"Suffering the Slings and Arrows of Outrageous Fortune"

As promised in my previous post, How a child can be medically kidnapped, in the next couple posts I am going to talk about what I believe is one part of the answer to the skeptical (reasonably so) question of ‘Why would Boston Children’s Hospital want to kidnap Justina Pelletier or any other child?’

There is no easy answer to that question, it is a complex combination of power, profit, self-interest, arrogance and stunning conflicts of interest. The media, when it finally started covering Justina’s case, timidly implied that this was a clash of medical egos. While it masquerades as that on the surface, there is so much more involved.

However, if there is a simple answer it is this, as it always has been and likely always will be: Follow the money.

I believe that there is an unholy alliance between Boston Children’s Hospital, Massachusetts Department of Children and Families, and the courts who adjudicate the ‘parent-ectomy’ cases brought to them. Enabling this racket, is the field of psychiatry.

The Psychiatry Connection

People have long been suspicious of Psychiatry, with good reason. No doubt, there is good that is done by this profession – mental illness is real and many people have been helped by psychiatrists. However, many people have also been hurt irreparably and they cannot and should not be ignored.

When the latest revision of the DSM (Diagnostic and Statistical Manual, the Psychiatric ‘Bible’) was being  published in 2013, rare disease patients everywhere started getting nervous. It was clear that psychiatry was inserting itself further into real medicine and that its increased power would be at the expense of ill patients.

Allen Frances, chair of the DSM-IV task force, said of the new definition of somatoform disorders: “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.” He felt that the new somatic symptom disorder (this label replaced Somatoform Disorder, which is what Justina was diagnosed with) carried with it a risk of mislabeling a sizable proportion of the population as mentally ill. I think Justina’s case proves his concern was well placed.

He isn’t the only voice criticizing the DSM V or the field of psychiatry in general. This excellent video from the Coalition Against Pediatric Pain of a speech given by Dr. Barnum, clearly explains the concern even within the psychiatric community of these dangerous diagnoses, particularly when applied to the chronically ill. Dr. Barnum points out that these diagnoses are questionable at best and not at all helpful, even if correct.

Diagnoses like somatoform disorder and conversion disorders are being questioned by patients and skeptical doctors alike, yet continue to be grossly misused. If, these disorders even exist in the way presented in the DSM V, which is a great big IF, they, by nature, require a great deal of deliberation and time to rule out potential real medical conditions which need to be treated.

Instead, we see ER doctors or primary care physicians who are woefully uneducated about rare diseases, when they have no explanation for the symptoms they are seeing, simply go for the ‘easy’, lazy, unethical path of ‘hey, it is all in your head’. After a few short minutes of deliberation, little, if any, examination of the patient’s records or perhaps even the patient herself, and zero conversation with involved specialists, they declare somatoform disorder, wholly disregarding that they are not qualified to make this diagnosis that should take months to make. Once this label is given, it is nearly impossible for the patient to have her symptoms taken seriously.

About a year ago, a UK woman, died of lung cancer after being told for months that the cause of her symptoms was anxiety and depression. After a year of wrong diagnoses, the cancer had spread and, by the time it was discovered, it was terminal. Assuming a patient’s symptoms are psychosomatic can be deadly but doctors do it everyday.

In Justina’s case, we see the type of abuse of this questionable diagnosis leads to. When doctors use Somatoform Disorder as a weapon to gain profit and personal benefit, it is a gross violation of their sacred oath to ‘first, do no harm’.

The Worst Kind of Hypocrisy

All the while these medical professionals at Boston Children’s are pointing at and criticizing physicians like Dr. Korson (Justina’s mito doc) for making clinical diagnoses in the absence of medical proof and accusing the parents of abuse, they, too, are merely clinically diagnosing mental disorders without any solid proof whatsoever, for highly questionable reasons. There is a reason the social sciences (psychiatry, psychology and sociology) are considered ‘soft sciences’ – there are no diagnostic tests or procedures to support a psychiatric diagnosis; it is simply an opinion based on an conclusion made by the clinician.

The field of psychiatry, in the form of the DSM, gives itself more and more power with every revision and there is no check or balance to question motive or enforce integrity. It is unbelievable that a profession based on clinical hunches could override real science, real medicine and categorically deny the existence of a recognized medical condition. It is unbelievable that zealous psychologists could ignore serious medical symptoms and put patients through terrible suffering in ‘treating’ their ‘mental illness’. But it happens every day.

Mental Abuse Masquerading as Treatment

Out in the real world, what they have done to Justina and kids like her is called torture. Abuse. Brain washing. Gaslighting. Simply put, if anyone else did to another human being what they have done to Justina, that person would be considered a heinous criminal. They, however, did it with impunity for months to Justina and will continue to do it to other kids if they are not stopped.

If you are not familiar with the term gaslighting, it comes from an old movie called Gas Light, in which the husband systematically convinces his wife that she is crazy, by denying her very real experiences. She notices the (gas) lights in their home dimming – unbeknownst to her, he is secretively using the lights in the attic, causing them to dim downstairs – but when she mentions it, he tells her she is imagining it.  He manipulates her environment and tells her it is ‘all in her head’, trying to convince her  and others that she is insane.

Today, the term is used to describe efforts to manipulate someone’s sense of reality. In the Wikipedia entry on gaslighting, the following description is given: “a form of mental abuse in which false information is presented with the intent of making a victim doubt his or her own memory, perception and sanity.”  Sound familiar?

It is NOT all in your head!

Interestingly, the same Wiki article points out that some of Sigmund Freud’s professional conduct can be characterized as gaslighting. Freud, of course, is known for his contributions to psychiatry. His legacy lives on.

Whatever term you want to use to describe the treatment Justina experienced on Bader 5, the in-patient psych ward that Justina spent 10 months or so on, it is unacceptable.  The decline Justina has suffered at the hands of these people may well be irreparable and every person who had a hand in it, should be held accountable.

It is abhorrent that medical professionals can attempt to convince a child she is not truly ill when she is. For a person who has GI motility issues, sitting on the toilet for hours being told ‘you just need to go’ is not going to help. For a person whose muscles are weak and who cannot walk, being ordered to ‘get up and walk’ is not going to enable her to walk. For a person with tachycardia, being told ‘you need to exercise’ is not going to prevent them from fainting when they do. I cannot think of anything worse for a chronically ill, medically complex child being taken from her parents and told what she is experiencing is not real. Honestly, my brain shuts down when I think about it – it hits way to close to home and it sickens me.

As Katie Higgins, a Bader 5 whistle-blower, rightly pointed out in a scathing letter to the head of DCF, “Any caregiver who failed to respond to their child’s complaints of pain; who chose instead to isolate and imprison their child to “force her to accept that she was not in need of medical attention”, would be accused of emotional abuse and medical neglect of their child.” Yet, that is precisely what the Boston Children’s Hospital doctors in charge of Justina’s case have been doing for over a year. I call that abuse – they call it treatment.

Pharmaceutical Bias

We don’t actually know what medications Justina has been given while in DCF custody, in lieu of her previously prescribed medications that were stopped upon the diagnosis of Somatoform (or somatic symptom disorder as it is called in the DSM V), but we can reasonably assume that she has been given one or more medications to ‘treat’ her ‘mental illness’. While anti-depressants are necessary in some cases, we know that they are very, very serious medications with serious effects. These medications should be given with thoughtful deliberation and extreme care, particularly to a child, but are given out like candy by people who benefit from their use.

At the beginning of this post I said “Follow the money” and here is where that trail begins. There is a financial motivation here: pharmaceuticals make a lot of people a lot of money. There is grant money available for research for the investigation of conditions like Somatoform and for the treatments, with drugs, thereof. Not to mention a lucrative relationship between far too many psychiatrists and pharmaceutical companies.

An article on a mental health watchdog site, states “A 2006 study by Dr. Cosgrove and Sheldon Krimsky, a Tufts University professor, determined how 56% of the170 psychiatrists who worked on the 1994 edition of the DSM (IV) had at least one monetary relationship with a drug maker. The study also found that every one of the “experts” on DSM-IV panels overseeing so-called “mood disorders” (which includes depression) and “schizophrenia/psychotic disorders” had undisclosed financial ties to drug companies.  At the time, international sales of drugs to “treat” these conditions were more than $34 billion.”  This, then, is where we end up when we follow the money. This, then, is one answer to the question “Why would Boston Children’s Hospital want to kidnap Justina Pelletier?”

Whenever there is a financial incentive to give drugs in the name of research or treatment, there is an automatic bias against NOT giving drugs. And there is an automatic bias against acknowledging a condition that cuts into your profit, i.e. mito. The bigger the incentive the bigger the bias. The diagnosis of Somatoform, and I would go so far as to say the invention of Somatoform Disorder, is a money maker for the Psych department at Boston Children’s in the form of long in-patient hospital stays, research grants and drugs. It also benefits  professional reputations of some of the people involved in this sad episode, although with this all going 1public, that, at least, may no longer be true. There are people involved in Justina’s case who have vested interests in promoting and defending the idea of Somatoform Disorder and denying Mitochondrial disease – and the DSM V gives them the tools to succeed.

As the Veil is Lifted

Few people can go up against the powers-that-be in a situation like the Pelletiers and other families have experienced. Katie Higgins, who I mentioned earlier, is an RN who worked on the now infamous Bader 5 psych unit for several years and resigned after blowing the whistle on inappropriate conduct on the unit. She got involved in Justina’s case and began advocating for the family.  Reflecting on her own experiences on Bader 5 in relation to Justina’s case, she says in a Boston Globe article “What I saw was a strong motivation by these very young clinicians to be in total control of a treatment of a child.  Once they’re in DCF custody, they no longer have the difficulty of getting the parents on board.” She also points out, “It looks to me like they’re making the cases fit their agenda.” 

I don't know who this guy is, but this quote strikes me as very applicable to the people who have incarcerated Justina.

This quote strikes me as very applicable to the people who have incarcerated Justina.

Higgins has also stated that psychiatrists behave as “divine authority”, destroying those who do not submit to their control – not that that is a secret. More interestingly, she acknowledges that “the financial gain for psychiatry and these agencies via their alliance with pharmaceutical companies is nothing less than obscene.” Her voice is important because it speaks to us from experience and helps us understand what is going on behind the scenes.

Likewise, when Lou Pelletier broke the gag order and started speaking out about the chain of events that ended in his daughter spending 13 months in DCF custody and started naming names, the veil was lifted on the secrecy and shadows that have allowed this kind of abuse to continue unabated.

Make no mistake, it is abuse and it is rampant. In many ways, it is a perfect storm – rare conditions with clinical diagnosis that can be ignored by a zealous doctor with an agenda, lots of money to be made in both in-patient care and meds and research, a hospital with an atmosphere encouraging ‘parent-ectomies’ and the legal system – in the form of Dept. of Children and Families and rubber stamp judges – to tie it up in a nice, neat bow.

The role of psychiatry is one important piece of the puzzle in the Justina Pelletier case and the other similar cases at Boston Children’s.  To fully understand, however, we need to look further at the role of Boston Children’s Hospital and DCF, who are both absolutely complicit in this case and others like it. My next post will address the role of BCH in these cases.

Go to Part 2

Some good resources to get the facts in this case:

Boston Globe Article Part 1 and Part 2

Huffington Post Article

An article from The Blaze

To help #freejustina:

Justice for Justina

A Miracle for Justina Facebook page

Free Justina Pelletier From Boston Children’s Hospital Facebook group

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Comments on: "The Missing Pieces of the Puzzle Part 1 #FreeJustina" (4)

  1. I stumbed across your website while looking for information on EDS. (I was diagnosed just last week with EDS III). This post was very interesting. I’ve been following Justina’s case as well and can’t believe everything these doctors have put her and her family through.. It’s so sad. I read somewhere that the hospital has a policy that children that are wards of the state may be included in research that provides minimal risk, or a greater than minimal risk if they think the outcome will help the patient. It just sounds so..creepy considering they would put someone like Justina in a position like that! It makes a lot of sense though after reading your post.

    I’ll be following your blog. Looking forward to your next post. 🙂

    • Thanks! It is always great to hear that my ramblings are interesting to anyone but myself! 🙂

      I normally just talk about our lives and what our journey is, but I have dedicated myself to blogging about Justina at least until she is home – because her journey could so easily be ours. It is heartbreaking and I just feel compelled to speak out.

      As far as Boston Children’s, you are correct about their policy. I will be posting tomorrow (hopefully) about that and the deep responsibility Children’s carries in the awful mess. It is a pattern and it has to stop. I think they messed with the wrong family this time and the lawsuits will be staggering. If we are really fortunate, Lou Pelletier will not rest until there is a Justina’s Law that will prevent this ever happening again.

      Anyway, thanks for reading and commenting!

      Beth

  2. Lis Mellon said:

    Excellent writing, Beth. Your article is informative and rings with truth! You should link this on BCH Facebook page!

    • Thanks so much! I wonder how long it would stay up if I did share it there. Hmmm, the preview of the link would have the title and that might get it vanished pretty quickly. Might be worth a try!

      Thanks for commenting!

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