Archives For Boston children’s Hospital

Judge Joseph Johnson

Justina protest Juvenile Court judge Joseph Johnson has once again “kicked the can” down the road in releasing Justina Pelletier to her parents. In a court hearing yesterday, on St. Patricks Day, Judge Joseph Johnson said he would decide by Friday, March 21st.

Justina’s court appointed attorney and the Pelletier family had come to an agreement that she would be released to her home as long as she gets proper medical care and schooling. (something she has NOT been getting the last 13 months)

Justina has been in captivity since February 2013 and has not had any schooling, one visit a week for one hour with her parents and one 20 minute phone call with them on Tuesday’s.

It should be noted that a felon in prison in Mass has five visits per week.

But lawyers for the Massachusetts Department of Families and Children, which has had legal custody of the 15-year-old since February 2013, said it opposed the plan, and urged the judge to reject it.

The makes NO SENSE!

When people first hear about Justina they can’t believe it.They keep thinking there must be a different side to the story.

There is no different side to the story.

Boston Children’s Hospital in cahoots (in partnership, in conspiracy, in league with, collusion) with Mass Dept of Child and Family Services are holding this child because they disagreed with the medical treatment of Tufts Medical Center.

Besides the difference in medical opinions by two well respected hospitals, what else is going on? I am not a conspiracy theorist. But like others why are so many people calling for her release and she is still in a residential home without proper medical care and without her family?

What is the possible justification for DCF Mass to hold this child?

One person on Facebook said, “Please note, that EVEN though the Pelletier’s have the help of a billionaire, a minder, several constitutional lawyers, 26 legislators, Dr. Phil, an outraged public, and highly qualified doctors at the prestigious Tufts Hospital, THEY ARE STILL BEING GIVEN THE RUNAROUND BY DCF?”

Yesterday on Dr. Phil where Lou Pelletier and two of his daughters appeared, Dr. Phil also took advice from Dr. Charles Sophy.Dr. Sophy is board certified in three clinical specialties: Adult Psychiatry, Child & Adolescent Psychiatry and Family Practice. He currently serves as the Medical Director for the Los Angeles County Department of Children and Family Services (DCFS), the nation’s largest Child Welfare System. As Medical Director, Dr. Sophy is responsible for directing the physical and mental health, as well as assisting in ensuring the safety, of over 40,000 foster care children.

Even he did not understand and has never seen any thing like this.

In addition to the Pelletier family, and Dr. Sophy on Dr. Phil, Areva Martin was also a guest. Areva is an Award-winning Children’s and Family Rights Attorney, and author.

Even she did not agree with what has happened and continues to happen to Justina and the Pelletier family.

This begs the question again as to WHY?

Why has every person who has looked at the case,met the Pelletier family agree this is a tragic injustice and yet Justina is still being held in custody by DCF and in cahoots with Boston Children’s Hospital.

Why has Judge Joseph Johnson again, “kicked the can” down the road?

As Michael Graham asks in his blog post today, “But what possible justification does DCF have to keep fighting? Are they that desperate to maintain their power to bully parents at will? Are they using this fight to get a ruling from a friendly court that affirms DCF’s absolute power to abuse at will?”

I don’t know.

I don’t think the Pelletier family knows?

Heck, I don’t think anyone in America following this case knows?

What is DCF afraid of?

Why won’t they let Attorney Matt Staver,represent the family?

He too has never seen anything like this.

Tragedy is a tool for the living to gain wisdom, not a guide by which to live.

Robert Kennedy 


justina protest in bostonStop the tragedy now, release Justina home to her family.

Justina Pelletier

Justina-Pelletier-BCH-FEATUREDJustina Pelletier is a 13-year-old child who has been diagnosed with somatic symptom disorder by physicians at Boston Children’s Hospital.

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 [3]. 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:

  1. How could Boston Children’s hospital diagnosis Justina in just 3 days with somatic symptom disorder?
  2. Why wasn’t the department of mitochondrial disease at BCH consulted?
  3. Why is Justina’s condition getting worse since she has been taken off all the vitamin and medicines treating her for mitochondrial disease ?
  4. Why if they feel her parents are abusing her have they not removed her sister who is also diagnosed with mitochondrial disease?
  5. 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.
  6. 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?
  7. 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.

Please tweet and and Also use the hashtag #FreeJustina so we can all follow along.


***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.*** 

Justina Pelletier

JJustina Pelletier plan from BCHI wrote yesterday about Justina Pelletier who has been held at Boston’s Children Hospital since Feb 13,2013 against her families will.

Since I was alerted to this story I have been following it very carefully and doing a lot of research on my own.

Justina is considered a ward of the state.

A ward means any child who has been adjudged dependent by a court and who is under the care or custody of a public official or agency, including foster children, or any child under the control of DSS in the state of Massachusetts. This also applies to children in penal custody or otherwise detained within the criminal justice system.
When Justina’s family did not agree with the plan of BCH to treat their daughter for mitochondria disorder and diagnosed her with “somatoform pain disorder,” (a psychiatric condition when a person experiences physical pain for which no known medical explanation can be found) they wanted her returned to Tufts Hospital.
Because Justina is now a ward of the state of Mass they can now treat her or withhold treatment anyway they want to.
Pay attention to the words on the treatment plan:
  • Strict limitations on medical discussions with the family
  • No discussions of medical test results
  • No second opinions
  • Eliminate discussion outside “our” hospital

Informed Consent

Informed consent is widely regarded as a cornerstone of ethical research. Because children (except for adolescents under certain conditions) do not have the legal capacity to provide informed consent, the concepts of parental permission and child assent have been developed as standards for ethical research involving children.

Parents have a most intimate and profound duty and desire to protect and promote their child’s safety and well-being in research, as in all realms of life. By improving the initial and continuing process for securing parental agreement to a child’s participation in research, investigators, IRBs, research institutions, and others can support parents in fulfilling their responsibilities and, thereby, help them feel that they have done the right thing for their child, whatever their decisions about research participation.

Those last two statements are taken from the National Research Council. The Ethical Conduct of Clinical Research Involving Children . Washington, DC: The National Academies Press, 2004

So in the case of Justina Pelletier, her family refused, the hospital got its way by making her a ward of the state so they could treat her anyway.

Please read Boston Children’s protocol on doing RESEARCH experiments on children who become wards of the state, it is only 2 pages.

Elizabeth Wray

This is not the first time making a child a ward of the state has occurred at BCH.  Elizabeth Wray arrived at Boston Children’s Hospital in Sept 2012, Wray said doctors at Children’s told the family that Elizabeth’s conditions were psychiatric in nature and not medical and suggested placing her in a psychiatric ward.

The same thing happened to her family that is occurring  to Justina Pelletier’s family they too were placed under a gag order. WTH?

After 10 months Elizabeth Wray was released from the hospital and sent home.

Justina has been in captivity for over a year.

I am a mother of five children, one in heaven. I speak to my children every day. I can NOT imagine what this little girl is feeling, isolated and alone. This in and of itself is a tragedy and my heart breaks for Justina. We know physically she is deteriorating, she has gone from ice skating until she got the flu to now in a wheel chair.

It is obvious that children’s hospital has been doing research on children (they refer to them subjects) for many years. I am quite sure they are not the only hospital participating on trials both medically and psychology on children.

They should follow the guidelines noted above in the National Research Council. The Ethical Conduct of Clinical Research Involving Children and get parents permission

STOP making children wards of the state to get your research!!

  • If Boston Children’s Hospital thinks Justina Pelletier was misdiagnosed and removed her from her parents, what about her sister Jessica who also has been diagnosed with the same disorder?
  • Why are people with Chronic Lyme disease not covered by their insurance companies?
  • Why is the American Psychological Foundation made up of a few people able to come up with new diagnosis all the time like grief? Yes grief after two weeks is now a psychological condition. Give me a break!
  • Why are not diseases with physical conditions like PANDA’S (Pediatric Autoimmune Neuro-Psychiatric Disorder Associated with Streptococcus),mitochondria disorder, lyme disease not getting the attention they deserve.

Please sign the petition to investigate the civil rights violation of Justina Pelletier.

Donate to Free Justina via PayPal.

I’ll end with a nice video made my Jennifer Leigh for the family.