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Justina's parents have been stripped of custody because doctors don't understand her medical condition. |
There’s a
strange case unfolding now at Boston Children’s Hospital (BCH). Justina Pelletier, a 15 year old girl from
Connecticut, has essentially been held prisoner in a locked psychiatric ward at
the hospital since February when her parents took her to BCH because she had
severe flu symptoms. Justina had been
previously diagnosed with a mitochondrial disorder—something many of us autism
parents are familiar with. Although the
diagnosis came from doctors at Tufts, hardly a fly-by-night medical
institution—a resident at BCH instead diagnosed her with “Somatoform Disorder”,
a form of mental illness where physical symptoms cannot be traced back to any
physical cause.
Doctors at
BCH determined that Justina was the victim of “medical child abuse”, alleging
Justina’s parents were subjecting the girl to unnecessary treatments while
denying her proper psychiatric care. When her parents disagreed with the
somatoform diagnosis, the hospital called in the Massachusetts Department of Children
and Families (DCF) and her parents lost custody to the state. Justina remains in the locked psychiatric
ward at BCH called “Bader 5”, and her condition has deteriorated to a point
where she can no longer walk. She is
allowed only a one-hour supervised visit with her parents once per week. Her
iPad and cell phone were confiscated by the hospital so she can have no
unmonitored contact with the outside world.
DCF gave the
Pelletiers a “service plan” that listed the steps they would have to take for
the agency to consider returning custody of Justina. “Parents must acknowledge and demonstrate an
understanding of Justina’s medical and psychiatric needs as well as her
emotional needs,” the document stipulated, “including an understanding of her
diagnosis of somatoform disorder.” It
further restricts the parents, forbidding them to “call in consult teams or
second opinions”. Does this sound like
an institution seeking to provide the very best care for its patients or one
where doctors’ egos dictate treatment?
Although one
of Justina’s sisters has mitochondrial disorder, which does have a genetic
component, BCH is so confident in their diagnosis of somatoform disorder that
they will not allow Dr. Mark Korson, the Chief of Metabolism at Tufts who made
the original diagnosis of mitochondrial disorder to further participate in her
care.
Dr. Korson
has written to Justina’s court-appointed attorney, and has stressed there are
no empirical tests to support a psychiatric diagnosis of somatoform disorder,
writing, “It is a clinical hunch…a best guess…So now I am writing because it
feels like Justina’s treatment team is out to prove the diagnosis at all
costs.”
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Another girl was "imprisoned" in the locked psych ward at BCH when her medical diagnosis was not understood by doctors. |
Sadly, this
case is not an isolated incident. The
day before Justina was moved into Bader 5, another teenage girl named Elizabeth
Wray from upstate New York was finally discharged after a 6-month stay in this
same ward while in state custody. In
Elizabeth’s case, she had a diagnosis of PANDAS, which is also a disorder
relatively unknown to mainstream medicine.
PANDAS is an autoimmune neuropsychiatric disorder that causes Obsessive
Compulsive symptoms, and like mitochondrial disorder is also not uncommon in
autistic children.
In
Elizabeth’s case, there was also a dispute with BCH as whether her problems
were physical or psychiatric. As in
Justina’s case, allegations of medical interference and medical child abuse
were filed against Elizabeth’s parents by DCF and the state took custody. The same representative from the BCH
psychiatry service who pushed to change Justina’s diagnosis to somatoform
disorder also played a key role in Elizabeth’s case.
The
resolution in Elizabeth’s case finally came when her care was moved to a team
at Massachusetts General Hospital and her parents agreed to get an apartment in
Boston—not a small sacrifice. How is it
that the state of Massachusetts can take custody of a child from New York or
Connecticut?
This seems
almost like a Twilight Zone episode, it’s so bizarre. Parents take their child to the hospital for
care for medical conditions, but doctors there are unfamiliar with these real
physical disorders. Because of their
medical ignorance and enormous egos, they diagnose the children with
psychiatric problems, accuse the parents of child abuse if they disagree and
strip them of custody. I find it scary
that when doctors aren’t able to diagnose a condition, the fallback is to
diagnose patients or their parents with mental illness…and beyond that, they
are able to have parents charged with “Medical Neglect” or child abuse.
Parents of
autistic children have run up against these types of allegations and in some
cases have been slapped with a “Munchausen’s By Proxy” or a “Factitious
Disorder By Proxy” diagnosis, whereby parents are accused of deliberate harm to
their children to cause sickness, so the parent/s can get attention for
themselves. Because of mainstream
medicine’s ignorance of autism and the medical conditions that go hand-in-hand
with it, doctors do not understand the underlying reasons for restricted diets,
supplements, chelation therapy, and other treatments and believe them to be
detrimental to the child at best, and abusive at worst.
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See www.diagnosticrights.org to learn how doctors can trample your rights |
A family in
Arizona had their five ASD children removed from their home at gunpoint on the
suspicion they had falsely claimed the children had autism along with mitochondrial disorders,
gut problems, heavy metal toxicity, food allergies and MTHFR (a genetic
mutation that prevents the body from properly methylating {detoxifying}
itself). Many autistic children share
these problems—my own son included.
As I’ve
previously written, mainstream medicine is just not that interested in learning
about autism, believing it to be a form of mental illness that is best treated
with powerful psychotropic drugs. Parents
that have seen clear regression or illnesses result after vaccination have
declined additional vaccines; this is construed by doctors to be “neglect” by “failing
to protect” their children. Parents
questioning a doctor’s course of treatment can result in threats—or action—to remove
children from their parent’s custody.
Although Ryan
has a general pediatrician, she knows very little about autism and tends to
think along the lines of mainstream medicine.
Ryan gets most of his care from an autism specialist whose practice is
2500 miles away in Oregon. I know he
understands Ryan’s symptoms are real and not something we have fabricated for
attention. I know he realizes Ryan needs
a restricted diet for multiple food allergies and that placing a child on a
GFCF diet is not “deprivation” or even “dangerous”, as if Wonder Bread has the
nutritional value of broccoli. Ryan’s
doctor knows an MTHFR mutation (which Ryan has been genetically tested for)
indicates B12 supplements are beneficial…
But I wonder
what would happen if we had to take Ryan to an emergency room here on Oahu and
happened upon a doctor who like most doctors, knows little to nothing about autism. Would we be accused of the same sorts of
things other parents of children with little-understood illnesses have faced? Could Ryan be taken from us and placed in
foster care, as happened with the children in Arizona?
Our society
has elevated the status of physicians to god-like, as if they are infallible
and medicine is all-knowing. A
previously unknown tendon was just discovered last month and yet there is an
assumption doctors know all there is to know about the human body and illness. If a physical diagnosis cannot be made by a
doctor, it must be mental illness on the part of the patient or their family. Questioning a diagnosis or requesting a second
opinion can result in disastrous results for children and their families.
Just ask
Justina Pelletier.
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Justina has spent her 15th birthday and Christmas in a locked pysch ward. Could this happen to your child? |
Horrible they took away parent and childs rights. This hospital is where a bad doctor named paul ofit works he makes millions on dangeroys vaccine products. Hope parents fight this.
ReplyDeleteAloha! Yes, truly horrible. The parents have been fighting but I don't believe she's back at home as of today's date. Very sad and scary at the same time.
ReplyDeletePretty good post. I just stumbled upon your blog and wanted to say that I have really enjoyed reading your blog posts. Any way I'll be subscribing to your feed and I hope you post again soon. Big thanks for the useful info. doctor physician
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