Formally diagnosed from her doctor and specialist’s in Mitochondrial disorder at Tufts Medical Center, her diagnosis was changed when she was sent to BCS.
Justina had gone to Children’s Hospital because the girl’s main specialist at Tufts, Dr. Mark Korson,(Chief of the Metabolic Program at Tufts) wanted Justina to be seen by her longtime gastroenterologist, who had recently moved from Tufts to Boston Children’s Hospital.
The neurologist treating her at BCS said he “did not believe in mitochondrial disease”, yet he obviously believes in somatic symptom disorder. When the Pelletier family tried to move her back to Tufts Medical Center, Boston Children’s Hospital had the Department of Social Service make her a ward of the state.
This is the reality of the situation.
What is Somatic Symptom Disorder?
A Somatoform disorder 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.
The Diagnostic and Statistical Manual of Mental disorders has become the Bible for mental health care practitioners.In fact in order for your mental health care to be paid by your insurance you must be classified with something in the DSM.
Allen Frances, M.D., was chair of the DSM-IV Task Force and of the department of psychiatry at Duke University School of Medicine, Durham, NC. He is currently professor emeritus at Duke.
Toni Bernhard, J.D., a former law professor at University of California at Davis have both taken issue with the more narrowly defined somatic system disorder.
The word “somatization” refers to psychological stress that manifests in the form of physical symptoms. In other words, a person’s physical symptoms are traceable to a mental or emotional cause rather than to a physical one.
Somatic symptom disorder is being changed drastically in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders)
According to the article by Toni Bernard, People can be diagnosed with SSD if, for at least six months, they’ve had one or more symptoms that are distressing and/or disruptive to their daily life, and if they have one of the following three reactions:
Criteria #1: disproportionate thoughts about the seriousness of their symptom(s);
Criteria #2: a high level of anxiety about their symptoms or health; or
Criteria #3: devoting excessive time and energy to their symptoms or health concerns.
Dr. Allen Frances says in his post, “adding to the woes of the medically ill could be one of the biggest problems caused by DSM 5. It will do this in two ways: 1) by encouraging a quick jump to the erroneous conclusion that someone’s physical symptoms are ‘all in the head‘; and 2) by mislabeling as mental disorders what are really just the normal emotional reactions that people understandably have in response to a medical illness”.
Suzy Chapman,UK health advocate has been following the change in the somatic symptom disorder and is quite knowledgeable on the harm it will cause people as they lower the standard to diagnosis a person with physical conditions.
One of her many concerns is this and is my concern in how it relates to the Justina Pelletier situation.
Proposals allow for the application of a diagnosis of Somatic Symptom Disorder where a parent is considered excessively concerned with a child’s symptoms . Families caring for children with any chronic illness may be placed at increased risk of wrongful accusation of “over-involvement” with a child’s symptomatology.
Where a parent is perceived as encouraging maintenance of “sick role behaviour” in a child, this may provoke social services investigation or court intervention for removal of a sick child out of the home environment and into foster care or enforced in-patient “rehabilitation.” This is already happening in families with a child or young person with chronic illness, notably with Chronic fatigue syndrome or ME. It may happen more frequently with a diagnosis of a chronic childhood illness + SSD.
I am not a psychologist, but do have my college degree in Social Work and practiced it for a number of years after graduation. I am only looking into this because of the tragedy that has fallen on the Pelletier family.
My questions are these:
- How could Boston Children’s hospital diagnosis Justina in just 3 days with somatic symptom disorder?
- Why wasn’t the department of mitochondrial disease at BCH consulted?
- Why is Justina’s condition getting worse since she has been taken off all the vitamin and medicines treating her for mitochondrial disease ?
- Why if they feel her parents are abusing her have they not removed her sister who is also diagnosed with mitochondrial disease?
- How could BCH allow a little girl to only see her family once a week for one hour and speak to her for 20 minutes once a week. This makes no sense to me as a mother…I simply can’t imagine. This is cruel.
- Why did BCH not consult with her Mitro Specialist at Tufts who has treated her for several years and how knowledge of the entire picture?
- Why are DCF and BCH using the gag order to hide from media questions or explain why are they continuing to hold a 15-year-old girl captive and away from her parents?
There are just so many question into what is happening to this family. I have a friend who suffers from Chronic lyme disease, she knows more about lyme than I will ever know or understand. Why? The disease has not effected my family.
Isn’t is obvious that individuals and families are going to know more about a disease that effects them than most people?
Families that live with chronic disease’s always do.
Just like brain death, it effected my family and now I know more about it than most people ever will care to know. The reality is that in our day-to-day busy lives we never really dig into any subject until it effects us personally.
If you have questions or comments please post them in the comments.
***This is in no way to say BCS doesn’t do a lot of wonderful things, this is about the harm that has been done to Justina Pelletier.***