Tag Archives: Hippocratic Oath



Now that Alaska has its own scandalous medical situation, I wonder how many other states and hospitals are as sleazy as Boston Children’s Hospital. When the word finally got out that the “doctor” who diagnosed Justina Pelletier with Somatoform Disorder was in the United States to complete his medical training and had been at the hospital for only seven months, all kinds of red flags got raised for me.

First of all, this guy would probably be only a resident. That means he is not even yet a full-fledged doctor of anything. My experience with residents has been less than wonderful at times.

When our daughter was at Boston Children’s she had a resident come in and tell her that they would not give her her thyroid medication because her blood tests indicated she was fine and didn’t have any thyroid problems at all. She told him she had been taking the medication for two years and that was why her levels were normal, so if they took her off she would no longer be “fine.” He continued to argue but finally conceded the point and gave her the medicine. Why should she have had to defend herself? If the guy had any brains at all the situation should have been obvious.

One of the worst problems with residents is they tend to think they know it all and many of them stay that close minded in spite of what happens around them.

For the life of me I cannot understand how this “doctor” at Boston’s has been given leeway to do what he has done. And where has his supervising physician been in this mess?

The DFS in Massachusetts has been less than stellar in their handling of Justina’s case. For them now to say their goal has “always” been to do what’s best for Justina and reunite her with her family as soon as possible is a complete joke. Who does anyone believe anymore? Any patient, or their guardian, at any time has the right to request a second, third, or fourth opinion, and they also have the right to leave a hospital when their needs are not met.

And Judge Johnston needs to be thoroughly investigated. Who does he think he is and what conceivable right does he have to issue a “gag order” in such a matter?

This whole case is such a travesty, both medically and legally. Whatever can be done to restore trust in a hospital with such policies? I sincerely hope Justina’s family sues the hospital, the doctors and the state of Massachusetts, and that they sign no non-disclosure agreements.

In the Alaska case, I know that if our Governor does not at least speak out soon, I will work tirelessly against his reelection, and when the judge comes before voters for retention I will work just as tirelessly against him. When the names of the doctors are known I think they should be sued, individually and as a group. I will never again set a foot in any Providence medical facility if I can possibly help it.

What are the laws in your state governing what the medical profession can do to you? You might check out your state’s Youth and Family Services while you’re at it.



Soon after my daughter had transferred to the University of Chicago to be near a doctor who actually treated the conditions known as Chiari I and Pseudotumor Cerebri (PTC), I had occasion to approach him about some questionable behavior on the part of a resident in his program. The physician explained many things to me about the new students coming into medical schools. He said they were unused to real work and believed whatever they did had to be right because they had been reared by parents who taught them so. Students who had been raised on “self esteem” by their parents and teachers now had unions representing them, so they never had to take responsibility for themselves. He told me that minority students would accuse anyone who chastised them of racism. He said that we would look back on the 1990’s as the last of the “golden age” of American medicine. His admissions were stunning to me.

This doctor usually made rounds with only two or three residents or fellows accompanying him and they were pretty quiet then. One day he took all of his students on “grand rounds.” That meant that 10 to 15 people were crowded into my daughter’s room. I could not believe the student’s rude and insulting behavior, not just to my daughter but to their teaching physician, too. They talked and whispered to each other incessantly, giggled and laughed at jokes, and even shoved each other. The physician told me later that if he demanded they stop, someone would accuse him of abuse before the union.

I finally could not stand such behavior and said, “Dr. A, awhile ago you told me that the quality of the new residents you’re getting isn’t very good and they are hard to deal with. Were you telling the truth and do you still feel that way?” The residents stopped to listen to his answer. “Anniel,” he said, “It’s worse than I can tell you. They are so poorly educated that we almost have to start over. They don’t know how to work and don’t even seem to care. It’s a very sad situation.” He said some other unflattering things while the students watched with slack faces. I would have been crying had I been one of those students. I would not want anyone to think of me that way.

To my astonishment, when the physician turned again to my daughter the students went back to their former behavior. Remember, these were residents, which means they had already graduated from medical school. When they all left I told my daughter that I could not believe not one of them acted chastened at all. She laughed and said, “Oh mom, they don’t think he was talking about them.

There were so many times that these students needed to be failed in their studies and kicked out of medical school I can’t begin to write of them. But the university would have to deal with the unions. Some of these students had begun to mature when their rotations were over but most are somewhere out there now where I feel they are poor physicians and perhaps a threat to their patients.

There is one other aspect of the medical establishment that I feel needs addressing. No one, and I do mean no one, ever asks patients what they have learned about their illnesses. They never ask how treatment has changed them. It’s as though anything they learn is of no value.

When my thyroid was removed 43 years ago, it was a few years before I realized that the periods of ups and downs I had gone through for so long had been part of my illness. Just recently a doctor told me that what she referred to as “pulsatile thyroid disease” was very rare in the literature. Well, sure, most patients probably don’t figure it out and if they say anything the doctors don’t pay much attention. The “white blindness” I suffered the first summer I was in Alaska remained a mystery to me until my daughter had a thyroid storm and also went “white blind.” No one really cared about that either.

I bought a thyroid book when I knew my daughter had thyroid disease and could have added so much to what was said in it. None of the endocrinologists I have gone to have ever listened to what I could say, and when we tried to get a diagnosis on my daughter no one would listen to her symptoms. Let’s see, her hair was falling out in big hanks; she was freezing all the time, even in summer; she was losing weight and sleeping all the time. One endocrinologist told me to bring her back when she “starts having symptoms.” What did he think we had been saying for half an hour? Then he wrote in his report that the patient “denied” any family history of thyroid disease. We had told him about my grandmother, father, brother, aunts and myself. Had he been asleep or just not listening? Oh, I forgot: all patients lie to their doctors.

Dr. Hashimoto wrote the book on the thyroid in 1912, and I don’t think it’s been updated since. My daughter developed a newly identified (sort of) thyroid disease called Hashimoto’s Encephalitis a few years ago. After she nearly died and spent a few months going in and out of comas her thyroid was finally removed. When she went in to be checked by her endocrinologist in Anchorage he informed her that Hashimoto’s Encephalitis was not a “real” disease so to “shut up” about it. And, as he told us, all the other endocrinologists in Alaska agreed with him.

Are there good doctors out there? Of course there are. But they are only people like the rest of us and probably have their own bell curve.

Until medicine reaches another “golden age” we have to deal with what is, not what we wish was.


“FIRST DO NO HARM.” Hippocrates

This is a personal account of my thinking on the state of medicine in the United States today. My account is based on many years of experience because of genetic anomalies passed down for at least five generations in my family. I watched my father and his siblings struggle with glandular and metabolic disorders from their mother. I and at least one brother also fought the same disorders and now my two daughters and one grandson are afflicted.

Our youngest daughter’s medical problems began at birth even though she seemed very healthy. As she grew she thought she was like everyone else. People said they had headaches, so her headaches were normal; other people were “double jointed”, so when her knees pushed backwards or her elbows dislocated, that happened to everyone else, too; when she laughed or got upset, lost all strength and fell down, that also must happen to other people. In short the following rule applies:

There are many things your children will accept as “normal” and not tell you about. There is no way as a parent you can realize many things that afflict your child. All you can do is assume your child is healthy unless there are family diseases where the symptoms are clear, or you have a really good pediatrician.

When our daughter became acutely ill I recognized at once that she had suffered a thyroid storm. When I tried to tell the doctors about our family history and what I knew, I was told that, “This isn’t about you. Stop trying to get the attention.” Many years later our daughter finally had her thyroid removed and there is not a single endocrinologist or surgeon who knows what actually destroyed it. Even now there are doctors baffled by her condition and wonder if the thyroid is responsible for all of her problems.

She was finally diagnosed by lumbar puncture (LP) with a condition known as Pseudotumor Cerebri (PTC). The neurologist handling her case had told us specifically that the LP was a “benign” test that would give them a lot of information. After the test he decided that the radiologist hadn’t conducted the test properly and therefore the diagnosis was wrong. When I asked when they would redo the test he yelled at me, “WHAT KIND OF A MOTHER ARE YOU WHO WOULD SUBJECT YOUR CHILD TO A FAR FROM BENIGN PROCEDURE?” Let me get this straight. Last week the test was “benign”, but this week it’s not and I’m a terrible mother not to know that. Of course the rare diagnosis of PTC was later confirmed and twelve years later our daughter is still fighting the condition.

During the early days of her acute illness, just breathing near a doctor made me a Munchausen’s Syndrome by Proxy suspect.

Doctors really do not like patients (or their parents) who can diagnose themselves, especially when they turn out to be right. Even doctors can change their minds about their tests or diagnosis, but then they can always blame the patient or their parents for their second guesses.

I was near death when I was finally diagnosed with severe Grave’s Disease, which I thought was just a thyroid disorder. Even though I had a Radioactive Iodine Uptake Test ( a now antiquated test) which showed I had an uptake of 93, when a reading of 40 and over was considered highly dangerous; when I had a blood pressure reading of 160/140 (absolute fact); and I went from 105 lbs. down to 93 lbs. in only seven days, the doctors wanted to put any treatment off. They told me they would “try to do something for you in a month or so.” Fortunately a doctor friend steered me in the right direction.

Sometimes getting a diagnoses does not mean you will receive treatment, or that the doctors who see you will be competent. You may have to change doctors more than once. Check around and ask lots of questions.

Medical records are another source of concern to me. Everyone talks about electronic records and how much more “efficient” they will be. Yep, they will be out there, available to anyone, doctor or not. They will be out there, right or wrong. Two of my white as milk children, one male and one female, have been misidentified as “tall, overweight black females” on some tests put in their records. One was in Chicago and the other in Seattle. When they both reported the mistake they were told the records were part of their permanent record and could not be removed, but an addendum correcting the record would be added. However, the records obviously belong in someone else’s file and there are lots of pages between the reports and the addenda. And where is the correct information that should be part of their records?

Next question: Do doctors really read the records? I guarantee that many doctors don’t so much as glance at records until they are walking into the patient’s room. They probably don’t even notice any addenda.

At one point my daughter was being told she had a “flat affect”, so lots of psychiatrists were being sent to her room for a “mental health” diagnosis based on her “flat affect.” We didn’t know what they meant. I arrived in Chicago, stayed with her all day and saw that she did a lot of talking to friends and medical people. Her voice was getting quite raspy towards the end of the day when a quite arrogant pulmonary specialist entered the room, turned his back on me, and proceeded to question my daughter. She answered a question and he said, “Oh my, you do have a flat affect.” CLICK, went my brain, that’s what they mean. “Are you aware her right vocal cord is paralyzed?” I asked. He whirled around, glared at me and asked what I had said. I repeated that her right vocal cord was paralyzed. He stared at me while he processed that information then turned and barked out to her, “Why is your vocal cord paralyzed?” She smiled sweetly and said, “Because the surgeon here slipped and nicked my recurrent laryngeal nerve when he removed my thyroid.” He stood there staring at her for a few more seconds, then turned and left the room without another word. No one had even read the record that covered the thyroid surgery. Once they got that information out all the psychiatrists disappeared, along with the accusations of a “flat affect.”

On a local radio program the doctor described what happens when a doctor is trying to operate a computer while also trying  to interact with a patient. It just doesn’t work and it’s frustrating to both the doc and the patient.  And what good are records if they are wrong or go unread?

Enough for now. I have further more serious medical matters to address soon.



Of all forms of medicine, the most destructive is what is known to me as Adversarial Medicine. The doctor meets the patient for the first time, shakes his or her hand, asks, “What can I do for you?”, then proceeds to aggressively challenge what the patient says, calls their symptoms silly, and/or does a cursory physical exam while not paying attention to the patient at all. If a parent and child are involved the parent may be marginalized completely by sneering references to their assertions about the child. And Munchausen’s Syndrome By Proxy almost always rears it’s ugly head.

The Hippocratic Oath, “First Do No Harm”, is regularly trampled by doctors who truly do believe their patients and parents regularly lie to them.

I am going to begin a series of posts which are highly personal in nature, having to do with an illness which has afflicted my family for at least five generations. My grandmother Aina Jarvi, came to the United States from the Karelia Region which belonged to either Finland or Russia, depending on the last war fought. She brought with her genetic disorders which followed through to my father, Henry, his three half-sisters, then to me and at least one brother, then on to my two daughters and one son, and now one of my grandsons.

It has been a long journey discovering all of the permutations of these conditions, and a large part of that journey has been discovering the strengths and weaknesses of the American medical establishment.

Americans tend to think in terms of our “great” doctors and medical system. We think all doctors are intelligent, caring, kind, and self-sacrificing, and many of them are just that. But many are mediocre at best, and some of them are horrible. Depending upon your need, it might be just the luck of the draw which you will get.

I don’t wish to come across as pessimistic about the future, but even without the specter of ObamaCare hanging over our heads, many changes need to be made in what passes for medical care in many facilities.

I will start this story tomorrow writing of my father and what I know of my grandmother. I hope to be hopeful.

LATER. RETHINKING THE MATTER: I wrote several posts on my family’s medical experiences, however I have now decided not to put them out, at least for now. Instead I will be pursuing my critique of the medical profession as it exists at the onset of ObamaCare. One of my daughter’s main doctors told me a few years ago that the doctors being trained are, for the most part, not very good, and that we will look back soon and realize that the “golden age” of American medicine has passed. I think he is right.


“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.