“Don’t go there, whatever you do.”  Warning from my daughter

For the past few weeks the news has covered the story of the 15-year-old girl who has been taken from her parents by doctors at Children’s Hospital, Boston based on the theory that only the doctors there know what is wrong with the girl and how to treat her. She had been a patient at Tufts University Hospital and diagnosed with Mitochondrial Disease, for which she was being treated and was doing well. Apparently she also has a sister with the same disease.

She became ill with the flu and her parents took her to Children’s, Boston, where the docs decided she did not have Mitochondrial Disease because it is “not a real disease”, and actually is suffering from some psychiatric disorder caused by her parents being “too involved in her illness”, and “over medicalizing her.” The hospital went immediately to court, had the parents rights revoked and took legal custody of their daughter. She has now been under guard as a prisoner in the psych ward, and on harmful anti-psychotic medications, for over 9 months, with the threat being that the hospital will keep her there until she is 18.

The Court has gagged the parents right to speak on their own behalf, and they are able to visit their daughter, under guard, only once a week. No other visitors are allowed.

The girl was still able to walk when she entered Children’s Boston but can no longer do so. With no teachers or friends allowed to visit she has regressed to the mental level of a second grader. The arrogant SOB’s at Boston’s are hunkered down on their diagnosis and legal position to the certain detriment of the child. The tame judge seems also to be some sort of fool, or tool of the docs, even though the doctors from Tufts University also testified before the judge to confirm their diagnosis and treatment.

The parents are under court order not to discuss their case with anyone since they are no longer legal custodians of their daughter. The hospital representatives refuse to speak out of court because of HIPPA rules. Catch 22. So much for free speech and any recourse for the girl or her parents.

This is not the only case of this sort happening today, but Children’s Boston seems to be the most egregious example of this kind of thing. This is a case that should make every parent’s blood boil. We can only hope enough money is raised to fight for the rights of the family, and that the hospital, their doctors and lawyers pay big time for what they are doing. The judge also needs to be investigated for her role in the matter.

I feel especially out of sorts because of my daughter’s experience at that hospital in 2004.

Our youngest daughter is afflicted with a rare neurological condition called Pseudotumor Cerebri (PTC), also known by some practitioners as Intracranial Hypertension (IH). The condition is characterized by the production of too much cerebrospinal fluid, leading to pressure within the brain, causing horrendous headaches, blindness, deafness, nerve damage and other problems. She also has a Chiari I Malformation at the base of her brain, making the PTC much worse.

One of the symptoms of PTC is swelling of the optic nerves, or papilledema. However, about 30 percent of the cases do not exhibit with papilledema and our daughter is in that group.  Over the past ten years she has had many central nervous system surgeries at the University of California, San Francisco and the University of Chicago, including shunts in both her brain ventricles and spine.

She also has what she chooses to call “Pervasive Autoimmune Disorder,” and has been diagnosed with Systemic Lupus Erythmatosis, Ehlers-Danlose Syndrome, Sjogren’s Syndrome, and now possibly Myesthenia Gravis, etc. and etc. She is ill most of the time. I will undoubtably address the issues of medical practice aside from ObamaCare, but not yet.

At one point our girl pulled herself together in spite of her pain and was attending Northeastern University in Boston when she became severely ill. She was told by her local physician to go to Children’s Hospital, Boston, even though she was already over the age of 18 (barely). Her father left Alaska for Boston as soon as he could, but she had to be alone in the hospital for three days. The doctors of Boston Children’s went to work on her, with questionable intent which, I think, became malice, probably because she is so medically knowledgable and argued her points. A letter later written by the Chief Neurosurgeon at Boston’s indicated her medical acumen was not proper and made her suspect. He also accused her of just wanting to “. . . use up all her parent’s money.”

To make a long story short, the docs finally ganged up on her and told her she could not possibly have PTC because she did not have papilledema. When she protested that not everyone did, more of the big guns were sent into her room to berate her, while she was lying in bed, for not listening to them, and then they lied to her by saying they had contacted her neurosurgeon in Chicago who now agreed with them that she was not sick at all and just wanted attention. The psychiatrist who was on staff was particularly insufferable.

When she asked why her neurosurgeons had operated on her so many times  when she supposedly had nothing wrong, the docs became even more arrogant and condescending. They let her know she was just a lowly peon who had no standing in their august company, that she had no business questioning THEM and then left the room. When her father reached the hospital just a few hours later, he found a thoroughly demoralized and sobbing girl who was being kicked out of the hospital. I guess we were lucky she’d just had her birthday. Her personal medical records, which she had brought in and requested be left in her room, had been confiscated by a nurse and were never found, then or later, and they discharged her from a CHILDREN’S hospital at 2 A.M. while the good citizens of Boston were tearing up the town after a World Series win. It was a mess.

Two days later as our daughter and her father were preparing to leave for Chicago, she remembered she was scheduled to see the hospital’s neuro ophthalmologist, whom she liked, and decided to keep the appointment. His diagnosis? Pseudotumor Cerebri, WITHOUT PAPILLEDEMA. The OFFENSIVE doctors probably never even read his report.

As you can tell, our family has no love for Children’s Hospital, Boston nor any respect for the competence and attitudes of their staff. And, no, the Chicago Neurosurgeon did not agree with their findings, the doctors at Children’s were just lying.

It’s long past time for the Board of Directors at Children’s Hospital, Boston to demand a complete investigation of all policies and personnel at their institution and clean the place up.

One can always hope that the physicians and other personnel involved in the present case, and, of course, the not-so-wonderful-judge, will get their just dues.

In the meantime, our advice is to think twice, and NEVER, EVER take your child to that hospital if you can possibly help it.

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