A Discussion of Justina Pelletier and Boston Children’s Hospital

Philip Hickey, PhD

March 6, 2014

Justina Pelletier is the 15-year-old girl who is at the center of a dispute between her parents and the Psychiatry Department at Boston Children’s Hospital.

Justina, who lived with her parents in Connecticut, had been diagnosed with mitochondrial disease, a rare and debilitating illness, and had been receiving treatment for this from Mark Korson, MD, Chief of Metabolism Services at Tufts Medical Center in Boston.

In February of last year, Justina’s parents took her to Boston Children’s Hospital with flu-like symptoms.  Dr. Korson had recommended an admission to Boston Children’s so that Justina could be seen by Alex Flores, MD, a gastrointestinal specialist who had recently transferred from Tufts to BCH.

But instead, Justina’s care was taken over by the psychiatry department.  She was “diagnosed” with somatoform disorder (“it’s-all-in-your-head”), and BCH reported the parents to the state of Massachusetts for medical child abuse.  The complaint was taken by the Department of Children and Families (DCF), and within 24 hours Judge Joseph Johnston awarded custody of Justina to the Massachusetts DCF, and ruled that she had to stay at BCH.

The parents continued to press for Justina’s release from BCH, but were hampered in these efforts by a gag order that Judge Johnston had imposed.

In January of 2014, having spent almost a year in psychiatric care at BCH (nine months of which were in a locked ward), Justina was transferred to the Wayside Youth and Family Support Network in Framingham, Massachusetts.  She was still in the custody of the DCF, and still under the care of psychiatrists at Boston’s Children’s hospital.  In February of 2014, Justina’s father, Lou Pelletier, alarmed at the deterioration in his daughter’s medical condition, decided to break the gag order, and go public, despite the risk of imprisonment.  There was a huge outcry, and Massachusetts child protective services stated on February 28, 2014, that they are actively working to return Justina to Connecticut and the care of Tufts.

“The timetable for the shift of the teenager to her home state has not been set, and it is unclear just how much the Massachusetts Department of Children and Families is retreating from the girl’s case. But Loftus [DCF spokesperson] said child-protection officials from both states, the juvenile judge handling the case, and lawyers for the parents are actively working on identifying a new placement in Connecticut. He would not say what places are under consideration, but in cases like this, the child could be returned back to her home, or placed in a foster home or a residential treatment facility.

If she were to live at her family’s home in West Hartford, Conn., child-protection officials in that state, who would likely oversee the case, would likely demand that the girl receive services at home or that she attend a day program.”

Because of the gag order, which was in place since November 17, 2013, and the official secrecy that normally attends these matters, it’s difficult to establish all the facts.  But the gist of the conflict seems to be that the psychiatrists at BCH disputed the diagnosis of mitochondrial disease.  (In fact, there are indications that they may even have disputed whether such a disease even exists – an extraordinary accusation coming from psychiatry!)  They also, apparently, formed the belief that the parents were dysfunctionally invested in the notion that Justina was gravely ill, and were subjecting her to needless medicines and treatments.  During the eleven months she was at BCH, the psychiatrists placed very strict and stringent limits on how much contact the teenager could have with her family.  There’s a copy of a January 8, 2014, letter here from Kathleen Higgins, RN, a former BCH employee, to the DCF Commission.  The letter provides a great deal of insightful background.

The parents protested vigorously that Justina had been taken off the medicines for mitochondrial disease, and they stated that her physical condition had deteriorated markedly during her stay at BCH.

Discussion

Somatoform disorder is a DSM-IV term.  It refers to a group of psychiatric “diagnoses,” the common feature of which is “…the presence of physical symptoms that suggest a general medical condition…and are not fully explained by a general medical condition…”  (DSM-IV, p 445).  In addition, “…there is no diagnosable general medical condition to fully account for the physical symptoms.” (ibid)  Like all psychiatric “diagnoses,” it has no explanatory value and is nothing more than a destructive and unreliably applied label.

So essentially what’s happened here is that Dr. Korson, a pediatrician who is board-certified in Clinical Biochemical Genetics, an associate professor at Tufts University School of Medicine, and a specialist in mitochondrial diseases, has been treating Justina for about three years for mitochondrial disease.  (According to the site MitoAction, “Dr. Korson is universally recognized as an expert in clinical practice for mitochondrial patients.”)  He sends her to BCH for a gastrointestinal consult with Dr. Flores.  And within 24 hours, the psychiatry department hijacks her, rejects the mitochondrial disease diagnosis, substitutes a “diagnosis” of its own, files a medical abuse report with DCF, and supports a DCF petition to have Justina made a ward of the state.  Prior to all this, Justina had no mental health history of any kind.

As soon as they realized what was happening, the parents sought to remove Justina from BCH – but when the teenager became a ward of the state, that door was closed, and the judge ordered that Justina be kept at BCH.

Justina’s case has focused a great deal of attention on these matters generally.  One of the points that has emerged fairly clearly is that BCH’s procedure for pursuing a commitment of this kind is a well-oiled machine.  The BCH physicians and staff on the one hand, and the DCF staff on the other, work closely to prepare their cases, and the courts are usually cooperative.  Psychiatric evidence is afforded a high measure of credibility and deference, and, as in this case, the child is routinely ordered to remain at BCH.

The problem with all of this is that BCH stands to make a great deal of money on every child that is court-ordered to remain in their care.  The conflict of interest is glaring.  It’s like a judge routinely sending convicted criminals to a private prison that he himself happens to own.  The difference is that any judge who engaged in activity of this sort would be looking at criminal charges and disbarment.  But in psychiatry, this sort of thing is common.

The matter is particularly compelling in that reports are emerging that BCH tends to pursue these kinds of court orders in cases where the family has “good insurance.”  Justina was kept at BCH for eleven months.  I have seen no reports as to the size of the bill, but I’m sure it wasn’t trivial.

BCH and Harvard

David R. DeMaso, MD, is the head of psychiatry at BCH.  He is also a professor at Harvard, and is a member of Harvard’s Psychiatry Department Executive Committee. He is evidently highly regarded at the University, and has his own Harvard Catalyst page.  There’s a tab on this page labeled “Similar People,” and one of the people listed as “similar” to Dr. DeMaso is our old friend Joseph Biederman, MD, the eminent inventor of pediatric bipolar disorder.  This is the bogus diagnosis that legitimized the prescribing of neuroleptic drugs to children as young as two years old for temper tantrums.  Even some psychiatrists spoke out against this spurious and destructive activity, but the practice continues.  The fact that Dr. DeMaso would allow Dr. Biederman’s name to remain on his Similar People tab seems noteworthy.  There is also a “connections”  page on Harvard Catalyst, listing three publications co-authored by Dr. DeMaso and Dr. Biederman.

Dr. Biederman is on record as promising Johnson & Johnson a positive result for their drug Risperdal if they would fund his study.  Why would any reputable physician allow someone like that to remain on his “Similar People” tab?

I did a PubMed search to see if there were other links between BCH psychiatrists and Joseph Biederman.  In addition to the DeMaso publications, I discovered papers co-authored by Joseph Biederman and at least two other members of the BCH Department of Psychiatry “Leadership Team:”  Joseph Gonzalez-Heydrich, MD (7 articles, as recent at 2012); and Deborah Waber, MD (3 articles, as recent at 2012).

Public Outcry

None of Justina’s story would have come to light had there not been an extensive and vigorous public outcry.  This in turn would not have happened if Justina’s father, Lou, had not breached the court’s gag order.  The fact that our courts can effectively prohibit a parent, on pain of imprisonment, from speaking out against his child’s enforced psychiatric treatment ought to be a huge concern.  Our legislative and legal systems have been hoodwinked by psychiatry for too long.  The right to free speech is our most fundamental political freedom.  The fact that a state court would so cavalierly suspend such a right to promote the agenda of BCH’s psychiatry department suggests a measure of partiality on the part of the court in an area where the child’s welfare ought to be the paramount consideration.  There had never been the slightest indication that Justina’s parents had been abusing or neglecting her.  In fact, they brought her to BCH on the advice of the child’s physician to get help for the flu-like symptoms.  By any conventional standards, they were being dutiful and attendant.  The gag order was clearly an attempt to prevent them from drawing adverse publicity to BCH’s psychiatry department.  Courts are supposed to be impartial.  Why would the court in this case have assumed that the psychiatry department’s motives were benign, that its “diagnoses” were valid and accurate, and that its practices were judicious and efficacious?  Why did the court not recognize the financial conflict of interest when it ordered that Justina be kept involuntarily in the locked psychiatric ward at BCH?

BCH’s psychiatrists kept Justina in a locked psychiatric ward for nine months.  Apparently it never occurred to them that they might have made an error, or that they had acted too hastily. Psychiatry seldom engages in anything even remotely akin to critical self-scrutiny  .  They have resisted the parents’ protests at every step of the way, and have been backed throughout by the court.  It is only because of the public outrage that the facts are emerging.  Massachusetts’ Department of Public Health has called for a full investigation of the matter.  One can readily imagine the kinds of pressures that will be brought to bear to whitewash the entire affair.  Let us all, individually and collectively, do what we can to ensure that this does not happen.

* * * * *

This blog first appeared on Philip Hickey’s website, Behaviorism and Mental Health

Philip Hickey, PhD

Philip Hickey is a retired psychologist.  He has worked in prisons (UK and US), addiction units, community mental health centers, nursing homes, and in private practice.  He and his wife, Nancy, live in Colorado, and have four grown children.

A Discussion of Justina Pelletier and Boston Children’s Hospital Comments RSS

34 thoughts on “A Discussion of Justina Pelletier and Boston Children’s Hospital

  1. A few years ago I read about Rebecca Riley, the 4 year old who died due to a psych med balancing act promoted by Dr. Joseph Biederman. The Pelletier case reminded me of the arrogance of Dr. Joe in pushing a psych dx on children and the inevitable chemicals that follow.
    It does appear to be a “well oiled machine” as Dr. Hickey states. A 2006 BCH article, that credits Dr. DeMaso, gives insight on how to deal with the skeptical parents and hijack a customer.
    If Dr. Flores would have been brought in at admission, what would have happened? I would guess 1 to 2 weeks max medical inpatent getting Justina tuned up compared to the year long Bader 5 intensive experience. What if BCH would have just made the phone call to Korson? They chose not to. BCH did this because they had done it before. The parents were put in a box. Sign our treatment plan or else. Justina probably had research value.
    DCF and a duped judge certainly have responsibility, but it all started with the BCH psych dept.
    This is a big deal and needs to be exposed, again. Maybe Frontline could do another series on the authority of psychiatry related to parental custody. Can JCAHO get involved? Thanks.

    http://apps.childrenshospital.org/x-views/august06/somatoform_disorders.html

    • I agree, “it’s a well oiled machine.” Zoriolus, do you happen to have a link to Dr. DeMaso’s 2006 article that gives insight into how to “high jack a customer?”

      I’m just curious because this well insured “customer” was also “high jacked” in 2006 by a Dr. V R Kuchipudi.

      http://chicagoist.com/2013/04/16/chicago_hospital_owner_doctors_arre.php

      And when I went to pick up a copy of the court documents regarding my medically unnecessary detainment, for profit, I did indeed learn it was in fact illegal also. I was held in a county in which I did not reside, which the court documents quite clearly stated was illegal.

      And when I questioned a couple of the DuPage county state’s attorneys about this illegal detainment, they himmed and hawed. It was quite clear to me this type thing was happening way too often.

      I unfortunately have no doubt, based on comments from lawyers, when I was fighting to prevent Well Fargo from, without proper paperwork, forcing this recently widowed woman from selling her family home at an enormous loss in 2012. And in regards to the medically unnecessary forced treatment in 2006, that the US courts have definately been bought out, with the intent of stealing money from the well insured middle class people. And the government agencies are doing nothing to stop this whatsoever. They only function to cover the crimes up.

      Truly, I fear this country’s been “high jacked.”

      • The link is at the bottom of my post and Dr. DeMaso is a source of information.
        The title is “Fact or Fiction: Somatoform Disorders Explored” from a BCH publication called Pediatric Views. This little article to the pediatric staff explains how to deal with parents who understand that their child has a medical problem and not a psychiatric one. There seems to be a carefully considered process to convert a medical diagnosis to a psychiatric one. Trusting parents are ambushed.
        I would hope that everyone wouldn’t need a medical attorney with them when they access healthcare? It’s hard not to be cynical. I read your link concerning the hospital kickbacks and I hope that you can recover from this.

        • Zoriolus,

          I’m getting a “oops,” can’t find that page, when looking for your link. Can you copy and paste it here?

          And, thank you, I’m working on recovering from appalling psychiatric abuse, but am terribly grateful for your concern and well-wishes. Empathy, and love I believe, lead to healing. Stigmatization, drugging, and disrespect, lead to big profits for psychiatry.

          • Stigmatization is the effect of medical model, not the cause. Otherwise there would be logic to NAMI’s “anti-stigma” campaign/.
            Then you could say with a straight face, “Treat the mentally ill with respect,” a ludicrous oxymoron.
            SF

    • zoriolus,

      Thanks for coming in. Psychiatrists have been getting away with this kind of thing for more than a hundred years. They are intoxicated by their own rhetoric, and refuse to even address the spuriousness of their concepts or the destruction that they leave in their wake. Hopefully, the publicity that Justina’s case has received will have a slowing effect on their activities and will encourage other victims to speak out.

      • Has it been more than 100 years … of UNETHICAL male chavanist pig witch hunts? (Don’t get me wrong, I know, not all men are pigs.). My pastors were kind enough to read my chronologically typed up medical records and research, and confessed I dealt with “the dirty little secret of the two original educated professions.”

        I am dealing with a cover up of a “bad fix” on a broken bone, and the cover up of the abuse of my child by an ex-pastor or his best friend, and my ex-pastor’s denial of the granddaughter of the head of the investment committee of the board of pensions for the ELCA religion a baptism; a pastoral sin meant to upset me so I’d go to a therapist. And marked indelibly throughout eternity at the exact moment the second plane hit the second World Trade Center building on 9.11.2001. God had lots of reasons to be angry with “corporate” America on 9.11.2001.

        But I agree, Dr. Hickey, it’s time for psychiatry to overcome it’s “delusions of grandeur,” especially now that we all live in the Information Age. And absolutely, stop leaving “destruction” in their wake, especially to children; I’ve never in my life personally, met such insane, disrespectful, and delusional hypocrites, as all the psychiatrists I met.

        Thank God, the oral surgeons are intelligent enough to comprehend that “concerns of child abuse aren’t cured with antipsychotics.” Can you imagine no psychiatrist, nor hospital I dealt with, is aware of this?

        Well, I shouldn’t say that, my doctors from the past eight years have both agreed I was originally misdiagnosis, and were embarrassed by having a patient point out the impropriety of this “dirty little secret.” Thank God not all doctors are disgusting. But what a shame the patients must research medicine themselves, rather than getting honest and ethical treatment by a medical community that defrauds people by hypocritically promising to “first and foremost do no harm.”

        Mainstream medicine should not continue to advocate for the psychiatric industry, merely because they have the ability to defame and discredit patients to cover up easily recognized iatrogenesis for unethical and incompetent doctors. The medical wall of silence, including the for-profit only psychiatric quacks, will destroy the credibility of all of mainstream medicine. Thank you for speaking out against their practices, Dr. Hickey.

  2. Yes, our legal system grants legitimacy to psychiatry that it does not deserve. When I read stories like this I want to see psychiatry slapped so hard that only the reasonable psychiatrists can stand back up again. This story illustrates how wrong the field has gone and how overbearing and meddlesome it has become.

    I want to see all the people responsible for the kidnapped, medical neglect, and chemical torture of this girl on the witness stand.

  3. I am as *sick and tired* of pharma as anyone on this site.

    But I’m waiting for the day to see a public outrage about the role *government* has played in all this mess.

    Look closely at this case, for instance.

    From “child protective” services to (kangaroo) mental health courts…
    The *government* is a partner in all this crime.

    I’m not willing to blame all of this on corporate America.
    Corporations cannot take children away from parents; force people to take toxic drugs.
    Only the *government* can use that type of force.

    Fascism is a partnership of corporations and government.
    And socialism can lead to totalitarianism.
    It certainly has a long history of doing so.
    Bashing corporations, without looking at how to take power away from bureaucrats will get us *nowhere*!

    All things political:

    http://www.madinamerica.com/forums/

    Duane

  4. Thanks for this articulate analysis, Philip.

    ” (In fact, there are indications that they may even have disputed whether such a disease even exists – an extraordinary accusation coming from psychiatry!) They also, apparently, formed the belief that the parents were dysfunctionally invested in the notion that Justina was gravely ill, and were subjecting her to needless medicines and treatments.”

    What rich irony! Yes, this is indeed “an extraordinary accusation coming from psychiatry!” It seems unbelievable they would have the chutzpah to dispute the presence or even existence of mitochondrial disease and accuse the parents of subjecting Justina to “needless medicines and treatments”. Psychiatry’s entire existence is predicated on dubious and frequently changing diagnoses and hit-or-miss treatments with little proven efficacy and tons of deleterious effects!

    We have all these laws in various states named after individuals, with other euphemistic names such as “Assisted Outpatient Treatment”, which make it easier to force psychiatric medications and psychiatric incarceration on people.

    Perhaps out of this outrageous fiasco will come a “Jutina’s Law” that will finally give some appropriate due process and oversight, with teeth, to stand against the Gulag Psychipelago into which so many of our fellow citizens are swallowed up.

  5. If BCH was right where is the evidence that Justine having spent a eleven months inpatient at BCH is now a healthy, well adjusted teenager? We can only hope that she will recover from the trauma she has experienced.

  6. This is not the first child to be kidnapped by BCH’s psychiatry dept. There are two other children that this was done to. There was a link here on MIA to an interview with a woman lawyer who represented one family. She said that she’s not surprised that this happened to Justina.

  7. Does anyone know for sure if Justina has been medicated w/ psychiatric drugs over the last 13 months?

    When I hear that she will be released back to the care of her parents, I worry most that she will be cold-turkeyed from any psychiatric drugs that she may have been on all this time, which could have severe and devastating consequences if her family isn’t educated on a slow and gradual reduction program.

    • I share your concern, elocin. When i heard a recent report that her parents observed her stomach was bloated and there were red streaks on her stomach and some other part of her body–her arms, i think–it reminded me of my own adult daughter’s physical reaction to the heavy drug cocktail they put her on in one of her lengthy and torturous involuntary hospitalizations. Talk about weight gain…she practically blew up before our eyes! Came out of the hospital so sedated she was usually in bed 16 hours of the day. Her outpatient psychiatrist was afraid to make any changes in this toxic, brain-numbing mix until purple streaks on her arms and body appeared and she began to have bad liver readings.

      Fortunately, she was gradually and successfully tapered on the med that seemed to be causing the worst of the weight, skin and liver problems (Depakote). I doubt this would have been successful if done too quickly.

      (Unfortunately, she was placed back on this drug during a subsequent hospitalization, where they initially almost killed her and then put her through a horrific brainstorm of drug changes that more than reversed all the progress she had made in the previous year. That’s another story I’ve detailed elsewhere.)

    • Good question. Lou stated that BCH discontinued the vitamin cocktail, Lyrica, and metoprolol, but I have read nothing about what psych drugs were started. Justina’s chart (which probably weighs more than she does ) and supporting records hold the answers. I suppose that denying and delaying the family custody keeps those records hidden from the parents. I am curious to know what other DSM disorders they tagged her with and the medication management. Somatoform wouldn’t be the only opportunity in which to medicate and observe.

  8. I hope the family has a really good attorney who can explore all angles and help them put together a cohesive strategy – a war on all fronts. As I learned in my son’s case, a state can have a decent set of laws but when judges ignore them, and ignore due process of law, you must look to other options that don’t involve continuing to be victimized by the same judge. This is very alarming since the case has gotten so much publicity, but has it yet reached a critical mass in media besides in the movement to make psychiatry accountable? I think the word has to be spread further and wider than amongst us, like to human rights bloggers, like to oath keeper organizations, etc. Those who want to help the family need to attack the sealing of court proceedings or records, at a minimum. Hopefully the family or their attorney will get some ideas from the pleadings that were filed in my son’s case, which is now in the Ohio Supreme Court:

    http://www.supremecourt.ohio.gov/Clerk/ecms/resultsbycasenumber.asp?type=3&year=2014&number=0268&myPage=searchbycasenumber.asp

    There is contact information for the attorney who will pass along our contact information for any who need confidential help.

  9. A powerful piece, terse, eloquent and astute. . I have to agree with Someone Else even though I disagree with his/her contention that corporations should not be bashed. But the latter is for another time.
    What needs to be focused upon is the collusion of the State with the psychiatrists and the corporations. These hearings assume that psychiatrists and hospitals may have biases. That is the ASSUMPTION that led to the institution of civil hearings in the first place. Their existence is due to victories won by civil liberty lobby inspired by Szasz in the 1960s, a victory that has been completely vitiated due to judicial deference to hospital psychiatrists (and the absence of non-hospital shrinks, unless the parents are canny and rich).
    Everywhere we turn today we see that the State is an instrument of corporate power. Regulation, for example, is meaningless, as the regulatory agencies are captured by the corporations–usually through the revolving door. In this case it seem there is no financial incentive–but there might be. (We’ve read about the judges who got kickbacks for sending kids who had committed misdemeanors to private prisons.) Here in NYC before a person is committed to a psych ward she is entitled to a hearing. 20 years ago, Tina Minkowitz Esq did a study of the Brooklyn civil courts and found that the judges almost never refused to go along with the hospital psychiatrists. So the hearings are show trials, witch trials– rituals whose REAL function is to legitimize the subjugation of the vulnerable to psychiatric power.
    And consider also the role of Child Welfare—this also is corrupt as I demonstrated in articles I wrote in the 1990s.It kidnaps children. It augments the growth of CWA, it does not protect children, except incidentally sometimes.
    The State is an instrument today for the imposition of corporate and elite power. It is not a tool– although it once was to some degree– for the protection of individual rights or the common good. It serves the 1%, not the demos.
    Seth Farber, Ph.D.
    http://www.sethHfarber.com

  10. Thank you Dr. Hickey for an excellent job on this story. I am a reporter at the uswatchdogs.net and we both read with interest, and used your story as a source. Our story follows the money on this case, as well as how one-party politics is behind whats going on in Boston. While the party doesn’t matter, absolute power does corrupt absolutely. We think it works very well with your story and hope you take a look (http://uswatchdogs.net/2014/03/29/judge-joseph-f-johnston-cowardly-lion-massachusetts/). Please let us know if you have and concerns, considerations, comments or additional information.

    Again, thank you for your excellent work.

    [email protected]

  11. The Troubling Medical History of Justina Pelletier

    I am not at all satisfied with the diagnostic efforts made to this point in the case of Justina Pelletier.
    It seems to me that in Justina’s case we have one medical waste-basket category (mitochondrial disease) followed up with another, this time of a psychiatric waste-basket category nature (somatoform disorder). The latter, according to its definition, just informs us that the former (mitochondrial disease) did not fully explain the general medical condition, yet slams the case into a psychiatric realm:
    Somatoform disorder is a DSM-IV term. It refers to a group of psychiatric “diagnoses,” the common feature of which is “…the presence of physical symptoms that suggest a general medical condition…and are not fully explained by a general medical condition…” (DSM-IV, p 445).

    But both diagnoses get us, or the patient, nowhere.

    Justina had originally been diagnosed as having “mitochondrial disease” at Tufts, as had one of her sisters. But a Boston Hospital neurologist working on her case noted that two of the criteria often used in arriving at a mitochondrial disease diagnosis were not present in Justina’s case. “Metabolic workup was unremarkable,” he wrote, adding, “She has not had a muscle biopsy.” The physician who diagnosed mitochondrial disease mentioned that although he had given Justina a “working” diagnosis of “mito”, he acknowledged he couldn’t be 100 percent sure, but that Justina had chronic, serious symptoms that left her drained and were suggestive of mito, particularly her pattern of losing stamina as the day and week wore on, which her teachers had noted. But many, many other conditions can cause this, some of them infectious.

    And Justina had considerably more symptoms than just being ‘drained’. Let’s look at them:

    Originally brought to Tufts, in February of last year, Justina’s parents took her to Boston Children’s Hospital with flu-like symptoms. Her symptoms — included weakness, headaches and a history of excruciating abdominal pain. Actually, Justina had been sick on and off for several years. In fact her systemic problems might have started long before, perhaps even perinatally. She had been born prematurely and had struggled with learning difficulties in public school for years.
    In her adolescent history, there is mention that after experiencing fatigue, her parents related that she then couldn’t eat. Then she had trouble walking, when just six weeks earlier, the girl had drawn applause at a holiday ice-skating show near her home in West Hartford. Justina’s speech became slurred, and she was having so much trouble swallowing that her mother was worried her daughter might choke to death. Her admission to Boston Children’s was essentially so that Justina could be seen by Alex Flores, MD, a gastrointestinal specialist who had recently transferred from Tufts to BCH. This was undoubtedly for her abdominal pain, but her symptomatology speaks for systemic involvement ― including abdominal pain.

    This, disease, with central nervous symptoms in abundance, seems far from any of the diagnoses to this point rendered. Worse yet, it is entirely possible that it is within the realm of an infectious disease, and I don’t mean influenza or any other self-limiting viral involvement. Furthermore, to call such a disease largely psychiatric simply because you cannot diagnosis it seems like medical lunacy.
    Regarding such an infectious disease. Was a spinal tap done? What exactly was it tested for? Where PCR’s of the urine, blood sputum done for both bacteria and AFB? Why do I doubt these were done? From personal experience at medical centers, I guess.

    • Primarydoc, You are the first person I’ve read on MIA to suspect the first diagnosis is not adequate. Most of us are not MDs, but there are a few psychiatrists here (critical of psychiatric system). I am a psychologist, and like AA below am aware that any person who has a “mental illness” label is treated as if everything she says or does is a symptom of a mental illness.

      But why do you think none of the psychiatrists here noticed mitochondrial disease was inadequate? Do you have any theories? Is it that esoteric? And second, could you make a guess about the kind of illness that might be overlooked? You do say “it is entirely possible that it is within the realm of an infectious disease, and I don’t mean influenza or any other self-limiting viral involvement. ” This sounds ominous. What exactly did you have in mind? In the days of flesh eating bacteria when new sorts of diseases keep cropping up due to negligent practices (eg over prescription of antibiotics) in the past
      people are vulnerable to non-resistant strains of old illnesses? But why have no specialists stepped forward with theories? Are the doctors secretly willing to yield to psychiatry because they do not want to admit their own limitations? Or failures in the past?

      Why are the kind of tests you mention routinely NOT done when they are indicated?

      Your suggestions raise many more questions. I wonder if you have any more theories that might throw light on this? As people here are aware a psychiatric diagnosis is always a crime–it means the patient will be subject to further crimes of commission (e.g.,toxic psychiatric drugs) and omission–no treatment. However we forget that modern medicine is guilty of its own distinctive brand of negligence–it too is dominated by the drug industry, and thus it is tragically limited by the failure of the latter to fund any kind of research that is not to its own advantage. What should be done?
      Seth Farber, Ph.D.
      http://www.sethHfarber.com

      • Dear SethFarber:

        Thank you for your reply. I feel that you honestly seek to get to the bottom of this.
        I might be the first person who you’ve read on MIA to “suspect that the first diagnosis [“mito”] is not adequate”, but let me assure you that there are a host of physicians who could not agree with me more.
        First of all, I am a primary care internist ―a diagnostician who places much value on radiology, laboratory tests, appropriate stains, cultures and assays as well as sending out to reference laboratories for tests beyond the scope of a particular institution, which ever that institution might be. Second of all, although I am not an infectious disease specialist, a good diagnostician starts his work-up by exhaustively ruling out infectious disease ― no specialist or specialists needed with the exception of needing to pull tissue specimens and biopsies for further diagnostics. Other important factors are travel to foreign countries and direct exposure to communicable disease.
        Furthermore, many of the cases brought to a psychiatrist’s attention are indeed medical and not psychiatric in origin. When a human being is chronically sick, for example, he or she are prone to being depressed, paranoid ideation, etc. In the many years that I have practiced medicine, I cannot remember calling in a psychiatrist more than on 6 or 7 occasions, and then in cases of extreme anxiety/neurosis/psychosis to try to calm down the patient so that I could proceed with my work-up, or perhaps cases of severe drug addiction, where such a consult is almost mandatory.
        And as a physician, who also did some residency in Family Practice as well, I remember distinctly that two or three of our mentors hammered home ― time and time again ― with regard to making not only a medical diagnosis, but the all-important possible differential diagnoses surrounding a case ― not to look for “Zebras”. He meant by this of course esoteric, rare diseases, or soups of the day, still to be better defined. And in so far as heredity is concerned, please be aware that there is literature on Medline to the effect that heredity markers can also occur in tissue as a result of infection.
        I won’t address your question as to “why none of the psychiatrists here noticed” that this girl’s initial diagnosis was inadequate. Do psychiatrists have much experience in running a differential on systemic illness? Perhaps in their residency.
        You ask, “Do you have any theories?” Answer…..yes I do and I have listed the main one above……….a chronic systemic infection that could hit the GI tract, the CNS, the cranial nerves and cause weakness, muscular or otherwise. But not being privy to the patient’s chart, I will go no further.
        I cannot understand why a chronic infectious disease sounds so “ominous” to you. According to WHO, at least a third of the world is walking around with one. “Flesh eating bacteria?” Nothing chronic about those. “Over-prescription of antibiotic?” That is a debate which I chose not to engage. You can always under-prescribe and watch the patient go down.
        “Psychiatric diagnosis, a crime”? Not at all. There is a great and lasting need for psychiatrists. But a psychiatric diagnosis should only be sought when you are certain that every test, assay, culture, pcr, biopsy and radiologic measure has been exhausted. In the Pelletier case, I feel, for example, that there was some valuable GI material that should have been detected on an MRI or CT with contrast for possibly biopsy, pathology, and tissue stains and cultures.
        “Toxic psychiatric drugs”. Many of the drugs used in psychiatry at first had medical uses and worked very well that way. Look up the history of the MAO inhibitors and the tricyclic’s for further information.

        “However we forget that modern medicine is guilty of its own distinctive brand of negligence–it too is dominated by the drug industry, and thus it is tragically limited by the failure of the latter to fund any kind of research that is not to its own advantage.”
        Don’t you think that I am fully aware of that?

        So to end, I will specifically refer to what I consider, you’re most important question, which was “Why are the kind of tests you mention routinely NOT done when they are indicated?”
        First of all, for a physician to order a test, he must consider it important enough as a differential diagnosis to do so. If it doesn’t come to his mind, he will not order it. Secondly, he must be aware that the disease could indeed cause the patients signs and symptomatology. Not all are. And some do not keep an open-mind and have preconceived light-bulbs going off as to just what the patient has.
        I will give you one brief example of several charts I came upon where a spinal tap was ordered (as certainly would be a good idea in Justina Pelletier’s case). However, just doing the tap is not as important as what is done with the specimens diagnostically after the tap is done. Yes, you will get a cell count, proteins and sugar, but this should only be where things begin. What about stains cultures and assays? Bacterial stains and cultures ordered? Not enough. Since you put your patient through enough discomfort why not go the extra yard in a mufti-organ (GI, CNS, etc) systemic disease and order AFB stains and cultures on not only her spinal fluid, but all of her body fluids, including her blood? ― followed up by PCR’s to reference laboratories outside the hospital for more advanced diagnostics. Answer: It is simply not being done often enough.

  12. Primarycaredoc,

    Great post.

    You may or may not be aware but once you get a psych diagnosis as a patient as many of can attest and as what happened with Justina, everything is seen through the lens of that label and doctors stop looking further. That is why I don’t share my psych med history (not longer taking meds) with any new physician even when I am asked questions about situations that occurred during that time. I have sadly learned through experience not to do that.

    No matter what Justina has, she is not getting any medical care. Many of us greatly fear she will die but sadly the state of MA, doesn’t seem to give a damm.

    • Dear AA:

      Thank you for your kind words. And I agree with your handling of your medicine history.

      Somehow I feel though that there are many that are touched by this case in MA, and certainly their voices will be eventually heard. After all, what happened with Justina could happen to anyone with a son or daughter.
      You do not have to be a doctor to judge the severe deterioration of the girl’s pictures before and after her disease. And even a casual comparison would assure anyone that indeed this is a physical and not a mental disease.

  13. For the record.

    “MITOCHONDRIAL DISEASE” : The history of mitochondrial disease goes back to the early 1960s, when Biochemist Lars Ernster and Endocrinologist Rolf Luft described a patient who ate voraciously yet stayed thin, sweating profusely even in winter. Her thyroid was not involved and she was “tired”.
    Ernster and Luft implicated a defect in mitochondrial energy metabolism, with little effort to define the disease behind this. And in a 30-page, dull, unimpressive paper, which on the basis of volume alone, should have pulled in a Nobel ― showed that this patient’s muscle mitochondria could make only a fraction of the energy they should normally produce; the unconverted fuel diverted into heat production. The exact cause of “Luft disease”, as Luft called it, of course ― perhaps one of the rarest condition known ― remains unknown, but this never dissuaded Dr. Luft, who spent 40 years (from the 1950s to the 1990s), making certain that the discoveries he made weren’t wasted and at the same time came under the umbrella of “mitochondrial medicine” ― a term which he had coined himself. He had a list of human diseases that he wanted to run through, all with imbalances in the oxidative process, and thought he might start with Diabetes.

    But the truth is that mitochondrial dysfunction (disease) can occur and is characteristic of aging and essentially ANY CHRONIC DISEASE.

    Mitochondrial disease is technically just the loss of the efficiency in the electron transport chain with a characteristic decrease in the high-energy molecules, adenosine triphosphate, also known as ATP, among them.

    Again, this is characteristic of aging and essentially any chronic disease. And that unfortunately includes diseases like tuberculosis, a multisystem disease which has infected at least 1 out of every 3 individuals on the globe, can affect the gastrointestinal tract, can affect the central nervous system, can cause fatigue, can affect swallowing, can cause sweating, can cause weight loss and degrees of anorexia (from which it got its original name, consumption) etc, etc, etc.

    And I find it only that more ironic that this particular disease, tuberculosis, was raging in Stockholm in the early 1960′s exactly when Ernst and Luft decided to rename it mitochondrial dysfunction or disease and get it published in a journal.

  14. I just need to mention, I was given the somatization/hypochondria diagnosis for four years while medical doctors and psychiatrists bumbled around and completely overlooked the medication I was taking that caused it. I was in tolerance withdrawal from taking a low dose of Klonopin for the previous 4 years. (8 years total).

    Why on earth are the opinions of these “professionals” so well respected? Thank you, Phillip, and others, for doing the work you do. It’s depressing, but it means the world to those of us who have lived with this all alone.

  15. Mitochrondrial disorder is a particularly tricky diagnosis even if the patient is an articulate adult who can track and describe his symptoms clearly. My aunt, officially diagnosed at Tuscon’s MD clinic, took decades to get her answers. I likely have the condition, something I’ve learned after my own decades long doctor-go-round and wondering myself–product of psych indoctrination–about any emotional component.

    The vulnerable Muscular Dystrophy Association “leads the search for treatments.” The mito disorder is not some little fringe concoction on a murky corner of the internet. http://mda.org/disease/mitochondrial-myopathies

    Psych’s hucksterism is one thing when selling a worried well suburbanite the miraculous curing powers of bi-lateral hand-tapping. But when these vainglorious autocrats wield their authority and deluded clairvoyance to rip a family and cage a teenager, intervention of the interveners is long overdue.

  16. Once again, the truth is that “mitochondrial dysfunction” (disease) can occur and is characteristic of aging and essentially ANY CHRONIC DISEASE.
    And anyone, or any organization, who tries to assure anyone of the accuracy of “Mito” had better first go back and carefully review Ernster and Luft’s original paper and then take a long look at the long list of that disease’s differential diagnoses, each of which must be thoroughly ruled out (and are usually not) before that diagnosis can be maintained. In addition, you might go over the history of the “disease” as written above.

    Who or which organizatioin subscribes to a disease’s label is not the benchmark of the validity or a tribute to the accuracy of that diagnostic label . And in my eyes “Mitochondrial disease” is as debatable as the current Prion theory of disease – both of which were heavily promoted and just as heavily disputed.

Leave a Reply