The plan stated that her "medication regimen will be simplified with a gradual reduction of medications to a small set of essential, non-detrimental, modestly dosed medication with limited side effects." The plan cited drugs that would continue "for now": Lyrica, which is indicated for fibromyalgia and nerve pain; and a "vitamin cocktail." But other drugs would be discontinued: Tegretol, for brain disorders and epilepsy; Milodrin, for low blood pressure; and Metoprolol, a beta blocker.
Pelletier said that when Justina was about 7, an MRI verified she had a large stroke on the left side of her brain, which affected her short-term memory. He said that withholding drugs that stabilize her heart rate could compromise her health.
He said he is "frustrated" by the hospital's allegations of over-medicalization. "Every procedure she had done was not pushed by us, but by the medical community. Insurance never would have covered it if it were not medically necessary."
"They say it's all in her head," said Pelletier.
Advocates for rare diseases who say their ailments are often misdiagnosed as somatic illnesses have taken up Justina's case.
Rare diseases, a collection of about 6,800 altogether, affect an estimated 25 million to 30 million Americans, according to the National Institutes of Health. Another 23 million have difficult to diagnose autoimmune disorders.
"Every doctor, on average, may see a bare minimum of two patients a day with a rare disease. It's statistically unlikely they have seen or heard of all of them before," said Diane O'Leary, executive director of The Coalition for Diagnostic Rights, an organization that promotes the "ethical management of diagnostic uncertainty."
The Coalition says it has lodged a verbal complaint with the Massachusetts DCF for "medical child neglect and medical child abuse for failure to provide medical care" for Justina. They also argue that the state has violated an Interstate Child Placement Exchange agreement that would give Connecticut custody of Justina. They also voiced their concern to the office the Massachusetts Child Advocate office.
"Medically unexplained symptoms are automatically assumed to be psychosomatic," said O'Leary, an ethicist who for 12 years was told her own medical symptoms were psychosomatic. She was eventually diagnosed with Sneddon syndrome, a rare neurological disease.
"Doctors are absurdly reckless when they exclude a medical investigation in favor of a vague somatoform diagnosis. It's always a guess," she said. "This is a battleground where doctors and patients are fighting for authority."
Dr. Joel E. Dimsdale, professor emeritus in the psychiatry department at the University of California, San Diego, agreed that doctors must always "take symptoms very seriously," investigating all medical explanations. He chaired the committee that reviewed somatic disorders for the latest DSM-5, the psychiatric diagnostics guide. He has not treated Justina.
"The tradition of ascribing symptoms either to a physical cause or a mental cause is intellectually bankrupt," he wrote to ABCNews.com in an email. "We are not wired that way. Symptoms, regardless of their origin, cannot be processed and reported without a mental filter. We do our patients the best service by attending to both the physical and mental aspects of their symptoms."
Meanwhile, advocates for Justina say that they are not suggesting somatoform disorder be eliminated or not applied to help patients who suffer from emotional issues.
"A panic attack is a panic attack, and you don't treat it with heart drugs," said O'Leary of the Coalition for Diagnostic Rights. "But the solution is a matter of pride and humility. If a doctor is limited in his discipline, and he sees a patient with symptoms that are vague or he doesn't understand them, he should approach it with humility and the awareness that it is something he has not seen before. We are all are comfortable with a doctor who says, 'We don't know yet,' and who continues to test."
She said "it is possible" that Justina suffers from both medical problems and somatoform.
"It's not an either/or in cases where there are many symptoms and many are explained and many are not," she said. "The issue is the mind and the body are connected, and a hundred years from now there will be a holistic approach. But at this juncture, doctors do not even have a category for symptoms they don't understand and that is indefensible."
A Facebook page was set up to fund raise for the Pelletier family and has more than 4,000 "likes." It says that authorities have "exerted unchallenged control over all aspects of Justina's health care and her life" and "executed the traumatic separation of Justina from her family, friends."
"We are David, not against Goliath, but against two Goliaths –- Boston Children's Hospital and the State of Massachusetts," Lou Pelletier told ABCNews.com. "To me it's a hopeless cause and the only way to win is in the court of public opinion."