harming her is logical

They weren't knowingly withholding medical treatment they knew she needed. Of course the parents and those supporting them will claim they were necessary. They may not have been. Experimental doesn't mean bad. All treatments were in the experimental phase at some point.

[pnwmom]

201. No, it isn't.

Not unless they included the doctor who prescribed them in the discussions about her care.

Instead, they were deliberately closing themselves off from any doctor who might disagree with them.

Concerning experimental procedures, no they're not all bad. But we have had laws developed since the 1960's protecting human subjects from experimentation without consent. I am shocked that there was such a large loophole for children who were wards of the state, and I'm glad this will be corrected.

[kcr]

207. Again. Not including that one doctor isn't evidence they didn't consult anyone else about her care.

And isn't evidence they closed themselves off from any other doctors. You're jumping to the conclusion that not one but three entities all acted with deliberate malice, based on claims the parents have made.

[pnwmom]

215. Doesn't matter. He was the SINGLE most important doctor to consult

since he was the one who made the diagnosis they were disputing, and who had been caring for her and her sister for years.

I specifically said in the OP that I didn't think they acted out of deliberate malice.
I think they acted based on over-sized egos. They thought they knew more than the doctors who had been caring for her for years.

[kcr]

219. Yes, it does.

They didn't wish to consult with that doctor. It wasn't the only doctor the parents have ever consulted. In fact, one dropped them for non-compliance. Children's isn't the only healthcare provider who's had problems with them.

[pnwmom]

222. Yes, the Harvard M.D.eities "didn't wish to consult with that doctor." That says it all. n/t

[kcr]

224. Says what?

They may not have needed to. If the only contact with any healthcare they'd received was through that doctor, maybe you'd have a point. But it wasn't.

[pnwmom]

227. Of course they needed to. Obtaining her medical history would have been

a vital part of making a diagnosis, and they made no effort to get it from the person who knew most about her treatment in the previous two years.

[kcr]

229. Now the claim is they didn't obtain her medical history?

How do you know they didn't? You don't have to consult every single doctor to get that.

[pnwmom]

232. They absolutely didn't do that before making their decision -- which was done within 12 hours

of her stay.

And even afterwards, they refused to work with the one doctor who knew the most about her medical history.

You are wrong. You DO have to consult every single doctor involved in day to day care to get a real medical history. You can't leave out the two specialists who had the most to do with her care.

[kcr]

233. How long does it take to obtain medical records?

Particularly from one hospital to another because of transfer?

[pnwmom]

236. The doctor needed to SPEAK to them and he was prevented from doing so.

Not everything they needed to know was in the written record. In any case, they didn't obtain it before they took custody.

He said they took custody based on their hunch.

[kcr]

252. It's your contention he needed to speak to them.

I don't know that's the case. A doctor commenting on the case in one article said the sheer number of procedures and what they are were alarming. If there was suspicious behavior by the parents as reported by the staff, the record of her procedures and mito doctors saying she didn't actually have it, I can see that being reason enough to report a suspicion. The hospital doesn't make the decision on whether the parents lose custody, which is why the tinfoily accusation of them being in cahoots comes into play. They couldn't have seen anything reasonable for suspicion because DCF is in their pocket. It couldn't possibly be because there was actually enough evidence to warrant reporting them.

[pnwmom]

255. It is HIS contention he needed to speak to them. And he knew Justina,

unlike your "doctor commenting on the case."

The hospital DID make the decision because they are the "decider" for DCF. When the agency needs a decision on a medical issue, they go to BC. So BC knew that when BC made the recommendation, DCF would comply -- as it did.

By the time this was all blowing up in their faces, DCF and BC were both pointing fingers at each other.

[kcr]

256. Are you talking about her doctor from Tufts again?

I haven't seen one report of a BC doctor who wanted to consult and wasn't allowed. And anything based on the contention they reported just because they're an arm of DCF isn't going to sway me, because, tinfoil. ETA neither will the "Harvard elite" garbage. For one thing, that really smacks of a particular mentality that would explain the leap into conclusions. For another, just because a hospital has an affiliation doesn't mean all the doctors and professionals were educated there. Cahoots with DCF, charges that all these professionals were just elites with no regard for a child's welfare, we're talking crinkly metallic.

[pnwmom]

257. BC is a consultant for DCF on medical issues. This is a fact, not tinfoil.

And it was Dr. Flores, the GI doc who moved from Tufts to B.C., who wasn't allowed to consult.

From the Boston Globe report:

http://www.bostonglobe.com/metro/2013/12/16/month-medical-ordeal-conclusion-still-uncertain/Y7qvYTGsq8QklkxUZvuUgP/story.html

Instead, the agency regularly turns to doctors in the medical mecca of Boston for free consults. Its deputy commissioner acknowledges that, given Children’s standing as one of the world’s top pediatric hospitals, the state often looks there first for assistance — which can create at least the appearance of a conflict of interest when the agency is weighing abuse allegations brought by the hospital.

“The medical capacity of DCF is nil,” said Dr. Stephen Boos, the medical director for the team that handles child protection cases at Baystate Medical Center in Springfield.

[kcr]

306. What's tinfoil is suggesting that the hospital being "consultants" is evidence of collusion.

I'm not understanding why medical staff are supposed to stay out of these matters and never report suspected abuse, and DCF is supposed to just figure it out on their own.

[pnwmom]

313. It is evidence of conflict of interest. They weren't in the position to give a neutral opinion.

I'm not saying that the DCF is "supposed to just figure it out on their own."

But when the care of the psychiatrists at BC is in question, the appropriate thing would be not to ask them to evaluate themselves -- but to bring in outside doctors from other hospitals to look into the matter.

[kcr]

315. It seems to me that's what you're advocating

Do you get upset at every decision DCF makes? Do they need a neutral third party when evaluating other forms of abuse? Or is it just because it's medical professionals who are reporting? For your position to make sense we have to assume that the hospital is working with an agenda to remove the child. Do teachers have this same agenda when reporting?

[pnwmom]

316. Did you read any of my previous posts?

I just told you that DCF doesn't have any medical expertise of their own, so they have to go to consultants. Boston Children's is their usual consultant. But in this case, because of the conflict of interest, they should have gone to another hospital to get an outside opinion.

Haven't you ever heard of getting a second opinion? That's exactly what should have happened - instead of the psychiatrists at BC evaluating themselves.

[kcr]

322. Yes. I don't see the conspiracy you do.

Sorry. I'm not seeing why DCF should be ignoring the opinions of doctors because of some imagined conflict of interest.

[pnwmom]

325. They didn't have an imagined conflict of interest. They had a genuine conflict of interest.

Read the definition again.

No one can objectively evaluate their own work. They needed an objective opinion, so they should have gone to a neutral party.

[kcr]

328. Explain the conflict of interest

I know what conflict of interest means. What interests are you suggesting that conflict? Are you suggesting an ulterior motive in removing children from the care of their parents? If so, what is it?

[pnwmom]

339. The same person performing a work

can't objectively evaluate his own work.

This is why good doctors often recommend getting a second opinion.

[kcr]

344. That's not the same thing as recognizing abuse.

Medical professionals shouldn't be trusted to spot and recognize abuse? I disagree.

[pnwmom]

346. The ONLY allegation of abuse was "overmedicalizing."

And the only reason they thought her care was "overmedicalized" was because they thought she had somatic disorder instead of a physical illness.

These psychiatrists weren't able to view her case objectively. As Dr. Mark Korson, the metabolic specialist said, they were out to prove a psychiatric diagnosis. And they failed miserably. Her physical health only deteriorated during their care.

[kcr]

347. Guess what? That's a form of abuse.

Or they thought she suffered from somatic disorder because of the overmedicalizing. Your attempts to downplay how serious that is is telling.

Dr Korson is entitled to his opinion. He could be just as easily wrong as the Super Awful Elite Cabal of Child Kidnapping Doctors and Their DCF Cronies.

[pnwmom]

354. Guess what? It's not overmedicalizing when it's treatment for a REAL condition

which they finally decided she DID have, which is why they sent her back to Dr. Korson, for treatment of a metabolic disease at Tufts.

[kcr]

357. What does the fact that it's a REAL condition have to do with anything?

I don't recall the source, I believe it was the Boston Globe, definitely one of the not RW kook sites, cited a doctor who said the list of treatments that girl had endured was way more than someone suffering from mito should ever have endured. If that's the case, intervention was warranted.

[pnwmom]

361. Sorry, but a source that you don't recall is worthless. I'm very familiar with the Globe

articles, so you didn't read that there.

Every case of mitochondrial disease is different. So any doctor saying that CLEARLY wasn't a metabolic specialist.

She had a stroke at age 7, for which she needed to be treated, but she's had only two surgeries in her life. One was to remove a 20 inch band of cartilage that was wrapped around her intestines. That isn't a standard feature of mito -- just something that had happened to her.

The other surgery was for installing a cap allowing her intestines to be flushed out. Dysfunctional intestines are common with the disorder, though that procedure was a newer treatment for the problem. The GI doctor recommended it after thorough testing and observation determined that her bowel wasn't evacuating. Ironically, that same "extreme" procedure (extreme in the view of the psychiatrists) is performed by other doctors at B.C. And no one at BC is criticizing BC doctors for installing caps.

Her medical treatment at Tufts was clearly warranted. Her kidnapping by B.C. was not.

[kcr]

363. You got me, I'm totally making it up! Meanwhile, someone who sources the Daily Fail

and The Blaze has a lot of nerve to throw shade about worthless sources. Meanwhile if I find the source I'll gladly post it.

[pnwmom]

366. At least I was open about those sources. Not telling you to trust my memory.

Unlike you, I have read widely about the case, with the Boston Globe, the Hartford Courant, and ABC news providing most of the information.

But when a source like the Daily Mail provides an actual document no one else is showing, yes, I'll link to that, too.

[kcr]

370. I'm not stopping you from forming your own opinions.

You think I'm untrustworthy? Fine. Coming from someone who thinks The Blaze is a valid source, I'm not all that hurt.

[pnwmom]

372. The Blaze was a valid source of Justina's videotaped interview.

If a progressive site put up a videotaped interview, I'd have preferred that. But there wasn't one out there.

[kcr]

374. Uh huh. Sure they are.

It should tell you something that sources like The Blaze are the only ones out there. That's actually a big red flag.

[pnwmom]

379. The only red flag is waving at the MSM's negligence in covering the story fully.

She and her parents should have been interviewed everywhere.

And it wasn't for the parents' lack of trying that they weren't.

[kcr]

380. I don't think MSM needs to jump on every cause the RWers think is just.

Not everything is worthy of national coverage.

[pnwmom]

381. This story was. Progressives value fairness and justice -- and children --

more than the right wing.

It's pathetic that most of those supporting her were from the right.

[kcr]

385. That could be the explanation

or it could be there's a real reason right wingers were drawn to the cause. Which is more likely? Hmmm. Progressives being horrible? Or right wingers being horrible? Huh, so hard to decide....

[pnwmom]

386. Whatever drew the right to her cause, no one should be subjected

to what Justina and her family went through, without any sort of due process or concern for her rights -- and with a gag order to prevent them from speaking out.

Good for the father for finally gathering the courage to ignore the gag order and fight for his daughter.

[kcr]

389. No one should be subjected to it? I disagree. Children would die if DCF were dismantled.

I don't doubt it's an awful thing for parents to go through, but children have rights of their own. This is why progressives haven't jumped on it.

[pnwmom]

395. She had the right not to be ripped from her family and locked in a psychiatric ward

for a year without due process. And that would include having an objective third party, unassociated with Boston Children's, giving an opinion on her complicated medical issues. WHICH DIDN'T HAPPEN.

Progressives didn't jump on this because the media failed to do its job. There wasn't a single article in the MSM until Fox and Boston Globe put out stories, 9 months after she was taken from her parents.

[kcr]

398. A judge ruled in a court of law. How much more due process do you want?

Or are you saying that children must be left in the care of their parents through the whole process? Children have their own rights as individuals, including the right to be protected.

[pnwmom]

400. A judge rubber-stamped the DCF recommendation, which was written without

any consultation with outside doctors and on the basis of no reliable evidence of parental misconduct that would justify such a loss of custody. And he issued an unconstitutional gag order, according to the ACLU, Dershowitz, and others.

Children ALSO have the right to be protected from unnecessary imprisonment by the state, which is exactly what happened to her. Without consulting anyone but themselves, they locked her in a psychiatric ward for more than a year.

[kcr]

401. A judge rubber stamped the DCF rubber stamping of the hospital kidnapping.

They're all in on it!

Imagine all the evil, heartless people who have to be involved in such a thing. Sounds like the ingredients of an anti-government wacko conspiracy. Backed up by ant-government kooks. What a coincidence.

[pnwmom]

402. The judge and the hospital had a longstanding, working relationship that led the judge

not to ask the questions that he should have asked.

He put too much trust in the Harvard psychiatrists. I'd say his problem was more gullibility and an inability to think for himself; and the Harvard docs problem was ego.

They weren't evil or heartless; just stubborn and overly confident in their own views.

[kcr]

404. Does the working relationship involve cackling with glee from their elite ivory tower

while they plot the kidnappings and count on a judge to automatically go along with it? How could those with such evil in their hearts resist, because it's the perfect set up!

[pnwmom]

414. I don't have the kind of vivid imagination you obviously do, so the answer is no.

[kcr]

415. I'm usually accused of the opposite when I don't believe conspiracy theories. n/t

[pnwmom]

420. You're the only one here alleging imaginary conspiracy theories.

Over and over again.

[kcr]

422. If it walks like a conspiracy theory, etc

Maybe. It's probably the fact I'm the only one bored enough to bother.

[riderinthestorm]

407. The judge returned Justina to continue to be "overmedicalized" by Tufts and her parents

without supervision. Clearly there's no more issues with her care or her parents' adherence to medical supervision since she's now back on that regimen and home with her family.

I can't for the life of me figure out why you are persisting ignoring these basic facts.



Your bizarre and willful dismissal of the ultimate result in this case is truly weird. You can speculate about all the rest til the cows come home. The bottom line is that she's returned.

She's been returned home to be cared for by the same "team" of doctors and parents as before. With no conditions. Or supervision. Even CT DCFS has declined to get involved recognizing Justina is receiving proper care. If that's not a stunning refutation of the BC docs and DCFS then I don't know what is.

[kcr]

409. Oh, so he didn't rubber stamp it then. Or did he rubber stamp it, then un-rubber stamp it?

It could be confusing to keep up.

No ,he didn't simply reverse course and return her without supervision. I know the impression by some is that she was just allowed to languish in a psych ward to enact an evil conspiracy to experiment on her, but there have been multiple rulings by the judge with the eventual goal to reunite her, which is pretty typical. Not the actions of a judge who merely rubber stamps evil plots.

[riderinthestorm]

412. I damn well hope the judge did that. As conditions changed.

If there wasn't timely, regular supervision with flexibility to change course as Justina's condition changed, then there's even more reason to go ballistic. That a judge would/could be careless about an initial DCFS case doesn't surprise me in the least. The system is fraught with emotion and until the judge had adequate time and resources to understand the problem, I'm presuming they relied on their usual team of experts to guide them. In this case, they were wrong.

As it is, there's going to be hell to pay since she's now been returned to Tufts and her parents, without supervision OR qualifications. To be "overmedicalized" forever. Clearly with the judge and MA DCFS, and CT DCFS blessings....

[kcr]

413. It seems to me a rubber stamping careless judge wouldn't take the time to be flexible.

That really doesn't fit with the evil plot. She'd still be locked up in that psych ward getting experimented on if such allegations were true. But the judge followed a typical pattern of re-uniting a child with the parents.

I'm fine with children being returned to their parents once they're deemed fit and any problems resolved. I'm not evil and it's likely none of those involved in the story are, either.

[pnwmom]

418. That better not be a typical pattern -- more than a year on a locked psychiatric ward

for a girl with a physical disease who had been doing very well in her school and family life till she had a bad bout with the flu.

And that unconstitutional gag order on the parents better not be typical either.

[kcr]

421. Why shouldnl't it be? The judgment to return children should be rushed?

I think it likely would have taken less time had the parents not run to kooks with questionable motives to "help" them. They did little to help those parents.

[pnwmom]

423. When there's no immediate risk of serious harm, which there wasn't, any judgment

to take a child away from her family should be made only with careful, deliberate consideration. If they were so concerned about the child's welfare, they could simply have reported their concerns to DCF, which would have been free to investigate the report even if the parents had moved Justina to Tufts.

The State of MA could have and should have taken the time to fully consult with her doctors at Tufts before snatching custody away from her parents. Instead, the social worker falsely said in her report to the judge -- which the judge relied on in making his decision -- that she had no idea where the parents got the diagnosis of mitochondrial disorder. (Even though Dr. Korson had telephoned her to explain the diagnosis and she had spoken with him.)

Then, with the doctors at Tufts and at Boston Children's at a stand-off, the Judge should have at least gotten expert opinions from other institutions. And he did not.

If he, DCF, and BC had take the proper, fully-considered action in the first place, they wouldn't have been left trying to figure out how to unwind their mistakes at the end.

[pnwmom]

416. That's exactly what he did. At the end, he finally un-rubber stamped it.

But he dressed up his ruling in fake "conditions" requiring the parents to care for her with the doctors at Tufts, as they had wanted to all along.

[kcr]

417. Very complicated rubber stamping n/t

[pnwmom]

419. That's why they pay him the big bucks. n/t

[ck4829]

20. I thought there were some strange things about this case

Somatoform disorder isn't supposed to be diagnosed with a quick one-time visit, it's similar to hypochondria, you have to have some previous experience with it or have the doctor thinking you have it for 6 months to a year. Why they instantly jumped to it is a mystery and someone needs to provide an answer to it.

Justina was being seen by Dr. Mark Korson for her mitochondrial disease, and from what I see, it seems like the people in Massachusetts made no effort to even contact Korson for his perspective or her medical history.

Was there a purpose to her separation from her life, and her family and friends before this? Who actually thought such a severe disuption to her life would have a beneficial effect? And take the efforts to get her out removed, what would have happened? Would they have kept her indefinitely? And what were they doing? Things like CBT and exposure therapy have as much effectiveness as medication in things like this, if they really thought she was just psychologically unwell then did they not try it instead of just keeping her in there and telling she's not sick?

So according to them and their logic, she's got somatoform disorder, her parents are medically abusive, and Dr. Korson is either ignorant or an accomplice to their abuse; so why did the professionals there make no attempt to get Justina's other sisters the help they must have needed, have the parents prosecuted, or Korson investigated for his medical malpractice?

[pnwmom]

25. You're asking a lot of good questions.

Her older sister with the disease is an adult, so she fortunately escaped the tentacles of Boston Children's. But they have a history of responding this way to other families with mitochondrial disease. Apparently the psychiatrists think it's a fake disease, and they're determined to prove it. Justina wasn't the first case and she won't be the last, unless someone does something to rein in the committee at B.C. that set this all in motion.

[SidDithers]

24. Sorry, don't trust The Blaze to report this story without extreme bias...nt

Sid

[kcr]

26. Really. Anti-government whackos claim she was experimented on.

Not surprising, and I'm not buying it. Fringe tinfoil nonsense.

[pnwmom]

52. Rep. Jim McDermott, D-Washington, believes she was experimented on.

Her psychiatrists, who were involved in research on somatic disorders, withdrew her prescribed medications and put her through a program of "behavioral modification" instead.

That is why Rep. Jim McDermott, one of the most liberal members of the House and a psychiatrist himself, is proposing his bill not to allow children who are wards of the state to be included in experimental research.

[kcr]

57. I don't think wards of the state should be expiremented on either

I just don't buy the claim it happened. Jim McDermott is free to have his own opinions, of course. Reps are human, too.

[pnwmom]

64. It is a fact that it is legal in the state of Massachusetts to enroll wards of the state

in experimental research projects.

And it is a fact that the written policy of Boston Children's allows it.

And it is a fact that their researchers engage in research on somatic disorders among children.

You just don't buy the claim that they enrolled Justina in any of their studies.

You are apparently very trusting.

[kcr]

67. So, if there's a cancer drug that hasn't been approved yet

and a child who would otherwise die for sure could possibly be helped by it, they'd be SOL because they're a ward of the state? I don't think so.

[pnwmom]

72. I would support an exception in that kind of situation.

But not in situations like Justina's.

And right now, the law in Massachusetts allows experimental research to be conducted on wards of the state even when there is significant risk and no prospect of direct benefit to the child.

Think about that. In 2014. Isn't that shocking to you?

[kcr]

74. If there is a problem with unnecessary treatments involving wards of state

then something needs to be done about it. I'm not basing that determination based on the word of parents who are particularly biased and rushed to RW sources for support.

[pnwmom]

77. Then take the word of Rep. Jim McDermott, Democrat and one of the most liberal

members of the House -- who is a psychiatrist and has investigated the case himself. He didn't enter this situation lightly.

[kcr]

82. Liberal doesn't mean immune to being hoodwinked.

I'm sure if his opinion is based on valid evidence that will all come out. So far it hasn't.

[pnwmom]

93. That's absolutely true.

And many progressives were hoodwinked by the Harvard psychiatrists.

[kcr]

97. How is that possible? The Harvard psychiatrists aren't the ones running and squawking to the media.

How would progressive have been hoodwinked by them, exactly?

[pnwmom]

101. They believed the Harvard psychiatrists' diagnosis that she had a somatic disorder.

They were hoodwinked by the "experts."

[kcr]

103. I can't speak for anyone else, but for me that's not true

I have no way of knowing if their diagnosis was correct. But I'm certainly not going to jump to the conclusion that they were wrong, either. This is no different than any other alleged child abuse case that makes the news. I don't jump to the conclusion that it's an injustice because government bad! And the parents agree that it's bad so that's more proof!

[pnwmom]

107. You have no way of knowing. Correct. So don't you think that when there's a reasonable doubt,

and a dispute between two sets of doctors, the parents should be able to decide? But the reason they lost custody is because B.C. insisted that they were right -- while refusing to talk to the mitochondrial specialists at Tufts.

Why should the Harvard psychiatrists get to wrest control of this case away from the parents and the girl's highly respected specialist at Tufts University?

[kcr]

110. If that were indeed the case, then yes.

But I find it hard to believe that it was merely disagreement that drove this. In fact, one article I read stated that there was more to it and it was based on the parent's behavior. I wasn't there, I didn't witness what happened, but I'm not an expert anyway. The point is we're getting one side of the story. The parents. I'm not going to immediately assume this was a governmental kidnapping based on their say so.

[pnwmom]

117. Yes -- the parents were rude to the social workers. And so the social workers, apparently,

got even.

But what parents wouldn't have gotten outraged in this situation? After a 25 minute interview, some psychologist decides she has somatic disorder, and the next thing they know, they've lost custody of their sick child -- and she's put in a locked ward and deprived of her necessary physical treatment.

Can't a frantic parent be excused for some loudness and some rudeness in that situation?

[kcr]

120. No, this wasn't rudeness to the social workers I'm talking about.

This was when she was first admitted. Behavior by the parents around Justina, and Justina's behavior and symptoms changing based on whether the parents were in the room.

[pnwmom]

132. As reported by the social workers who felt insulted.

And by the psychologist whose theory is that half of the children with undiagnosed symptoms actually have somatic disorder. And the psychiatrists at B.C. don't "believe in" mitochondrial disease, so her reports had an confirmatory bias toward somatic disorder.

[kcr]

138. It wasn't social workers who reported this

I'm sure social workers are insulted all the time. It can't be easy removing children from custody.

[pnwmom]

27. Then don't read that. Watch the interview with Justina herself.

And read the Boston Globe reports.

I'd love to be able to link to sources other than the Blaze, but most of the media has been ignoring the story.

[McCamy Taylor]

29. Publish or perish affects health professionals, too. So yeah, I can believe Boston Childrens

might have seen a chance to get a publication out of this girl and they hijacked her care for a year to try out an experimental treatment.

BTW, the clock does not run out on her ability to sue until two years after she turns 18. I hope the folks at Boston Children's are well insured. And they better pray that her regular doctor gets her back to baseline with her "overmedication" treatment, because if she is still in a wheelchair, the jury is going to make Boston Children's pay through the nose.

[YarnAddict]

38. Unfortunately,

it will be the INSURERS who pay, and not the individual docs and administrators themselves who perpetrated this atrocity.

[McCamy Taylor]

106. Not crying any tears for the insurance companies.

[pnwmom]

141. I suspect their lawyers and insurance companies are already urging a quick settlement. n/t

[ieoeja]

31. DUers got outraged about this more than once while she was being held.

So I'm not sure what "liberals" this author is talking about.

[pnwmom]

33. Some did -- but all you have to do is read this thread to find some who still

think the state was right.

And the liberal media is still mostly leaving it up to Fox news to report the case. How many people actually read The Boston Globe? Why wasn't MSNBC on the ball?

And why isn't the media -- other than the right-wing media -- reporting more about the fact that we have been allowing research on wards of the state, even when it poses significant risk and carries no prospect of benefit to the subject?

[Trajan]

205. THAT part of the story is where I utterly disagree with the OP

Those damned liberals hurt that our child, you see ...

Heck, I'm liberal ... so I hurt that child too?

I applaud the OP for raising these important questions, but carrying water for Glenn Beck is hardly endearing ... no matter what the cause ...

[pnwmom]

270. I'm not accusing liberals of hurting her. I'm asking why the MSM and the "liberal media"

ignored the case and left it to the Glenn Becks to champion Justina's cause.

We care just as much about children and children's health as they do. Don't we?

[DesertDiamond]

35. I wish we could champion the cause of every child who isn't getting proper care...

but there are just too many of them. We have so many battles to fight, we're overloaded. Sorry you can't see that, pnwmom.

[pnwmom]

39. This wasn't just a case of improper care. This was a case of the state vs. the parents.

Don't you think that if you ever have a seriously ill child, you should be able to choose the doctors that provide her care -- without fear of the state coming in, taking custody away, and putting her in a locked psychiatric ward for a somatic disorder?

This girl was falsely diagnosed of having a somatic disorder within 12 hours of her admission to the ER. When her parents objected and tried to bring her back to her regular doctor at Tufts, they were escorted out of the hospital and lost custody for 16 months.

The reason Rep. Jim McDermott is proposing "Justina's law" is because what happened to her could happen to other children. And has. Anyone with a child should be concerned.

[Bluenorthwest]

36. The Blaze?

What's the matter, Infowars link didn't work?

[pnwmom]

40. If you can find another link to a video interview with Justina,

I'd be happy to substitute that link.

But I think it is important to listen to the actual human being people have been talking about.

[Bluenorthwest]

48. You do? I've heard plenty of interviews that were manipulative and selective.

You have to understand, I don't believe a word out of the religious right or Beck or any of the folks who so casually malign LGBT people, they lie, they make shit up, they have no ethics whatsoever. Listening to them is meritless, for they lack voracity.
They cry hate too often, like the boy who cried wolf. If she suffered, Beck can buy her a lawyer. He's rich like Francis.

[pnwmom]

49. So there isn't one. Just as I thought. n/t

[YarnAddict]

37. When this case has come up for discussion before

on DU, there were a lot of people who thought it was outrageous. I think the article's author is using a very broad brush to state that progressives were "snowed."

[pnwmom]

46. Post a link proving that or admit that you're lying. n/t

[pnwmom]

43. Just check on google news and you will see

how little coverage there is by progressive or even mainline publications.

But where were the progressives in the protests? Why did we leave it all to the right-wingers?

[YarnAddict]

47. I see what you mean.

When progressives became aware of the situation they thought it was outrageous, but it was mostly ignored by all but the Fox News/Beckerhead media. Did the family ever try to get the attention of the MSM, before it became a RW cause celebre?

[pnwmom]

50. Yes, exactly. The Boston Globe got the ball rolling, but most of the media quickly

lost interest in the case.

I don't know if the parents tried to get the attention of the MSM first, but they were obviously cooperative in the Boston Globe reporting and that of the Hartford Courant.

Among the first people they contacted for help was their parish priest, and that led them to most of their right wing supporters. I'd say "unfortunately" but those supporters really helped to keep Justina's predicament in the news . . . even if mostly in the right wing news.

[YarnAddict]

53. I thought it was the Globe

that had the despicable columnist, Howie Carr, but I see that it's the Herald instead.

Regardless, I'm glad for all of them that the truth came out. And hopefully this has opened the eyes of a few people and brought attention to mitochondrial disease.

[pnwmom]

56. Right. The Herald is the right wing paper, the Globe's on the left.

I have a young relative who has a disorder often associated with mitochondrial disease, so I've had to learn more about this than I ever wanted to. I feel so sorry for families caught up in these situations. There have been several similar cases at B.C. in the last few years because the psychiatrists there apparently don't believe there is such a thing as mitochondrial disease -- and are out to prove it.

What a nightmare.

[YarnAddict]

58. Hopefully your family members

will never get caught up in such a horrible situation. Can't imagine the heartbreak and helplessness that the Peletiers felt during that long ordeal.

[pnwmom]

62. Thanks.

She's in the position of Justina's older sister -- too old to get caught up in anything like this now. Thank goodness. It's enough just to have to watch her suffer physically.

[fcefxer]

292. As a Moderator of an 11,000 member group aimed at Freeing Justina

I can assure you we forbid ANY posts with political overtones specifically because we were desperately trying to get the main stream media on board and knew their reluctance was because Conservative media had embraced it. Weekly, large groups of members targeted specific main stream media outlets encouraging them to do the right thing. Also Deval Patrick and Elizabeth Warren as well as the president were inundated with thousands of polite emails. They refused to help. How sad is it that your political affiliation would make people refuse to read the facts or help a child who's health was clearly failing? Justina's abdomen became burgundy in color, her hair fell out half way back, her legs developed severe edema which was indicative of heart issues present in Mitochondrial disease and she could no longer walk yet BCH dug in their heels to complete their research instead of caring that this child's health was plummeting. What would cause these obvious symptoms other than medical experimentation? This political division and lack of mutual respect hurts us all. We need to view this as Americans who know best what our children need instead of blind faith that if our party says it's so, it must be.

[YarnAddict]

293. It is a shame that

Justina was deprived of her family for so long, and that her health was allowed to deteriorate to this level. Hopefully, she will recover from this ordeal, with no longterm physical or psychological effects.

Thank you for supporting her and her parents. I wish I had known, because I have followed this story, and would have liked to be able to do something to help.

[kcr]

305. The liberal media is in on it, too?

I'm sorry, but our media doesn't shy away from the right wing crazies. It's an inconvenient fact that it's right wingers taking up this cause to further an agenda and there's a reason for it.

[pnwmom]

427. No, the problem is that most of the MSM did not "get in on it."

With the Boston Globe and the Hartford Courant being two major exceptions, along with some stories by ABC and CBS.

[pnwmom]

426. Thank you very much for the info, fcefxer.

And thank you for all your hard work on behalf of Justina, her family, and other children who have been affected by Massachusetts's antiquated human subject laws.

I used to sit on an institutional review board, and I thought informed consent had been made mandatory in the 1960's and that experimentation on children was banned unless it was for their benefit. So I was shocked to learn that in MA it was legal to involved children who were wards of the state in research with significant risk that might not even benefit them.

Your organization, Justina's family, and everyone else who was involved deserve our thanks for bringing this to light.

[Helen Borg]

42. Something doesn't square about this story.

[pnwmom]

44. Typical reaction. Harvard docs could never be wrong,

so "something doesn't square."

[hack89]

45. Mass DCF is the most incompent and corrupt governement organization you can imagine

overworked, understaffed and run by political hacks, they do a lot of harm.

[kcr]

55. Of course it is. That's always the claim, no matter where these stories happen

Government bad!

[hack89]

65. No - some government agencies bad

especially those in states with traditions of political corruption and patronage. MA is not as bad as RI but they have issues.

[kcr]

69. Oh, some agencies. Funny how it's always the ones featured in RW anti-government screeds.

If only one could live in the one state where no one thinks it's corrupt and filled with government overreach. Which state is that?

[hack89]

70. More than 95 kids have died since 2001 while in the custody of DCF

Though Governor Deval Patrick last week described Oliver’s disappearance as a unique tragedy in which state officials failed to do their jobs, state records show that children under the watch of the Department of Children and Families actually die with alarming regularity.

Since 2001, more than 95 Massachusetts children whose cases were overseen by state social workers have died directly or indirectly because of abuse or neglect, according to state statistics. The death toll probably is considerably higher because state officials have not revealed how many died from 2011 to 2013.

Some of the deaths make headlines, but many more children die anonymously, half of them before they celebrate their first birthday, according to state reports.

Over all, children who received services from social workers at DCF in 2010 were about six times as likely as the general population of Bay State children to die from maltreatment, according to the state’s own calculations.

http://www.bostonglobe.com/metro/2014/02/02/massachusetts-children-under-state-protection-die-from-abuse-with-alarming-frequency/2TcwcpIbWnrANkKKQs1CVP/story.html

I assume now you are going to tell me that 95 deaths tell you nothing about how competent DCF is

[kcr]

78. DCF is horribly underfunded

BUt the solution isn't to side with anti-government whackos. That would only make the situation worse. You think they're interested at all in making sure those children are taken care of properly? Don't bet on it. Those children who were removed, most for valid reasons, deserve better. They don't deserve for the issue to be framed by anti-government lunatics who want to destroy the government.

[hack89]

84. They are still woefully incompent regardless of the reasons - they are killing kids

when DCF custody increase the danger of a kid dying, what else can one say?

And where did I ever say I wanted to destroy government? I said DCF is incompetent and corrupt. Nothing more.

[kcr]

88. The kids are killed in foster care.

That isn't evidence they shouldn't have been removed from their homes in the first place.

[hack89]

99. They die at a higher rate under DCF care

the point of removing them from their homes is to move them to some place safe. DFC can't handle their basic function. Why are you supporting them?

[kcr]

105. More children die under DCF than by the hands of their own parents?

I'm skeptical of that claim.

[merrily]

124. Exactly how many kids should die under DCF?

Wow, whatever your agenda in this, it must be very powerful.

[kcr]

125. None. But claiming DCF kills more needs to be backed up.

My agenda is anti anti-government whackos. They have no interest in children's welfare, only their own agenda to dismantle the government. Do you think that will help abused children? I don't.

[hack89]

133. This is what the Boston Globe has to say

Over all, children who received services from social workers at DCF in 2010 were about six times as likely as the general population of Bay State children to die from maltreatment, according to the state’s own calculations.

[kcr]

153. That's not the same thing.

Again, not saying that it isn't a horrible problem that doesn't need to be addressed, but that's not the same thing as saying more children die in their hands. In fact, it's good to see the state calculating and presenting the data themselves. That's not the actions of a corrupt entity interested in kidnapping kids for no reason. Far better to fund them adequately than side with anti-goverment types.

[hack89]

157. Where in fuck do you get this anti- government shit from?

I said the DCF is corrupt and incompent. They are failing in their basic job of keeping kids safe. That is all. Are you saying it is not the case?

[kcr]

161. Because it's anti-government folks who've taken up their case

and bolstered the media attention to national levels. They're the ones the parents are speaking through. Their agenda is anti-government. A lot of talking points being used in support of them are from those sources.

[hack89]

208. So anyone who supports them has to be anti-government?

really?

[kcr]

209. No.

But it happens to be a fact that anti-government RWers have taken up their cause and the family is speaking through them. I'm not sure everyone reading the facts and reacting are aware of that.

[hack89]

211. So instead of smearing me as RW

why don't you approach the issue in a honest matter and actually address what I said instead of finding a way to label me and then ignore me?

[kcr]

217. Where did I smear you as RW?

I was talking about the group in the media who've glommed on to this case to champion the parents' cause.

[hack89]

218. Every time you try to deflect the conversation

by bring up the fact that some anti-government groups also don't like the DCF. It has nothing to do with what I am saying so stop trying to associate me with them.

[kcr]

220. I didn't associate you with them.

The anti-government group took up their cause because they don't like DCF. It fits their agenda. You asked me why I brought them up and I explained it to you.

[hack89]

223. "BUt the solution isn't to side with anti-government whackos"

as you were saying.

[kcr]

228. Well it isn't. Underfunding DCF is the wrong solution.

I didn't accuse anyone of actually being one. My whole point is to point out thee group's agenda and what they hope to accomplish. DCF has a problem and underfunding it isn't the solution. I'm not sure how you're getting that I'm accusing anyone of anything.

[hack89]

240. Ok nt

[pnwmom]

272. Only because the rest of the media dropped the ball.

The MSM left the field wide open to the RWers to grab the attention, and the credit, for helping a girl who should have been helped.

[merrily]

123. Remind me who has underfunded Mass DCF for decades. Government, right?

[kcr]

128. It isn't liberal progressives pushing for underfunding. n/t

[merrily]

134. LOL, a non sequitur, a straw man and a moved goalpost, all in one sentence.

I bet you couldn't have done that deliberately if you tried.

And I have no clue what "liberal progressive" means. Progressive is a term that the DLC resurrected and, contrary to common belief, it has little to nothing to do with liberals.

[kcr]

136. A non sequitor? It's ultra right wingers pressing these claims

because it fits their agenda of destroying the government. One of the ways is defunding and underfunding. Another is spreading the meme that government is corrupt and harmful. Or are RWers a term the DLC resurrected, too?

[merrily]

144. Sorry, that's non-sequitur. My bad. But, yes, you posted a non-sequitur.

You've been repeating "anti-government" like a mantra and when I ask a question about whether it wasn't government who has been underfunding DCF, you mutter something, not about government, but about "liberal progressives" not pushing underfunding. That's a non sequitur. You can look it up,

"One of the ways is defunding and underfunding." Another non sequitur.

"Another is spreading the meme that government is corrupt and harmful." And another.

Snap out of it. The question was, was government responsible for underfunding.

"Or are RWers a term the DLC resurrected, too?" Spare me the cheesy stuff, please. If you are ignorant of the DLC's having resurrected the term progressive, just say so. I'll be happy to walk you through it.

[kcr]

146. I'm repeating it because it's true.

I "muttered" something because the government didn't just decide randomly out of nowhere to underfund it, did they? Political forces were at play.

[merrily]

152. "Political forces were at play." I call bullshit.

DCF has been underfunded, as I said in my prior post, for decades. Besides, is underfunding child welfare because of "political forces" really a defense?

Sorry, but you haven't disproven a thing pwnmom has posted by repeating "antigovernment" over and over; and don't seem to have much else to say. So, you'll forgive me if I move on from these substance free exchanges to a poster who does seem to have something to say.

Until next time.

[kcr]

154. What is bullshit about my claim?

Point to me where underfunding and shrinking government is a platform for dems and lefties?

[merrily]

156. Please see Reply 146. Thanks.

[kcr]

165. 146 shows up for me as my own reply

Not sure why you want me to read that. I know what it says. I posted it.

[merrily]

171. Sorry. Charge the error up to boredom. I meant Reply 152.

[kcr]

189. Oh, the one where you continue to ignore

the fact that the parents went to ultra right wing groups to help them and they're the ones many of these talking points supporting them are coming from.

[merrily]

191. Please see Reply 152. Thanks.

[pnwmom]

317. The parents asked everyone they could think of to help them and a year later

some right wing groups finally came forward to help them.

The first reports were in December 2013, on Fox and The Boston Globe, after Justina had been held for 9 months. Where was the left during all those months when they couldn't get anyone to pay attention to their case?

[kcr]

323. So all the liberals who ignored it are in on it, too.

Good thing the right wingers swooped in for the rescue.

[pnwmom]

324. Yes. Good thing someone finally helped them.

We should have, but I'm glad someone did.

But it was a travesty that she was trapped under the "care" of B.C. for 16 months, when her Tufts doctors were right about her diagnosis -- and her parents had never done anything wrong. (Except express themselves strongly when their daughter was taken away from them.)

[kcr]

333. Parents reacting strongly to losing their children. Because that normally doesn't happen?

It's only a travesty if you believe the right wing sources that say BC has admitted they were wrong! And they were experimenting on her! Medical experiments! But they admit their wrong doing, so see?

Except the only place I see those outrageous claims are from right wing wackadoo. You're free to believe it, but I won't. It very much reminds me of those who claim that there is a cure for cancer but doctors are keeping it secret because of the profits. We're supposed to believe their sources and believe that all the people it would take to something off like that are truly evil people. Oh those elite doctors who care nothing for the truth.

[pnwmom]

336. They were WRONG. She has a metabolic disease and that's why they CHANGED

their minds and recommended that she be returned to the care of metabolic specialists.

But you are right about one thing. The parents reacted the way most normal parents would to the situation they were put in. They should never have held that reaction against them. Glad you agree.

[kcr]

337. No, you're only believing the spin that returning her to her parents is evidence they were wrong.

Why not immediately admit their mistake? Was waiting 16 months part of their nefarious plot of torture experimentation?

[pnwmom]

338. Why not immediately admit their mistake? Good question.

It took them a long time to be able to see past their giant egos.

[kcr]

348. Well, of course. Evil Elite Doctors have egos. That explains everything! n/t

[pnwmom]

353. Those doctors obviously did. They wouldn't even allow the Pelletiers

to discuss Justina's medical history with the on-call residents at Boston Children's who were in charge of her day-to-day care.

Someone might have questioned the MDeities in psychiatry who had put themselves in charge of her care.

[Nuclear Unicorn]

340. If only there was some way to break the RW's ironclad reign in Massachusetts. n/t

[kcr]

345. Where do I claim they have reign?

I'm merely pointing out they are the source of information. Meanwhile it's perfectly rational to think the doctors in this hospital are an elite cabal abusing powers. That's not kooky at all.

[Nuclear Unicorn]

349. I was responding to your sub-thread that DCF in Massachusetts was under-funded.

kcr (6,862 posts)

128. It isn't liberal progressives pushing for underfunding. n/t

Are you saying it's non-Liberal Progressive? Liberal non-Progressives? Even non-Liberal, non-Progressive Democrats aren't exactly known for pushing under-funding and I doubt you're criticizing them. That pretty much leaves the GOP/RW but they don't have the political pull in MA that your post suggests.

[kcr]

351. Now, this makes no sense.

I stated that liberals aren't the ones to push for de-funding. A statement you seem to agree with so I don't know what your argument with me is on this point. Are you suggesting a state that elected a Republican like ol' Mitt has no right wing political influence? Scott Brown was a total fluke too, I suppose.

[Nuclear Unicorn]

359. You claim DCF is under-funded.

That's a subjective term but whatevs. That isn't a point of "pushing" that would be a state of "is." A party can push for whatever it wants but only what actually happens to be is relevant. And while you can name Romney and Brown the MA state budget is not decided exclusively by them.

I think it is more than fair to say the MA state budget is the product of Democratic legislatures.

[kcr]

362. Whatevs. I was responding to a poster that claimed they are corrupt

But go ahead and point out where DCF is actually adequately funded, by all means.

[Nuclear Unicorn]

365. "But go ahead and point out where DCF is actually adequately funded, by all means."

I didn't say that. I said under-funded is a subjective term and you know that.

Pointing out the RW wants to shrink budgets doesn't change the fact they don't get to write the state budgets in MA.

[kcr]

367. Oh, believe me I know it. Right wingers think it's funded plenty.

I guess if you want to call that subjective, go right ahead.

[Nuclear Unicorn]

369. RWers don't write the budget in Massachusetts.

[kcr]

371. I know, it's like believing in Santa, isn't it?

Commie blue liberal states don't have right wingers and never have! They don't! It's not true!

I'm sorry to tell you this, and I know you'll just be heartbroken, but it's true. Republicans exist in Massachusetts.

[Nuclear Unicorn]

375. I didn't say RWers don't exist and you know that.

I said the RW doesn't write the budget in Massachusetts; the Democratic party has held the state legislature for decades. And that is a fact.

The 2006 elections solidified the Democratic Party’s dominance in Massachusetts. Currently, every Congressional delegate from Massachusetts is a Democrat. Democrats also occupy all constitutional offices in the Commonwealth’s state government, including Attorney General Martha Coakley, Auditor Suzanne Bump, Secretary of State William F. Galvin, and Treasurer Steve Grossman. The Massachusetts Democratic Party holds super-majorities in both the state House of Representatives and the state Senate.

http://en.wikipedia.org/wiki/Massachusetts_Democratic_Party

[kcr]

377. You say you're not saying it. Then you go on to repeat the claim.

It's fascinating. Yes, MA is a blue state. That's no secret. It's also no secret that funding of government programs have been slashed. I suppose you think that only happened in Red states? Or is that a subjective opinion, too? I imagine those who hate taxes and want to see government defunded won't look at it that way.

[Nuclear Unicorn]

382. Just because it can be cut doesn't mean it has been cut. If you're

asserting the DCF budget has been cut you should provide evidence to support your claim.

[kcr]

390. But because it's a right wing source

It's possible they did cut it. Therefore it's not a source to be trusted. Or do you think right wing sources are credible?

[Nuclear Unicorn]

393. Show us these alleged cuts.

[kcr]

396. Show that right wing sources are to be trusted and never manipulate

Because I can't show for certain in a post that the video is cut, it has to be accepted? Okay. Show that UFO videos are cut. Otherwise, it's clear that UFOs exist.

[Nuclear Unicorn]

405. This sub-thread is about your allegation of cuts to the DCF budget, not the video.

Show us these alleged DCF budget cuts.

[kcr]

408. Then why are we discussing the video?

Your laser like focus on things you think I'm claiming might be considered clever by some, but I think it's just a little too obvious.

[Nuclear Unicorn]

410. In this sub-thread I have confined my comments to the MA budget.

It's obvious you are posting in several sub-threads simultaneously. I assumed you made an honest mistake and forgot which sub-thread topic you were addressing at the moment. However, it also seems you never waste an opportunity to make a disingenuous argument/personal attack.

[kcr]

411. Oh, wait. My bad. You're right.

I'm confusing the ST with you arguing about whether RW sources are valid and the one arguing with you about government funding. I was mixing up the talking points.

[Nuclear Unicorn]

439. I'm not arguing if RW sources are valid and you know it.

I don't cite RW sources. There are plenty of non-RW sources for this story. You have no basis to declare the family a RW source; they merely sought as much media exposure for their cause as was possible.

Your MO is: you don't like the RW but anything you don't like must be RW. Your every argument presents the RW as this mythical power that can make non-RW media bend to its will, it can defund agencies in states where it is a super-minority, it can hoodwink doctors and judges, it can fake videos and make a family go through months of hell just to do -- something.

Occam's razor says that the doctors at BC screwed up. They leapt to a conclusion in an astoundingly short period of time in the name of a diagnosis that should have taken extensive interviews and tests to discern. When it became apparent their patient was worsening they were slow to do what was in the best interest of their patient. Eventually their behavior became so appalling, and the proof of their incompetence so glaring, a judge returned Justina to her parents without hesitation or condition.

If it weren't for the fact the father, at great personal risk, defied the gag order to bring attention to this travesty Justina could be still held by those incompetents.

NOTHING in this case shows the parents to be negligent, abusive or acting to their daughter's harm. NOTHING justifies tearing the family apart. There is no case. In the balance between the family and the state the scales tip to the family. The state doesn't get to say, "Well, the video has been hosted on The Blaze, so we get to trump family rights."

The Law you pretend to champion speaks to due process, probable cause, evidence and benefit of the doubt in favor of the citizen over the state. Yet, you throw all of that away in the name of cheap political vendettas because they had the audacity to plead their case to whomever would amplify their cry for help.

[pnwmom]

425. You'd think if they were so short of funds they wouldn't be wasting their money

on a case like Justina Pelletier's. They could have been spending their resources helping children who actually needed their help.

[alp227]

59. PNW, please use "DoNotLink" for crank sites like The Blaze and Guardian LV.

The Blaze: http://www.donotlink.com/framed?53147

Guardian LV: http://www.donotlink.com/framed?53149

(Guardian LV promotes quackery, which is why I avoid it.)

Since JP did her interview on Fox News, of course most of the sites reporting it will be right wing.

And isn't the Boston Globe pretty liberal, or else the Boston Herald wouldn't even be in business?

[pnwmom]

68. Thanks, apl227. I've just learned something new.

Never heard of donotlink before.

Yes, the Globe is liberal. But they and the Harford Courant (the other newspaper covering the story) are the only MSM outlets I could find with much coverage about the story. That's why I mentioned them.

[Louisiana1976]

66. Excellent post. K&R. I hope when Justina and her family sue they win a huge award.

[frazzled]

76. They're all in individual and family therapy, so I doubt they're going to sue

No one has ever proven she had "mitochondrial disease." The judge was the one who ordered the girl removed from her parents' care, not the hospital. The parents apparently have been cooperative lately (which they were not, before), and he let them take her home--but with a plan for both mental and physical therapy in place:

Here's the actual order:

this court finds:

1. Following the disposition order of March 25, 2014, Justina was placed on May 12, 2014, by the Massachusetts Department of Children and Services (“MA DCF”) at the Justice Resource Institute Susan Wayne Center for Excellence (“JRI”) in Thompson, Connecticut.

2. JRI has proved to be an excellent placement in which Justina and her family have received necessary and appropriate support and services working towards the goal of Justina’s return home. Services have included individual therapy for Justina several times per week, family therapy, medical care, recreational activity, occupational therapy, and physical therapy. Justina returned to school full-time and is engaged and excited to be in the classroom.

3. Since placement at JRI, Justina’s parents, Linda and Lou Pelletier, have been cooperative and engaged in services. A structured visitation plan was initiated immediately. Family members have visited Justina daily. Visits progressed well and were increased to extended, unmonitored visits off the JRI campus.

4. The West Hartford Schools Department convened a meeting on June 6, 2014, and created a comprehensive special education plan for Justina. The individual education plan includes small group and individual classroom instruction, occupational therapy, speech/language therapy, physical therapy, and individual counseling. These services will be put in place immediately upon Justina’s return home.

5. JRI collaborated with Justina’s family, MA DCF, and other collaterals in developing an appropriate plan identifying the necessary support and services for Justina’s return home. The plan addresses medical care and case management, daily access to special education services, individual therapy, and family therapy. Most of these services are ready to begin immediately and others very shortly. I credit the opinion of the director of JRI that with the many qualified, trained professionals assisting in Justina’s care, should an urgent situation arise, there will be immediate assessment, intervention, and support for Justina. It is a solid plan for Justina and her family that addresses Justina’s complex needs.

http://www.bostonglobe.com/metro/2014/06/17/the-court-order-that-returns-custody-justina-pelletier-her-parents/c6ETPN6UaIDLiPNHwJOZUM/story.html

I find the above articles both ludicrous and offensive to post here. I live with facts, not conspiracies and not wild accusations. This girl got BETTER during her time at the Center and is now happily home. The judge's order and the treatment she received there has been as successful as seems possible. It sounds like the parents are getting the help they need, too.

[riderinthestorm]

96. She got better?? She's now paralyzed from the waist down. No feeling below the waist

That happened during her time under DCF and the judge's "care".

In what way is that "better"? The girl was filmed ice skating just before she was admitted to the hospital that took her away from her Tuft's doctors....

[frazzled]

145. Read all the articles, not just the claptrap in right-wing rags

and the rantings of her parents, who are currently in therapy. I swear, people are really willing to believe anything. We might as well be on a crazy UFO site.

[riderinthestorm]

179. I read that on ABC News...

http://abcnews.go.com/Health/justina-pelletier-spends-fathers-day-home-amid-custody/story?id=24155485



It would seem that the abdominal tube would be easy to verify...

ETA, I'm bowing out of this thread at this point. I haven't accused you of only reading "right wing rags". The gratuitous slam about therapy is also really ugly. Many people are in therapy and don't deserve your utter disdain for that, as though being in therapy somehow makes them unfit or untruthful. Pretty crappy imo.

If this happened to my child, I'd need therapy too. There's no denying the state seized their child for 16 months and are now returning her without condition to the parents and to the care of the experts at Tufts. That's indisputable.

[pnwmom]

203. Read all the Boston Globe articles. And those on Hartford Courant.

They should be elsewhere but most of the MSM dropped the ball, probably because they're filled with people like you, who apparently think Harvard docs can do no wrong.

[pnwmom]

104. She didn't get better physically. She's happier because they finally let her go.

She did have diagnosis from an expert in the field. The metabolic specialist at Tufts had made a clinical diagnosis of mitochondrial disease more than a year earlier, based on her symptoms and her sister's muscle-biopsied case. The surgery for the muscle biopsy can itself cause a metabolic crisis, so when there is a biopsy proven case in a family, and a sibling also has symptoms, many doctors are reluctant to do another one. For one thing, it is possible to get a negative biopsy result and still have mito disease. For another, the treatment for mito disease -- certain dietary supplements in addition to what would be needed for particular symptoms -- carries little risk. So a metabolic specialist in this circumstance will often make a clinical or "working" diagnosis and attempt treatment -- which was working well, in Justina's case, until a bout with the flu sent her to the emergency room with acute GI symptoms.

In fact, she was skating a few weeks before B.C. got hold of her, but when her ordeal was finally over, she had to be carried into her house because -- after more than a year of withheld medications -- she's still not walking.

None of that court order you posted addresses her "care" at Boston Children's -- which went on for more than a year. It's all related to her care in Connecticut, after the judge FINALLY gave her medical care back to the Tufts doctors and put her in a rehab center in CT.

And since the judge was the one involved in the case all along, he has a vested interest in papering this all over to look as pretty as possible.

[Nuclear Unicorn]

71. Good for the author's mea culpa but most here at DU were on the right side of this. n/t

[pnwmom]

75. As someone who has been posting on her behalf, I ran into plenty of DUers

who were convinced the parents must be doing something bad or the state wouldn't have intervened. I wonder if they would have had the same reaction if Justina had been living in red Texas instead of blue Massachusetts?

But the OP isn't just about DUers. It's about how the MSM failed to cover this case, even after the Boston Globe issued its investigative report. The only media people out there supporting the Pelletiers were the Glenn Becks. That shouldn't have happened. Progressives and progressive media and MSM should have been just as involved.

[Nuclear Unicorn]

85. I would hate think you're right about the resistance you've encountered but nowadays

I'm not too sure.

This is a damned disgrace. For what these people have suffered they should own all future earnings of the principals involved. If Justina has been permanently harmed people need to be held to account for criminal offenses.

You've done a yeoman's work on this issue. Good on you.

[pnwmom]

87. Thanks, Nuclear Unicorn. You can see the range of reactions just to this OP alone.

There will always be the "if there's smoke there's fire" crowd who will always suspect the parents, no matter how much comes out.

And the people who can't imagine the doctors ever making a self-serving mistake.

But maybe the rest of us can learn something from this.

With me, it was another reminder of how the media can get things wrong -- through omission as much as commission.

[kcr]

89. And then there's the range of opinions in general on DU

Like hte ones who side with Hobby Lobby, for example

[pnwmom]

92. I haven't noticed anyone siding with Hobby Lobby, but I'll take your word for it. n/t

[kcr]

95. Just ask the poster you responded to above n/t

[kcr]

86. Right, because we totally believe anti-government whackos when it's concerning a red state.

I have the same reaction when they rail against children being "kidnapped" by the evil government when the child abuse story happens in a red state. They believe children are chattel and parents should be free to do whatever they please. That is their agenda.

[pnwmom]

90. Rep. McDermott isn't an anti-government whacko, and neither is the Boston Globe,

and neither are the Pelletiers.

They are just parents who were caught up in a nightmarish ordeal, and reached for the only hands that were held out to them.

More of our hands -- and voices -- should have been out there, too.

[kcr]

91. You don't strike me as an anti-government whacko, either.

I still think you're wrong.

[merrily]

113. Based on what? Your unsupported belief that nothing in certain sources ever contains

even a kernel of truth? So far, that seems to be all you've got and it isn't enough.



I am not saying pwnmom is right, and you are wrong. I have not looked into this independently, beyond what I've seen on the news. But, the kid was significantly worse when she came home than she was when she left. And pwnmom seems to have looked into this more than you have.

Massachusetts has in fact been doing a lousy job of protecting kids. If you don't live here, please see Reply 45. And that comes from watching local news here for the past several months, not from The Blaze or from Fox.

BTW, I think pwnmom would agree that she and I rarely agree and she might even agree that I am to her left. But refusing to look at any issue, even a little, solely because of the source is silly.

[kcr]

115. No

based on the fact that the claims aren't substantiated by anyone but the parents. It's their claim that she is worse, for example.

[merrily]

118. Untrue. That was substantiated by video of her ice skating before she

went into custody and her paralysis after she came out of custody.

Again, my source is local TV news reporting, not any source pwnmom posted here.

[kcr]

135. It's local for me, too.

Is the paralysis an official diagnosis or a claim by the parents? Is there video of her paralysis outside of their care?

[merrily]

139. The claim of paralysis was made while she was still in DCF care and

not contradicted. pwnmom probably knows more because, as I said, I haven't looked into it. If you really care about that level of detail, ask her.

[kcr]

140. Not contradicted. Not a surprise given she was in medical care

and they aren't bleating to the media the way the parents are. The tend not to do that.

[merrily]

148. Really? I've seen doctors talk to media about patients in whom

there is great media interest. And I certainly see them deny things when they think they've been defamed. The state, too.

But, as I said, if you are really interested in the fact about which you inquired, ask pwnmom as she has more facts than I.

But, so far, you don't seem interested in doing much other than repeating "anti-government," as though that proved something. It doesn't.

[kcr]

150. Oh, the doctors don't deny it or admit they were wrong?

I'm sure they do. There's a difference between denying wrongdoing and divulging medical information about a patient. In fact, it's illegal to do the latter.

[merrily]

155. Still nothing to say? Please see Reply 146. Thanks.

[kcr]

159. Nothing to say? I already responded to that comment

And I'm not the one refusing to acknowledge who is behind the underfunding of our goverment. It's surely inconvenient that it's ultra right wingers backing up the parents and pushing this into the national media.

[merrily]

175. Sorry. I meant, "Still nothing of substance to say? Please see Reply 152.

As Reply 171 states, charge the error in Reply numbers to boredom.

[riderinthestorm]

162. The parents are reporting that. Here's an ABC news report on it

http://abcnews.go.com/Health/justina-pelletier-spends-fathers-day-home-amid-custody/story?id=24155485

I would think Justina's abdominal tube would be easily verified.

[kcr]

178. Again, the parents.

[pnwmom]

192. For some reason, you think parents are guilty until proven innocent.

But in this case, they have been proven innocent. The judge released her back to her parents without any further condition, other than their promise to take her to the doctors they wanted her with all along.

[kcr]

194. No, I don't. I've repeatedly said I don't know if they're guilty or not or if the hospital

was correct. My only position is there's no evidence the hospital acted in error. Not taking the parent's word as gospel isn't the same thing as saying they're guilty.

[pnwmom]

200. They shouldn't have been able to take her away from her parents

Last edited Wed Jul 2, 2014, 08:54 PM - Edit history (1)

without solid evidence that their diagnosis of somatic disorder was correct and the mitochondrial disorder was wrong.

And they never had it. It was all just a hunch. And a very poor one.

[kcr]

206. Not true. The hospital reported their suspicion, DCF acted on it and a judge ruled in their favor.

That is pretty compelling evidence that something was there. Unless one believes the RW spin that government is bad and will act in this manner for no reason at all.

[pnwmom]

212. There was no compelling evidence. The DCF usually has BC investigate its cases --

for free, by the way.

So in this case, the DCF had BC investigate ITSELF -- which posed a major conflict of interest that no one seemed to notice. In other words, BC's case was compelling . . . to BC.

And then DCF rubber-stamped it, because BC was their go-to agency for difficult cases. It has no medical staff of its own.

[kcr]

216. What support do you have for the claim there was no compelling evidence? Aside from the parents?

DCF rubber stamped it? Where is the evidence that backs up that claim?

[pnwmom]

226. When you advocate take away someone's freedom, it's YOUR job to provide the compelling evidence.

Where is YOUR compelling evidence that shows the parents ever did anything wrong to their daughter -- aside from being loud and rude at times to hospital staff?

It is a matter of fact that DCF has no medical staff of its own, so they have no one to review medical claims. They use Boston Children's to investigate cases with medical issues. So they had BC investigate BC.

[kcr]

231. I don't advocate taking away freedom.

I just think extraordinary claims require backup, and it's an extraordinary claim that the hospitals, DCF, and the judge conspired to remove a child from innocent parents. And I haven't seen evidence that happened.

[pnwmom]

239. The extraordinary claim was that she had munchhausen by proxy syndrome,

which is FAR less common than mitochondrial disease.

And that extraordinary claim was never backed up and in fact was proven false.

I didn't say there was a conspiracy. It was more of a Confederacy of Egos.

[kcr]

242. Far less common means it isn't possible?

It's often hard to diagnose diseases in these cases. It's harder to manipulate with diseases that have definitive tests for diagnosis.

[pnwmom]

244. No. But "possible" isn't the standard when you advocate taking custody from parents,

as they did -- and you have been supporting.

[kcr]

245. And your contention that was the standard is?

I don't support that they were acting merely on a hunch. I think the fact that hospital, DCF, and judge acted means there's a likelyhood it was more than that.

[pnwmom]

247. The hospital IS the medical staff for the DCF. There was no functional

difference between them.

I don't know why the judge acted as he did, but I'm not alleging a conspiracy.

And it is the metabolic specialist who says that they acted on a hunch -- and he was very involved in the court proceedings.

[kcr]

250. DCF only takes reports from that hospital?

And none other? I'm supposed to think that this isn't a case of mandatory reporters acting, but of a hospital in cahoots with them. Too tinfoil for me, sorry.

[pnwmom]

271. DCF sends cases to BC with medical issues that they're concerned about.

DCF doesn't have its own medical staff, so it relies on Boston Children's. Why is this tinfoil?

[kcr]

307. The tinfoil is suggesting that they're colluding with a sinister purpose

Do you get outraged when teachers report suspected abuse? Is DCF colluding with them to take away innocent children because they don't ignore the teacher's reports? I honestly think that because it involves the medical profession, some are jumping to conclusions due to bias against it.

[pnwmom]

312. I didn't say that. I said there's an inherent conflict of interest

when the psychiatrists at Boston Children's are asked to investigate themselves.

Some neutral party should have been brought in to investigate.

[kcr]

314. Conflict of interest?

That's where your claim is tinfoil. I don't believe that there is a mass conspiracy at Children's to remove children from their parents. Was the pediatrician who dumped them wrong, too? Boston isn't the only one who had issues.

[pnwmom]

318. You obviously don't even understand what a "conflict of interest" is.

It doesn't imply a "mass conspiracy." It doesn't even mean there is necessarily any improper behavior.

And their pediatrician didn't dump them. He referred them to Dr. Flores, the GI who has been treating her for years now. Giving a needed referral to a specialist doesn't constitute "dumping."

http://en.wikipedia.org/wiki/Conflict_of_interest

A conflict of interest (COI) is a situation occurring when an individual or organization is involved in multiple interests, one of which could possibly corrupt the motivation.

The presence of a conflict of interest is independent of the occurrence of impropriety. Therefore, a conflict of interest can be discovered and voluntarily defused before any corruption occurs. A widely used definition is: "A conflict of interest is a set of circumstances that creates a risk that professional judgement or actions regarding a primary interest will be unduly influenced by a secondary interest."[1] Primary interest refers to the principal goals of the profession or activity, such as the protection of clients, the health of patients, the integrity of research, and the duties of public office. Secondary interest includes not only financial gain but also such motives as the desire for professional advancement and the wish to do favours for family and friends, but conflict of interest rules usually focus on financial relationships because they are relatively more objective, fungible, and quantifiable. The secondary interests are not treated as wrong in themselves, but become objectionable when they are believed to have greater weight than the primary interests. The conflict in a conflict of interest exists whether or not a particular individual is actually influenced by the secondary interest. It exists if the circumstances are reasonably believed (on the basis of past experience and objective evidence) to create a risk that decisions may be unduly influenced by secondary interests.

[pnwmom]

440. It is easily verified. And it wasn't done because she has mitochondrial disease per se.

It was done because one of her specific symptoms is that her colon was failing. Her GI doc referred her to Dr. Flores, the GI doc at Tufts, who did thorough testing establishing that her colon wasn't evacuating before he recommended the surgery -- a surgery that is also practiced by other surgeons at BC, when needed, as it was for Justina. (Dr. Flores saw her first; he connected her symptoms with her sister's mitochondrial disorder, and so he referred her to the metabolic specialist, Dr Korson, for an evaluation for that disorder.)

But you are talking to someone who thinks every word out of the parents' mouths is a lie.

[pnwmom]

163. Use your eyeballs. She was skating a few weeks before. She's in a wheelchair now.

Whatever they did to her wasn't making her better -- and the judge tacitly acknowledged that when he returned her to the care of the metabolic specialists.

[kcr]

167. Video of her in a wheelchair taken by the parents.

Sorry, going to need more than that.

[pnwmom]

170. There are plenty of pictures of her in the hospital and in court in a wheelchair.

GET REAL. Why would the hospital send her to court in a wheelchair if they didn't have to?

When the state -- not the parents -- had custody? Were you even aware that Justina testified on her own behalf, in her wheelchair, in front of the judge?

[kcr]

177. I'm sure they'd rather not drag her in there frogmarching her and forcing her to walk.

Yes I'm aware she testified. It doesn't mean the state was wrong. I'm sure it's not unheard of for children to testify on behalf of their parents. It doesn't mean the state and hospital kidnapped her for no reason. Anymore than being in a wheelchair means a person is actually paralyzed.

[pnwmom]

187. So she's faking it. And after more than a year, the Harvard docs couldn't figure that out. Right.

Wow.

Your ability to theorize here is amazing.

[kcr]

195. Actually, that might be exactly what they did.

Faking symptoms to obtain unneeded medical treatment is an actual thing.

[pnwmom]

199. Except even B.C. has never accused Justina of that. Only you.

And they had control of Justina when she went -- in the wheelchair -- to the hearing. They would have told the judge if she didn't really need it.

[kcr]

210. I haven't accused anyone of anything.

They would have? How do you know?

[riderinthestorm]

204. Then why would they agree to let her go back to her parents and the docs at Tufts

to be "overmedicalized" if they STILL believed she's faking it?

Why has even the judge agreed to return her to her parents and the Tufts doctors then?

The ultimate refutation of your position seems to be that the judge, MA DCFS, and the docs at BC have all agreed to return Justina to her parents and her docs at Tufts.

Without condition.

[kcr]

213. Children returning to their parents doesn't mean it was determined there was no case.

Children are frequently returned to their parents after they've cleaned up their act or shown they've made significant effort and progress regarding whatever the case is about.

[riderinthestorm]

225. Really? Now your slip is really showing.

This is a major high stakes case involving dueling medical teams - the BEST in the world.

This isn't about the parents. Really. You know this. They may have been assholes to the social worker but this is about the medical care of Justina.

Even CT DCFS has declined to get involved in this.

I'm flummoxed as to why you persist in defending the BC med/psych team who have obviously fucked up, admittedly so since they've relinquished ALL medical and psychological care to Tufts and the family.

The 'case" was that Justina's family and doctors were "overmedicalizing" her. That she does not have mitochondrial disorder and was simply faking all of her issues. Exactly "what" do you mean when you say the parents or doctors should have "cleaned up their act"?

Its incomprehensible on the face of it.

[kcr]

230. The claim that it's about dueling medical teams is spin

It's based on the accusation that action was taken simply because the doctors at BC didn't agree with a diagnosis. Does BC contact DCF every single time they disagree with a diagnosis?

[pnwmom]

234. It's not spin. It's fact.

Custody was taken away from these parents because they wouldn't agree to the new diagnosis and the withdrawal of her prescribed medications.

[kcr]

237. The parents didn't agree with the new diagnosis

They didn't even give the hospital 12 hours. The minute another hospital didn't agree with them they threw a fit, again. Only this time the hospital acted. The first doctor they pulled this with probably gave them the benefit of the doubt.

[pnwmom]

241. They had an extremely sick daughter -- you can die from vomiting, by the way --

and she was in the ER. And instead of letting her see her GI doc -- they shut her up with psychiatrists in a locked wing of the hospital, and withdrew her treatment for her medical issues.

What kind of a person could blame a parent for throwing a fit in that situation?

[kcr]

243. I'm not arguing she wasn't sick

Lots of unnecessary medicines and treatments can do that. It's harmful and it can kill. They went to a hospital with expertise in the condition they just knew their daughter had. A condition that isn't easy to diagnose. I can easily see that being a red flag that causes them to consider what the parent's motives are, especially if there are other red flag behaviors that go along with it.

[pnwmom]

246. Wrong. They went to Tufts not because of the mito doctor,

but because the G.I. specialist that their CT doctor recommended she see for her GI issues practiced at Tufts. She had such severe GI dysfunction that her bowels were almost shut down. From there, the GI doc recommended that they see the metabolic specialist, because one of the possible causes for that dysfunction is a mitochondrial disorder. The last thing they wanted was to have another one of their children diagnosed with that disease, but that's what happened.

[kcr]

248. Maybe, but I would find it hard to believe that the mito doctors weren't consulted

Once the the medical professionals who initially saw her had suspicions.

[pnwmom]

249. They finally were, months later. And eventually, after a year, the judge gave her care

back to the mito doctors.

Because the "compelling evidence" that the B.C. psychiatrists provided to the BC psychiatrists led to nothing.

[kcr]

251. The specialists are right there, in that hospital, but weren't consulted for months?

Again, finding that too hard to believe.

[pnwmom]

253. The GI specialist who was right there wasn't allowed to consult in her care.

And he tried.

[kcr]

254. Is that another contention from the parents?

They froze out another doctor in the same hospital? Hard to believe.

[pnwmom]

428. It's not hard to believe at all, given the document that they wanted the Pelletiers to sign.

That document prohibited the Pelletiers even from discussing Justina's treatment or medical history with the on-call physicians who were the most involved in her day to day care.

They insisted that all communication be through the neurology department only, and that they would be the ones to control who saw her -- including doctors both inside and outside B.C.

http://www.democraticunderground.com/10025213022

[riderinthestorm]

238. YES! I hope they do!!

DCFS should be evaluating psychologists/psychiatrists whenever there's a conflict.

[onyourleft]

73. What are...

...fancy docs?

[pnwmom]

202. The ones with Harvard degrees who get to make decisions about patients

they've examined for 25 minutes, and can throw them into locked psychiatric wards for 16 months, without consulting any of their regular doctors at Tufts.

[WinkyDink]

83. Trust me: When social workers want your rights taken away, they can get them taken away.

[merrily]

131. Not always. I was present when a judge refused to remove

a horrifically burned little girl from the custody of her mother because the mother had not done the abusing, "only" stood by while her live in boyfriend did it. Why? Because at that moment, the boyfriend was in jail--for sexually abusing their infant daughter.

They had removed the infant daughter from the home, though. The social worker wanted to adopt her, and did. (Not the same social worker who was trying to get the little burned girl removed, though. She was great.)

The lawyer representing the state in that instance was a chronic drunk. I don't know if he was drunk at the hearing, but he sure didn't seem well prepared or on his game. The lawyer assigned to the mother for free did a much better job, but the judge was off the wall, IMO.

[merrily]

94. The part I find troubling:

(I am not saying that these doctors deliberately, and with malice, decided to use this girl for their purposes. I believe that their personal biases unconsciously influenced their diagnosis and that the Children's hospital and the state failed to protect her.)

In making this diagnosis, the Harvard docs refused to speak to the specialist at Tufts University who had been treating her and her older sister for mitochondrial disease for years.

The second sentence takes away from the first. If the influence of their biases was only subconscious, why not confer with the doctor who had been treating her and her older sister for years? That would seem like the logical Step 1. Sure, you could prove him or wrong ultimately, but you confer first.

Moreover, if the only parental issue was that they were "overmedicating" because they are following the treating doctor's instructions, taking custody seems like the most extreme remedy.

[pnwmom]

111. I am willing to consider the possibility that their egos were so large

that they really thought they didn't need to confer with any other doctor, much less her mitochondrial specialist from (sniff) Tufts, before making their diagnosis.

And your last sentence is almost an echo of what the Tufts doctors said in an interview.

[merrily]

121. Also an echo of common medical practice, not to mention common sense.

I find it extremely suspect that they did not confer. No one has to tell Harvard docs the ABC's of medical practice.

[pnwmom]

129. "No one has to tell Harvard docs the ABC's of medical practice."

Apparently someone should.

[merrily]

164. No, they'd be wasting their breath. They knew very well

that a consult was Step 1.

As a Boston native (which I am not) might say, I "treat" at Mass General and one of the neighborhood health centers Mass General took over. And, I've needed a lot of care. As a result, I've seen a lot of Harvard docs in action. They know to consult. That is why I find the absence of a consult in this instance highly suspect.

pwnmom, you and I have disagreed a lot. Indeed, I cannot recall a time we were on the same page. However, I have never implied you're stupid or that you're right wing. So, while I cannot confirm or disprove what you've said, I sure won't dismiss it.

Don't let the wind, full of sound of fury, but signifying nothing, get to you.

[pnwmom]

221. Thank you, merrily.

Did you happen to read the Boston Globe reports? The BG is anything but right-wing, and they were the first reports about this case that I read. And they reported on several other similar cases where the hospital has gotten the state to take custody of children with mitochondrial disease.

Soon after the Boston Globe reports came out, one of my young relatives, who had been sick for years, was diagnosed with a condition that is sometimes caused by a mitochondrial disorder. Her doctor decided to treat her as if she has the diagnosis, since the supplements they give for the disease are harmless. And it seems to be helping.

So I had a very personal reason for learning as much as I could about the disorder.

I'm so glad my relative is a young adult -- too old to get caught up in this kind of situation. Her family has been through enough of a nightmare. I can't imagine much worse than having a very sick child -- and then being blamed for the illness.

[merrily]

258. Correct: The Boston Globe is NOT right wing.

I have not read the Globe reports yet, but I bookmarked the thread and I will at some point.

[Crunchy Frog]

108. K&R.

My mind boggles at the things that some DUers will to defend.

I'm so glad that she's finally been returned to her family. I hope they end up owning the people and institutions that did this to her.

[countryjake]

126. Tufts Boston Medical Ctr. originally filed allegations of neglect

with the Connecticut child-protection agcy against these parents, back in 2011, so why is the thrust of this all being aimed at Boston Children’s Hospital, Harvard, and the State of Massachusetts?

http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

The Pelletiers had butted heads with other doctors in Connecticut — Justina’s pediatrician there would accuse them of doctor-shopping and “firing” multiple providers. And despite their fondness for Justina’s main doctors at Tufts, they had previously clashed with other members of the Tufts staff, who had filed an allegation of neglect with the Connecticut child-protection agency in late 2011.

[pnwmom]

147. Not her doctor and not Tufts itself -- some member of the staff.

The complainer was wrong. Justina has actually been getting mental health counseling since she had a stroke at the age of 7. In the Boston hearings, her psychologist in CT testified on her parents behalf .

And you left out this part:

The complaint alleged that the parents had not followed through on recommended mental health services as part of Justina’s overall care. It also cited Linda’s professed reluctance to assume responsibility for inserting a feeding tube into Justina at home. But the allegations were dismissed.

[countryjake]

196. So her CT pediatrician wasn't actually her original doctor, either?

I've followed this case a bit, too, but strictly from the aspect that the fanatically anti-science group, the Parental Rights Organization, has been rabidly exploiting the Pelletier family's situation ever since Boston Children's took steps to protect Justina from the extreme surgical procedures that her own parents had been inflicting on her; not "experimental" and not "psychiatric", but serious, physically risky, life-threatening medical operations.

Also, whenever I see that Michele Bachmann has introduced something to the House, such as the Bill you've mentioned, H.R.4989, whether she's managed to convince some unsuspecting representative of its veracity to drum up support or not, I recognize the woman as a person with an extreme anti-democratic agenda.

You can hype Bachmann and her ilk's intent and purposes all you want, but you'll get no support on it from me, regardless of how ever many poor little children they drudge up to use as pawns in their crusade.

[pnwmom]

198. Justina had what some psychiatrists at BC considered extreme procedures

because she had extreme symptoms, especially GI symptoms. But the metabolic specialists and the GI specialist who treated her didn't decide on the surgery lightly. It was only after extensive testing showing that her colon wasn't working that they did the operation. And the tests showed she needed the operation regardless of whether she had mitochondrial disease or not -- she had an extremely dysfunctional intestine.

You insult Rep. Jim McDermott greatly when you call him "some unsuspecting representative." He is one of the House's smartest, most liberal legislators -- and he is an M.D. with a specialty in psychiatry. Of all the House members, he is probably the most able to judge what has been happening in this situation. He is anything but a Bachman pawn.

But you are proving my point, so thanks. Many progressives, including you, are taking a knee-jerk position against the Pelletiers, simply because most of the people who first reached out to help them were right-wingers. Well, this was a case where the right-wingers got it right, and much of the left wing has gotten it wrong.

And stubbornly continues to do so. We should have hand our hands out -- and our voices raised -- to help Justina too. But many of us were blinded by our feelings about her initial supporters.

[hedgehog]

261. If you have a sick child with an undiagnosed disease, of course you're going to "doctor-shop".

No physician recognizes every single disease out there.

[hedgehog]

262. For comparison:

"There are cases where children are brought to the emergency room before XP is diagnosed, and parents have been accused of abuse because the blistering on the skin looks like a burn,” says Kraemer."

http://www.everydayhealth.com/skin-and-beauty/for-children-with-xp-gene-sunlight-can-kill.aspx

http://www.wcnc.com/news/local/Family-DSS-wrongly-accused-us-of-child-abuse-234319561.html

http://www.wfaa.com/news/health/Brittle-bone-disease-spotlight-231994031.html

http://www.oif.org/site/PageServer?pagename=ChildAbuse

http://www.thedailybeast.com/articles/2012/04/13/parents-wrongly-accused-of-child-abuse-struggle-to-get-kids-back.html

[pnwmom]

266. Thanks for this. Parents probably get swept up in horrible situations

like this ever day.

[pnwmom]

265. Yes. Especially when it's a rare disease. Her CT doctor referred her

to a GI specialist at Tufts because of her severe GI symptoms. It was only then that the Tufts GI doctor told the parents that her symptoms could be related to her sister's disease, and passed her on to the metabolic specialist who eventually diagnosed her with mito.

[Jefferson23]

142. Very interesting and vitally important. I am looking forward to reading more, thank you. n/t

[libodem]

168. I saw this story on Dr. Phil

He interviewed the girl and her family. It was a very traumatic situation. The child wanted to go back home so much.

[pnwmom]

190. I'd like to see that. I'll have to see if it's online. n/t

[Puzzledtraveller]

172. K&R

[Lucinda]

214. KNR

♥

[Savannahmann]

263. I've watched this discussion with disgust.

I say disgust because we can't put politics aside for anything. If Republicans are opposed to medical experimentation on children, why then we must be for it because we have to be on the other side of every issue.

This ladies and gentlemen is why our party is not loved by the masses. We don't have principles. Not one damned principle among us. We're for whatever the Rethugs are against. We're against whatever they are for. We define ourselves by being the exact opposite of the other side.

Neither of us should be allowed to win. Because both of us have become too embittered, too insane to be allowed to be in charge.

My God. People on this thread are denouncing the information because one of the sources is RW. Well, if we can't agree with the RW about preventing medical experimentation on children who are wards of the court, what the fuck are we about? Sure, Democratic Representatives have co-sponsored legislation, well that just shows they are falling for the RW hype. HYPE? The girl is in a wheelchair.

Here is the thing. Whatever Doctor you go to is going to be absolutely certain that your condition falls into his category. An orthopedist will tell you of the procedure they can do to solve your problem. The Chiropractor will offer to crack your back. The Internist will discuss medical treatments involving medications. The Psychiatrist will tell you it's all in your head. The trick is to have a good General Practitioner who will refer you to the right specialist. If the diagnosis doesn't sound right to the GP, then pop over to another specialist and see what they say. Some things are no brain needed conditions. But the proof of this is obvious to everyone. Justina was doing better, and once the shrinks got their hands on her she was doing worse. Now, she's gone from active, to wheelchair bound. I'm pretty sure that proves that it wasn't all in her head after all if there was any doubt.

Now, we have definitive proof that the Doctors at Boston Children were wrong, wrong, wrong the whole time. BTW I suspected that believe it or not. The reason I did is the power of Genetics. If one child has a genetic condition derived from the parents, then all the children are susceptible. It's what we've learned about several conditions including heart health and many other ailments.

This story was an absolute travesty. Anyone who condones letting a child suffer because Republicans are opposed to it is an unequaled jackass. Vote to hide this if you fall into that category of unequaled jackass.

We used to try and find common ground with our political rivals. Now, all we want to do is make sure we are on the opposite side of every issue from them. No matter how stupid it makes us look, we are going to do it.

Well, fuck that. I am one who is opposed to performing medical experiments on children who are wards of the court. I am opposed to the mistreatment of children in the name of medical science. I believe that somebody owes that family a lot of fucking money. And I think anyone who would dismiss the Democratic Representatives out of hand because Republican Jackasses like Michelle Bachmann is involved is just as big of a jackass as Michelle Bachmann, Beck, and Limbaugh combined.

Some of you might see the result of a Political Party without Principles to guide it. The result is right here in this thread. Where morons who put party purity first are arguing that we can't believe anything because the RW has the interview first. Obviously, politics must take precedence over protecting children. Political Party Purity has become a pox on both our houses.

[pnwmom]

264. Thank you for your righteous indignation.

And you nailed it -- we should be a party of principles, not a party of against-whatever-they're-for.

[Nuclear Unicorn]

274. "HYPE? The girl is in a wheelchair."

Yes, but it's coyly suggested the girl and her family may be faking the harm done. Any claim from the family is met with skepticism and dismissal. All done to protect Authority. All done to spite the anti-government RW (By the way -- some RWers make great statist, corporatist authoritarians. Nothing but good times there, I'm sure.).

Is the Massachusetts Dept of Children and Families screwing-up by the numbers? It must be because they're underfunded -- because of the RWers -- in Massachusetts -- so the Pellitiers are just cranks.



While this breathless, pull-out-all-the-stops defense of the government system is being affected the defenders forgot one crucial part of that system: It is the citizen, not the state, that is afforded every reasonable doubt with the presumption of innocence. What we see here absolutely stands that ideal on its head.

[kcr]

301. It isn't only because the sources are right wing.

Their claims that this is government overreach is pure rightwing garbage. Their outrageous claims are being taken as gospel truth. When such claims are coming from right wing sources with an anti-government agenda, skepticism is warranted.

[Savannahmann]

319. If it wasn't overreach, it was serious malfeasance.

The courts would not allow testimony of Justina's primary care physician. The court would not accept evidence of the genetic condition existing in her siblings. The court heard the shrink from Boston Children's, and promptly sided with them. The parents were accused of child abuse by overmedication.

So following the directions of a medical professional entrusted with the care of your child in the administration of medicine is overmedication according to the Boston Family Services. That right there should have sent alarm bells ringing around the nation. They were not accusing the doctor of malpractice. They were not even talking to the Doctor. They were saying the parents were bad for treating a diagnosed condition in their daughter. The daughter was crazy because she believed she had this condition.

What I find really interesting, is when they got Justina in the psych ward, the reports given to the Court were that Justina was showing signs of improvement after being taken off of her meds. She was doing so much better now we heard from Boston Children's.

But remember, the charge of child abuse was centered on getting medical attention for the child. So providing medical care is child abuse? They weren't starving the girl, nor beating her. They weren't setting up the cameras and filming a bunch of dirty old men doing unspeakable things. The family was going to great lengths to make sure she got the care that her medical provider at home, one who had spent years caring for the girl, said to do.

Now, that may not be government overreach, but it it certainly troubling. In order for the court to make an informed decision, at the minimum, they should have allowed her primary care physicians and the doctors overseeing her case from home testify. The only people allowed to testify were Justina's parents, and the experts from Boston Children's, and Department of Family Services. At a bare minimum, you would agree that this is a massive travesty, and a serious case of misconduct.

Because if following the advice of a medical professional with years of familiarity with the case, and the patient, instead of someone who just met the girl, is abuse. Then the ACA is the greatest crime against humanity since the Holocaust. Imagine all those people getting and following medical advice from their family doctors. The horror. The horror.

Now, obviously I don't think the ACA is a crime against humanity. Obviously I think that going to your Doctor and getting advice and a treatment plan is a good thing. I think more people being able to see a doctor is a wonderful situation. I've called on programs to help more people become Doctors to address the shortage of medical professionals. This particular case highlights a problem though. Not content to offer a differing diagnosis, the system in Massachusetts created a national firestorm by abusing the laws of the state intended to protect children.

Now, if you are a doctor, and you disagree with a diagnosis, then you have a responsibility to advise the patient, and if the patient is a minor, their legal guardian of your concerns. If the patient, or their guardian disagree with your diagnosis, and choose another accepted medical treatment plan, that is not abuse. That is the right of a free people to choose the medical treatment they believe has the best chance of success. Doctors are not gods. And as demonstrated in this case, the courts are not wise or just. It was an abomination. It was a travesty, and it was if not overreach, malfeasance. If there was justice in the case, The state Department of family services, the state, and Boston Children's hospital would all be bankrupted to pay the family enormous sums of money in apology. The Doctor should be barred from practicing medicine ever again. Because he was obviously wrong. The way we know he was wrong is that Justina is confined to a wheelchair instead of bouncing around happily now that she's off her medications and treated according to his psychiatric diagnosis instead of medically. If there was Justice, he would be living in a cardboard box under an overpass cleaning windshields of passing cars for loose change. If as reports suggest, Justina has been in pain this entire time because of his actions, then he should spend life in a maximum security prison without the possibility of parole for torturing her. He is obviously dangerous to his patients, and god alone knows what suffering his other patients who have medical conditions that are according to him all in their heads are enduring right now.

[kcr]

321. So, we shouldn't be snowed by those elite Harvard doctors

And should instead take the evidence offered by right wing wackos as gospel truth? No thanks.

[Savannahmann]

327. My point was there was no evidence.

Harvard Doctors may be good, but again they are not gods. Everyone can be wrong, everyone can make a mistake. We are human, it goes with the territory.

Why didn't the court seek testimony from the Doctors at Tufts, which is another excellent hospital and training facility? They were the ones treating her for years, yet their testimony was not only not sought, but was ignored and then refused by the court. Are you saying that anyone who graduates from or practices at Tufts is nothing more than a snake oil salesman? Because that is exactly what Boston's Children and Family Services said by petitioning to deny the Doctors from Tufts from offering testimony.

Tufts is ranked very highly in patient satisfaction. Now, I'm sure you agree that such a highly ranked medical center would be heard right? Not so much.

So what is the end result? The girl was tortured for sixteen months while people refused to listen. In the end the DCF who had just last year found that the parents were abusive because they provided medical care for their child, gave up and reccomended full custody to the parents. The same parents who had for the last sixteen months been trying to get the girl home to her doctors so her treatment could resume. The same treatment that sixteen months ago was cruel abuse right?

So in the end, your opposition to the RW would have condemned this girl to more torture. This is why I say, this kind of crap is a pox on both houses. The RW was ideological as hell and moronic as they opposed the release of Terri Schiavo's feeding tube. They let personal opinion get in the way of medical science. But psychiatry is one of the most opinion based disciplines of medical science. If the girl had shown improvement during her treatment with the doctors at Tufts, then the obvious solution would be to talk to those doctors and find out what was going on. Instead, morons near and far denounced the parents and denigrated anyone who thought that the state was wrong.

I'm disgusted. I'm really completely disgusted with such a mentality. Perhaps you should go offer your support for the subject of this thread. I mean, obviously only RW tools would object to things that psychiatrists and academics believe are normal right? I mean, Dr. Taylor is a qualified Sociologist and Sussex University is well know world wide isn't it? Or do we have to wait until Harvard weighs in to decide what is right? If someone from Harvard says that it's normal, are we going to jump on board and claim we support it because Rethugs oppose it? I'm betting some posters here would.

[kcr]

329. Well, isn't that a coincidence. That's my point, too.

I'm not saying doctors can never be wrong. I'm saying there is no evidence of collusion with DCF to remove a child who shouldn't have been removed from her parents.

[Savannahmann]

330. Since when is providing medical care for your child abuse?

When did that become the definition of abuse?

[kcr]

332. Since people have been attempting to seek medical care unnecessarily

It's nothing new. When adults subject their children by proxy and cause them harm it's time to step in. And I see no evidence that the doctors at Children's were completely making up these charges against totally innocent parents because of some alleged nebulous agenda (they're elites!)

[Savannahmann]

342. I imagine it's difficult to walk across the room with blinders like that on.

You've seen no evidence. After sixteen months they gave Justina back to the parents, full custody, no supervision, no follow ups ordered by the court. If the end of this mess isn't evidence enough for you, what would you require? Would a confession suffice? Or would you demand more?

OK, for the sake of argument, let's say that the child was over-medicated. Then the doctor treating her was committing malpractice, so why wasn't an investigation ordered or requested?

Every one of your excuses is already dis-proven by events. But you're going to stand firmly on the side of torturing children because the other side has the RW on it.

[kcr]

343. Not at all. Children need protection and sometimes that means from their parents.

Children aren't property. They have their own rights, including the right to be properly cared for, and when that doesn't happen I support the state stepping in. Some think parents should have the right to do whatever they please with their children and any choice made on behalf of their child is valid, because that right trumps child wellbeing. I don't ascribe to that view.

[Savannahmann]

355. It doesn't apply in this case.

If a parent is neglecting their child, I say absolutely step in. If a parent is abusing their child, then certainly we should step in. If the child is suffering from malnutrition, trauma, hostile home environment. OK, I'm there leading the crowd demanding action. If the child is being abused by sexual predators, I say that is one of the rare times I would support the Death Penalty. Could I pull the switch myself? For some of those guys, and the damage they've done, I'm pretty sure I could do them with a couple of car batteries and some jumper cables.

But claiming the parents are unfit for following medical advice is the question here. We aren't talking about some lunatic religious sect that thinks they can pray the cancer away. We're talking about people who went to the doctor, found a specialist, got treatment, saw improvement in the child. Now, the only way you could even begin to convince me that the parents were negligent in doing this is if the Doctor had their license to practice medicine revoked as a charlatan or a quack. Then, I might consider it. But even then, the parents are trying to find help for their child, and seeking answers, and seeking treatments.

God damn it that is why we passed the fucking ACA so that parents could care for their children. We made it part of the law that parents could keep their children on their policies while they were in college. We are trying to help children. Taking them away from parents who are by all accounts following medical advice, accepted medical advice I might add according to the American Medical Association, is asinine. Defending that barbaric policy places you on the side of the issue where people look at you with an are you serious expression for a reason.

The action is indefensible. The action was cruel. Taking her off her meds, and ignoring her deteriorating condition because some dolt thinks it's all in her head is torture. If I was on the jury, I'd give them every single cent that doctor will make in his new career, do you want fries with that? I'd bankrupt the city of Boston. I'd bankrupt Boston Childrens and turn it over to the Shriner's to run.

People who do try to find excuses keep forgetting one thing. All of those excuses, all of those arguments, all of those reasons were proven utterly false. They were weak to begin with, the got weaker as the case went on, and then after sixteen months they surrendered entirely for a reason. They were wrong. They were as wrong as it was humanly possible to be. The only way they could have been more wrong is to be wearing a GWB campaign button as they held the press conference. Liberals think so. Even lunatic RW morons who would rather eat a raw turd than agree with a liberal about the time of day think this was egregious. Now, you may work for Boston CFS. You may work at Boston Childrens. If so, I'd get my resume together, because before the lawsuit is done on this one, everyone who touched a piece of paper on this debacle is going to get burned, and they should.

Enron was criminal. Bush was a criminal. The people involved in this mess were diabolical and inhumane. They deserve exactly zero mercy from the jury. They deserve nothing but disdain and derision from the masses. I can't imagine a liberal standing firmly on the side of torturing children. I can't imagine a progressive arguing that in this case, perhaps it didn't work out, but perhaps next time we'll be right and it will be all in the child's head and the only way we'll find out is to risk their lives. That isn't medicine. That violates the very first rule of medicine, first do no harm. The Doctors involved should have been fired, and been bared from practicing medicine ever again before now. The people who made the argument on behalf of CFS that the parents were abusing their children by providing medical care from a respected doctor should be fired in disgrace. I'd even love to see the old practice of pillory brought back for this lot. Torturing a child, potentially causing such irreparable harm to her that she spends the rest of her life in a wheelchair is not a minor mistake. It is unforgivable. Keep defending this obscenity if you want. The rest of us will keep demanding only the highest standards of protection for a child. And medical testing on wards of the court, especially if it is expected to provide no benefit to the child, is inhumane, barbaric, and should be utterly rejected by every thinking human. It's astonishing to me that Michelle Bachman who is normally a bat shit crazy lunatic of the RW is on the right side of this issue, while you stand firmly on the pro torture side. By any chance, were you part of the team that argued that water-boarding wasn't really torture, because it did no permanent damage?

[riderinthestorm]

387. I'm just going to stand over here by you. Righteous rant. Thanks for this nt

[kcr]

399. "But claiming the parents are unfit for following medical advice is the question here"

Yes, I question that claim myself. I'm not going to assume the parents are being punished just for following medical advice simply because the parents say so. We have to assume that the hospital, DCF and the judge were all in on the conspiracy to punish just for following medical advice. Not very likely. What's more likely is there was much more to it than that.

[Savannahmann]

424. Really?

I mean, really? Wow, you just won't let go of a bad position will you? You just assume that there is more to it than that? What proof do you have? The proof for our side is news reports from dozens of sources. I'm guessing that the proof for your side is unshakable faith in the Harvard Doctor.

OK, think of this. Here is what we KNOW! Justina was active before she want to Boston Childrens and began her nightmare ordeal.

We know that the Judge slapped a gag order on the parents to prevent additional information from getting out.

We know that the Psychiatrist (Harvard Trained Doctor) Went to Boston's CFS because his opinion was that Justina suffered from Psychosomatic Disease instead of Mitochondrial Disease.

We know that as recently as March 25, the Judge issued full custody to the State in a sharply worded order. He blamed Connecticut for not getting involved in the case to his satisfaction. He blamed the parents for calling the staff of the facility Nazi's.

Then three months later, the Judge reverses the order. In that time period, there was no way for supervised visits to be sufficient for proof of the Parents changing. There was no time for the parents to attend sufficient classes etc.

So what happened? March, the girl is still suffering from being crazy as a loon. May, Justina is transferred to a facility in Connecticut by order of the state.

So after a year, the Judge gave up on the parents. Two months later they were pretty darned good?

What happened is some senior people at the Massachusetts department of health looked at the case in it's entirety and decided that unlike you and your beloved Harvard Shrink, that it wasn't all in Justina's head.

Do you realize you are on the indefensible side of the issue? If a fundie parent was in the news saying that their child doesn't need medical attention because the cancer was all in her head we would be hopping up and down in rage. But your Harvard doctor decides that it's all in her head, and well that's good enough for you. He's a step away from a snake handling faith healer for the love of God. I don't care where he trained. The results are obvious.

Now, you and the snake handling faith healer can go on swearing that you know best because you've been trained at the finest of all schools, while the rest of us examine the facts of the case, examine the reality, and realize that the State just gave up for a reason. That reason is despite the effort by Boston Childrens and the DCF to paint the parents as lunatics for daring to take their children to the Doctor and follow medical advice, the Harvard trained snake handling faith healer was wrong.

I'm sure that the Harvard Trained snake handling faith healer is still under the firm opinion as he points to his wall where a copy of his degree is hung that if Justina would just believe that she's crazy, she would be able to walk now. The rest of the medical professionals, not so much. So you can entrust yourself to the Harvard trained snake handling faith healer if you want. Me, I'm going to stick with the doctor who had her up and walking and ice skating and otherwise active.

Because the facts remain. March, the DCF said that the parents were totally unsuitable. The Judge agreed, and awarded full custody to the state. In June, the DCF suddenly reverses course and says the parents should be awarded full custody. So lunatic parents and then two and a half months later, all is well.

The real result is that Justina is no longer under the care of the Snake Handling Faith healer trained at Harvard. (When you say Harvard you have to put a bit of emphasis on it to show that you mean the Harvard. Imagine Thurston Howell from Gilligan's Island)

[pnwmom]

432. That is all they were ever accused of doing and you know it. The documents are out there now

and you can't keep pretending you think there was something else involved. The sole issue was over-medicalizing and the sole reason they thought that was because they didn't agree with the diagnosis of a mitochondrial disorder. They thought she had a somatic disorder, and all they needed to do to fix her was take away most of her meds and put her through daily physical therapy.

The judge wasn't "in on it," at least in the beginning. The social worker lied to him in her report. And from there everything snowballed and no one wanted to admit that the psychiatrist's hunch was wrong and Justina should never have spent a day out of the custody of her parents -- much less 16 months.

[pnwmom]

431. + a million. Thanks for this.

I think you should have written the OP.

[Savannahmann]

441. Not at all.

If I had written it, nobody would have commented. But thank you for the statements of appreciation and support.

[pnwmom]

430. In this case a child needed protection from the psychiatrists at BC and the state of MA.

And from the lying social worker who said she didn't know why the parents thought Justina had mitochondrial disease -- when she knew very well the reason: because Dr. Mark Korson had already explained his diagnosis to her.

[pnwmom]

429. The parents were carefully following the advice of top metabolic and GI specialists,

one of whom, Dr. Flores, was lured to B.C. to bring his practice there.

It is insane to blame them for getting their sick daughter good care, and an insult to the highly skilled professionals involved in her case at Tufts.

[pnwmom]

433. No, we shouldn't. We shouldn't let the Harvard name deprive us of all common sense.

The metabolic specialists at Tufts University were more capable of judging whether Justina should be treated for mitochondrial disorder than all the Harvard psychiatrists and psychologists at B.C.

Even the judge and the State of MA finally agreed with that. That's why they returned Justina to the care of the doctors at Tufts University Hospital and took her away from the psych docs at Harvard.

[cherokeeprogressive]

388. ^^^^THIS^^^^ A thousand times THIS. n/t

[Orrex]

275. Previously, the one-sided nature of the story was problematic

Here's one iteration of that discussion.

If I am shown to be mistaken in my original assessment, then I will of course recant. However, at this point it seems that we still have just one side of the story, and their story hasn't changed much since the first time around.

Also, the questionable nature of the reporting site is troublesome. I understand that you're having difficulty finding a mainstream article on the story, but we simply can't draw conclusions from such a clearly biased source.

[pnwmom]

281. Have you read the multiple articles that have been published

on the Boston Globe, which is a liberal newspaper? I linked to one but there were several.

The Hartford Courant is also mainstream.

Whatever you thought in the past, the situation has changed.

The judge returned Justina's medical care to the metabolic specialist, Dr. Mark Korson, her parents were taking her to in the first place-- a tacit acknowledgement that it was not "overmedicalizing" for them to be getting her treated for mitochondrial disease by Dr. Korson.

And her custody was returned in full to her parents, without any conditions, and she's no longer under the supervision of either Massachusetts or Connecticut. (Which had pointedly refused to open an investigation on her, having no basis to do so other than MA's requests.)

The young woman who had been ice skating just a few weeks before a bad case of the flu landed her in the Boston Children's ER, has been in a wheelchair ever since. She has also suffered significant hair loss and it turns out that she had pneumonia twice while under the "care" of B.C. She also has fallen more than a year behind in her schooling, with her reading level dropping severely.

We now know that her care at BC resulted in a worsening of her health, not an improvement.

I'm sure BC has "their side" of the story. But the bottom line is that, after a 12 hour period of observation, they filed papers to remove a girl from her parents for what turned out to be 16 months. And in the end they gave up on their methods, whatever they were, and returned her to the care of her original doctors at Tufts. They hadn't helped her. They'd only hurt her.

[Orrex]

283. A few questions, though I must defer to your greater familiarity:

The young woman who had been ice skating just a few weeks before a bad case of the flu landed her in the Boston Children's ER, has been in a wheelchair ever since.

It was confirmed to be the flu, I take it? Diseases often present symptoms like those of other diseases. Are we reasonably sure that there was no other underlying condition?

We now know that her care at BC resulted in a worsening of her health, not an improvement.

Perhaps I'm missing something, but is it indeed clear that her care at BC caused her worsening health, or did her health simply worsen subsequent to her treatment there? That is, are we reasonably sure that BC's care was the cause?

It was my impression that the original story was being fueled by Rightwing propaganda machinery, so unfortunately the story's basic credibility is damaged.

I haven't read all of the currently linked articles, but are the articles independent of one another, or are they based on one underlying source?

[pnwmom]

286. The Boston Globe did its own very thorough, balanced, investigation.

The initial story was in two parts, and I put the link down for the first. But they had a number of follow-up stories, too.

I've read nothing about whether a flu was ever officially diagnosed. As I understand it, her parents brought her to the hospital because they thought she had a flu, and that she wouldn't stop throwing up -- which, for a girl with mitochondrial disease, is a real crisis.

(A few years earlier she had had another crisis and she needed surgery for it -- she had a 20 inch band of cartilage wrapped around her intestines. They removed her appendix while they were at it, to prevent future problems. But her intestinal problems -- which are often a hallmark of mitochondrial disease -- continued. They were so severe that even with heavy laxatives her bowels were impacted. So after testing her bowel motility, her GI doctor at Tufts decided to recommend that they install a "cap" that would allow her intestines to be "flushed" as needed. These were the "multiple surgeries" that the Boston Children's hospital psychiatrists objected to. Ironically, other GI doctors at BC perform -- on other children -- the cap procedure that the psychiatrists thought was so extreme.)

So, to answer your question: no, we're not sure she had the flu. And, yes, she DID have an underlying condition that can cause flu-like symptoms: the mitochondrial disease that had been previously diagnosed by a metabolic disease specialist, Dr. Thorson, a professor at Tufts University. He made a clinical diagnosis based on her symptoms and the fact that her older sister had a muscle-biopsy proven case of the disease. (A negative biopsy doesn't rule out mito disease and the procedure itself can cause a health crisis, so many doctors would opt not to put a second child in a family through the procedure if that child had symptoms like a sibling with a positive biopsy.)

Unfortunately, at least one psychiatrist at BC has been reported to say he didn't "believe in" mitochondrial disease. But the disease he apparently believes in, Munchausen by proxy, is much rarer than mito disease.

You're right -- we can't know for sure that her health wouldn't have worsened anyway. But we do know that they removed her from medications that had appeared to be helping both her and her older sister -- and that she is worse now, not better. (One of these "unnecessary" medications was given to correct an irregular heartbeat, and was important because she'd had a stroke at age 7 -- so her parents were particularly fearful about that medication being taken away. I don't know if she was ever put back on it.) Whatever they were doing did not stop her decline and also deprived her of the support of her family (who were only allowed 1 hour per week visits) for 16 months of her life. All because of what Dr. Korson told the Boston Globe was a "hunch" that she had somatic disorder. That her brain was producing her symptoms.

You are also right that the right-wing was fueling the story. But that's because the left-wing dropped the ball. And I'm asking why? We care just as much about children's rights and health -- much more, I think. We actually want all children to have proper food, housing, and health care. So why, when these parents reached out for help, and the Boston Globe published its story, did the MSM for the most part, ignore it? And why have her only champions been people with right wing and religious agendas?

If the right wing suddenly decided to go with the Catholic "whole garment" pro-life theory, and suddenly decided to oppose the death penalty, would progressives suddenly have to start promoting the death penalty? Do we only act in opposition to the right-wing or do we have some principles we stand behind even if -- horrors -- the opposition comes to the same conclusion about an issue that we do?

Maybe BC has another side that hasn't come out. But I don't support the state being able to remove children for 16 months without a very good reason. And there is no evidence that this was ever anything other than Boston Children's not agreeing with the diagnosis Tufts doctors had given her, and accusing the parents of "overmedicalizing" as a result.

[pnwmom]

291. Welcome, FreeJustina.

Forgive me if I try to clarify . . . You said it wasn't true that various religious organizations helped early on; that Liberty Counsel and Rev. Mahoney didn't come on board till February 2014. And then you said, "We tried for months before this help to get anyone & everyone on all sides to help, but only the 'right' seemed to care." So either the right cared and joined early on, so Justina's case (falsely) seemed to become a right-wing issue, or the right-wing didn't get involved at all till February. I'm not sure which you're saying.

I do think some liberals were staying away from the case because they thought it was being pushed by untrustworthy people (like Glenn Beck), but I don't think that excuses anything. I think that Justina's plight should have drawn support from all parts of the spectrum, and certainly from liberals and progressives. But I don't believe the lack of support was because liberals want to control everything. I can't speak for people in the Boston area (I'm in Washington state) but the problem was the media coverage (and wasn't that limited by the gag order?.) If you google, you'll see there was virtually no television coverage outside of Boston and Connecticut -- other than Fox news. (And no one I know watches Fox.) And most people outside of Boston don't read the Boston Globe (which ran its first story in December, I think.) Whenever I tried to talk to people here about Justina, they'd never heard of her.

In any case, I agree with you it shouldn't have taken so long for you to get support in this fight and I'm sorry that liberals weren't there by your side. I hope Justina's law will be passed, and passed quickly, so nothing like this happens to another child again.

All my best to you, and to Justina and her family.

[friendly_iconoclast]

294. Well done, pnwmom. K&R

[pnwmom]

295. Thanks!

[friendly_iconoclast]

296. FWIW, I'm also disgusted by some of the posts in response to the OP

I've never seen so many clear-cut examples of association fallacy and
unwarranted deference to authority as I saw on this thread.

As you suggested, if this had happened in Texas, they'd still be shouting about it

It's a fucking disgrace that so many progressives turned (and continue to turn)
their backs on the Pelletiers because they're getting support from the 'wrong' people.

Most people are unfamiliar with either: a) the sordid history of experimentation
upon wards of the state in Massachusetts

https://en.wikipedia.org/wiki/Walter_E._Fernald_Developmental_Center#Nuclear_medicine_research_in_children

http://books.google.com/books/about/The_State_Boys_Rebellion.html?id=h1gcGja_Ku4C

http://tech.mit.edu/V117/N65/bfernald.65n.html

MIT to Pay Victims $1.85 Million in Fernald Radiation Settlement
By Zareena Hussain
Associate News Editor

MITand Quaker Oats Co. agreed last week to pay $1.85 million to children at the Walter E. Fernald State School who were subjects of nutrition studies during the 1940s and 1950s as part of an out of court settlement. The students were fed breakfast cereals laced with minute amounts of radioactive iron and calcium tracers. Children were encouraged to take part in the testing with promises of gifts or trips to Red Sox games.

Fernald had been officially designated as a school for retarded children, although some of the residents at the time of the experiment were not retarded.

Following the declassification of federal records on post-war radiation experiments in 1993, a state task force investigating postwar radiation experiments throughout Massachusetts found children at Fernald were used in experiments without the informed consent of parents. A class action suit against MIT and Quaker Oats was filed by former students in December 1995

or b) the near-medieval levels of turf warfare between Massachusetts institutions

[pnwmom]

297. The worst part, to me,

was that someone apparently from the family responded to me, saying that I was wrong -- that they struggled for more than a year to get anyone to help them. So it wasn't just the fact that the Pelletiers had connected with right-wing people that kept progressives from getting involved. This person thought maybe liberals never tried to help because they are more likely to want government to control people's lives. I tried to respond but before I could answer, someone alerted and this person was kicked off after a single post. There was only that one sentence that could be seen as "attacking" progressives -- the opinion that liberals wanted government control -- out of a long, anguished post about how they couldn't get anyone to listen to them.

So we proved our need for control again, by cutting this person off without a discussion. I never got a chance to explain that most liberals do NOT want the government intruding unnecessarily into our lives. That's the meme of the right-wingers that the Pelletier's are surrounded by now -- the only people who have been willing to help them.

Someone else in the thread says s/he knows the family personally and that they're nice, normal people. It's too bad some alerter was so thin-skinned and some jury agreed.

[proverbialwisdom]

298. Here's a link I recently came across listing experts on the frontier of this emerging new science.

Last edited Tue Jul 8, 2014, 03:20 AM - Edit history (1)

Three are affiliated with Harvard (see COMMAND F search). It's a mistake to politicize the case or condemn entire institutions when always specific individuals are at fault.

MUST READ IN FULL (signatories at link):

http://www.solacenutrition.com/reading-room/mitochondrial-disease/mitochondrial-research-letter.html

Letter to President Barack Obama
January 22, 2009

President Barack Obama
The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500

Dear President Obama:

We represent a broad spectrum of physicians, scientists and researchers and are writing to express our strong support for your commitment to expand scientific research. As you consider this increased investment in science, we want to highlight a very important and potentially far-reaching area of inquiry. Specifically, greater understanding of the mitochondria could provide insights into treatments for a wide range of diseases and conditions that affect millions of Americans.

Mitochondria are often called the “powerhouses of the cell.” They are specialized compartments within almost every cell and are responsible for producing the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce the energy required for all bodily functions. If the mitochondria fail to produce sufficient energy, the cell will not function properly and organ systems will fail.

Research has revealed that mitochondrial dysfunction is at the core of many common illnesses and chronic conditions such as Alzheimer’s disease, Parkinson’s disease, diabetes, heart disease, obesity, osteoporosis, cancer and even the aging process. Autoimmune diseases such as multiple sclerosis, lupus and rheumatoid arthritis also may have a mitochondrial basis. There also is new evidence that mitochondrial dysfunction plays a role in the cause of some children’s autism.

There also are “primary” mitochondrial diseases that usually result from genetic defects that reduce the ability of the mitochondria to produce energy. Mitochondrial disease was recognized relatively recently with the first cases diagnosed in adults in the 1960s and in children in the 1980s. Every 30 minutes a child is born who will develop a mitochondrial disease by age ten. Research published six months ago showed that more than 1 in 200 people have mitochondrial DNA mutations that could lead to mitochondrial disease.

Acknowledging the potentially far-reaching implications that would result from a deeper understanding of the mitochondria, The National Institutes of Health recently committed to establish a mitochondria research initiative that would involve all NIH institutes. This initiative will play a significant role in advancing science and medicine. In the 2008 appropriations legislation, the United States Congress expressed its support for intensified mitochondrial research within NIH.

While some steps are being taken, much more could be done to increase our understanding of this critical area of human health. Because mitochondria are so important to the health of cells, a full understanding of their function and dysfunction will have a significant impact on the health of our citizens and will lead to prevention and cures for medical problems that currently affect millions of Americans. We respectfully urge your Administration to include research into mitochondrial medicine among your top medical and research priorities.

Respectfully,

http://www.ageofautism.com/2013/03/from-the-editor.html

COMMENTS:

Hannah Poling is not an isolated or "rare" case. Many of our kids have an underlying mitochondrial dysfunction. This is our sensitive subset of kids who should never have been put on the aggressive vaccination regimine.

Letter to President Barack Obama signed by over 50 Mitochondrial experts:

http://www.solacenutrition.com/reading-room/mitochondrial-disease/mitochondrial-research-letter.html

Posted by: autism mom | June 20, 2014 at 02:38 PM

[pnwmom]

299. It is a mistake that DCF made. There were two groups of physicians:

one group of Harvard docs -- psychiatrists and psychologists -- who practiced out of Boston Children's.

And the other was a group of Tufts physicians -- metabolic and GI specialists -- who practiced out of Tufts Hospital.

The Harvard group wrested control of Justina's care from the Tufts group -- with the approval of DCF -- when Justina had the misfortune to end up in the emergency room there.

The Harvard psychiatrists decided that the Tufts metabolic specialists were wrong about the diagnosis. They insisted the parents sign a document agreeing to put her under the care of B.C., to allow them to take Justina off her prescribed medications, and to promise not to consult with any other physicians inside or outside of BC. And when the parents wouldn't sign, they got DCF to take custody away.

The Harvard psychiatrists wouldn't even allow Justina to be seen by the GI doctor she originally came to BC to see, Dr. Alex Flores. (He had recently moved his practice from Tufts Hospital to BC; and he hadn't been replaced yet at Tufts, so when Justina had a crisis Dr. Korson -- the metabolic specialist -- recommended to her parents that they take her to B.C. to see Dr. Flores. Imagine how much Dr. Korson regretted that recommendation!)

So the B.C. Harvard docs weren't interested in having her seen by B.C.'s own Harvard metabolic specialists. These psychiatrists had already determined on their own that the proper diagnosis was somatic disorder and she shouldn't be seen by any other doctors.

By the way, the psychiatrists felt that she had had too many surgeries. One was a surgery to remove 20 inches of cartilage that was wrapped around her intestines. Certainly their own colleagues, the GI specialists at BC, would have agreed with that surgery. (Especially Dr. Flores, the one who performed it.) The only other surgery was to install a "cap" so her non-functional colon could be flushed. This was a relatively new procedure at the time it was done and the doctors at Tufts only did it after a careful study to show the functioning of her colon. But among the doctors across the country who were also performing the procedure -- Harvard doctors at Boston Children's, of course. So the procedure the Harvard psychiatrists deemed excessive and unwarranted is performed by their own colleagues at B.C., for children just like Justina. (It's not a treatment for mitochondrial disorder; it's a treatment for a non-motile intestine.)

[proverbialwisdom]

300. Harvard has people on both sides of this, as shown, so your Harvard-bashing is too indiscriminate.

http://www.foxnews.com/health/2014/04/01/reversal-fortune-justine-pelletier-family-to-take-up-offer-from-alan-dershowitz/

Justine Pelletier family wants to take up Harvard Law Prof. Alan Dershowitz's offer to help
Published April 01, 2014
FoxNews.com

The family of Justina Pelletier, the 15-year-old girl at the center of a custody battle and diagnostic dispute between two of Boston’s top hospitals, plans to take legal legend Alan Dershowitz's offer to help.

Lou Pelletier told FoxNews.com on Tuesday he was thrilled to learn the high-profile Harvard Law professor who has won several high-profile court battles wants to help him win back custody of the girl.

When you hear about a case like this you scratch your head and you say ‘something else must be going on,’” Dershowitz told Fox News Channel's Mike Huckabee over the weekend.

Dershowitz told FoxNews.com Tuesday he is interested in working with the family's current legal team on "broader Constitutional issues" surrounding the case. The attorney said he isn't looking to "micro-manage litigation," but was moved to offer his help on a pro bono consulting basis after reading about the family's plight in newspaper accounts.

<>

Dershowitz, who said he had great respect for both hospitals, said he found it disturbing that the state would take custody of the child as a result of a dispute between two esteemed medical institutions.

“Parents have a right to be wrong, as long as they’re acting reasonably," Dershowitz said. "And if two distinguished medical centers have different diagnoses, it should be the parents, not the state, that determines the course of treatment.”

Dershowitz also said a gag order imposed by the judge to stop the family from talking to the press was "without a doubt unconstitutional."

<>

http://www.mitoaction.org/advocacy

...The Pelletier situation also has exposed rifts within the medical community over the scope of mitochondrial disease, polarizing physicians between those who restrict mitochondrial disease to a small subset of genetic or other well-described disorders and those who treat symptomatic patients clinically even if a faulty gene cannot be found.

[pnwmom]

304. The Harvard metabolic specialists didn't speak up for 16 months.

They just let the psychiatrists take over.

They should have been speaking out to inform the public that mitochondrial disease is a very real disorder and not a figment of imagination. I fault them for not doing that -- at the very least, they could have done that. Instead, they kept quiet while a young girl was held for more than a year without the treatment she needed for her physical condition.

If I lived in the area I'd never take a child to that hospital. Not after what I've learned about it.

[proverbialwisdom]

320. Related to this post although not specifically to the thread.

http://www.democraticunderground.com/101697124

[Octafish]

352. It's a hideous part of history: American kids used for government experiments.

Know Your BFEE: American Children Used in Radiation Experiments

[LittleBlue]

391. You're taking heat for this thread. Just want to thank you for

bringing it to our attention.

Poor Justina

[pnwmom]

397. Thanks, LittleBlue. Unfortunately, there are more Justina's out there.

We just don't hear about most of them.

You might be interested in this -- a link to the actual document they tried to force the Pelletiers to sign. Unbelievable.