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Originally posted by rue:
From what I know of low-technology cultures, children really are raised by the village. There's no such thing as a 'stay at home' mom, the community can't afford the loss of production from relatively young and healthy female adults. Children who aren't being actively nursed are usually elsewhere - even sometimes in communal shacks run by young men.

The idea that children don't get raised well b/c of diffusion of responsibility flies in the face of hundreds of thousands of years of human existance. Is it possible the problem is not the lack of 'ownership' (of responsibility and children), but that the village is now a degraded and fractured version of its former self?

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Originally posted by SignyM:
What I tell ALL parents when they're considering trying different therapies (conventional or not) is to:

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Originally posted by canttakesky:
There is significant evidence that chemo would not have helped their child, but their oncologists either were ignorant of or ignored this literature.

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You know, Sig, those are actually all very good advice. I'm impressed.

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And the problem with these rare conditions is that they DO get the attention of CPS. Here is a child with ongoing, serious, odd medical problems, with lots of ER and hospital time and the issues never quite - seem - to -- resolve. At best it looks - odd.

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Originally posted by rue:
it possible the problem is not the lack of 'ownership' (of responsibility and children), but that the village is now a degraded and fractured version of its former self?

Originally posted by citizen:
That's a good question. In the animal kingdom groups of social animals most often share the responcibillities of child care.
In fact I heard somewhere that homosexuallity may be natures way of producing non breeding pairs to help with child rearing.

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KEEP A DIARY, preferably with videotape or pictures. Human memory is unreliable ... mine more so than most! I've had to piece together medical hx from calendars, notebook entries, and the infamous "THIS IS NOT A BILL" insurance statements. I got MUCH easier when I consolidated it all into a large one-day-per-page diary. I take it with me to the Drs office, when they ask "When did..." I can answer exactly. And then I write down what they say. Makes 'em nervous. Tough.

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Originally posted by rue:
I found this ... to be, well, condescending.

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Aside from that, I was curious about why you felt you couldn't do both aa supplements and small amounts of regular food to condition the gut to accept it. Just curious, since I don't know much about this condition.

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Originally posted by rue:
Back to the grind ....

.... Respondent petitioned for review of the Board’s decision in the United States Court of Appeals for the Sixth Circuit,

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The occurrence of autoimmune thyroid disorders among patients with coeliac disease (CD) is well documented but the exact prevalence of CD among patients with autoimmune thyroid diseases (ATD) is as yet unclear. We screened 150 newly diagnosed patients with ATD by serum endomysial antibody detection (EmA). In 5 subjects (3.3%) EmA positivity was found; all underwent jejunal biopsy. On gluten-free diet an excellent clinical and histological response was recorded with an improvement of hypothyroidism and reduction of the thyroxine dosage. Our data suggest a significant high prevalence (3.3%) of CD in patients with ATD, in particular with Hashimoto's thyroiditis. Valentino R,et al, CNR, Experimental Endocrinology and Oncology Center (CEOS), Department of Cellular and Molecular Biology and Pathology, University Federico II, Naples,Italy

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http://www.sciencedaily.com/releases/2006/05/060531082022.htm

Source: University of Michigan Health System

Posted: May 31, 2006

Vaccinate or not? Treat or not? Study looks at tricky health decisions

If a deadly bird flu reaches America, which would you choose: To get a risky experimental vaccine now, or to forego that risk but face an even greater risk of dying in the epidemic? What would you choose for your child? What if you were in charge of public health for your community?

A new study probes how we make such tricky decisions, and how our decisions might change dramatically if we step back and put ourselves in the shoes of others.

The findings may help individuals who face tough health choices, and decision-makers who make choices for larger groups. It may also help illuminate situations where individuals make medical decisions that go against the advice from experts and authorities, and help guide doctors in advising patients.

In the June issue of the Journal of General Internal Medicine, a team from the University of Michigan Medical School and the VA Ann Arbor Healthcare System report the results of a medical decision-making study involving nearly 2,400 people of all ages and backgrounds who completed extensive online questionnaires.

Study participants were first randomly divided into four groups. People in one group of participants were asked to imagine themselves as patients in two different medical scenarios -- an experimental vaccine against a deadly flu and chemotherapy for a slow-growing cancer -- and asked to choose either to get the medical option or to take their chances without it. Each of the options carried risks and benefits, though the statistically better choice in each scenario was to get the vaccine or chemotherapy.

The remaining three groups of participants also read the same medical scenarios, but they were asked to think about the problem from different perspectives. One group put themselves in the shoes of a doctor advising a patient, another took the role of a parent deciding for a child, and a third group imagined being a medical director of a hospital making a guideline for treating many patients. All four groups made treatment choices and also reported what emotions each of those decisions provoked.

The results were striking. Only 48 percent of individuals who imagined being the patient said they would choose the flu vaccine for themselves, but 57 percent of those imagining being parents would decide to vaccinate a child, 63 percent of respondents taking on a physician role would advise a patient to get it, and 73 percent of those acting as medical directors would choose to vaccinate large numbers of patients.

The same pattern repeated for the chemotherapy scenario, with 60 percent choosing it for themselves, 72 percent choosing it for their children and 68 percent opting to advise individual patients and groups to get it.

"It's very hard to see the big picture when faced with a tough medical decision," says lead author Brian Zikmund-Fisher, Ph.D. "We get wrapped up in our own situation, and that perspective makes us focus on certain aspects of problem and ignore others." It's also human nature to avoid an option that might bring immediate harm upon yourself -- even when a "wait and see" approach may carry even greater risks than taking action. It's a reaction that researchers call the "omission tendency."

"Trying to step into someone else's shoes might give you a different perspective when you have a difficult health decision to make," Zikmund-Fisher explains. "If we take a moment, pause and consider the situation from a different angle, then that may help us see all the different pieces of information that are relevant. If we do that, we may end up making a different choice, but even if we don't, we can be confident that we have made an informed choice."

The study also highlights another human tendency that arises when we're in the position of making decisions on behalf of another person: to try to do everything in our power to help them. Whether it's parents deciding for their children, a woman choosing for her incapacitated husband, or an adult choosing for an elderly parent, these kinds of decisions happen every day.

"In such cases, the natural assumption is that the patient's doctors would make the same decision as you would, but that's not necessarily true because they're seeing the situation from a different perspective," says Zikmund-Fisher, a decision scientist and research investigator at the U-M Medical School's Center for Behavioral & Decision Sciences in Medicine who holds VA and U-M positions.

Just as the participants in the new study did when they put themselves in the shoes of a doctor or medical director, medical professionals may tend to choose more proactive treatment even if it carries risks, the researchers say. From their perspective, taking action is a more justifiable choice than doing nothing and accepting even greater risks. The same is true for medical directors of hospitals or insurance plans, who must make defensible, justifiable decisions for groups of patients.

The study's results also suggest that doctors should not shy away from guiding patients' choices, as some studies have suggested may be happening in this age of "consumer-driven" health care. Doctors can provide a valuable perspective on a medical choice, without being paternalistic, when they present patients with information about their condition and treatment options.

The study's senior author, Peter Ubel, M.D., director of the CDBSM and a professor of internal medicine at the U-M Medical School, believes that the study sheds light on tension in the doctor/patient relationship: "Most people try to follow the golden rule, doing unto others as they'd do unto themselves. But in this study, people seem to be following some other rule; the platinum rule, maybe? They do differently unto others than they would do unto themselves and, for the health situations we studied, they actually made better decisions for other people than they made for themselves. If physicians think this way when talking with patients, they may end up helping patients by talking them into decisions -- good decisions -- that they otherwise would not make."

The researchers were surprised by what they found when they tabulated the emotional responses reported by the study participants for each scenario. Interestingly, the scenarios that involved deciding for a child or a patient triggered more emotional involvement than those involving decisions for oneself. Zikmund-Fisher speculates that this may be because it's easier to summon up the potential emotional impact of making a wrenching decision for someone else than to imagine oneself in a situation that doesn't exist.

Now, the researchers are working to extend their work into studying decisions about end-of-life situations, where choices are often wrenching for families and clinicians alike. They also hope to perform studies of specific patient populations, rather than the general public sample used in the current study. In addition to Zikmund-Fisher and Ubel, the study's authors are Angela Fagerlin, Ph.D. and Brianna Sarr, B.S., of the CDBSM. The study was funded by the National Institutes of Health.

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Originally posted by rue:
What I got out of it is that people will look to more objective measures (statistical) when deciding for other people.

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What I was wondering is, is it posssible for a person to be so identified with someone that they will make a decision for that someone else as they'd make it for themselves.

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http://www.cnn.com/2006/HEALTH/08/15/breast.cancer.ap/index.html

More breast cancer patients suffer chemo side effects than thought

WASHINGTON (AP) -- Younger breast cancer patients seem to suffer more serious side effects from chemotherapy than previously thought.

Roughly one in six of those women wind up at the emergency room or hospitalized because of such side effects as infection, low blood counts, dehydration or nausea, researchers reported Tuesday.

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Most side-effect information comes from clinical trials of medications that can underestimate toxicity. Those trials are designed to prove whether the drugs fight cancer and therefore should be sold, and they tend to enroll only the best candidates instead of women who might be particularly sensitive to side effects.

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A total of 16 percent of chemo recipients received either emergency room care or hospitalization for those side effects. Most common: infection and fever, afflicting 8 percent of the patients. That's not a high number -- but it is four times what previous clinical trials had predicted, the researchers reported.

Copyright 2006 The Associated Press.

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Originally posted by rue:
This is a good example of why I don't trust drug co. studies submitted to the FDA.

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Unfortunately, that makes the public into guinea pigs after the FDA threshold is cleared.

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But once a drug has been out for a few years and good clinical data gathered, that information should be considered. It's not skewed data.

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Originally posted by rue:
...you credit every piece of go-se from anyone hawking alternative treatments, no matter how little science or how obvious the purveyor's self-interest. It's a double standard I find over and over again in every topic you address.

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The system is always guilty, while, often despite all appearances, the mavericks are always right. What I see missing is basic fairness.

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