Diagnosis Dispute Traps Teenager in Boston Children’s Hospital

Kermit Cole
22
84

Justina Pelletier, a 15-year-old Connecticut teenager who had been diagnosed with mitochondrial disease, remains trapped in Boston Children’s Hospital 9 months after a team of doctors changed her diagnosis to “somatoform disorder”, and caused her to be removed from her parents’ custody. The parents, accused of “overmedicalizing” their child, were removed from the hospital by security. “I am dismayed . . . This represents the most severe and intrusive intervention a patient can undergo,” said a former member of the girl’s medical team, “for a clinical hunch.”

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Of further interest:
A Miracle for Justina” – Facebook Page

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Kermit Cole
Kermit Cole, MFT, founding editor of Mad in America, works in Santa Fe, New Mexico as a couples and family therapist. Inspired by Open Dialogue, he works as part of a team and consults with couples and families that have members identified as patients. His work in residential treatment — largely with severely traumatized and/or "psychotic" clients — led to an appreciation of the power and beauty of systemic philosophy and practice, as the alternative to the prevailing focus on individual pathology. A former film-maker, he has undergraduate and master's degrees in psychology from Harvard University, as well as an MFT degree from the Council for Relationships in Philadelphia. He is a doctoral candidate with the Taos Institute and the Free University of Brussels. You can reach him at [email protected]

22 COMMENTS

  1. Hold on a minute.

    “The Pelletiers say Boston Children’s accused them of “overmedicalizing” their daughter.”

    You’re kidding, right?

    ARE THE PARENTS DOCTORS? Are THEY the ones performing “complex surgeries” and prescribing her? NOPE. Who is doing that? WHO is performing complex surgeries? WHO is prescribing the girl? DOCTORS are doing that.

    Dr. Karaa, YOU’RE WRONG. “because the medical team thought that the parents were causing this to their child,” says Dr. Karaa.”

    YOU’RE WRONG. The parents are not the ones performing “complex surgeries”. The parents are not the ones prescribing the girl. DOCTORS are doing that to her. NOT the parents. You WILLING doctors are doing that to the girl.

    “Before entering Boston Children’s Hospital, Justina was on several medications and had undergone complex surgeries.”

    What’s going on here? There’s something the matter, right?

    It’s either mitochondrial disease or somatoform disorder — do YOU doctors KNOW which it really is?

    There is ALREADY a supposed misdiagnosis!

    And the poor family is OBVIOUSLY trying to get right, good care and “treatment” for their daughter. Why? BECAUSE OBVIOUSLY, SOMETHING IS THE MATTER.

    ““They were actually being accused of being too active in pursuing healthcare matters for their child,” says Hokanson.”

    UNBELIEVABLE.

    Meanwhile, what really stands out — the only one that matters, the daughter — what is she doing?

    “Nine months after she was admitted to Boston Children’s, Justina is still in the hospital, sneaking messages to her parents, hidden inside origami artwork.”

    SHE’S SNEAKING MESSAGES TO HER PARENTS.

    I hope the family sues and wins a fortune and put you out of business. RIGHTFULLY SO.

    If THIS is true, “is a mental disorder characterized by symptoms that suggest physical illness or injury – symptoms that cannot be explained fully by a general medical condition or by the direct effect of a substance, and are not attributable to another mental disorder (e.g., panic disorder).[1] In people who have a somatoform disorder, medical test results are either normal or do not explain the person’s symptoms, and history and physical examination do not indicate the presence of a medical condition that could cause them. Patients with this disorder often become worried about their health because doctors are unable to find a cause for their symptoms.”

    THEN WHAT THE HELL ARE YOU DOING PERFORMING COMPLEX SURGERIES ON THE GIRL?

    GETTING PAID? BILLING, AND GETTING PAID?

    WHAT THE HELL ARE YOU DOING PERFORMING COMPLEX SURGERIES ON HER?

    AND WHY IS SHE SNEAKING MESSAGES TO HER FAMILY?

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

    “Somatoform disorder is difficult to diagnose and treat since doing so requires psychiatrists to work with neurologists on patients with this disorder.[6]”

    She isn’t a machine. WORK ON HER? SHE ISN’T A MACHINE.

    Are you SURE. Are you SO sure that this is a REAL disorder? Is it REALLY?

    WOW.

    Any EXPERTS out there in the world?

    I feel so bad for that girl. SO, SO bad for her.

    • “Since our initial investigation, we’ve learned that the judge has issued a gag order in this case.”

      To Hell with your gag order. You should be ordering that NOBODY PUTS A FINGER ON HER

      AND TURN HER OVER TO HER PARENTS. IMMEDIATELY.

      THAT is what you should be ordering.

      I’m SO angry. What an outrage!!

  2. Just wanted to chime in on this one. It is very tempting to see this one as another egregious abuse of power but, as we’ve all seen before, partial information is a isn’t a very good platform to stand on.

    For about three years I worked as a psych tech on the child psych inpatient unit at Childrens Hospital Boston. During that time we had a child on the unit who had also been removed from his parents custody due to similar concerns. The short of it was that the parents had convinced a boat load of doctors that there was something medically wrong with their son which caused him to be unable to walk. The elaborate charade of the parents and its emotional impact on the boy had gone on so long that he, in fact, had “unlearned” how to walk.

    Anyway, just wanted to balance the argument. By the way, I also used to work for DCF in MA and despite its shortcomings exercizes great caution when it does temporarily or permanently limit the rights of parents.
    Scott

    • ” By the way, I also used to work for DCF in MA and despite its shortcomings exercizes great caution when it does temporarily or permanently limit the rights of parents.”

      Hahahaha. The state of Massachusetts will NEVER know glory. It is forever out of their reach.

      Try honesty and then balance that lop-sided idea you’re holding about the “great caution” of your former employer.

      “partial information is a isn’t a very good platform to stand on.”

      There is enough information in Justina’s situation to see what’s really happening: *complex surgeries*

      That’s PLURAL.

  3. Scott,

    Why has the kid been held in the unit for 9 months? Even if she was misdiagnosed, which I seriously doubt, she should be treated on an outpatient basis and placed with a foster family if they think the parents are unfit.

    Anyway, that seems extremely excessive and makes me quite suspicious of the hospital’s motive.

    AA

  4. *******************CALL TO ACTION***************************
    Please circulate information about a protest against boston children’s hospital and the MA department of children and families happening THIS THURSDAY 12/5 at 9AM in BOSTON (the parent’s next court date) and support the release of this teenager back to her parent’s custody.

    Members of the Boston Icarus Project chapter will be attending.
    More info: https://www.facebook.com/events/193643630821278/

    From the Facebook event page
    ” Protest Boston Children’s Hospital and Massachusetts Department of Children & Family

    In the past 3 years, and overwhelmingly in the last 12 months, a number of families have sought the help from patient advocacy organizations due to false accusations of medical child abuse, overmedicalization, Munchausen’s by Proxy or somatoform disorder placed upon the patient and family by BCH.

    Currently, 15 year old Justina from CT has been held at BCH going on 10 months! Her parents and family are only allowed one hour of monitiored visitation and 2 20 minute monitored phone calls each week. Shockingly, this family has written proof that every medical action taken by them in their care of Justina was ordered by a physician. Despite this proof, BCH forcibly removed the parents from Justina’s care and have since assumed custody of their child indefinitely.

    The parents of Justina’s next court date is 12/5/13′

    We hope that Justina will be released to the custody of her parents that day.

    Please attend the protest and show your support for the family and all families that have been affected by such poor and unjust decisions.

    Physical address: Suffolk Probate and Family Court 24 New Chardon Street, 3rd Floor Boston, MA 02114 for GPS users.”

  5. Hi Cataract,

    I know all the parties in the case were prevented from talking because of a gag order. But I didn’t think that applied to the press covering the story.

    I mean, to not even be allowed to mention what happened during the hearing yesterday? It makes me feel like I am in Communist Russia.

  6. Another supposed “munchhausen” “case”

    Teenager on YouTube:

    had a heart attack in May 2012, heart surgery two months later. MEDICAL AUTHORITIES involved social services, had the boy taken from his mother and placed in foster care. Mother is being forced into mental health screening, got her ass kicked by “police”.

    His anger is serious, and dangerous. SOMETHING IS WRONG and that sort of anger could actually be a PHYSICAL condition, relative to his cardiac condition, more so than a “mental” condition. His face is red … HE NEEDS URGENT MEDICAL ATTENTION AND CARE.

    Just look at him, and hear him (he’s a teenager, and he says some teenager-like things but the point is … he’s communicating that A LOT is NOT OKAY). With so many people already involved in his life, I see a whole lot of neglect and ignorance. If there are social workers and doctors involved, they’re obviously NEGLECTING HIM or else he wouldn’t be yelling and storming on YouTube.

    http://youtu.be/wkKy10Z2Tuk

  7. Excellent!

    http://mitofamilies.blogspot.ca/2013/12/taking-active-stance-for-justina.html

    Monday, December 9, 2013
    Taking an active stance for Justina Pelletier!
    The director of MitoAction has decided to take a very active stance in helping Justina Pelletier. Cristiy Balcells has been on a panel for the Glen Beck radio show. She has written an article for The Blaze as well. Mrs. Balcells is working hard to help share education and alert the world to the Pelletier’s story.

    What can you and I do to assist MitoAction and the Pelletier family? SHARE this letter and chime in with LOADS of support. It would be the perfect time for us ALL to send respectful personal letters to Boston Children’s Hospital.

    The following was posted on FB by Cristy Balcells:

    Sent to the CEO of Boston Children’s Hospital:

    Mrs. Fenwick,

    As the executive director of a national mitochondrial disease advocacy organization and a patient advocate, I implore you to investigate the treatment of Justina Pelletier who is inpatient as a psychiatric patient at your hospital.

    Justina has been diagnosed with mitochondrial disease from one of the most well-respected physicians in the United States for mitochondrial medicine. She has a positive family history and her previous medical history has adequate documentation that the symptoms which she experiences are validated by laboratory and diagnostic testing.
    Upon admission to your hospital in April 2012, Justina’s mitochondrial disease diagnosis was disputed and she was diagnosed with somatoform disorder. Indeed, many patients with mitochondrial disorder are mistakenly diagnosed with a psychiatric condition such as somatoform disorder, especially since a hallmark characteristic of mitochondrial disease is symptoms in multiple organ systems with an unpredictable presentation.

    Please take a moment to review the following:

    Biopsychosoc Med. 2008 Feb 22;2:7. doi: 10.1186/1751-0759-2-7.

    Symptoms of somatization as a rapid screening tool for mitochondrial dysfunction in depression.
    Gardner A, Boles RG.
    Source:
    Division of Medical Genetics and the Saban Research Institute, Childrens Hospital Los Angeles, CA 90027, USA.
    Abstract AIMS:

    Somatic symptomatology is common in depression, and is often attributed to the Freudian-inspired concept of “somatization”. While the same somatic symptoms and depression are common in mitochondrial disease, in cases with concurrent mood symptoms the diagnosis of a mitochondrial disorder and related therapy are typically delayed for many years. A short screening tool that can identify patients with depression at high risk for having underlying mitochondrial dysfunction is presented.
    METHODS:

    Six items of the Karolinska Scales of Personality (KSP) were found to differentiate among 21 chronically-depressed Swedish subjects with low versus normal muscle ATP production rates. A screening tool consisting of the six KSP questions was validated in the relatives of American genetics clinic patients, including in 24 matrilineal relatives in families with maternally inherited mitochondrial disease and in 30 control relatives.
    RESULTS:

    Among the depressed Swedish patients, the screening tool was positive in 13/14 with low and 1/7 with normal mitochondrial function (P = 0.0003). Applied to the American relatives of patients, the screening tool was positive in 13/24 matrilineal relatives and in 1/30 control relatives (P = 2 x 10-5).
    CONCLUSION:

    Our preliminary data suggest that a small number of specific somatic-related questions can be constructed into a valid screening tool for cases at high risk for having a component of energy metabolism in their pathogenesis.
    As you are surely aware, the family in question has documentation that every test, every procedure and every medication was requested by a board-certified physician. In fact, Ms. Fenwick, I earnestly ask you to consider that the plight of this family is one faced by many families across the country when their disease is misunderstood.

    On behalf of the mitochondrial disease community, I am asking you to employ common sense and investigate the details surrounding this case. Upon doing so, you will find that since this child’s mitochondrial disease treatment regimen was removed in April of 2013, she has dramatically decompensated. The patient is weaker than she has ever been before. Further, despite being under the care of a team of physicians in your hospital for a number of months, she is not “better”. Despite being removed from the care of her attentive and loving family, her disease state has not “reversed” but has progressed.

    The lack of a guardian in litem to care for this child is equally distressing. This patient has experienced an absolute absence of a consistent adult whom she could trust and who could care for her. There are volumes of research on broken parental bonds and the tragic impact which they have on children of all ages, especially when the child is chronically ill.

    Ms. Fenwick, please know that the entire mitochondrial disease community is standing strong behind this family and that we are prepared to continue to take a public position to actively support this and ALL patients and families with mitochondrial disease. I am certainly available to you as a resource to help you understand the many complexities of this disease and the challenges which our patients face.

    Respectfully,
    Cristy Balcells RN MSN

    Cristy Balcells RN MSN, Exec Director
    Mitochondrial Disease Action Committee
    PO Box 51474
    Boston MA 02205
    http://www.MitoAction.org
    1-888-MITOACTION (888-648-6228