Mom of Sick Connecticut Teen 'Collapses' in Court After Judge Sends Kid to Foster Care

[magical thyme]

http://abcnews.go.com/Health/sick-connecticut-teen-justina-pelletier-foster-care/story?id=22668251

"She is not doing very well," said Staves. "Linda saw her on Friday … and there were five DCF workers present. There is no private time and she is not allowed to take cell phone photos of her daughter. ... She had red marks on her abdomen and she was very weak. It's now the third semester of school since February 2013, and they haven't given her any education, she can't attend church. It's unbelievable."

"If she had somatoform disorder, then her condition would have improved," he said. "She's not gotten any better."

Pelletier had already broken an Essex County family court judge's gag order with ABCNews.com earlier this month, saying, "I have got to save my daughter's life."


This case is so sickening...it reads like a right-wingers anti-government worst nightmare. But it's true. And terrifying. The short version is this: Justina was diagnosed with mitochondrial disease a couple years ago, which her older sister also is being treated for, and she was in treatment with metabolic specialists at Tufts. So when the newspapers write that "her parents say that she has mitochondrial disease," that is because she was effing diagnosed by doctors who actually know her and the disease, and she has been in treatment for it. She was doing well in treatment: ice skating, hiking with her dog, etc. And then she got the flu and her regular doctor was away, so Tufts suggested she go to children's because her GI specialist had recently moved there from Tufts. (Mitochondrial Diseases impact the GI tract) She never did get to see her GI specialists, because a genius at Children's with 7 whole months of experience as a doctor decided that Mitochondrial disease isn't real and that what she really had was "somatoform disorder" iow that her symptoms were psychosomatic....and reported her parents for child abuse. The Commonwealth of Mass has accused these poor people of overmedicating their daughter...for following their doctor's treatment plan to the letter!!!!! They refused to let them take her out of Children's back to Tufts, and instead essentially kidnapped her and locked her up in a psych ward. For over a year!!!!

They now pat themselves on the back for a job well done. In the meantime, they have deliberately withheld her prescribed (and desperately needed) treatment. As a result of Children's psychiatric "treatment" she is now paralyzed below the waist and wheelchair bound. She had a stroke at age 7 (a not uncommon result of mitochondrial disease) which left her learning disabled; she has been kept out of school for a year and is now forgetting how to read and write. They have treated her parents like criminals, kept her from her friends, her family, her dog, her life, locked up in a little room laying in bed in chronic, severe pain (and refused her prescribed pain medication).

From the NIH: Mitochondrial diseases are a clinically heterogeneous group of disorders that arise as a result of dysfunction of the mitochondrial respiratory chain. They can be caused by mutations of nuclear or mitochondrial DNA (mtDNA). Some mitochondrial disorders only affect a single organ (e.g., the eye in Leber hereditary optic neuropathy [LHON]), but many involve multiple organ systems and often present with prominent neurologic and myopathic features. Mitochondrial disorders may present at any age. Many affected individuals display a cluster of clinical features that fall into a discrete clinical syndrome, such as the Kearns-Sayre syndrome (KSS), chronic progressive external ophthalmoplegia (CPEO), mitochondrial encephalomyopathy with lactic acidosis and stroke-like episodes (MELAS), myoclonic epilepsy with ragged-red fibers (MERRF), neurogenic weakness with ataxia and retinitis pigmentosa (NARP), or Leigh syndrome (LS). However, considerable clinical variability exists and many individuals do not fit neatly into one particular category.
http://www.ncbi.nlm.nih.gov/books/NBK1224/

"In some individuals, the clinical picture is characteristic of a specific mitochondrial disorder (e.g., LHON, NARP, or maternally inherited LS), and the diagnosis can be confirmed by molecular genetic testing of DNA extracted from a blood sample. In many individuals, such is not the case, and a more structured approach is needed, including family history, blood and/or CSF lactate concentration, neuroimaging, cardiac evaluation, and muscle biopsy for histologic or histochemical evidence of mitochondrial disease, and molecular genetic testing for a mtDNA mutation. "

Establishing the Diagnosis of a Mitochondrial Disorder

Mitochondrial dysfunction should be considered in the differential diagnosis of any progressive multisystem disorder. The diagnosis is most challenging when only one symptom is present; the diagnosis is easier to consider when two or more seemingly unrelated symptoms are present, involving more than one organ system. The investigation can be relatively straightforward if a person has a recognizable phenotype and if it is possible to identify a known pathogenic mtDNA mutation. The difficulty arises when no mtDNA defect can be found or when the clinical abnormalities are complex and not easily matched to those of more common mitochondrial disorders."

IOW, this is a recognized group of diseases. There are a number of ways to diagnose, with specific diagnostic criteria. And, btw, treatment is essential. It can ultimately be fatal.

From the Mayo Clinic:

Mitochondrial diseases occur when structures within a cell (organelles) that produce energy for that cell malfunction. Approximately 1,000 children per year in the U.S. are born with some form of mitochondrial disease. Most often, mitochondrial disorders are inherited. However, an uncertain percentage of patients acquire symptoms due to other factors, including exposure to mitochondrial toxins and aging.

Today, researchers have identified over 40 different mitochondrial disorders with unique genetic features. The common factor among these diseases is that the mitochrondria are unable to completely burn food and oxygen in order to generate energy, which is essential for normal cell function.
http://www.mayo.edu/research/centers-programs/mitochondrial-disease-biobank/overview

Compare this with "Somatoform Disorder":


Somatoform pain disorder
Somatoform pain disorder is pain that is severe enough to disrupt a person's everyday life.

The pain is like that of a physical disorder, but no physical cause is found. The pain is thought to be due to psychological problems.

The pain that people with this disorder feel is real. It is not created or faked on purpose (malingering).

A thorough medical evaluation, including laboratory work and radiologic scans (MRI, CT, ultrasound, x-ray), is done to determine possible causes of the pain.

Somatoform pain disorder is diagnosed when these tests do not reveal a clear source of the pain.

Prescription and nonprescription pain medications often do not work very well. These medications also can have side effects, and may carry the risk for abuse.

Chronic pain syndromes of all types can often be treated with antidepressants and talk therapy.

Cognitive behavioral therapy (CBT), a kind of talk therapy, can help you deal with your pain. During therapy, you will learn:
•To recognize what seems to make the pain worse
•To develop ways of coping with the painful body sensations
•To keep yourself more active, even if you still have the pain

Antidepressant medications also often help with both the pain and the worry surrounding the pain
http://www.nlm.nih.gov/medlineplus/ency/article/000922.htm

[LeftyMom]

1. Why is this a story?

http://www.rightwingwatch.org/content/meet-justina-pelletier-religious-rights-next-campaign

Why, after months of total silence and literally no interest, did several Religious Right organizations suddenly and collectively begin to care about this case, all on the same day?

Well, as Beck explained on his radio program today, last week an unnamed billionaire benefactor of his The Blaze network saw the program featuring Justina's father and was so outraged by it that he vowed to hire a legal team and turn this into a crusade:

As Beck said, the "new attorney" hired by this benefactor would be appearing on his program tonight to discuss the latest developments in this case ... and that attorney is none other than Mat Staver:

Mathew Staver, Founder and Chairman of Liberty Counsel, will appear on the Glenn Beck TV Show today from 5:00 to 6:00 p.m. Eastern Standard Time to discuss the ongoing story of Justina Pelletier, who was taken from her parents and is currently being denied medical treatment.

So that at least seems to explain why, all of a sudden, a bunch of Religious Right groups have gotten involved in this complex and frequently confusing case: because some unnamed billionaire is footing the bill for them to do so.

[magical thyme]

3. why is this a story? seriously?

I don't give a flying fuck if Justine's father went to Glenn Beck or wherever he had to.

They've been under an unbelievable gag order for a year while their daughter was essentially kidnapped by a rival hospital to Tufts, denied critically necessary treatment, locked in a psych ward, kept essentially in isolation. He violated the gag order out of desperation.

There are plenty of mainstream news articles about this story, as well as right wing.

As I wrote above, the storyline feeds right into the rightwing nightmare scenario. It just happens to be true.

[LeftyMom]

5. How many kids in state custody haven't you heard of?

Keep in mind, there's a gag order here and nobody who is following the law is telling their story through the media. The court heard the facts, listened to experts, and decided differently. But is it entirely possible if not very likely that the court did so because the one side you're hearing through the media is bullshit?

You're letting yourself be manipulated by your good nature.

[magical thyme]

9. mind you that the gag order directly violates the 1st amendment, and the ACLU is getting involved

Jeffrey Pyle, a lawyer who specializes in free-speech issues for law firm Prince Lobel in Boston, told the Globe that such “a blanket gag order is rare.” He said the order was “breathtaking” in scope because it goes far in silencing what the parents can say over a profound issue.

Several conservative Christian organizations and the American Civil Liberties Union of Massachusetts said they may step in to defend the Pelletiers’ rights to speak out about the case.

from those rightwing nutcases over at the Globe

http://www.bostonglobe.com/metro/2014/02/25/conn-teen-long-custody-battle-move-again/P2e5jYYQHOwD4QnTPW09eN/story.html

[pnwmom]

82. The doctor at Tufts is risking his career by speaking out despite the gag order.

Isn't it entirely possible that Boston Children's, under whose care the girl has been deteriorating for a whole year, might be wrong?

And when knowledgeable medical experts disagree, why shouldn't the parents, rather than any particular hospital or the state, be the ones to decide? The judge doesn't have any special medical expertise. This decision should be left to the parents, in conjunction with the girl's doctor at Tufts -- who was doing a fine job taking care of her till a case of the flu put her in crisis and into the clutches of Boston Children's.

[kcr]

13. I agree

Ginned up right wing outrage. There has been some local coverage that delves deeper into the story and gives more details. This isn't a case of a hospital suddenly deciding to kidnap this child for no reason.

[pnwmom]

20. This is a dispute in diagnosis between two top hospitals, with the state choosing the side

of one of them -- and with the state putting a gag order on the parents.


Forget the right wing. How can you not be as outraged as I am at the gag order that's preventing the parents from speaking out and releasing information about their daughter's medical diagnosis by Tufts?

[kcr]

29. It is not a dispute between two hospitals

We aren't hearing from anyone but the parents. Sorry, but I'm not outraged about this. Parents lose custody of their children due to abuse all the time. I don't think hospitals kidnap children for no reason. I certainly won't think this one did because right wing interests have decided to take up this cause.

[magical thyme]

40. Tufts diagnosed and treated successfully for Mitochondrial Disease for 2 years.

Children's sees her for 3 days and a young doctor with 7 months experience decides it's not Mitochondrial Disease and brings in a young psychiatrist who decides it's a mental illness -- and the parents are charged with "medical abuse.'

A year later, and Children's has *still* not allowed their own gastroenterologist, who also is one of Justina's regular doctors, to examine her -- despite her GI problems.

They bring in DHS, who's representative is linked to Children's (no conflict of interest here), and within 4 days, the parents have lost custody of their daughter.

And Children's, by the way, is getting a reputation for this, having taken 5 children in 18 months because they disputed another hospital's diagnosis.

See the links to the Boston Globe articles below.

It is arrogance by Children's to refuse even discuss her case with her regular doctor, who has repeatedly attempted to get a round table of all the doctors involved for a comprehensive care plan.
It is also interdepartmental, political arrogance within Children's, between their psychiatry and gastroenterology.
And it is conflict of interest, where DHS has close ties with Children's.

[kcr]

41. I've read the Boston Globe articles

I've read quite a bit, actually. I live in an area that has been covering it locally for some time. I think Children's reputation will be just fine. Knee jerk reactions by some responding only to media stories giving one side shouldn't be much concern for them. The didn't "take" children just because they disputed a diagnosis. This happens all the time without parents losing custody. There is very likely much more to this. Of course the parents think it's just a matter of disagreeing with a diagnosis and they're just innocent victims. And because their story is the only one we're hearing, we get horrible hospital kidnapping child for no reason! Media pounces for sensational story.

[magical thyme]

43. everything I've read on it says they did take her for no good reason.

and everything I've read says they finally released her only because of the costs of her ongoing care.

"Somatoform Disorder" is not really a valid diagnosis, imo, based on everything I've read about it and everything I understand about science and diagnostics. Not being able to identify a physical cause in no way means there is no physical cause, let alone demonstrate a psychological hypothesis. Plenty of illnesses were "somatoform disorders"...until they suddenly weren't. Hell, my mother's ulcers were "stress-induced" until a valiant Australian doctor proved that Helicbacter pylori most certainly can survive the acid in your stomach.

Her condition is improved after a year in their care, according to Children's records, because now she can lock and unlock her wheelchair. That is not a significant improvement, imo.

The Globe articles aren't limited to the parent's opinions. Dr. Kormen's interview is quite illuminating and makes it clear he was completely shut out of her care, despite his numerous efforts to set up round tables to work with their psychiatric dept. for a comprehensive treatment program. It is not the parent's opinion that the Children's doctors who made the calls are young and inexperienced.

And why, when she clearly has gastrointestinal issues, has Children's prevented their on gastroenterologist who also happened to have treated her for 2 years while he was still at Tufts, from examining her? Why did they not even consult their own doctors? That smacks of interdepartmental political warfare. Anybody who think that doesn't exist in large hospitals (or even small ones) is living in la-la land. I face those battles in the bottom level trenches every day at work in the lab.

I also found, last night, a scan of a sheet of paper that was either a very good forgery of an internal Children's document or a clear HIPAA violation. It was on Children's letterhead and outlined her treatment program, spelling out what treatments prescribed by Tuft's were going to be dropped, and other details of her treatment that were, quite frankly, awful. I wish now I'd bookmarked, because search as I might, I haven't been able to find it all morning. If and when I do, I intend to post it here. The only people who would have had access were either Children's employees or possibly involved in the court case -- somebody 'in the know' had to have leaked this and at significant risk to themselves.

The fact is that young, inexperienced doctors at Children's disputed the diagnosis, withheld the medication that had helped Justina for 2 years, and then didn't like the way the parents behaved.

They accused the parents of 'medical child abuse' for following Tuft's treatment program, and brought in DHS, who has close ties to Children's. Those are facts.

I don't like the way the parents behaved either, and as I read those descriptions, and I suspected immediately what happened. But however much they didn't approve of the parents behavior, that didn't give them the right to shut out her doctors of the prior 2 years and that didn't give them the right to grab control of her like that.

[kcr]

45. I think you and I are interpreting things very differently

For one thing, nothing is clear, here. Lots of clearlys in your posts. Why wouldn't they let the gastroenterologist who treated her for two years prior examine her? I can think of some, if the concern is the parents were abusing her by subjecting her to unnecessary medical treatments. Why would they let the doctor these parents used in this form of abuse? From their point of view, this was a doctor who missed the signs. It would completely make sense for them to do this.

The hospital did not take such drastic measures simply because they didn't like the parent's behavior. Hospitals do and should have the right to intervene in cases of abuse. I don't know if that's the case or not here, but I'm not going to automatically assume it isn't, and nothing I've read or seen in any coverage says this is a travesty of justice.

[magical thyme]

47. the simple fact that they totally excluded the initial diagnosing doctors from consultation tells me

this is a travesty of justice.

The fact that they didn't include their own gastroenterologist from the start strikes me as very odd indeed. The parents came to Children's specifically to see the gastroenterologist, and the hospital instead barred him from seeing her. A young hotshot ER doctor with 7 whole months experience who had yet to complete his specialty in neurology decided it wasn't mitchondrial disease based on what? His lack of expertise in metabolic disorders? His lack of experience in general?

Even if they questioned the diagnosis, where she presented with and her history included gastroenterological signs and symptoms, I would have expected them to have at least included the original gastroenterologist in any examinations and consultations. They might have another gastroenterologist in their staff also examine as well, since it is quite normal to get a second opinion from within your own staff, but I certainly would not expect that an original diagnosis and treatment would be thrown out based on the opinion of a young, inexperienced ED doctor and a young psychiatrist.

And I would have expected them to contact her regular doctor, if only to confirm what testing had and had not been done, what the results were, what had he seen that had led to his diagnosis and treatment plan. You might then question what was done, and disagree with it, but you don't accuse the parents of medical abuse when they were working with a leading doctor and following his prescriptions and recommendations.

I can tell you right now where I work when we have a patient present with extreme symptoms, say critical-level lab results, we seek out their primary physician, we don't just wing it.

It is one thing for an ED doctor to raise questions. It is quite another thing for a hospital to act in the manner Children's has, not only on the initial night in question, but their subsequent behavior, refusing to work with her prior doctors.

That simply is not normal practice, in my experience. At the small rural hospital where I work, we often have very sick patients that we end up shipping out to larger, specialty hospitals. I have never heard of them excluding information we have on testing and treatment we have provided. Quite the opposite -- if we don't transmit our data fast enough for them, they call looking for it.

The parents they accused of "subjecting to unecessary medical treatments" were acting on the advice and prescriptions of the doctors who originally diagnosed her. They could not "subject her" to invasive surgeries. And since when do insurance companies go around paying for expensive and unecessary surgeries performed because the parents demanded them?

Her parents didn't demand those treatments. Their "doctor shopping" consisted of looking for a doctor that was able to come up with a diagnosis and treatment plan that worked. That is a very common experience when people suffer from rare diseases that aren't recognized by a lot of doctors, least of all inexperienced doctors.

Imo, their refusal to even consult with her 2 physicians of 2 years, and their suspect diagnosis of mental illness based on excluding obvious physical causes after 3 days constitutes medical malpractice, and everything they have done since then has been with the intent of protecting themselves.

As with some recent political episodes, as this gains more publicity, I won't be surprised to see former victims coming out of the woodwork with their own stories. I have already seen some interesting things.

[kcr]

56. What do they do where you work when they suspect child abuse?

Specifically Munchhausen's by proxy, which is what it seems the hospital thinks they were dealing with. I note you don't talk about that. You keep posting as if the hospital should have just ignored whatever abuse signals they may have seen and kept on as if everything were normal. Yes, a hospital who isn't looking at a case of Munchhausen would normally include her gastro, because she has gastro issues. But from their perspective it wasn't. You've come to the conclusion that Boston is wrong! I haven't. This child could indeed be a victim of Munchhausen's, and those previous DXs all wrong. Why is it that your faith in Tufts is absolute? But Boston is baad. Because it fits the narrative?

[magical thyme]

59. suspected child abuse is one thing. but throwing out an existing diagnosis and treatment plan

without even consulting with the doctors to confirm the patient's history -- especially when one of the doctors involved in the history is on your own staff -- strikes me as medical malpractice.

That is based on my experience working in a hospital. We have patients from around the world come into our ED. We do not exclude their medical histories because of gut feelings or hunches. We seek them out to aid in diagnosis; if they are conscious we find out who their primary physician is. In the lab, if we get critical results from a visiting outpatient, we make every attempt to contact their primary physician.

They may still have suspected child abuse and reported the suspicians. But you do NOT ignore prior testing, history, treatment or any information that may give you clues. You seek it out first and weigh that information in your evaluation. And you confirm that testing and history with the physicians who performed it. You may take the information initially from the patient or parents, but then you confirm it directly with the physicians.

The simple fact that they not only did not seek that information and input out, but purposely excluded it makes them very suspect to me. That is not normal practice, at least where I work or with any of the area hospitals we occasionally work with (which has on rare occasion been Mass General because we have, on rare occasion, shipped patients there).

[kcr]

65. How could they not throw it out?

It was tool being used to abuse her, if their suspicions are confirmed. You are jumping to conclusions claiming this hospital is just kidnapping her from these parents who only wanted a second opinion, because they had a valid diagnosis. It may not have been a valid diagnosis and Boston is right. This hospital very well could have saved this child's life.

[LisaL]

69. Oh please.

She was diagnosed at Tufts with mitochondrial disease. It's not like parents came up with diagnosis based on thin air.
Apparently Children's hospital doesn't believe in mitochondiral disease, but whatever they been treating her for doesn't seem to be working.
So how did they save her life?
She is in a wheel chair.
Apparently not even getting an education from what parents have said, and she likes school.

[kcr]

70. Talk about thin air

Apparently Boston Children's doesn't believe in mitochondrial disease? According to whom? They saved her life if they noted the child abuse and took her out of her parents custody. Because I'm not jumping to conclusions and automatically buying the parent's story, the only story we're getting.

[magical thyme]

76. the parent's story is NOT the only story we are getting. Dr. Korson has been interviewed

and provided his perspective as well. Reporters have interviewed friends of the family. The Globe reports they gathered medical records and other information. Former workers at Children's have offered some insight into what goes on there. Lawyers who have clients who also had their children taken into Children's psych ward have also offered their experiences.

You are certainly jumping to conclusions. You are jumping to the conclusion that Children's may have saved Justina's life by refusing to get a full medical history on her prior to terminating her current treatment and forcing their own on her. You are assuming their accusation of medical child abuse against the parents for following their doctor's recommendation -- without even bothering to find out why her doctor gave the diagnosis, and in fact refusing to avail themselves of that information -- was endangering her life.

What I am saying, as a lab technician who actually works in a hospital with doctors who actually diagnose and treat patients, and who actually studied healthcare, including diagnosis and treatment (from the perspective of the testing) is that by refusing to get a full medical history, family medical history, and personal history as part of her diagnosis, Children's was putting her life at extreme risk.

YOU DO NOT DIAGNOSE WITHOUT GETTING AS MUCH INFORMATION AS IS AVAILABLE. PERIOD. END OF STORY.

Presenting signs and symptoms are only a small piece of the puzzle.

Medical history is important -- prescription drugs, drug interactions with foods you've eaten, over the counter drugs with other over the counter drug interactions, all matter.

Family history is important, from illnesses in the family to recent travel. Present with malarial symptoms does not mean you have malaria or that you are doing drugs. Oh wait, you went to the cape over the summer -- consider babesiosis.

Presenting with bruising does not mean you've been beaten -- you could have coag issues, you could be on coumadin therapy or have hemophelia.

So doctors take a medical history, a personal history, they run some set tests and some specialized tests depending on what the patient is presenting with. And the results of those tests may or may not lead to additional tests.

And presenting with a medical history with the diagnosis of a rare disease, some changing of doctors, and some surgery (with the surgeon right in your hospital) means you go to the diagnosing and treating doctors and find out how they based their diagnosis.

Because even if you reject their diagnosis, you are doing so in an informed way, instead of out of ignorance.

That is how diagnosis is properly done.

You are saying by ignoring her medical history, they may have saved her from parents following her doctor's life. I am saying by ignoring her medical history and refusing to avail themselves of her prior doctors' knowledge of her case, they may well be guilty of medical malpractice.

[kcr]

81. Like I said

The parent's side of the story. Reuter's interviewed friends of the family? Parent's side of the story. Dr. Korson? Parent's side of the story. His motives could be that he doesn't' want to admit his DX is wrong, and given the context of the accusations that could mean he was manipulated by the parents. Jumping to the conclusion that we don't know for absolute certain what happened and that this isn't the travesty being portrayed? VS your conclusion that you are certain she was kidnapped by this highly regarded hospital. Right, who's jumping to wild conclusions.

These types of hard to diagnose diseases and disorders are exactly the kinds that lead to these situations. Abusers use them because it's easy to manipulate medical providers. There are other signs to look for also, like the patient acting one way when a parent is present, but another when they aren't, among many others. We just don't know exactly what evidence Boston Children's has.

[magical thyme]

71. um, now you are accusing the Chief of Metabolism Service/Director of the Metabolic Disorder Clinic

of child abuse. The parents were simply following their doctors orders. That would include, also, the gastroenterologist at Children's who had performed her surgeries in the past.

I repeat -- you do not throw out prior data. You at least look at it. You may, on examination, find you disagree with the diagnosis. And that is fine. But you have to first look at the data to make your determination.

You do not make a diagnosis based on one or two pieces of information. You gather all the available information. That includes clinical signs and symptoms that the patient is presenting in front of you. And that also includes their medical and personal history. Anything less than that is medical malpractice, and that is what you are suggesting is correct.

For example, if a child comes in with bruises, you can and should suspect child abuse. But if the parent explains your child has been diagnosed with a specific disease, you have an obligation to contact the provider who made that diagnosis, get a copy of those medical records and understand the basis of that diagnosis, prior to accusing the parent of abusing their child, taking the child away from the parents and removing whatever medication their life depends on. Because there are rare diseases that cause bruising, that can make it look like a child has been hit when in fact they have that disease and it can be proven that they have that disease.

And you have demonstrated with this post that you have absolutely no idea what you are writing about. You know NOTHING about diagnosis. Not a thing.

[kcr]

72. Um, no, I didn't

I'm not saying it's 100% that Boston Children's is correct. I'm just saying that this isn't the travesty being portrayed. It's possible Chief of Metabolism Service/Director of the Metabolic Disorder Clinic was manipulated by child abusers. That isn't accusing him of child abuse.

[LisaL]

108. If this was a case of Munchausen by proxy, the child should have improved

once removed from the home. She is in a wheelchair.
So it doesn't add up.

[kcr]

111. Should but not always

And her condition hasn't been verified by an independent source.

[pnwmom]

48. Yours is the knee jerk reaction, responding as you do because Glen Beck is among

the people supporting the parents.

Or maybe you're just in thrall to Boston Children's and Harvard.

But the parents, not you, and not the State, should be able to decide whether to get her care at Children's, or Tufts, or any other reputable institution.

And meanwhile, the girl's condition is deteriorating, and all Children's has is excuses. What will they say when she dies of this disorder?

Oops?

[kcr]

53. My non knee jerk knee jerk reaction happened before Glen Beck hopped on board n/t

[pnwmom]

46. It's a dispute between a top mitochondrial doctor at the Tufts hospital

with the psychiatrists at Boston Children's.

When reputable doctors disagree, it should be up to the parents to decide who to listen to, not the state. At the very least, the parents shouldn't be subject to a gag order.

You're having a knee jerk reaction to the fact that some right wing groups are supporting these parents. So what. EVERYONE should be supporting these parents in their quest to get the gag order lifted.

[kcr]

54. No, I'm not

I'd formed the opinion that it's possible these parents are abusing their daughter well before they decided to bring the right wing whackadoodles to their cause. It should be up to parents to decide. And they do. It happens all the time. And they don't get their kids kidnapped by hospitals when they do it. But sometimes hospitals note something is wrong, because child abuse does happen.

[pnwmom]

55. Yes, you are. You said this was "ginned up right wing outrage."

Clearly you can't stand to be on the side of Glen Beck on this issue. But on this issue he's right.

You say it's "possible" these parents are abusing their daughter -- by getting her medical care from a top doctor at Tufts! Is he abusing her, too?

And because it's "possible," you apparently think it's fine that the girl has been locked away from her parents for a YEAR, and that her parents have been under a gag order not to go public about this. The father is risking jail for contempt charges.

Unbelievable.

[kcr]

57. I said it was ginned up outrage because it is indeed ginned up outrage

It is a common right wing talking point that it is government overreach to take children away from their parents for abuse. They were more than willing to take up for these parents. But as I said before, this is a local story where I am. I certainly didn't jump on the That Awful Kindapping Hospital bandwagon even before the right wingers showed up.

[pnwmom]

60. The fact that they are wrong most of the time doesn't mean they're wrong THIS time.

This girl wasn't being cared for by quacks, or sent to Mexico for laetrile treatments. She -- and her sister, who had a muscle biopsy proven case of this -- were being treated by a top doctor at Tufts, a competing institution.

If they have nothing to hide, then Boston Children's should SUPPORT the parents' request to lift the gag order. But that's the last thing they want.

[kcr]

63. It's not Boston Children's job to support the parents request to lift the gag order

Why should they help the parents in their fight to get their daughter back? I know if I knew a child were being abused, I would not go out of my way to help the abuser in court.

She wasn't being cared for by quacks. That doesn't mean her parents weren't abusing her. For whatever reason they may not have caught the abuse.

[pnwmom]

64. If Boston Children's is doing the right thing, then lifting the gag order will support the hospital.

Why are YOU assuming that lifting the gag order, allowing all parties -- including the hospital -- to speak out freely, will "help the parents in their fight to get their daughter back"?

LOL. Even you realize, on some unconscious level, that the hospital's actions won't survive scrutiny in broad daylight.

[kcr]

67. But that isn't up to Boston Children's

That is up to the court. Boston Children's didn't give the order for the gag, and it isn't up to them to remove it. Why you're blaming Boston Children's for the gag makes no sense.

[pnwmom]

77. The judge issued the gag order in response to Boston Children's request for a gag order.

So now, Boston Children's should un-request it.

You say you read the Boston Globe articles. Did you read the part where the hospital's lawyer offered to do free legal work for the state in this case? This whole thing stinks to high heaven.

[kcr]

83. That may be, but it was still the judge who issued it.

Not Boston Children's. Gag orders aren't this rare thing, making this the Kidnapping Travesty Crime of the Century with Horrible Implications, Everyone Be Very Afraid of the Terrible Hospitals! and Our Big Government! They're quite common in high profile cases. It's not surprising at all the judge granted it given the parent's behavior and the press attention. Why on earth would they un-request it and help those they think are abusers?

[pnwmom]

85. Why should lifting the gag order help the parents if the hospital has nothing to hide?

If the parents are abusers, then that will all be revealed when the hospital is free to put its case to the public.

Your point of view doesn't make any sense. You shouldn't be afraid of the truth if the hospital is doing the right thing. Only if it has something to hide.

[kcr]

87. It isn't about having nothing to hide

In fact, one of the things that makes me lean more heavily in their direction is the fact that they requested a gag order. The parent's behavior in this mess does not make them look good at all. It makes me inclined to believe Boston Children's. The parent's behavior, complete with the over the top attention seeking histrionics, and now with bringing on board the pro-child abuser contingent - because make no mistake, that's what the right wing agenda is really all about, the right for parents to do whatever they want with their children - and really, I'm just having another one of those I can't believe I'm on a progressive board moments.

[pnwmom]

92. I can't believe that so-called progressives don't side with the ACLU on the 1st Amendment issue here

Yes, that is shocking.

And I don't have any idea how you can accuse the parents of "histrionics," when a year has been stolen from this girl's life and her physical condition has deteriorated under the non-care given her by Boston Children's.

[kcr]

98. The ACLU, who haven't even decided if they're going to get involved in this case?

Who's strongest wording was they had some concerns? And it does seem that their major beef is with the gag order. And that's fine. But that still doesn't mean Boston Children's kidnapped a child because they didn't agree with a diagnosis.

[pnwmom]

99. Where did I use the word kidnap? n/t

[kcr]

100. That is the parent's claim and those of those in the story speaking on their behalf

They're calling it kidnapping, which is ridiculous.

[pnwmom]

101. I completely understand how they feel that way. The doctors at Tufts are excellent doctors

and they have been providing good care for both Justina and her sister, who has the same disorder.

The M.Dieties from Harvard have stolen a year from this family's life.

[kcr]

102. The doctors at Tufts are excellent, but not at Boston Children's?

Tufts= excellent, infallible. Couldn't possible be wrong. Boston Children's = evil kidnappers. Couldn't possibly have the interests of children at heart. Only want to separate from parents.

[pnwmom]

104. Both hospitals have excellent doctors, and it should be up to the parents, not the state,

to decide which approach is right.

And I agree with the parents. The psychiatrists at Boston Children's clearly aren't qualified to care for
a child with a rare, familial, mitochondrial disorder.

They haven't even been trying! The whole time she's been under their care, she hasn't been treated for her mitochondrial disorder, or even allowed to see the Boston G.I. doc she was originally referred to see. She was put into a locked psychiatric ward and allowed to deteriorate physically.

[kcr]

105. You're right, it isn't up to the state to decide

It should be up to the parents. But it is up to the state to intervene in cases of child abuse

[pnwmom]

107. But the only "abuse" is that the state has decided that the girl's illness is psychosomatic,

and so getting her treatment for a mitochondrial disorder at Tufts is abusive.

The state shouldn't be taking the word of the psychiatrists at Boston over the word of the metabolic specialists at Tufts. The state is overreaching.

[kcr]

114. That's what the parents claim.

If the state were doing such a thing, it would indeed be overreach. But it isn't.

[pnwmom]

115. That is exactly what the state is doing. It has sided with one set of doctors over another. n/t

[kcr]

126. And the state just randomly decided to rip a child away from her parents because of this

Even though doctors disagree all the time? They just figured this was a good time to take a kid away. Simply because doctors disagreed? Do you honestly think this makes sense? To me, this only makes sense in right wing big Government is bad wacko conspiracy world. And here we are, right wing wackos getting involved. What a coincidence. I'm thinking it's a lot more likely the state is getting involved because of abuse.

[pnwmom]

129. The State decided to listen to the Harvard psychiatrists who had taken over her care,

instead of to the metabolic experts from Tufts.

It's obvious that's what happened.

[dionysus]

133. but you're talking as if it's certain the child was abused...

[kcr]

134. No, I'm not

I'm talking as if it's not certain the hospital kidnapped the child.

[Orrex]

73. If it turns out that the parents have abused this child

Will you recant, admitting your error with the same enthusiasm that you've devoted to advocating on behalf of the hospital?

[pnwmom]

78. Your question doesn't make a lot of sense. Want to try again? n/t

[Orrex]

88. If you are once again shown to be wrong, will you admit it?

[pnwmom]

91. Sure. Just as soon as you admit your question didn't make any sense

since I haven't been advocating on behalf of the hospital.

[Orrex]

103. My mistake; you're advocating for Tufts

See? I am able to admit error.

It would be nice to see the alt-med crowd make such an admission some time, instead of endlessly doubling down.

[pnwmom]

106. Are you suggesting that advocating for care by the metabolic specialist at Tufts

instead of a psychiatrist at Harvard is an alt-med position?

I am not an "alt-med" person. I have the usual retinue of M.D.'s when I need care. But I don't pretend that any doctors are infallible, any more than I am.

[Orrex]

117. I'm saying that I'd be interested to hear more than one side of the story

So far we have only the family's story, and they're being aggressively supported by a Right-wing propaganda machine.

That alone is enough to rattle my baloney detector.


Regarding alt-med, I've seen you on that side of the debate often enough to stand by my assessment.

[pnwmom]

125. Wrong. The hospital has been leaking its side of the story all along. That's why

we know that they consider the child to be psychosomatic.

What we haven't had, until the father recently got the courage to speak out in spite of the gag order, is the parents' side.

[Orrex]

128. We also have the judge's side.

[magical thyme]

112. the child has been out of her parent's care for over a year

and in the care of Children's psych ward.

If her parents had been abusing her, certainly there should have been some improvement over the course of more than a year while her exposure to them was limited to 1 supervised hour/week.

Instead, her condition has deteriorated since her treatment for mitochondrial disease replaced with treatment for "somatoform disorder," a psychiatric diagnosis formerly known as a subset of Freud's "hysteria" and based on an unproven hypothesis that has time and again proven a catchall for "we can't find anything physically wrong with you, so it's all in your head...until we discovered tb isn't psychosomatic, ulcers aren't psychosomatic, lyme disease isn't psychosomatic, and so on.

You do realize, don't you, that the abuse claim was based on her parents getting a 2nd opinion and getting her treated per her doctors orders, don't you. Not a fake doctor, either. A highly qualified specialist who coordinated her overall care.

[Orrex]

116. Well, since we have only the story of one interested party...

it seems prudent to wait before leaping to condemn the hospital.

[magical thyme]

122. we also have the story of Dr. Korson and the Globe was able to access medical records

and other documentation, as well as interviewing some of Justina's friends.

So we have more than just the parent's story.

I condemn the Children's for completely barring Dr. Korson and Justina's gastroenterologist from her care. I have written elsewhere here, diagnosis is normally based on a combination of all the information you can gather. That includes clinical signs and symptoms, patient's medical history, patient's family history, patient's personal history (such as travel, what they've eaten, etc. depending on presenting symptoms). This is not my personal opinion. This is what I learned in Med Lab Tech school, and what I see every day at work.

Even if they disagreed with the diagnosis, it was in Justina's and Children's best interest to contact her gastroenterologist, who is a Children's doctor, for detailed information on her clinical symptoms and his treatment of them, as well as Dr. Korston to confirm what tests were run, what the results were and how he arrived at his diagnosis, and why he was treating her in the specific way that he was. They also could have gained valuable information on how best to communicate with her parents to gain their trust.

Instead, they even shut their own gastroenterologist out of the discussion, as well as Dr. Korson, and simply took away her pain medication, her cardiac medication, and various other meds. I suspect it was interdepartmental politicking run amuck. In so doing, I think they've left themselves wide open to malpractice.

[Orrex]

127. It's interesting that the judge sees good reason to take the child from the parents

All else being equal, that alone seems rather significant to me.

[magical thyme]

131. not to me, based not only on what I've read about this case, but my personal experiences

The judge made his ruling based on what he was told by DHS and Children's, who both were strongly biased in favor of each other's version of events and against the parents. He chose to bar the Tuft's doctors from the proceedings, which suggests bias in favor of Children's and against Tufts. Children's chose to bar from the case their own gastroenterologist who knew Justina for 2 years and had insight into her condition.

I lived in Mass for 26 years I have a pretty good sense of how out of control some local agencies can get. It is a very insular place with a lot of cross-ties and deference to/infatuation with Harvard. In that time frame, I've seen people get railroaded by the system.

Furthermore, my sister is a lawyer focussed specifically on children and has been a judge (not in Mass, but in the general region). I have seen first hand how much power that position gave her, combined with ignorance of medicine, and in my sister with serious mental health issues of her own. For example, a former drug user herself, she has forced children who have never even been examined by a medical professional onto ritalin via threatening to take away parental custody. I have read about the cases she precided over and absolutely cringed in shame. She has told me she hates men and women equally. I personally know her as a manipulator and liar who will do or say pretty much anything for money. My point being that judges are not necessarily the rational, beneficient, mentally healthy beings they appear to be.

Third, working in health care I've seen how quickly the wagons get circled when mistakes made. I expect that would be true of DHS as well.

Fourth, as a citizen outside of the health care professional world, I've directly experienced how outsiders who "know too much" are seen as threats by the more insecure health care professionals.

[magical thyme]

26. Ginned up outrage? A top medical facility diagnosed her and treated her successfully for years

and then when she got the flu and her regular doctor was unavailable, another medical facility decided, within 4 days, that the initial diagnosis was wrong and had her parents charged with child neglect.

Her parents did *everything* that the 1st medical facility prescribed. That is not child neglect.

DHS made her a ward of the state, she has been denied the medical treatment that was successful and is now wheelchair bound, separated from her friends and family, and her health declining.

The implications of this situation are staggering.

[kcr]

75. The implications are not staggering

Hospitals and medical professionals witness evidence of child abuse and when they do they take steps to intervene. There is nothing outrageous about it and the implications of what happened in this case are not staggering. The right wing individuals and organizations choosing to insert themselves into this case when it started receiving publicity are indeed using it for their own agenda. They're ginning up the outrage to further that agenda. If media hadn't shown any interest in this case, if this were nothing more than any of the other countless abuse and neglect cases in this country, they wouldn't care one whit.

[magical thyme]

79. I read about this in the MSM yesterday. You are the one all concerned about rw websites, not me.

The sources I've quoted are MSM, mostly Boston Globe and Boston.com, along with local outlets.

I never said that hospital witnesses to possible child abuse should not report it.

What I said is they need to diagnose properly first. And to diagnose properly, you get a full medical history on the patient. And where there is a prior diagnosis and has been ongoing treatment, you do not disregard that without first fully reviewing it.

And secondly, accusing parents of "medical abuse" for following their doctors instructions is outrageous.

And the implications are staggering. Children's refused to allow Justina's parents to get a second opinion. The implications of that are staggering. The parents had 2 different diagnoses from 2 different sets of doctors. Personally, I would consider Dr. Korson, with a few decades of experience, as the more qualified than a 7 month resident. But they were denied their right to choose their qualified professional.

And yes, I consider the implications of that staggering.

At this point, given you obvious ignorance of what constitutes appropriate diagnostic criteria, I really have nothing further to add. Frankly I have better things to do with my time.

[kcr]

86. You should be concerned about them

It's very concerning that their agenda is taken seriously. They want to destroy our government. They don't care that the most vulnerable among us would hurt the most. Like the children who would no longer be protected from abuse. In fact, they feel that parents have every right to abuse children. Children are chattel. They've taken a child abuse case and presented it as Hospital Kidnaping OMGZ!1 Don't be fooled.

[pnwmom]

17. Ask the ACLU. Governmental overreach is as much a concern of liberals

as any right-wing group.

[LisaL]

66. Are you kidding?

A child is removed from her family. Family is not even able to talk because gag order is placed on them. There are so many issues here I don't even know where to start.

[GreenPartyVoter]

2. I would go crazy if that was happening to my family.

[Adam051188]

4. this reads like the beginning of a stephen king novel....

unbelievable. i feel like there has to be some piece of information missing, otherwise lawyers would be on this and would have been for some time. if it's true and this isn't misrepresented in some way it's so unbelievably outrageous. That doctor should lose his certification. and face criminal charges, in a just world.

[Sgent]

6. Agree

but its got to be more than one doctor -- a lot more.

I know pediatricians and social workers, and there is something missing from this story in a big way.

[magical thyme]

10. yes, there is more than one doctor. but it started with one doctor.

and what it really boiled down to is a bunch of shrinks at Children's versus a bunch of metabolic specialists at Tufts.

Both of which are rivals for funding from Harvard.

And while the MSM keeps claiming that Mitochoncrial disease is new and extremely rare, in fact it has been known for over a century, but only begun to be understood since advances in understanding of the mitochondria starting in about the 60s. And it is not as rare as they suggest:

Prevalence

Mitochondrial disorders are more common than was previously thought (Table 2). Based on the available data, a conservative estimate for the prevalence of all mitochondrial diseases is 11.5:100,000 (~1:8500). Arpa et al [2003] calculated prevalence in Spain to be 5.7:100,000 over age 14 years.
http://www.ncbi.nlm.nih.gov/books/NBK1224/

[LiberalAndProud]

14. There could well be an institutional mindset at work here.

That is not necessarily a good thing. There can be a mindset that every parent who comes in contact with CPS is thought guilty at the outset. It's a fine line our social agencies must walk, and I don't think there is one of them who gets it 100% correct 100% of the time. The tragedy is, when they get it wrong the repercussions are enormous.

[Sgent]

15. Anything is possible

but something just doesn't add up to me. I've worked with social workers from 4 different states, and even if they think there is neglect (medical), they really, really want to keep kids in the home (well beyond I usually think its advisable).

At a minimum, it would require the following to all find Tuft's physicians to be incompetent -- since if two courses of treatment are equal then they should go with the parents choice:

Children's ER Physician
Children's admitting psychiatrist
Social Worker
Social Worker's supervisor
Loco parentis attorney
CPS attorney
Youth court judge

Any one of the above professionals could have stopped this cold.

If the story is as clear cut as the parents claim, I just don't see how all of those professionals find Tuft's to be completely incompetent. Anything is possible, but something is very fishy.

[magical thyme]

27. the ER physician at Children's started this

and I don't believe any ER physician is qualified to diagnose a disease this complex. They don't have the time or the testing available.

I suspect that this is, in part, a case of covering up initial errors in judgement, rather than admitting a poor decision at the outset. Circling the wagons, so to speak.

And the fact is that the psychiatrists at Children's do potentially have another motive. This policy is shocking, but the link comes straight from Children's.

http://www.childrenshospital.org/~/media/Research%20and%20Innovation/Office%20of%20Clinical%20Investigation/cipp_071_001_19_Special_Procedures_for_Wards_of_the_State.ashx

Wards of the State
Policy

Children who are Wards of the state may be included in research that presents minimal risk 46.404 (50.51) or greater than minimal risk with a prospect of direct benefit 46.405 ( 50.52) of subpart D

Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit (46.406 (50.53) or 46.407 ( 50.54) only if the IRB determines and documents that such research is
Related to their status as wards; or
Conducted in schools, camps, hospital, institutions, or similar settings in which the majority of children involved as participants are not wards.

[enlightenment]

109. Good grief.

This hospital is allowed to use wards of the state as guinea pigs?

Is this common for research hospitals?

[magical thyme]

113. I don't know. But when I saw it I was absolutely sickened. nt

[enlightenment]

121. That is really distressing.

I'm going to have to dig around and find out how wide-spread a practice this might be - I suspect it is common.

[pnwmom]

19. Yeah, there's something missing. The family is trying to get the gag order lifted.

They've been prevented from speaking out.

[Sgent]

22. The gag order is there

for the protection of the child.

If the judge decides to lift the gag order, then he ought to do so for all parties involved -- the hospitals, doctors, CPS, etc.

[pnwmom]

23. There shouldn't be any question of IF. How can a judge not allow the girl's parents,

who were demonstrably not being neglectful since both she and her older sister had been under medical treatment at Tufts ( a top medical hospital), to speak out on her behalf?

What's happened to freedom of speech? If it means anything, how can it not include the right to speak out for your child's well-being?

The gag order in this case is for the protection of the system, not the child. I agree that the order should be lifted for all parties, including the parents -- but they're not objecting to that. Only the state is.

[magical thyme]

61. how is ordering a 15 year old to not talk about her own situation helping her?

And how is preventing the parents from advocating for their daughter protecting her?

The gag order is to protect DHS and Children's. They have close ties and there is an apparent conflict of interest going on there, and also some very odd circumstances surrounding her care.

The gag order was verbal and a year ago, so it is not even certain it still applies. And if it does, the father violated it out of desperation.

They have been accused of medical child abuse for seeking a 2nd opinion and following the prescriptions and instructions of a leading practitioner in his field. That is medical child abuse exactly how?

Their daughter has been taken from them, medical treatment deliberately withheld, contact with them extremely limited, and they have watched her health decline in the locked psych ward.

Just when they thought they'd get her back, she was taken to foster care where there will be no medical treatment.

Violating a gag order that may violate their freedom of speech and parental responsibilities to care for and advocate for their daughter seems to be the right thing to do, imo.

[magical thyme]

7. I've read numerous articles throughout the day at work

They all tell the same essential story.

She was diagnosed in 2011 at Tufts with mitochondrial disease. Her 25 year old sister also is diagnosed and in treatment. Justina has been in treatment since 2011 and done well on it. I saw pictures of her from shortly before getting the flu, ice skating (one of her sisters is a competitive skater). She got the flu; her regular doctor at Tufts was away so they suggested she see her GI specialists, who had moved to Childrens. There, they hadn't heard of the disease and didn't believe it existed, and within 4 days had taken custody of her and locked her up in the psych ward. She is now confined to a wheel chair with serious symptoms.

I've also spent much of the day reading up on mitochondrial disease. It's not as new as the papers are making it out to be. It was first recognized back in the late 1800s, but it wasn't until the last several decades, with deeper understanding of mitochondria and mitocnondrial dna, that it began to be understood.

[magical thyme]

11. lawyers have been on this...

they've been to court repeatedly. The court moved her from the hospital psych ward to another psych ward, and now to foster care at another state facility.

The court is considering taking her care away from the shrinks at Children's AND the metabolic specialists at Tufts, and shipping her off to a 3rd hospital.

It as absolutely insane. I read things like this and I am SO glad I left Massachusetts. Because I lived there for 26 years and yes, sadly, I can imagine this happening there.

[pnwmom]

21. What is missing is because of the judge's gag order on the parents and the hospitals.

The parents are seeking to have the gag order lifted. What does the state have to hide?

[Beaverhausen]

8. What the fuck?

This is nuts. How is this even happening?

[gerogie2]

12. If the teenager had the disease her parents say she has

it would be easily confirmed by looking at her cells in a microscope. Also the fact that she can not supposedly move would mean that she was suffering from spinal cord damage or MS not the disease stated by her parents. Her parents refuse to accept the possibility that their child is mentally ill. From the interview I saw of the child's Dad on Megyn Kelley's Fox Talk Show the father absolutely rejects the idea that his daughter could be mentally ill and acted ashamed that it could even be possible.
The parents look at their daughter as being "their" child and should be allow to do anything they want because they are the parents. They reject every other doctors attempt to assist them except the doctors that initially made the diagnosis based largely on the fact the child has an older sister that does have the disease that has been confirmed through medical biology.
Gag orders in cases involving children in state child welfare custody are routine and the parents broke it to attempt to force the CPS workers and her new doctors to accept "their" diagnoses of their daughter.
Most likely this child has been subject to abuse by these parents.

If these parents had taken this child to a doctor and the doctor said she did not have diabetes, but because of a misdiagnoses by another doctor they refused the new doctor's diagnoses and medical biology proved the child did not have diabetes. Then the parents kept insisting that the child did have diabetes would you accept such claims by them? This is the exact same situation. Medical biology proves that this girl does not have any disease.

[pnwmom]

18. You are wrong. The disease isn't "easily confirmed by looking at her cells in a microscope."

From the OP, which you don't appear to have read.

"The investigation can be relatively straightforward if a person has a recognizable phenotype and if it is possible to identify a known pathogenic mtDNA mutation. The difficulty arises when no mtDNA defect can be found or when the clinical abnormalities are complex and not easily matched to those of more common mitochondrial disorders."

[gerogie2]

95. Oh Yes the Doctors are wrong but the parents and you are right because of the Internet

[link:|

[pnwmom]

97. The doctor at Tufts -- the expert in metabolic disorders who was treating her --

along with her G.I. doctor, who has also been prevented from seeing her (even though he now works at Boston), are very likely right, because they had been successfully treating both this girl and her older sister before Boston got her into its clutches.

The psychiatrists at Boston are very likely wrong, which is why they're hiding behind the gag order they requested.

[magical thyme]

24. There are a number of illnesses and diseases that impair movement and cause neurological symptoms

Ataxia -- muscle weakness an inability to coordinate muscle movement -- is a common symptom of mitochondrial disease. Neurological problems in general are typical of that disease.

Inability to move is not automatically due to spinal cord damage or MS.

When you are diagnosing, you have to look at the whole body of the clinical signs and symptoms, along with the medical history, not just a single symptom in isolation. In the case of mitochondrial disease, when it is inherited (which Justina's may well be, since her older sister is also diagnosed with it) often they can identify the specific dna error involved. I guarantee you that they do not identify the incorrect dna sequence by "looking at the cells under a microscope."

One of the shocking things about this is that Children's came to their diagnosis in just 4 days, which is hardly time for a thorough physical evaluation. Of course, the other shocking thing is that they have steadfastly refused to work with Tufts. And somehow they have not yet even had her GI specialist, who had moved from Tufts to Children's, examine her.

[gerogie2]

93. Right! it's a conspiracy

The doctors and CPS are all in a conspiracy to take this child away because the parents and people on the Internet are really medical experts who think they know better then the medical doctors that have biologically examined the girls cells and testified in courts.
These parents and people like you that enable them are just as bad as holocaust deniers. Whatever medical documentation and biological examination is made people like yourself refuse to believe it when you have absolutely no evidence to back up your claims.

[link:|

[magical thyme]

96. Dr. Korson's years of exams, evaluations and successful treatment outweigh

the ED doctor with 7 months experience, and the young psychiatrist's 3 days of evaluation, imo.

It's really too bad the judge didn't take the 2 specialists who had treated her successfully into consideration.

But hey, whatever. DHS has ties to Children's and Children's has ties to Hahvid, and that's all that matters.

Seriously, the ED doctor and the shrink effed up and now they've circled the wagons and are covering their asses.

[magical thyme]

25. also, the reason "her parents say" she has this is because she was diagnosed 3 years ago with it

and has been in treatment for that time, until Children's kidnapped her.

[LisaL]

68. That's false.

This disease is not easy to diagnose.
And obviously not everone seem to even agree it exists.
But she apparently didn't get better after Children's hospital has been treating her.
So what in the world makes Children's think they are the one with the correct diagnosis?
This child is now reportedly in a wheel chair and can't even move her legs.

[gaspee]

16. I know this family

Mostly her sister Jessica through showing dogs and she's a very nice girl. Horrible what's happened to them.

[magical thyme]

36. having no children myself, I can only begin to imagine what they are suffering.

[My Good Babushka]

28. That's awful!

Where is the doctor that was treating her successfully? Why isn't he/she advocating for her?

[magical thyme]

31. from what I've read, the courts have pretty much forced Tufts out of it

The doctor has spoken out as much as he legally can, but HIPAA laws prevent him and Tufts from sharing any information. Any HIPAA violations would bring very stiff penalties.

In fact, I was surprised at how much he did say in the quote that I saw yesterday...

[My Good Babushka]

33. It just seems like

the medical records before and after would clear things up really quickly. Jeeeeezus! The poor family.

[magical thyme]

37. here is an interview with Dr. Mark Korsen, Justina's (real) doctor

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

Children’s and the state had ignored Korson’s requests to be included in a roundtable meeting to discuss Justina’s care. “I am growing increasingly uncomfortable with the process at Children’s Hospital to evaluate Justina,” he wrote to the girl’s court-appointed attorney....

Korson stressed that there were no empirical tests to support the hospital’s new psychiatric diagnosis for Justina of somatoform disorder, which describes a patient with symptoms that are real but for which no physical or biological explanation can be found. “It is a clinical hunch,” he wrote, “a best guess.”

Nonetheless, to advance this new diagnosis suggesting a powerful psychological component to Justina’s weakness, eating problems, and chronic constipation, “the team has demanded that Justina be removed from the home and severe restrictions imposed on contact with her parents. This represents the most severe and intrusive intervention a patient can undergo.”

“So now I am writing,” Korson told the lawyer, “because it feels like Justina’s treatment team is out to prove the diagnosis at all costs.”

[My Good Babushka]

38. I'm promoting the story where I can.

If the Children's Hospital was right, she still wouldn't be sick a year later!

[magical thyme]

39. here are some more links I just found, with much more backstory from the Globe

Apparently Children's is developing a reputation for kidnapping children -- 5 in the last 18 months where they conflicted with another doctor/hospital's diagnosis. There is conflict of interest all over the place, with representatives from DHS having ties to Childrens. And parents don't see the fine print when they take their children there -- apparently they cannot take them out without the hospital's consent.

In the meantime, Children's has continued to bar her gastoenterologist -- the sole reason her parents took her to Children's to begin with -- from seeing her!

And one of the Globe articles implies that the only reason she's being put into foster care now is not because her condition has "stabilized" but because the state is waking up to the cost of sort of caring for her in psychiatric lockdown.

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

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

ok, the 2nd link is by subscription only. So here is a right wing link that shows the whole article. It is an eye-opener.

[alp227]

62. i am able to read both links off your post. nt

[Warpy]

84. HIPAA can be overridden by court order in cases where medical information is required.

This is a doctors' turf war and the judge needs to grow a thicker skin and subpoena all the records.

[magical thyme]

89. the judge is probably in the thrall of Children's and their Harvard ties

I lived in Mass for 26 years. The thrall with Harvard runs deep, even though other Universities surpass them in many areas.

They also have such a great love of victims that I left there believing they intend to turn everybody into a victim of somebody before they are done.

[pnwmom]

49. That doctor IS strongly advocating for her, but he's being deliberately excluded from

decision-making about her care. Even the G.I. doctor he recommended she see -- who is now at Boston Children's - isn't being allowed to see her.

[kelliekat44]

30. OK, so where is the RW link blaming Obama for this? Did the Feds do the kidnapping? nt

[magical thyme]

32. cute, but nobody is blaming Obama or the Feds. This is about state overreach combined

with an inexperienced ER doctor, some psychiatrists egos and a judge blinded by Children's name.

As for the "rightwing" links:

http://www.boston.com/news/local/massachusetts/2014/02/24/parents-justina-pelletier-upset-after-learning-teenager-will-now-sent-dcf-foster-care-advocates-say/r6TKrvmVGf2lxmHgQKZC6O/story.html

http://boston.cbslocal.com/2014/02/24/teen-in-medical-dispute-sent-to-foster-care/

http://www.huffingtonpost.com/cristy-balcells/first-do-no-harm-how-we-f_b_4843997.html

http://abcnews.go.com/Health/sick-connecticut-teen-justina-pelletier-foster-care/story?id=22668251

http://www.usatoday.com/story/news/nation/2014/02/24/pelletier-hospital-custody-battle/5790863/

[zazen]

34. sickening--this happens with parents of kids with ehlers-danlos syndrome

There's a major movement in my EDS group to help parents, a few of whose kids have been taken away because the bruising, dislocation, poor scarring, dysautonomia, fatigue, pain, and other issues around EDS (which is only now being recognized as a serious, debilitating disorder of connective tissue throughout the body). Doesn't matter how much documentation they have.

And yes, the social workers and shrinks get in there with their ideological biases and refuse to see anything else. I think when you can't see most of your supposed "disorders" under a microscope you're even more locked into defending their reality. Ego, ego, ego. Meanwhile, these kids have been seriously harmed by somatoform and Munchausen diagnoses or just outright accusations that their parents (who are desperately taking their kids to specialist after specialist) are abusing them. (Right--abusive parents show off their kids' bruises).

Grrr.....

[magical thyme]

35. for comparison, some background on Somatoform Disorder

since I provided background info on Mitochondrial Disorder.

"Today, psychology recognizes two different types of disorders that were historically known as hysteria: dissociative disorders and somatoform disorders.

Somatoform disorder is a class of psychological disorder that involves physical symptoms that do not have a physical cause. These symptoms usually mimic real diseases or injuries. Such disorders include conversion disorder, body dysmporphic disorder and somatization disorder."
http://psychology.about.com/od/hindex/f/hysteria.htm

"DSM-III introduced somatoform disorders as a speculative diagnostic category for somatic symptoms “not explained by a general medical condition.”
Although retained and enlarged in DSMIV, somatoform disorders have been the subject of continuing criticism by both professionals and patients....

There is ambiguity in the stated exclusion criteria. The diagnosis of somatoform disorder requires the
exclusion of general medical conditions. However, there is lack of clarity about which medical diagnoses should be regarded as exclusionary: for example, do medical “functional syndromes,” such as irritable bowel syndrome, count as exclusions? One consequence of this lack of clarity
is that patients may be classified as having both an axis III disorder (for example, irritable bowel syndrome) and an axis I somatoform disorder (such as undifferentiated somatoform disorder or pain disorder) for the very same somatic symptoms. This seems to be ridiculous....

Are Somatoform Disorders Consistent With Evidence About Etiology?
The somatoform criteria and their accompanying text are based largely on the etiological concept of “somatization,” a hypothetical process whereby mental illness manifests
as somatic symptoms. Modern evidence suggests that this conceptualization is simplistic; it favors instead a multifactorial etiology with interacting psychological, social, and biological factors (38) (Figure 1). It is especially important to note that there is increasing evidence that biological factors are relevant (6).... (note: stunning. they have found evidence that biological factors may actually be relevant to clinical symptoms! )
http://psychiatryonline.org/data/Journals/AJP/4005/847.pdf

Diagnosing Somatoform:

'Exams and Tests

A thorough medical evaluation, including laboratory work and radiologic scans (MRI, CT, ultrasound, x-ray), is done to determine possible causes of the pain.

Somatoform pain disorder is diagnosed when these tests do not reveal a clear source of the pain."
http://www.nlm.nih.gov/medlineplus/ency/article/000922.htm

Because we all know if you can't see it on an MRI, CT, ultrasound or x-ray, it doesn't exist. right.

Diagnosis by exclusion is not diagnosis. Because a doctor, or team of doctors, cannot see the physical cause of an illness does not mean you are mentally ill. Yet the very definition of somatoform disorder is a group of symptoms which a limited number of tests do not explain.


"Complex, poorly understood diseases are often considered to predominately have a psychological basis until proven otherwise. Tuberculosis, hypertension, and stomach ulcers were once considered to be psychosomatic."
http://www.mentalhealthandillness.com/Articles/AllInYourHead.htm

[hedgehog]

42. I am reminded of the long fight needed to get chronic fatigue disorder

recognized as something real. People with fibromylagia face the same disbelief.

Going from doctor to doctor sounds like the parents are the problem, until you consider the possibility that their previous doctors gave no clear diagnosis and/or treatment plans. Many people with autoimmune disorders go through the same thing until they encounter a doctor who puts all the pieces together and/or they develop quantifiable symptoms.

[pnwmom]

50. When I was growing up, they still thought asthma was psychosomatic.

And I knew that, by the time I was a teen. So I didn't bother telling anyone I couldn't breathe at night.

[hedgehog]

135. and they thought "refrigerator mothers" caused autism!

[pnwmom]

136. Oh yes -- I remember that! n/t

[magical thyme]

51. Former fed prosecutor and BOD member of MSPCC calls for shut down of Bader 5

at Boston Children's.

http://www.madinamerica.com/wp-content/uploads/2014/01/Pollack-PDF.pdf

[pnwmom]

52. Thanks, magical, for all your work on this.

This family deserves our support and the First Amendment issues should be a concern to everyone.

It's pathetic that some people jumped to the defense of the over-reaching hospital merely because some right-wingers are trying to assist the family.

[magical thyme]

58. I needed to. It is important for 1st amendment reasons, but also overreach and conflict of interest

There is no legitimate reason for Children's to have excluded Justina's prior physicians from consultation. Simply by involving their own gastroenterologist, they could at least have confirimed what her parents told them about her diagnosis and treatment plan, understood the basis for it, and then worked with the on a collaborative basis.

To dismiss out of hand the diagnosis and treatment plan of Dr. Korson, Chief of Metabolism Service and Director of the Metabolic Disorders Clinic at Tufts strikes me as 1. arrogant and 2. potential malpractice. I honestly believe much of their action has been designed to cover their sorry asses, now that Justina's health has declined.

They could have confirmed patient history, test results, etc. and then, even if they disagreed with him, had some basis for dialog with the parents.

I know for a fact that the hospital where I work gets calls from physicians when we have shipped critical patients out to specialty hospitals, looking for our test results. For example, if they suspect a patient is septic, they won't wait for their own blood culture results; since we got the blood 1st we will have any results first and days later they call to see if we have any results yet.

And we are in a tourist area so frequently have patients from out of state and out of country. When a patient comes into our ED without a history and we get critical results, we will attempt to track down their primary physician no matter where they are.

You simply don't make assumptions about a patient's medical history (or about their parents) , especially when those directly involved are available.

And then the DHS ties with Children's. And that outrageous gag order, placed not only on the supposed adults, but on the 15 year old victim.

[KamaAina]

74. Excellent post

slight quibble: the phrase "wheelchair-bound" is obsolete. She "uses a wheelchair".

[pnwmom]

80. Except in her case, the term might actually apply.

The hospital, in a way, is binding her to the wheelchair by deliberately denying her the treatment that was helping her muscles to stay stronger and to keep her out of a wheelchair.

She isn't actually paralyzed, per se; she is just profoundly weak, and she's being denied the treatment that would help her.

[magical thyme]

90. well, then I'll amend to say she is unable to walk due to ataxia and possible

neurological issues since mictochondrial disease is progressive, even with treatment, and does present with neurological symptoms along with the host of other issues. So she uses a wheelchair to get around.

[pnwmom]

94. Right. It's not ordinary paralysis. It's ataxia and profound muscle weakness as a direct

result of her mitochondrial disorder.

[Blue_Tires]

110. Dumb question:

Why isn't Tufts fighting harder about this? Isn't their reputation on the line? Children's Hospital is essentially accusing them publicly of malpractice by screwing up the original diagnosis, and failing to recognize or take action over a defenseless child in the hands of abusive parents...

Do I have that right?

[magical thyme]

118. Dr. Korson from Tufts has spoken out and did try very hard to be included

both in her care while she was at Children's and in discussions of her care since its been in court.

First Children's and now the judge has shut them out.

Beyond that, they are probably just keeping a safe distance. There is not much they can do without raising the ire of the judge. And they may feel if they get involved in a tug of war, it will hurt them and Justina more down the road.

Children's, in the meantime, is whining about how the parent's claims and violations of the gag order are hurting *their* reputation. Karma kickback, if you ask me.

Eventually, assuming she survives, I expect Massachusetts will have to return her to her family. They are beginning to discover the costs of maintaining a child seriously ill with a rare, genetic disorder is far more costly than treating one with "somatoform disorder."

I suspect the judge is just looking for a way to do it without admitting the state fucked up and opening the door to massive lawsuits against themselves and their BFF, Children's.

[Blue_Tires]

120. Instead of just the doctor speaking,

I'd have thought Tufts administration would have gotten their own legal counsel involved...

If Tufts is in the right and the law is on their side, then fuck some "ire of the judge..."

[magical thyme]

124. they aren't in a position to do anything legally.

Children's grabbed custody from the parents, not from Tufts.

The law is health care providers can't discuss patient information without violating HIPAA regulations and facing very steep fines as punishment.

The have no legal jurisdiction. Once the state took custody of Justina, the state claimed the right to choose her medical provider. DHS has close ties with Children's; I think it is the DHS person who makes the decisions who actually used to work for Children's.

Anything Tufts says or does at this point would only make things worse. Once Justina is returned to her parents, assuming she is, then they can take her to the medical provider of their choice, assuming the provider is willing and able to take her back.

[Blue_Tires]

130. Doesn't Children's realize they're setting themselves and the Commonwealth

up for a lawsuit payout in the tens of millions with this stunt??

I just can't figure out why they would do something so outrageous (I'm going under the assumption that the parents are telling the full truth and are in the right)

[magical thyme]

132. they either totally believe they are in the right, or have so much power they can get away with

anything, or a year later with Justina's deterioration, they realize they may have screwed up and are backing away with wagons fully circled.

It seems to me if Justina's condition had actually improved, there would be no need for a gag order on her, and the severe restrictions on who she is allowed to talk to would have been eased at least somewhat, instead of being tightened.

Regardless of her actual condition, they have declared her "stabilized" enough to leave their care, which is why the judge has placed her in a DHS foster care situation without medical facilities in her "transition" phase.

What it looks like to me is a typical corporate eff up where they gloss over the fail, declare victory and move on, leaving everybody else to pick up the pieces. They never publicly admit any mistakes, whoever made the mistakes is protected for the sake of the whole, and they never, ever, ever will admit to any other diagnosis than their own.

[opiate69]

119. Is it just me?

All day long, when I came into GD and saw this thread I read it as "Mom sick of Connecticut teen..."

[magical thyme]

123. and then there is this: Children's policy on Wards of the state

http://www.childrenshospital.org/~/media/Research%20and%20Innovation/Office%20of%20Clinical%20Investigation/cipp_071_001_19_Special_Procedures_for_Wards_of_the_State.ashx

Wards of the State
Policy

Children who are Wards of the state may be included in research that presents minimal risk 46.404 (50.51) or greater than minimal risk with a prospect of direct benefit 46.405 ( 50.52) of subpart D

Children who are Wards of the state may be included in research that presents greater than minimal risk with no prospect of direct benefit...

more at link

When Justina's parents "hysterically" claimed that Children's was using her as a guinea pig, I believe this policy is what frightened them.