"Suffering the Slings and Arrows of Outrageous Fortune"

The question lingers, ‘why would a renowned hospital like Boston Children’s Hospital wrongly kidnap a child?’ In my opinion, the answer lies in their frightening emphasis on somatic illness. From bottom to top, it seems there is a disturbing focus on somatoform in the psychiatry department and, from what I can see, the interest in somatoform is not casual.

David DeMaso

The head of the Psychiatry department, BCH Psychiatrist-in-Chief, David Demaso, has co-authored a textbook on pediatric psychosomatic medicine. If you go to his page on the BCH web site, scroll down and click on ‘specialties’ you will see he lists physically ill children, Pediatric Psychosomatic Medicine and Child Mental Health Advocacy. I guess you could say he literally wrote the book on the subject.

 

 

Bujoreanu PHoto

The psychologist who ‘diagnosed’ Justina with Somatoform, Simona Bujoreanu, after a mere 25 minute visit, has apparently written several papers on the topic so her interest in the topic is rather obvious. One is entitled Approach to Psychosomatic Illness in Adolescents. Here is the abstract for it, which contains a couple gems that are illuminating:

Due to the increased prevalence of psychosomatic presentations and the difficulty of managing such patients, this article summarizes the latest findings for identifying individual and family risk factors, and new trends in the evaluation and management of pediatric patients with psychosomatic illness.

Up to 50% of patients in pediatric care will complain of medically unexplained symptoms with significant functional and emotional impairment. Such patients place heavy burdens on the healthcare system (frequent utilization of health resources and hospitalizations, specialist consultations, unnecessary investigations, and treatments).

Somatoform disorders in pediatric care are associated with risks for psychiatric co-morbidity (anxiety and depressive disorders), family conflict, parent-perceived ill health, and school problems/absenteeism.

Gaining expertise in addressing pediatric psychosomatic illness can make a great difference in patients’ life and in physicians’ professional satisfaction. Effective treatment approaches involve a multidisciplinary approach to consolidate care and facilitate communication, target the patient/family’s understanding of the mind-body relationship and their acceptance of the bio-psycho-social formulation and treatment, and utilize functional rehabilitation and cognitive behavioral therapy for the individual and family and management guidance for schools.

(I will have to address this abstract in full in a post of its own. Truly, some hidden gems there.)

Patricia Ibeziako MD

Simona’s co-author on that paper is Patricia Ibeziako, who, according to her page on the BCH website, is director of  Pediatric Psychiatry Consultation Services.  If you go to her page, scroll down and click on ‘speciality’ you will see two items: Physically Ill Children and, drum roll, please…Somatoform Illness. Fascinating. What is it they say…once is an event, twice is a coincidence and three (or more) is a pattern.

In the ‘or more’ category is Robert Kitts, on the Pediatric Psychiatry Consultation Services team, who also lists Somatoform Disorders as one of several of his specialties. (you know the drill: go, scroll and click. I am not including his pic because he doesn’t necessarily have anything to do with the Pelletier case. Although, all of these photos are available with a simple online search, so it isn’t like these people are not visible to the public.)

Compare the finding of 4 individuals who flat out acknowledge their specific interest in somatoform or psychosomatic disorders at Boston Children’s Hospital to the finding of 0 at Cincinnati Children’s Hospital. I looked at the listed specialties of the Psychiatry and Psychology team members at Cincinnati Children’s, actually a far larger number than listed at BCH, and found not one who claimed somatoform as a specialty. There were several who listed mood disorders, which could include somatoform, but not one of them listed psychosomatic or somatoform disorders as their specialty. I would be interested in comparing other Children’s Hospitals around the country to this pattern, but not motivated enough to do so today!

Is it a coincidence that a hospital housing so many who view somatoform disorders as their specialty, would also be a hospital specializing in parent-ectomies  and locking up kids after overturning their medical diagnoses for somatoform?  You can be the judge of that.

There may be another smoking gun hiding in plain sight, right on their web site:

Our team members’ research

Boston Children’s Department of Psychiatry is recognized worldwide for its advances in child and adolescent mental health research. Researchers on our Psychiatry Consultation Service team are engaged in several significant projects in the areas of prevention, diagnosis and treatment.

Learn more about our team members and their latest research projects:

    • I. Simona Bujoreanu, PhD, is a staff psychologist at Children’s. She is currently collaborating on a National Institute of Mental Health-funded study that is examining the effects of a cognitive behavioral intervention for children and adolescents with inflammatory bowel disease and depression.

So, Simona is working on cognitive behavioral intervention for kids with inflammatory bowel disease and depression. Justina is rolled into the ER at BCH with gastro complications from the flu. She never sees her GI doctor when she was supposed to be directly admitted to his care, but rather her care is taken over by a neurologist who calls Simona. Simona promptly, and I do mean promptly, says ‘it isn’t mito, it is somatoform’ and Justina is taken from her parents and eventually locked on Bader 5, the infamous BCH psych unit.

In the  BCH Clinical Investigation Policy and Procedure Manual the policy for research on wards of the state is detailed. Namely, that “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”. Minus parents to object, dicey research is a lot simpler.

No, this study isn’t exactly about somatoform and Justina apparently doesn’t have inflammatory bowel disease, but it is still suspicious, particularly when you see in the abstract above that:

Somatoform disorders in pediatric care are associated with risks for psychiatric co-morbidity (anxiety and depressive disorders)

So, if Justina has GI issues resulting from Somatoform, then she would be at risk for developing anxiety and depressive disorders which could be the path into this or other studies. I don’t see that as a huge leap, although this may or may not be the smoking gun.

Whether it is or isn’t, there is clearly something at play at Boston Children’s Hospital. You would think, that they would run as far from this association as possible. But, they have been pretty clear that they are looking at Somatoform as the answer to 50% of cases that come through their doors.

From a chronic illness stand point, I suspect what is happening here is this: There is an epidemic of chronic illness which affects younger and younger patients. Chronic illness is messy. It is often hard to diagnose and even harder to treat. Many doctors dislike to treat chronically ill patients because they take a lot of time and they never get better. So, what better way to deal with it, than to say, it’s all in your head. The doctor no longer has to try and figure out what is wrong with them and passes them over to psych. And now, that person is a conduit for money (via the pharmaceutical companies) and grants (via NIH funding) and acclaim (because you can study them and publish a paper). It is a win for them, a horrific loss for the patient. A mercenary way to approach medicine.

It is a sick game and the rare disease/ chronic illness community needs to be aware of this trend. How many has it snared already? Well, one, for sure…

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Comments on: "Things That [Should] Make You Say Hmmm… #FreeJustina" (2)

  1. Thank you for this. I have been following the case here in the UK and there certainly seems to be the move here towards deciding that patients have somatiform disorder rather than bothering to actually find out what is wrong with them. I was diagnosed with somatiform disorder in 2010 by a neurologist not a psychiatrist. I found out through accessing my medical notes. What I actually had was severe autonomic nervous system dysfunction and ehlers danlos syndrome. My condition is rapidly deteriorating, had I not pursued a proper diagnosis I dread to think what would have happened. However I am acutely aware that I just need to see one doctor that decides that its somatiform disorder and I will lose all the care I have. These are dangerous times for the chronically sick.

    • So sorry for not getting you replied to sooner. I got SO behind!

      I hear so many people saying they were diagnosed with somatoform or munchausens or the like. It is appalling. When you know that it typically takes a person 10 years to be properly diagnosed with a rare disease, slapping a label of somatoform is just not ok. People DIE from being misdiagnosed. It just makes me so incredibly angry to hear stories like yours!

      I am so glad you didn’t accept that label and found out what the real problem is…and that you had docs who saw the real problem. You have to know what you are fighting before you can get better!

      These are dangerous times for the chronically ill – but hopefully some change is coming. I just hate that it had to happen at Justina’s expense. 😦

      Thanks so much for commenting and reading!

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