Dangerous trend toward medical autocracy?

POSTED BY: canttakesky
UPDATED: Tuesday, October 26, 2021 23:43
VIEWED: 12224
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SIGNYM

Friday, July 28, 2006 5:32 AM

Quote:
Hmmm, well if you're talking about the situation above, the kid has cancer. I don't think the parents gave it to him. They're allowing him to pursue an alternative treatment that most people consider foolhardy or risky. Some people consider chemotherapy foolhardy and risky.

Sarge, I've been thru this lots of times already with a kid who was born really really sick and has had serious problems ever since. We've agonized about the risks of doing something AND the risks of doing nothing and even the risks of taking too long to decide. The outrage expressed by PARENTS over the trampling of their RIGHTS seems irrelevant and terribly self-involved. And feeling comfortable about doing nothing just doesn't cut it... it's a rationalization, and a selfish one at that.

Quote:
They're allowing him to pursue an alternative treatment that most people consider foolhardy or risky. Some people consider chemotherapy foolhardy and risky.

I don't give a crap what "some people consider". Some people consider that the earth is flat. I looked up this clinic and therapy. Despite its claims of 80% success rate AT BEST it has a 10% "success rate" ... and that's according to a supportive "altie" study. It's entirely possible that at this point he's facing equivocal odds even with conventional therapy. No matter which course the kid picks, he's going to feel like hell- either in the process of being treated or in the process of dying, or both. Not knowing the stats, I can't possibly advocate in any direction. But he certainly has my sympathy.

Every adult has the option to behave stupidly but that choice DOESN'T APPLY TO PARENTS WHEN DEALING WITH LIFE AND DEATH ISSUES OF THEIR CHILDREN. Mandating seat belts and helmets... well maybe that's taking protective action too far. The consequences are high, but the actual risk is low. I would advocate that if your child gets his brains bashed in a car accident and was found not to be secured, the hospital and insurance companies simply be directed to pull the plug on further treatment. Too bad for the kid but, hey... your authority, your responsibility. Have I made myself quite plain?

But in actual life and death situations, you as parent do not have the right to play god and throw away your child's life.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

SERGEANTX

Friday, July 28, 2006 6:17 AM

Quote:
Originally posted by SignyM:
....But in actual life and death situations, you as parent do not have the right to play god and throw away your child's life.

But the government does?

Like I said, it doesn't matter to me what kind of politics people play in this regard. I'll raise my kids the way I see fit, ignoring and/or evading the law as necessary. There's a dangerous precedent when parents begin giving up their responsibilities and accountabilities for the wellbeing of their children, but that's their call I suppose.

I'm just not sure how you justify favoring the judgement of government over that of parents as a rule. Especially considering the kinds of crap our current government is willing to waste lives on. Should we really trust them to make life and death decisions for our children as well?

SergeantX

"Dream a little dream or you can live a little dream. I'd rather live it, cause dreamers always chase but never get it." Aesop Rock

FREMDFIRMA

Friday, July 28, 2006 6:43 AM

Quote:
What I don't understand is your visceral hatred of the medical system.

In short ? they tried to kill me - decided I was a lost cause and going to die anyway, and thus withheld medical care to hasten the process.

One shining (insert heavy sarcasm) event was the pins of that godawful hoffman* birdcage stripping out, grinding through flesh and bone while the shattered ends of the bone itself grated together, resulting in an unwanted ER trip cause the neighbors were about to call the cops over the screaming - the pain is literally beyond description, a nightmare you can't wake up from, so debilitating that you WANT to die, but in your agony cannot gather the muscular control you would need to effectively kill yourself.. just so you know where it was.

Now imagine being mocked by the ambulance crew, who accuses you of being a junkie in need of a fix, cause you're not REALLY in pain, because the medical establishment doesn't consider you to be.

Now imagine being left, to lie there, screaming unable to even silence yourself, or even move in any coordinated fashion as the pain went on, and on, and on, for nine straight hours before they finally decided well, maybe he really is in pain, and brought around a doctor who took one look and RAN to get a syringe.

Another shining moment came much earlier, and it was realizing I would have to cut out the sunken and badly infected stitches myself, after being viciously rebuffed over this simple damned procedure because orders are orders and they were NOT going to provide medical care of any sort on a lost cause... an operation done on two beers with an eXacto knife and some drugstore alcohol, which was anything but pleasant or safe.

I could go on (as this was a long two years and things got steadily worse..), but there's no need - by all rights I should be dead, and if it weren't for a few rare docs who were willing to buck the tide, some of which in pretty strong ways, I would not be able to walk, and my health would be further debilitated.. I could care less about FDA approval when my ass is on the line and the hospital has already written me off.

Quote:
I'm not too crazy about it myself, but would you really watch your kid die after he screamed for days in agony?

As opposed to what, screaming for three weeks in agony begging to die ?
I'd make the judgement call my heart requires, and that's a case by case thing that cannot be blanketed, if it came to a choice as horrible as that, what would you do ?

Quote:
What does Vachss have to do with this? I looked him up, and....?

Because he is an extremely, extremley informed and credentialed source when it comes to child abuse of any form, and specifically, the first line of defense, the system of social workers who have to make these kinds of judgement calls - who are NOT trained, equipped, financed well enough to make them, and the whole field is so overburdened with conflicting directives, burnout cases, and caseloads that it is impossible for them to effectively do the job we've come right down to.

Make the judgement call in a case like this - that's their job, and they can't do it because they've been kneecapped by a lack of financial, political, and educational support to make it happen.

Ergo, no, I am not going to trust their judgement till that changes.

I think I got your question in there too, Rue - that answer ya ?
The folks who NEED to make these judgement calls... CAN'T, in the current system.
Fix that, and strike the root of the problem.

Any grey area should be thrown in favor of the family if it is unified on such a decision.

-Frem
================================
*Hoffman

This gleefully cheery sounding thing, the Hoffman External Fixator Apparatus or somesuch, is anything but, and given proper, constant and consistant medical care, might even work - but to slap this on someone and then kick them out, homeless into the winter streets of the inner city is rather beyond cruel and unusual punishment.

First, they strap your leg down good and solid, a

CANTTAKESKY

Friday, July 28, 2006 7:33 AM

Quote:
Originally posted by me:
I am saying I would draw the line to allow parental choice unless prosecutable harm occurs or is universally acknowledged to be extremely likely to occur (such as playing russian roulette).

Originally posted by SignyM:
...Once we agree the state has a right to intefere in a child's welfare the only thing left to discuss is the exact circumstances. ...

Originally posted by SergeantX:
This is exactly why it makes me so nervous to give into this line of reasoning at all.

I've been thinking about what Sergeant said all day long. He's right. I have to revise my statement on where I would draw the line. I can't agree that the state has a right to interfere in a child's welfare, if a child has not been harmed. I have to draw the line at prosecutable harm, period.

A government is not there to prevent harm before harm is done. People will disagree on this issue, but that is the ultimate question: what role should the government play in prevention? Prevention = authoritarianism. I would rather live without govt prevention and have more freedom. And it's not about me. I'm old--what do I really need all that freedom for? I need this freedom to do what I believe is best for my children. I need my children to have more options than those available within the profit margins of the pharm and medical industries. And if my children need that freedom and don't have it, I will find a way. If they need it, it will be done, whether it is legal or not.

I believe, in the end, children who die from their parents' choices would be fewer than children who die from physician choices or state choices. I simply trust parents more than strangers (physicians or the state) to care of their own children. Parents deserve the chance to make choices of conscience, and the benefit of the doubt. If harm DOES occur, then there is no more doubt, and the state can intervene.

BTW, Russian roulette IS prosecutable harm--it's called attempted murder or at the very least, severe emotional abuse.

Can't Take My Gorram Sky

CANTTAKESKY

Friday, July 28, 2006 8:17 AM

God, Frem. You have my deepest sympathies for what you went through.

There once was a doc by the name of Robert Mendelsohn who said that modern medicine has become a religion. The doctors are priests and hospitals are their temples of death. He also said you can't convince anyone of this through argument--that the disillusionment occurs only when someone suffers injury or death at the hands of these priests.

I have found it to be true. Everyone I know who distrusts the medical establishment started when they got hurt by them. Myself included.

I was disabled for 10 years following a flu vaccine. I was diagnosed with Myalgic Encephalomyelitis (ME), widely known in this country as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). At my worst, I lost my ability to walk, to sleep, to read, and to count to 10. I was bedridden in a conscious coma-like state for 3 months. I had to be carried to the bathroom. When I went in for help, they practically laughed at me--after they took my money of course. When I eventually regained my ability to read very slowly, I learned that the medical literature was replete of junk science studies on how we just needed to exercise. Interestingly, many of these early disingenuous studies characterizing us as somaticizers were authored by a Dr. Stephen Strauss, who was next appointed to head up all govt studies on alternative medicine.

Anyway, I learned that it wasn't that I encountered bad doctors. Those doctors were told by their professional literature to dismiss us. Docs who treated us fairly had to buck their training. It was my first step to distrusting the conclusions of medical literature.

But I can never seem to relay this to people who have never suffered iatrogenic losses. It's a pretty strong hold they have on folks.

Can't Take My Gorram Sky

RUE

Friday, July 28, 2006 3:23 PM

Frem,

On a completely selfish note, where was this torture done? I'd like to stay away from that locale if at all possible, just in case I end up injured or sick there.

I can't comprehend your plight, but you have my sincere sympathies.

Rue

SIGNYM

Friday, July 28, 2006 3:37 PM

Guys, I have every reason to distrust the medical system and I do. Clearly, you misunderstand me.

I have said over and over and over and over... follow the evidence. ALWAYS follow the evidence. And the FIRST evidence is: how is the patient doing?

TTUL

See below...

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

RUE

Friday, July 28, 2006 3:50 PM

CTS,

I've worked in various hospitals (private Catholic community, large private, VA and county) for over 11 years. For sheer medical ineptitude and callousness, I have never seen anything like what Frem describes. But that is not to say it doesn't happen. Regarding more "routine" iatrogenic problems, an estimated 100,000 deaths from hospital-aquired infection are estimated to occur every year. About 7,000 medication error deaths occur.

As a fellow CFS sufferer I sympathize. But my case came out of nowhere, so I have nothing to blame it on. What part of the vaccine do you think caused your CFS?

RUE

Friday, July 28, 2006 4:02 PM

SergeantX, CTS

If I understand you correctly, you hold the parent(s) to the standard of 'prosecutable harm'.

If the parents do not treat a child's terminal illness, and the illness progresses, is it harm? Or do you make an exemption for everything short of death in that case?

Below are the US abuse/ neglect statistics SergeantX wanted. They are only for birth - 3 yrs old, not total cumulative figures.

http://www.jimhopper.com/abstats/#s-statistics
http://www.acf.dhhs.gov/programs/cb/pubs/cm04/summary.htm

Quote:
Children in the age group of birth to 3 years had the highest rate of victimization at 16.1 per 1,000 children of the same age group in the national population (figure S-1). Girls were slightly more likely to be victims than boys were.

African-American children, Pacific Islander children, and American Indian or Alaska Native children had the highest rates of victimization at 19.9, 17.6, and 15.5 per 1,000 children of the same race or ethnicity, respectively. White children and Hispanic children had rates of approximately 10.7 and 10.4 per 1,000 children of the same race or ethnicity, respectively.

FREMDFIRMA

Friday, July 28, 2006 4:32 PM

Quote:
On a completely selfish note, where was this torture done? I'd like to stay away from that locale if at all possible, just in case I end up injured or sick there.

That would be the University of Maryland Medical Center.
Specifically the R Adams Cowley Shock Trauma Center.

Ironically it was some of their own clinical law students I managed to rook into helping me fight my case against them and "The State" in order to get medical care, which never came from them - in fact, their refusal made things worse because of some obscure issue about other docs not wanting THOSE docs to sue them for messing up their work on me (such as it was), and until I got a complete "go away and die!" write off from them, I could not effectively seek medical treatment elsewhere unless I found a doc willing to break a whole heck of a lot of ethical and legal rules to do it.

UMMC and Johns Hopkins supposedly have some of the best personnel in the world, but that was not my experience with em, and the guy who deserves a medal is the one working down the street in the poor folks district in Harbor Hospital's Gruehn Building - you ever need a real rocketjock of an Ortho Surgen, Doctor Jose B Corvera is your man, he knows his stuff, doesn't see or treat you as meat, and when you go see him, it takes a lil while longer, but you see HIM, not just some flunkie.

The man is damned good at his job, and he's got a set of big brass ones when it comes to cutting through the BS.

Also, there were a lot of low-rank ordinary folks in UMMC that quietly and stealthily bucked the system, in all the minor ways they could, most especially by 'disappearing' medical supplies that were all that kept me alive sometimes - not gonna identify them for obvious reasons.

My doctor selection criteria was pretty simple, if the words Can't, Won't, or Unable left their mouth, they were FIRED - I needed Herr Doktor Von Frankenstein, and I needed him immediately.... my guys are pretty good, willing to talk smack and back it up, cause you need a hefty helping of arrogance to be a good doctor/limbtech.

My acid test for the prosthetic leg was full function, and the ability to kick open a standard household door in one shot, yet remain fully wearable and comfy thereafter, a test which was accidently passed one day I went to pick up a friend standing on a corner payphone in midwinter, and left my keys on the counter next to the fridge, ooops.
HURRGH, WHAM!, yep, it works...

Gettin too old for that sorta thing now, but be damned if I would accept inferior replacement parts.. hell, I'm still waiting for bionics, but then, that's me.

-Frem

RUE

Friday, July 28, 2006 4:45 PM

Frem,

DANG ! I could'a sworn it would have been Florida somewhere. THANKS for the heads-up !

I'm glad you did eventually find good medical people. I truly wish you the best of health. And maybe some day you will get that better than new bionic part.

CANTTAKESKY

Friday, July 28, 2006 7:13 PM

Quote:
Originally posted by rue:
As a fellow CFS sufferer I sympathize. But my case came out of nowhere, so I have nothing to blame it on. What part of the vaccine do you think caused your CFS?

Rue, I am so sorry to hear this. (Hug)

I have no PROOF of course, that the vaccine was what caused my ME/CFIDS. My cascade of symptoms first began within 24 hours of the vax, so it is naturally suspect. I have also talked to dozens of other patients whose ME/CFIDS started shortly after vaccination as well, though not always the flu vax. Gulf War Syndrome, which is practically identical in symptomology, is alledged by many vets to have started after their vaxes. So I believe there are enough temporal correlations to warrant study. Has that ever been done? No. Do they warn people, "Hey, ya know, we haven't done a study, but there are a lot of anecdotal reports out there where people are disabled for years with severe weakness and neuroimmunological problems. Isn't common, but does appear to coincide with the vaccination. Just thought you should know." No, no warning.

If I had to guess, I would probably finger the mercury as a co-culprit. Each .5 ml contains 25 micrograms of ethyl mercury. There are other sources of mercury (food, air, fillings, etc), but there is nothing like mainlining it.

Wanna see what mercury does to neurons? Here's a short movie: How Mercury Causes Brain Neuron Degeneration by the University of Calgary. Picture is worth a thousand words.

http://commons.ucalgary.ca/mercury/

I have also read studies on Gulf War vets on dysregulated immune systems following vaccinations. I think that is more in the hypothesis stage. That mercury is neurotoxic is pretty clear.

Can't Take My Gorram Sky

SIGNYM

Friday, July 28, 2006 8:13 PM

Sarge, Frem, CTS and all-

I understand how you feel. I have been at complete loggerheads with the medical system (fortunately not the legal system) over our child. We were dealing with a very rare phenomenon... a phenomenon that at 8 y/o sucked our daughter's mind and soul and left her a shambling, trembling, disoriented, mute shell of her former self. We were "the first" in our HMO for a lot of things: the first in the VEEG unit, the first to try the keto diet, the first to try Felbatol, and Vigabatrin. We shipped controlled substances over both borders.

Her condition resisted a dozen different anticonvulsants, two years of the ketogenic diet, sensory integration therapy. We heard from our primary, second, and third opinions (literally) "We're up a creek w/o a paddle" and "You've done everything you can", "I'm sorry, she's not a candidate". (When you hear those words you NEVER forget them.)

It was a phenomenon so rare, I FOUND THE DX ON THE INTERNET FROM ANOTHER PARENT. So rare, I had to call a bookstore IN LONDON FROM LA at 4 ayem to get a copy of the only book on the topic. So rare, I spent a half hour on the phone with a doc across the country who had treated something similar, and then had to shop the faxed treatment protocol around. So rare we had to give our daughter's neuro a private personal waiver to try something really unusual. Through all of this, I was the driving force.

And then I came to complete loggerheads with my SO AND the medical establishment about what to do next. I rolled my eyes and sighed loudly. I was very reluctant to start down a path I thought was fruitless.. especially since I had bucked the medical system before and been so profoundly correct.

And you know what??? THEY WERE RIGHT. I learned not to be so very full of myself: my opinions, fears, hopes, theories and feelings where I COULD NOT LISTEN AND TRY A NEW APPROACH.

I just see a tremendous amount of hubris going on.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

CANTTAKESKY

Friday, July 28, 2006 8:31 PM

Quote:
Originally posted by rue:
If the parents do not treat a child's terminal illness, and the illness progresses, is it harm? Or do you make an exemption for everything short of death in that case?

I believe parents have a right to make a cost-benefit analysis. Chemo might buy more time, but if that time is crap, the parents might opt for slightly less time, but less suffering in that time. A terminal illness means a disease is going to progress regardless--so it is hard to blame parents for the progression.

If doctors are telling parents that the treatment means survival vs. death, then parents have a right to verify if this claim is true. If they disagree with that claim, I think they have a right to try other treatments. If the child dies, the state can prosecute. Parents can defend their position in court with what evidence they have for refusing treatment.

So yes, again it comes to actual harm done. For me, anyway.

Can't Take My Gorram Sky

SIGNYM

Friday, July 28, 2006 8:52 PM

As I said- I see a tremendous amount of hubris going on.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

CANTTAKESKY

Friday, July 28, 2006 9:20 PM

Signy,

First, I am so sorry to hear about your daughter's illness. As a parent of a child with a serious chronic illness, I sympathize. I don't think there is pain on this earth much worse than seeing your own child suffer.

Quote:
Originally posted by SignyM:
I just see a tremendous amount of hubris going on.

(Now back to the ring.) You should have just come out and said, "Hey you arrogant poopyheads. Who do you think you are to think you know more than MD physicians?"

I can make a better decision than a doctor because I know myself (and my family) better than they do. I am also not constrained in my knowledge to a limited line of products manufactured by the pharmaceutical and hospital industries.

I don't trust doctors. But I never said I wouldn't use them. Doctors are sales reps for a specialized line of products. Sometimes, I find that one of those products is the best solution available, and I go and buy it. Other times, I find better solutions elsewhere.

People get rancored when I say I can evaluate and choose health care options for myself. You're not a doctor with years of training, they say. How dare you! I dunno. I can read, the literature is out there for the whole world to see, and I make time to read it. Why can't I know what they know?

My primary interest is the welfare of my children. I will do whatever it takes for them to be the best they can be. If, after my research of all options, that means hospital care and a lifetime of medical services, I'll do it. I won't like it, but I'll do it. If the best solution is an alternative therapy and living in fear that CPS will show up at my door, I'll do that too. Maybe you had a problem trying a new approach (since you said you did). But I don't.

Take the homebirth of my kids. Did I do it to suit myself, because I hate doctors? Hell no. Do you know how much it hurts to give birth? Damn, I would have rather had drugs. But guess what? I read somewhere that drugs are bad for kids, even before they're born. So I bit the bullet and did it the painful way.

Moreover, I spent $3500 out of pocket to pay midwives to come to my home. Guess how much it would have cost to go to the hospital? $0. Yeah, my insurance would have picked up every penny. The things I can do with $3500! I would have rather had a trip to Europe or a big screen HDTV, hubris be damned. Plus I wouldn't have to put up with all the people who told me my babies were going to die and that homebirth was the earliest form of child abuse. No, I didn't do it because I was too close-minded to use doctors. I read and read and decided that was what was best for my kids.

Is it hubris to know that I can make a better decision for them than a stranger, however genuine he may be, who is merely trained to sell his line of products? Where exactly is the hubris: that I dare to read or that I dare think for myself?

Can't Take My Gorram Sky

SIGNYM

Friday, July 28, 2006 9:45 PM

Quote:
(Now back to the ring.)

Welcome!

Quote:
You should have just come out and said, "Hey you arrogant poopyheads. Who do you think you are to think you know more than MD physicians?" I don't trust doctors.

Neither do I. I've just spent about 10 years telling them what to do.

Quote:
But I never said I wouldn't use them. Doctors are sales reps for a specialized line of products. Sometimes, I find that one of those products is the best solution available, and I go and buy it. Other times, I find better solutions elsewhere.

You and I share a very similar philosophy. Got no argument with you there.

Quote:
People get rancored when I say I can evaluate and choose health care options for myself.

I don't.

Quote:
My primary interest is the welfare of my children. I will do whatever it takes for them to be the best they can be. If, after my research of all options, that means hospital care and a lifetime of medical services, I'll do it. I won't like it, but I'll do it. If the best solution is an alternative therapy and living in fear that CPS will show up at my door, I'll do that too. Maybe you had a problem trying a new approach (since you said you did). But I don't.

I've had no problem trying new approaches. The approach that I had problems with was anticonvulsants (AGAIN). Hey, we had been there and done that.

And I don't have problems with your philosophy. But apparently you didn't understand my post. I seem to be having a helluva time making myself understood.

What I find... scary... is that you assume that you're ALWAYS right. Nobody else is allowed in your decision-making. And you sound like you would gamble your kids' health on that bet. I have yet to meet the person who is "always" right... not even me.

So... what kind of serious chronic illness does your child have?

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

RUE

Friday, July 28, 2006 9:59 PM

SignyM

I feel for you. I have a niece who I love with all my heart, who also has a horrendous medical history. If there were someone to bargain with (too bad there is not), I would have given my life to spare her her suffering. (In this case I believe the doctors were not grossly negligent, but a little bit extra dilligence on their part would have eliminated the entire problem. THAT SUCKS ! )

I have what I think is a healthy scepticism of the medical system. Most doctors operate on the 80% solution: 80% of people will get better on their own despite whatever is done, or not done. Drugs will work on 80% of the people who need them. And so on. It's true. Nature fixes a lot of things and medicine doesn't provide miracles. And then there are the roughly 120,000 people who die each year in the US from infection and medication error. (From experience and from working in hospitals, Frem's nightmare is so extreme it's off the curve. It sounds like something from the charity hospitals of the 1800's. I even wonder if criminal charges are appropriate.)

But overall, medicine helps FAR more people than it hurts. You just can't be passive about your care.

For the times you get to pick the hospital, here is helpful information: http://www.hospitalcompare.hhs.gov/

----------------------------------------

The question of medical treatment of a minor, parents' rights, children's rights, and state's rights is an interesting one.

Children are not independent self-sufficient adults. Their lives are at the mercy of whatever caregiver they happen to have. As such I believe they are entitled to a higher level of state protection than you from the neighbor next door. For example, a neighbor is not allowed to punch you - that is assault. So I believe a child should have at least that much legal protection from a parent. But a neighbor is also not in a position to starve you. A parent is in that position. And so there needs to be a higher level of protection provided by the legal system against neglect.

CTS seems to be saying children should not have that level of protection. In the case of witheld cancer treatment, she seems to be saying that declining health isn't enough harm to invoke legal protections. By analogy, any other neglect - SHORT OF DEATH - isn't harmful enough either, because it could be reversed.

SergeantX seems not to have come to grips with families where children are true helpless victims of neglect. I think he's afraid that once he admits the state has a right to monitor not just what you DO but what you WITHOLD, then his rights might get trampled-on. That is a threshold he doesn't want to cross.

------------------------

Once we've established that there are parents who are intentionally harmful either directly or through neglect, it crosses the barrier to setting up a system to protect children. Once that happens, then it does become a judgement call - What kind of care? How much care? How little care? When?

----------------------------

I did think your joke ('it's all about you') was close to the mark. And I think there is a certain amount of what you call hubris and what I call arrogance - ONLY I KNOW WHAT'S BEST ! - ONLY I GET TO DECIDE ! - that factors in. I would WANT a safety net if I was so mistaken I was harming my children.

As I indicated before, the decision making process between doctors and patients is a bad fit. And then proxies make decisions for silent dependents.

I agree with you SignyM - look at the patient.

SIGNYM

Friday, July 28, 2006 10:10 PM

Rue- What kind of diligence? Just wondering.
PM me if you want this offline.

EDITED TO ADD: I like what you said about a safety net.
---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

RUE

Saturday, July 29, 2006 12:41 AM

CTS, Frem and SergeantX

I can understand how you might feel blind-sided. I did very carefully attend to all of your arguments, and to SignyM. I thought about all I know about medicine - biochemistry, pharmacology, physiology, which is the basis for medicine; and about current medical and basic biological research. I thought over my professional and personal experience and current medical practice. I thought about the efforts I have gone through to make sure family members got the best from the medical system.

I thought about the children that used to come through the county hospital. That is what tipped the scale for me.

I have NO DOUBT you are all loving, diligent, intelligent and highly educated people who want nothing more than the very best for your children. I have NO DOUBT that you all have a well-earned mistrust of 'the system'.

But I was curious as to where you would draw the line, and it seems to be here: "I am willing to put all children at risk so long as my prerogatives remain intact." And the only thing I can imagine that underlies the idea, is a basic assumption that you are superior at all times. Please let me know if I have completely erred.

THANKS.

Rue

PS I don't mind if you excoriate me here on the board, or privately.

SIGNYM

Saturday, July 29, 2006 12:45 AM

Quote:
...the children that used to come through the county hospital.

???? I assume you mean... "not in a good way". Please elaborate. Thanks.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

RUE

Saturday, July 29, 2006 12:50 AM

Like the five children who had gonorrhea - the oldest was 5 the youngest was 18 months. It was everywhere - mouths, eyes, rectums, vaginas. The father was positive, the mother was not. She was just happy her husband wasn't 'bothering' her anymore.

PS And this might meet CTS's standard of 'prosecutable harm', or not. The father was guilty of statutory rape. The mother - merely neglect. She didn't know, she didn't want to know.

SIGNYM

Saturday, July 29, 2006 1:35 AM

Rue: Oh. Sorry I asked.

Well folks, it's been real. But to tell you the truth, rehashing our experience and the whole discussion has left me heartsick.

I feel terrible for all of us who've had medical misfortune. I feel very sorry for Abraham Cherrix and even sorrier for Katie Wernecke, who will both in all likelihood suffer terribly and then die. I don't know of any perfect systems and I sure don't know any perfect parents. So I'll stop contemplating these largely preventible tragedies for a while and regain balance. (Assuming I had any to begin with... some would argue.)

TTUL

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

SERGEANTX

Saturday, July 29, 2006 1:43 AM

Quote:
Originally posted by rue:
But I was curious as to where you would draw the line, and it seems to be here: "I am willing to put all children at risk so long as my prerogatives remain intact."

This isn't actually my perspective at all. My particular prerogatives aren't even much of an issue given that my children are nearly grown. Believe it or not my concerns are actually for the general well being of children and families. I just happen to think that undercutting the rights and responsibilities of parents will do more harm than good.

A lot of the poor parenting I see today is backed up by feelings of powerlessness. Parents feel they don't really have any control over their children, or that if they tried to take control they'd be looked down on. I know parents who are afraid to spank their children. They're not convinced it is wrong, per se, they're actually afraid of being acused of abuse.

Families are accosted by the combined pressures of public schooling, popular media, and a legal framework that reinvorces the idea that society is more important than family. As parents buy into this notion more and more, we see them caring less and less - taking less and less responsibility for their children.

We can argue emergency ethics all day long, but it's the vast majority and what our policies are doing to a typical family's makeup that concern me. You seem to be willing to strip away the independence of families in general in order to prevent abusive cases at the fringe. There will be extreme cases and, like I said, where abuse can be proven the law has a responsibility to act. But micromanaging healthcare decisions, education decisions, or general parenting is out of line. Even when you might consider those decisions foolish or dangerous.

Quote:
And the only thing I can imagine that underlies the idea, is a basic assumption that you are superior at all times. Please let me know if I have completely erred.

I've lived too long to manage that kind of delusion. And to be honest, if my kids were faced with kinds of challenges several of you have experienced, I'd wouldn't be making my own calls. I'd be looking for whatever authoritative advice I could find. What I'm arguing for here is a basic respect for the tough position that parents are in. They need to know that the are expected to make important, even life and death, decisions for their children. And they need to know that those decisions will be respected. If everything a parent does is subject to veto by a 'higher authority', that notion of respect and responsibility is severely degraded.

SergeantX

"Dream a little dream or you can live a little dream. I'd rather live it, cause dreamers always chase but never get it." Aesop Rock

CANTTAKESKY

Saturday, July 29, 2006 4:36 AM

Quote:
Originally posted by SignyM:
I seem to be having a helluva time making myself understood.

What I find... scary... is that you assume that you're ALWAYS right. Nobody else is allowed in your decision-making. And you sound like you would gamble your kids' health on that bet. I have yet to meet the person who is "always" right... not even me.

My apologies again for any misunderstanding. I seem to have the same problem being understood.

No, obviously I don't think I am always right. I just think I should HAVE the right to raise my children--even when I make mistakes.

When do the mistakes go too far? When they become child abuse. Child abuse is a crime. The state should intervene when a child is abused.

What I object to is the belief that alternative health practices are automatically abusive, even when the children turn out happy and healthy. There are people who want to outlaw all homebirths, simply because they are alternative--even when no harm has occurred. We should not take away that choice from hundreds of parents who give birth to healthy babies at home, just because once in a while, someone makes a mistake and a child dies in a homebirth. Rather, penalize the person who made the mistake and let the rest make their choices. No harm, no foul.

Quote:
So... what kind of serious chronic illness does your child have?

My son has a relatively rare condition where he is allergic to or intolerant of all foods. It causes malaborption and undernourishment, which leads to failure to thrive (failure to grow). I suppose, if left untreated, they could die. The treatment is to put them on a special formula that contains no proteins for them to react to. The formula is slightly bitter, so babies refuse to drink it. Insertion of a feeding tube directly into the stomach or intestines is very common.

Once they are on this formula, they grow normally. But many of these kids remain dependent on this formula--it appears for the rest of their lives. They have food trials to find the few foods they can tolerate, but their main nourishment comes from drinking this stuff.

I opted for an alternative therapy because I don't want him to be dependent on formula for the rest of his life. It is working slowly, but it is working. The disadvantage is that it works slower than formula in helping him catch-up his growth. The advantage is it helps him to tolerate food better, whereas the formula doesn't. He can now eat most vegetables and grow at the same time. Most of his other symptoms are gone too, though not all yet.

Yes, I went out on a limb. Yes, I used my son as a guinea pig. We are lucky it worked, but there was a chance it might not have. I spent countless nights crying, wondering if I am doing the right thing for him. There are no perfect solutions in life, and therefore no easy decisions. If it hadn't worked, I would have gone the normal route, but I had to try this first. I had to give him a shot at having the most normal life he can have, at not having to drink formula when he is 19.

Before we knew the therapy worked, someone could have easily accused us of medical neglect. The formula is a sure thing--99.9% success in getting rid of symptoms. In a judge's view, a therapy unproven in literature would be the same as declining a sure thing for no treatment at all. I could have easily been forced to put a feeding tube in him. Moreover, the therapy could have been dismissed as useless when it didn't work as fast as conventional treatment. Someone could have been breathing down my neck, measuring the amount of harm he was suffering while he wasn't getting conventional treatment, wondering when it was enough to take my kid away. [Edited to add: And if they did stop me, my son would be symptom-free and formula-dependent, and not be on his way to being cured.]

So you see, this issue is not just hypothetical for me. I NEED the freedom to choose for my child. I NEED the freedom to think outside the box to find the best solution possible when everyone else

CANTTAKESKY

Saturday, July 29, 2006 5:05 AM

Quote:
Originally posted by rue:
"I am willing to put all children at risk so long as my prerogatives remain intact."

All children ARE at risk, either in the hands of their parents, or in the hands of the state. I think the risk is smaller in the hands of parents, for I believe most parents do love their children. And I know the state doesn't.

Those parents who abuse their children should be sent to jail for their crimes, not just have their kids taken away.

When should the state interfere? When children are abused, not BEFORE they are abused.

Can't Take My Gorram Sky

SIGNYM

Saturday, July 29, 2006 3:12 PM

CTS- Have you found support groups online? It seems to me that you and your son both have immune systems running amok which would create a host of issues. I was lucky to find a support group and since Kathy's dx I've probably steered a dozen kids into the correct dx and created- no joke- a parental groundswell.I find that due to parent-pressure, doctors are much more likely to consider her dx and to prescribe the correct treatment.

Also, try this
www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&term=

I'm not completely comfortable with the current system. Several parents on our website have been charged with MBP (Munchuasen's by proxy)... charges that were resolved by disease progression BTW. Fortunately the system provides for courts and appeals and second (and third) opinions.

SARGE- As far as abuse is concerned... I know a woman who fostered and then adopted a lot of kids who were permanently disabled as a result of parental substance abuse. I'm now trying to help out a kid whose mom drinks, whose stepfather drugs, and who was sexually abused. My SO was physically abused and I grew up in an alcoholic family so I think I have some experience, and more importantly the stats back me up: Abuse has little to do with "parental powerlessness" :rolleyes!: and much to do with childhood abuse and substance abuse. It was YOUR statement that left me heartsick from its breathtaking selfishness.

I think that society needs to step in BEFORE the kid dies... you know, when the kid is actually suffering from torture or starvation or a painful untreated disease (a form of torture). One solution to your "issues" with the current system is to make sure that the "sentence" for poor parenting is "parenting classes" and "rehabilitation"- not manslaughter or murder charges. Then agitate that the county has enough resources to follow up.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

SIGNYM

Saturday, July 29, 2006 3:15 PM

Quote:
All children ARE at risk, either in the hands of their parents, or in the hands of the state.I think the risk is smaller in the hands of parents,

Dang it CTS- there is that word "all" again. It seems to plague you. Some kids are more at risk from their parents than others. These kind of global statements don't match the granularity of the issue, which is SPECIFIC children in SPECIFIC situations.

Quote:
When should the state interfere? When children are abused, not BEFORE they are abused

Begs the definition of abuse.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

CANTTAKESKY

Saturday, July 29, 2006 3:31 PM

Quote:
Originally posted by SignyM:
Begs the definition of abuse.

I think the current definitions are more or less adequate. They take into account severity of injury and intention of the parents. That is, there is a difference between a spanking and a beating, going to bed without supper and going a week without food. There is a difference between forgetting your child in the car, and leaving him in there on purpose. And so forth.

Like I said, what I object to is calling a parent abusive in ABSENCE of either injury or death.

Can't Take My Gorram Sky

SERGEANTX

Saturday, July 29, 2006 3:36 PM

Quote:
Originally posted by SignyM:
It was YOUR statement that left me heartsick from its breathtaking selfishness.

Then I'm sorry I said anything. I'm apparently not making my point clearly because I'm not arguing from a position of selfishness. But I'd rather drop it than cause you more pain.

SergeantX

"Dream a little dream or you can live a little dream. I'd rather live it, cause dreamers always chase but never get it." Aesop Rock

CANTTAKESKY

Saturday, July 29, 2006 3:48 PM

Quote:
Originally posted by SignyM:
Quote:
All children ARE at risk...
Dang it CTS- there is that word "all" again.

Let me clarify. All life is risk. Living is risky. There is risk in being born, in the hospital or elsewhere. There is risk in leaving your house, driving your car, going to your work, falling in love, getting married, and so forth. Perhaps I should have said, ALL PEOPLE are at risk. There are no guarantees in life.

Quote:
CTS- Have you found support groups online?

Yes, that was one of the first things I did. I know from 10 years with ME/CFIDS, that patients tend to know more about the disease than even their physicians.

The support group doesn't do me much good though. They are all using conventional treatments, and are convinced it is the ONLY thing to do. If I told them about my son, they'd probably call CPS on me faster than you would. So I lurk. They are a great source of information on the latest in treatment options.

One day, when my son is totally cured, I might share my story with them. I suspect though, that most of them would just dismiss me as an anomaly and or a mistaken diagnosis or a liar. I seriously doubt this alternative treatment would be taken seriously by anyone in authority and researched in the near future. So other parents who dare to want more for their kids will have to reinvent the wheel and go out on a limb like me. I would like to see that they have the freedom to do so as well.

Can't Take My Gorram Sky

SIGNYM

Saturday, July 29, 2006 3:49 PM

Quote:
I'm not arguing from a position of selfishness

The how do you explain that stunningly blind statement about "parental powerlessness"? I respect your insight and reasoning in most case but that was truly horrifically blind and inexplicable.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

FREMDFIRMA

Saturday, July 29, 2006 3:51 PM

Again, the decision of a fringe case (cause I fully agree with Sarge about most families being pretty decent) would be the job of a social worker - IF we had adequate funds, training and reasources behind em, and much better personnel screening, which we do not.

The check and balance to handle the grey area is present, but broken - and of course, any benefit of the doubt should be thrown in favor of the family.

Fix the system, and this problem goes away and is arguable only insofar as a case-by-case basis, and I side mostly with Sarge about trusting parents individually more than society generally, when it comes to it.

As far as any of mine own offspring, should there be any, I would do what I felt right, regardless of morality, belief, or the law - because as a parent it is one's most dire, most important responsibility to do what is best, to the best of their ability, not just to preserve life either... there's a certain (mostly ignored) responsibility to not create a "monster" and kick it out the front door to loose on society at the age of 18 (and I'm sure Sarge could totally elaborate on THAT problem, eh ?) because good parenting is in a way what keeps our society together.

Anyhow, if you get in the way of a parent who believes they are doing what it right, heart and soul, with no obvious harm to the child in question ? - you deserve what you get.

It's a judgement call, but it's always, ALWAYS a case by case thing, there's no one right answer, and ain't ever gonna be, so to discuss more than this one, singular case, is just whistling in the wind.

-Frem

CANTTAKESKY

Saturday, July 29, 2006 3:54 PM

Quote:
Originally posted by SergeantX:
Then I'm sorry I said anything.

Your points were clear to me. For what it's worth, I appreciate your posts.

Can't Take My Gorram Sky

SIGNYM

Saturday, July 29, 2006 3:58 PM

CTS- I assume that the normally prescibed drink is a synthetic mix of completely digested amino acids. So is your son healthy? Is his neurological and mental development on track? Because there are several deficiency effects that are irreversible, and that is one of them. But if that's OK no matter what his height/weight then I don't see any need to be paranoid. OTOH if he is missing major milestones in his development SINCE his dx then maybe you're not heading down the right path.

Again- specific kids, specific situations.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

CANTTAKESKY

Saturday, July 29, 2006 4:15 PM

Quote:
Originally posted by SignyM:
The how do you explain that stunningly blind statement about "parental powerlessness"?

I don't want to put words in Sarge's mouth. But the way I understood his post, he's talking about diffusion of responsibility.

It's a term used by psychologists to explain the tendency for people to do less and less when there are more and more others around.

Example, you see someone break down on the road. You know it is a deserted road and if you don't help, that person probably won't encounter anyone else. The responsibility is all on you, so you are very likely to help. Now let's imagine the road gets tons of traffic. Now the sense of responsibility is diffused amongst all the other passers-by. Research has shown that people are less likely to stop and help when they feel there are plenty of others who could.

I may be wrong, but the way I read Sergeant's post is that parental responsibility has been diffused, and parental authority with it. When you are indoctrinated that "it takes a village" to raise your children, it is easy to LET the village raise your children. It is easy to feel the village has more authority over your children than you do. They become more sloppy and careless. This applies probably more to neglect, and not so much to intentional injury.

If parental responsibility becomes undiffused, and returns to only the parent, parents might be more inclined to take it more seriously and do a better job. At least, that is the way I understood Sarge's post.

Can't Take My Gorram Sky

SIGNYM

Saturday, July 29, 2006 4:23 PM

Frem, CTS, Sarge- It's apparent that we will never agree. You're turning parenthood and parental love and individualism into a religion in which "belief" counts more than reality. So as long as the parent "believes" strongly enough and acts from "love"- like duct taping a child head to foot to teach "discipline" and then having the kid choke to death on hs own vomit- well, that's unavoidable because nobody is allowed to even CRITICIZE the parent or get involved before dire consequences. From so-called "rational" people this viewpoint is disheartening.

I'm just going to refer to the animal world and to "olden days" (which you seem to like)... In many species (birds, orcas, elephants, chimps, lions, meerkats, humans etc) child-raising duties and child socialization are often spread around. DIFFUSED. THAT'S THE NATURAL ORDER OF THINGS. Kids nurse on different mothers, food comes from many sources, and reassurance and teaching from many individuals. In the "olden days" of extended families, grandparents and in-laws butted in quite frequently. I recall my maternal grandma discussing my mom with my dad. She took us in once and a while to give "the folks" a break. My view is that 90% of people can raise 90% of the kids. Sometimes kids have special needs, or parents are particularly fucked up, and they need help.

Kids who are abused who turn out "alright" often have an uncle or aunt or teacher who witnessed and ackowledged the abuse and who helped the kids. Well, the old system, such as it was, is broken. We need a new system in its place. Rather than denying the need, why don't you agitate for reform?

EDITED TO ADD: Sarge, your statement was horrifying because it was a complete denial or reality. Abuse except in a RARE instances does NOT come from feelings of parental powerlessness. I imagine that when that DOES occur it's because the kids has a serious behavioral problem which is NOT the parent's OR the kid's fault which the parents are powerless to deal with- bipolar disorder, for example. In that case, the parents need more help than most.

At this point, I think I've said all I can say. Beating my head against this particular wall isn't going to do me any good.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

SERGEANTX

Saturday, July 29, 2006 4:25 PM

Quote:
Originally posted by SignyM:
Quote:
I'm not arguing from a position of selfishness
The how do you explain that stunningly blind statement about "parental powerlessness"? I respect your insight and reasoning in most case but that was truly horrifically blind and inexplicable.

I'm not sure what is so horrifying about it. It's an observation of something I've seen repeatedly: parents neglecting their jobs and rationalizing it with convenient excuses. My point was that policies that take away the rights of parents to make important decisions for their kids provide more of these kinds of excuses. Many parents have bought into the idea that 'it takes a village' and neglect their duties. Parents should have the responsibility, and the right, to do what they think is best for their kids, even when it is in conflict with 'the village'.

SergeantX

"Dream a little dream or you can live a little dream. I'd rather live it, cause dreamers always chase but never get it." Aesop Rock

CANTTAKESKY

Saturday, July 29, 2006 4:32 PM

Quote:
Originally posted by SignyM:
CTS- I assume that the normally prescibed drink is a synthetic mix of completely digested amino acids. So is your son healthy? Is his neurological and mental development on track?

Yes, amino acids only. Yes, of course I have taken irreversible neurological damage into account. Yes, my son is healthy--at least commensurate with his peers who are on formula. Many of these kids, even on formula, still have minor lingering or recurrent symptoms. That is not unusual.

He is a little behind for his age, but not so much that I think he isn't going to catch-up. Mostly he is little for his age--around 3rd percentile. For a while though, back when we first started the alternative therapy, he was so, so far behind in both weight and development. There was definitely a period before he improved where you and Rue would be 99% sure I am doing the wrong thing and should be stopped. And I wouldn't be sure enough to even want to fight back. But I am glad I got the extra leeway and time needed to tweak the therapy for it to kick in. Now my son has a good chance for a normal life.

Can't Take My Gorram Sky

SERGEANTX

Saturday, July 29, 2006 4:34 PM

Quote:
Originally posted by SignyM:
Frem, CTS, Sarge- It's apparent that we will never agree. ...

I suppose that's true Signym. I don't know what you're talking about with the 'religion' stuff, but we are definitely coming at this from distinctly different value sets. What I'm seeing is the same thing that we're always at odds about, even when we're on the same side of an argument, and that's the relevance of 'freedom'.

Lots of liberals give 'freedom' lip service but there's a key feature of the concept they don't get. (Most conservatives don't get it either btw.) ** Freedom means you don't get to tell other people what to do. ** Even if you think what you're telling them to do is for their own good, you don't have the option of forcing you're will (or the will of the majority) on them willy nilly. Like all things, freedom will have its limits, but if we are going to pretend to have freedom as a fundamental principle of our nation, we need to make sure those limits are narrow and carefully defined.

Now, most of us have been clear that abuse is not something parents should have the 'freedom' to do. But they have the right to parent however the please as long as that abuse hasn't been proven. What we are 'horrified' by is the idea that parenting will become a regulated activity, monitored and scrutinized by authorities who have no personal stake in the outcome.

SergeantX

"Dream a little dream or you can live a little dream. I'd rather live it, cause dreamers always chase but never get it." Aesop Rock

SIGNYM

Saturday, July 29, 2006 4:37 PM

Last point- I'm not a liberal. I'm- I hope- a realist. That is why I have a hard time agreeing with people who put ideology before reality.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

SIGNYM

Saturday, July 29, 2006 4:45 PM

REALLY last point: CTS- Without knowing the specifics- exactly WHAT you were doing, how far behind etc- I'm not sure I would have been 99% sure of anything. And where I think parents are really fucking up- and I've seen some doozies- I'm still supportive because (1) I'm not there. If I'm not in a position to help, I'm not going to criticize and (2) parents usually make serious mistakes with sick children because of fear and stress. No point adding to it from the sidelines.

And good for you.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

CANTTAKESKY

Saturday, July 29, 2006 4:51 PM

Quote:
Originally posted by SignyM:
Frem, CTS, Sarge- It's apparent that we will never agree.

Obviously.

Quote:
that's unavoidable because nobody is allowed to even CRITICIZE the parent or get involved before dire consequences.

No, no, criticize and get involved all you want. I received plenty of criticism for birthing at home. Neighbors and family and professionals should all make themselves heard when they see something they don't like. I think it is the responsibility of the village to speak up.

What I object to is the use of FORCE when the kid isn't even hurt, just because someone BELIEVES the kid is going to be hurt. Talk about counting "belief" more than reality. In reality, the kid is fine. The believer doesn't care, because he believes religiously in his predictions of harm.

And in gray areas, perhaps like the Cherrix case, I think the parent should be given the benefit of the doubt, cut a little slack. (Edited to add: Just read your last post. I am glad to hear that in reality, you do cut those parents some slack. On behalf of all parents like myself, thank you.)

Can't Take My Gorram Sky

SIGNYM

Saturday, July 29, 2006 5:02 PM

In reality, Cherrix' tumors are growing. In reality, Katie Wernecke is getting sicker and sicker. Except for these two specific cases, we agree.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

SERGEANTX

Saturday, July 29, 2006 8:38 PM

Quote:
Originally posted by SignyM:
EDITED TO ADD: Sarge, your statement was horrifying because it was a complete denial or reality. Abuse except in a RARE instances does NOT come from feelings of parental powerlessness. I imagine that when that DOES occur it's because the kids has a serious behavioral problem which is NOT the parent's OR the kid's fault which the parents are powerless to deal with- bipolar disorder, for example. In that case, the parents need more help than most....

Ahhh..ok, well that's where I wasn't clear then. I wasn't saying that abuse happens because of feelings of powerlessness. I was making the point that the kinds of intervention you're condoning create an atmosphere that makes parents feel powerless. And that often leards to poor parenting, for the other reasons I mentioned. No, abuse happens for all kinds of other reasons and I'm fine laws against abuse.

Regardless, I suspect we have considerably different definitions of abuse. Making decisions that aren't popular or might be considered foolhardy or dangerous by the majority doesn't constitute abuse from my point of view. Emotional and physical abuse are crimes and should be, but I don't think that warrants government second-guessing a family's decisions about healthcare, education, etc.

SergeantX

"Dream a little dream or you can live a little dream. I'd rather live it, cause dreamers always chase but never get it." Aesop Rock

FREMDFIRMA

Saturday, July 29, 2006 10:05 PM

You know, Sig - I've tried to be nice, I've tried to be rational, and reasonable.

But you'll have none of it.

I've said time and time again, it's a case-by-case basis, and stated my position, and agreed to politely disagree, only to be met with an alarming amount of fanatic hostility on your part.

I would NOT countenance the things you are accusing me of countenancing, I said it WAS NOT MY DECISION - and be damned if it's YOURS either.

Those decisions are not for you or me to make, Do you understand this?

And the folks who are supposed to make these decisions/judgement calls, at this point are not equipped, financed, trained or screened well enough to do it.

What part of this hasn't gotten across in saying it twice before ?

Oh, and this...

Quote:
Kids who are abused who turn out "alright" often have an uncle or aunt or teacher who witnessed and ackowledged the abuse and who helped the kids. Well, the old system, such as it was, is broken. We need a new system in its place. Rather than denying the need, why don't you agitate for reform?

Once again, and this'll be the third time, lemme point that I do this, and have been doing this, for over a decade.

I am fully behind Dr. Bruce M Perry, M.D. and his CITIVAS initatives.
http://www.childtrauma.org

FYI - you are speaking of what Doc Perry calls a 'helping witness', someone to listen and empathise even if powerless to actually help.

If yer so all-fired intense about it, I would suggest personal involvement, but in truth you have your own axe to grind, every bit as big as mine, and it shows, whether you admit it or not, and these things have no place in making decisions of that nature.

-Frem

SIGNYM

Saturday, July 29, 2006 11:06 PM

WHOA Frem! Hostility???

WHERE??? Where was I hostile??? Where?? Where??? Where???

EDITED TO ADD: I had to leave at that very moment. But the funny thing was, I was just mentally congratulating us- collectively- for discussing a topic that is obviously painful, about which we are all very passionate, w/o it degenerating into the usual invective. I thought we were all being honest- but not "brutally" so. It's very clear that we agree on many things but disagree on Cherrix, and the reasons why we diagree are tied to our fundamental views of this society- or perhaps ANY society.

I've examined my approach: How is the child doing? Follow the evidence. I've mentally tossed it against instances in which I would side with the parent (against mandated frontal lobotomy) instances in which I would side with the state (treating sepsis with prayer) and into the many "gray" areas of medicine and parental judgement and it seems to hold up.

Quote:
in truth you have your own axe to grind, every bit as big as mine, and it shows, whether you admit it or not, and these things have no place in making decisions of that nature.

What IS my axe? Tell me what it is and I'll give it serious thought.

--------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

RUE

Monday, July 31, 2006 2:11 AM

I've just caught up on this thread.

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?

SIGNYM

Monday, July 31, 2006 5:57 AM

I looked up Dr Bruce Perry's website. Went to the home page. On the left side of the page... "about CTA", "CTA Services", "CTA Materials". Hmmm... Okay, cool. Figured I'd check out the materials for some right-away info. The only online available topic was

NEGLECT

QUOTE
Altered brain development following global neglect in early childhood...Society For Neuroscience: Proceedings from Annual Meeting, New Orleans, 1997)

Bonding and Attachment in Maltreated Children: Consequences of Emotional Neglect in Childhood .... ChildTrauma Academy Press 2001).

Neglect in Childhood. This brief section in an encyclopedia is a good introduction to the area of neglect for caregivers and professionals working with children.... Child Neglect in: Encyclopedia of Crime and Punishment Vol 1.(David Levinson, Ed.) Sage Publications, Thousand Oaks pp 192-196, 2002)

The Neuroarcheology of Childhood Maltreatment: the neurodevelopmental costs of adverse childhood events...The Cost of Maltreatment: Who Pays? We All Do. 2001)
UNQUOTE

The first link worked, the second didn't, the third said:

QUOTE
Child neglect is the most common form of child maltreatment (a broad category of behavior that also includes sexual, physical and emotional abuse). The National Child Abuse and Neglect Data System (NCANDS), a review of abuse and neglect data from all states, reported over 1,000,000 substantiated cases of abuse in its last review (annual year 1994). Fifty two percent of these cases were from neglect. The majority of the 2000 or more documented abuse-related deaths each year are due to neglect. These statistics are likely an underestimate of the actual occurrence of neglect. Neglect is the least studied and most poorly characterized form of child maltreatment. This is due to multiple factors including the difficulty in defining and documenting neglect in children.

Neglect can occur in several forms. A broad definition of neglect is any failure to provide for the basic needs of the child. In practice, neglect is defined somewhat differently depending upon local statutory definitions. Common statutory categories include: (1) Medical neglect- such as failure to provide visits to the doctor for routine checkups, not getting medical attention for injuries, failure to ensure compliance with necessary medical treatments such as providing insulin for a diabetic child. (2) Physical neglect - failure to provide food, water, or adequate sanitation; (3) Emotional neglect - failing to provide appropriate attention, nurturing, and support for child; (4) Neglectful supervision - failure to provide appropriate and responsible care to the child; and/or (5) Abandonment - failure to assume adequate responsibility for the child, such as leaving the child with no plans for return.
UNQUOTE

So Dr. Perry apparently considers neglect (or non-action) as seriously as active abuse, and medical neglect is part of the whole picture.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

FREMDFIRMA

Monday, July 31, 2006 1:23 PM

Hmm, maybe I am seeing it wrong, as text communication only carries so far, but Siggy, it really does seem like you have a pretty hefty axe to grind against non-conventional medical alternatives - it's come across to me that way in every post.

As for Doc Perry's work, try some of this linkage.
http://home.earthlink.net/~hopefull/TC_brucedperry.htm
http://teacher.scholastic.com/professional/bruceperry/index.htm

Between Andrew H Vachss and Doc Perry, I believe there is hope for us yet, and that is something I did not always believe, mind you.

Both of them see big trouble in our "first line of defense", the safety net of qualified social workers trained and educated to make judgement calls of this nature, and I tend to agree with that - but politicians want results while they are in office, not 20-25 years down the road, and thus getting any investment in something that doesn't 'pay off' right away is a right pain in the arse.

Until the system is fixed enough to deliver a reliable, honest, informed assessment, I'll have to side with the parents, even in cases where I would prefer otherwise.

-Frem

SIGNYM

Monday, July 31, 2006 4:01 PM

The funny thing is we've done a lot of alternative medicine at home (and "investigational therapy" in conjunction with doctors) including brushing therapy, probiotics and bovine colostrum (NZ-sourced to avoid mad cow). So I really have nothing against it. In fact, I know of a kid who fell down the stairs and suffered major brain damage (the fall seemed to have set off a cascade of immune responses and caused brain wasting.) The parents tried various conventional medications which didn't work then went to a Chinese herbalist who gave the boy some concoction that stopped his seizures cold. My feeling was - HEY, GET SOME OF THAT STUFF TO OTHER KIDS! If it works it needs to be studied!

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

----------
Define your metric of success. It must be obvious or measurable, and if it requires a doctor's participation (like routine EEGs or bloodwork) make sure you have the path cleared.

Go into your new therapy whole-hog. If it's a medication, make sure you've gone as high as you can go without intolerable side effects. If it's a diet, don't cheat. If it's therapy, do it as often as recommended. You really DON'T want to be asking yourself several therapies down the line... Would it have worked if we had only....?

Give it a reasonable time to succeed. For example, with anticonvulsants that's usually 3-4 weeks, with diet 2-3 months.

Keep an close eye on your child. Virtually all drugs and many herbs can cause serious allergic reaction or suppress one or more major organs: liver, bone marrow, kidney etc. Decide in advance that you WILL push the panic button if certain side effects occur, and have a back-out plan. In our daughter's case, that meant having an emergency anticonvulsant in the wings (Diastat).

If you have to ask yourself if the new therapy is working... IT'S NOT WORKING.

KNOW WHAT YOU"RE GOING TO DO WITH THE RESULTS. You should already have a "next step" planned.
----------------

We found that following this plan allowed us to evaluate all sorts of therapies, from conventional to investigational to alternative.

As far as social workers are concerned, it's all about money. We SAY that we love children but the lowest-paid workers are day-care workers and social workers, and teachers are not that far behind. We live in a hypocritical society that talks about morality but in fact worships money. Our collective direction is frightening.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

CITIZEN

Monday, July 31, 2006 5:59 PM

Quote:
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?

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.

More insane ramblings by the people who brought you beeeer milkshakes!
No one can see their reflection in running water. It is only in still water that we can see.

CALIFORNIAKAYLEE

Monday, July 31, 2006 8:20 PM

This topic has moved on quite a bit since I last posted, but I just wanted to share a grrr moment with all of you, who will, I think, understand my frustration with the medical establishment.

I'm going on two and a half years with a chronic pain condition that my doctors and I are 99% certain is autoimmune. For the third or forth time now, the doctors are saying that they don't know what else to test for. I just went to http://www.aarda.org/ and found a list of 137 different autoimmune diseases, two of which I have already been diagnosed with, and nine of which we've ruled out in the past two and a half years. 126 to go. "Out of things to test" my ass.

~CK

You can't take the sky from me...

CANTTAKESKY

Monday, July 31, 2006 8:28 PM

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

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

Yes, I agree on the "follow the evidence--how is the child doing?" benchmark. Except I would add "in comparison to how he would be doing on a different therapy?"

In the case of Cherrix, a growing tumor sounds bad. But I question whether a growing tumor is necessarily worse than getting chemo. First, he had chemo before, and it didn't work; it came back. Even if the same happened again, he would simply be buying a little more time with a lot of suffering. Maybe living a little less without that level of suffering is worth it. We don't know that the nutritional therapy won't ease the natural pain of dying with cancer, even if it doesn't cure it. I just think he and his folks should be able to make these fine judgments. If I were Cherrix's parent, I probably wouldn't choose either chemo or nutritional therapy. There are other options available, as seen below.

Here are some stories of people who survived non-hodgkins without chemo. http://www.polymvasurvivors.com/testimonial_nonlymphoma.html
16 year old survives Hodgkins without chemo
http://www.billybest.net/modules.php?name=News&file=article&sid=14

Not to belabor this discussion, but for those interested in reading more, here is a congressional testimony from parents who lost their son to cancer during chemo. Scroll down to when they start to review the literature. There is significant evidence that chemo would not have helped their child, but their oncologists either were ignorant of or ignored this literature.
http://www.ouralexander.org/chemo.htm

All that to say chemo is not necessarily as life-saving as oncologists make it out to be. It is not as clear cut an option as they say. If there is room for argument, there should be room for parents to choose without being threatened. I know the Horwins wish they had that choice.

Can't Take My Gorram Sky

CHRISISALL

Monday, July 31, 2006 8:40 PM

Quote:
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.

Most unremarkable doctors will go with the protocalls.

Chrisisall

RUE

Tuesday, August 1, 2006 5:11 PM

CaliforniaKaylee,

My first words of advice for anyone dealing with unusual or chronic illness is - google is you friend !

I'm curious though - b/c of my background, I find the heavy-hitting academic and government sites helpful. But in order to get the most from these sites, you have to (pretty much) learn a new language - medicalese - with a good sprinkling of pharmacology, biochemistry, anatomy, statistics etc.

What is your academic background and how helpful do you find the internet?

RUE

Tuesday, August 1, 2006 5:59 PM

Frem,

I'm glad to see you're talking again. I was taken aback by your accusation of hostility against SignyM. It came out of the blue, sparked by nothing I could see.

Rue

-----------------------------------------

PS Being my usual nosy self, especially about all things medical, I've been in contact with SignyM off line.

Kathy (their daughter) has had almost 2 decades suffering from a 1 in 50 million condition - a 'syndrome' - which means no known etiology, no treatment, and a poor prognosis. What I get is that they've gone to the limits of guinea-pig medicine, since regular medicine had literally nothing to offer - not even a first therapy to attempt. SignyM has NOTHING AGAINST ALTERNATIVES ! I was re-reading the posts - they got the Dx from an on-line support group, were the FIRST in Southern California to try the ketogenic diet for seizure control; high-dose steroids, IVIg, Cell-cept and other immunosuppressants; every combination anti-convulsant medications (AEDs - anti-epileptic drugs); physical and occupational therapy. You name it, they've been there - and back.

Since my niece is also in a medically precarious situation, I can understand how strongly one might want to reserve the right to do anything - ANYTHING - for a child.

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.

But in Cherrix's case, medicine does have at least a potential answer. From my work in hospitals, I can say I have never seen a 'good' death. Perhaps the family really needed a more informative oncologist. The people who've 'seen it all' too many times before have a lot to teach the family going through it for the first time. And anyone painting a rosy picture of unapproved cancer treatment and minimizing the risks of such treatment (agonizing death from cancer) is not acting with the best interests of the family in mind. IMHO

---------------------------------------------------------------------

Anyway, I don't see where the axe is. Except that one must always look to the condition of the child.

RUE

Tuesday, August 1, 2006 6:12 PM

CTS,

Your post is interesting. But I do have a quibble. I found this

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

to be, well, condescending. Being there yourself, surely you can credit the experience of another parent who has over a decade of seeking and doing alternative treatments for their child. But perhaps you didn't mean it that way and I'm out if line here.

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.

Rue

FREMDFIRMA

Tuesday, August 1, 2006 6:57 PM

Rue, maybe they weren't meant that way, go back and read some of the things I was being accused of countenancing.. I took that as hostility.

Text only carries so far, and from my angle, it did very much look like direct hostility, which, if it wasn't, sure, I apologise.

I also think that a lot of the back and forth between me and Siggy was because we were aiming at completely different tangents and neither one of us was realizing that wholly different points were being argued by the other.

My issue (repeated often in the last few posts) is a completely different aspect that bears directly on this, outside of the scope of most of the debate here.

-Frem

SIGNYM

Tuesday, August 1, 2006 7:11 PM

Well, I would add a couple more things to my list. Stuff that we NOW do as a matter of course but sometimes forget to credit

Time permitting (assuming that you're not dealing with an emergent or rapidly deteriorting situation)... ONLY CHANGE ONE THING AT A TIME. It seems stupid not to, but we have, and then spent the next several weeks or months trying to disentangle what caused what.

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.

Quote:
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.

I have felt at times that we might be at risk for being charged with MBP (Munchausen's by proxy). That is a syndrome in which the parent causes or fakes symptoms in their child in order to get attention and sympathy from medical personnel. As I mentioned before, a couple of parents on my favorite bulletin board WERE charged... charges which were dropped when their children took serious nose-dives into more overt crises.

Two different views of MBP
www.happinessonline.org/LoveAndHelpChildren/p5.htm
www.expertclick.com/NewsReleaseWire/default.cfm?Action=ReleaseDetail&I
D=4597
---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

RUE

Tuesday, August 1, 2006 7:15 PM

Hi Frem - THANKS ! for the reply. I'll need to go back over the posts to try and find out where the signals got crossed.

Have a good one
Rue

RUE

Tuesday, August 1, 2006 7:18 PM

SignyM,

Yours sound like the words of experience. It seems like you were able to smooth the path of a few people just entering the territory.

So to you too ! Peace

Rue

RUE

Tuesday, August 1, 2006 7:25 PM

HEY CTS !

I'm guessing you're off-line. So for when you get back . That's for you and your precious little ones.
Have a GREAT day!

Rue

CALIFORNIAKAYLEE

Tuesday, August 1, 2006 7:43 PM

Hey Rue, thanks for the reply.

My educational background is in computers, statistics, and sociology, so I'm definitely comfortable looking things up online (more so than I would be trying to look it up in a physical library). I've been looking up information on what's going on with me since day one, and previous to that I had been diagnosed with another autoimmune disease (Hashimoto's thyroiditis - hypothyroid), and had looked around online with regards to that.

I'm getting better at dealing with the medical jargon, but my goal at this point is to go through all the autoimmune diseases I can find info on, and read up on the symptoms. Anything that seems like it could match my symptoms gets highlighted in bold on that list of 137 autoimmune diseases, and anything that does not match my symptoms at all (ie, a lot of the autoimmune diseases that deal with the skin or with the eyes) gets crossed out. My plan is to then take that list of highlighted diseases to my doctors and get the necessary testing done, and hope that something will pop.

They keep telling me that there's nothing else they can think to test, so I have to take specific tests to them and ask them to do the tests. My only other option is to continue to live with the pain, and wait for a new symptom to arise -- meanwhile, my immune system is eating away at something, and the longer it takes to identify, the more damage it will do.

The most recent thing I requested to be tested for was Ankylosing Spondylitis, which has the closest set of symptoms to my own (much, much closer than the symptoms and clinical signs for Fibromyalgia and Chronic Fatigue Syndrome, both of which doctors keep trying to shove on me to shut me up). Diagnosing Ankylosing Spondylitis involves evidence on a spinal xray, and mine came back clean, but we are going to check again in six months.

One of the things that complicates the situation is that my white blood cell count and sedimentation rate have been normal through all of this, which makes some none-too-bright doctors say that it can't be autoimmune. However, blood taken during the same sitting showed such high levels of thyroid antibodies that the lab reported it as simply higher than their scale. I have indisputable proof of one autoimmune attack (against my thyroid) and yet no elevated white count or sed rate, so why is it so inconceivable to some doctors that I could have another autoimmune attack going on at the same time? Especially since so many other aspects of this unnamed disease point to autoimmune involvement?

Bah, anyhow, that's my fight right now. I'm not willing to stop looking, and I'm not willing to accept a bogus diagnosis. Fortunately or unfortunately, depending on how you look at it, the disease has not been serious enough to require hospitalization. However, I am on five prescriptions, walk with a cane at times (at the age of 25!), cannot work full time outside my home (thankfully, I have a fulfilling career that allows me to work from home as a consultant), cannot do any exercising besides swimming, and in general move through life like an 80 year old woman. My primary care doctor has said that if this disease was more serious, more life-threatening, he'd send me to a Mayo Clinic to get diagnosed. But since the disease has changed my life without threatening my life, I'm in this horrible state of waiting -- waiting for a test to come up positive, waiting for a new symptom that will help us better define the disease, waiting for a diagnosis so that we can start treating this thing.

~CK

You can't take the sky from me...

RUE

Tuesday, August 1, 2006 8:24 PM

CK -

If you'd like medical jargon translation either on-line or off, just ask.

RUE

Tuesday, August 1, 2006 9:07 PM

Citizen,

VERY interesting. You come up with the most interesting bits like why stars are cold on the inside, hot on the outside. Do you have (a) reference(s) ? Huh? Huh? Huh? Pretty please

Merci beaucoup.

Quote:
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.

CITIZEN

Tuesday, August 1, 2006 9:49 PM

As far as animals shareing child rearing responcibillities there's numerous sources, I'll try and dig something up.

The Homosexual thing I'm not sure where I heard it, I think it was basically a bit of speculation, but it makes sense. Homosexuallity has been demonstrated in the animal kingdom, but to my knowledge only within social animals (not sure about this, it could be only seen in social animals because only social animals have been studied for all I know ).

I'll try and find something but I don't have any actual sources to hand that I can post.

More insane ramblings by the people who brought you beeeer milkshakes!
No one can see their reflection in running water. It is only in still water that we can see.

RUE

Tuesday, August 1, 2006 9:54 PM

If you could find something, that would be soooo cool.

Yeah, I was thinking about that. There are homosexual (male) lions, but are there gay bears? Tigers?

I feel pretty, and witty and gaayyy

CITIZEN

Tuesday, August 1, 2006 10:02 PM

There was a Bi Polar Bear at Big Gay Al's Big Gay Animal Sanctuary, does that count?

More insane ramblings by the people who brought you beeeer milkshakes!
No one can see their reflection in running water. It is only in still water that we can see.

RUE

Tuesday, August 1, 2006 10:29 PM

Oh geeezz. That's so bad it's good.

RUE

Tuesday, August 1, 2006 10:30 PM

But now I gotta go off line for a couple of days.

Back to the grind ....

.... Respondent petitioned for review of the Board’s decision in the United States Court of Appeals for the Sixth Circuit, and the Board cross-petitioned. The Sixth Circuit granted respondent’s petition as it applied to the nurses and refused to enforce the bargaining order. It held that the Board had erred in placing the burden of proving supervisory status on respondent rather than on its General Counsel, and it rejected the Board’s interpretation of “independent judgment,” explaining that the Board had erred by classifying “the practice of a nurse supervising a nurse’s aide in administering patient care” as “ ‘routine’ [simply] because the nurses have the ability to direct patient care by virtue of their training and expertise, not because of their connection with ‘management.’ ” 193 F.3d 444, 453 (1999). We granted the Board’s petition for a writ of certiorari. 531 U.S. 1304 (2000). .......

FREMDFIRMA

Wednesday, August 2, 2006 12:52 AM

Quote:
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.

I second this, wholeheartedly.

Being a suspicious, semi-paranoid cuss when it comes to dealing with authoritarian systems, I documented every time someone so much as sneezed, copied everything, photocopied anything I could get my hands on hook or by crook (which didn't help so very much when the red tape blockade kept demanding ORIGINAL documents and then "accidently" losing them... four times in a row.) and in the end, the hearing was an open and shut case because in the documentation war, I brought the USS Iowa, and they brought a sixgun.

That stupid little bag I kept it all in, helped save my ass, in the end.

Document EVERY FEKKIN THING.

-Frem

PS - Medicalese is something I learned the hard way from diggin through Doc Perry's work, so if you need to resort to it to explain a point, go on ahead.

CANTTAKESKY

Wednesday, August 2, 2006 1:00 AM

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

It wasn't meant to be. I really was impressed. My favorite physician or homeopath could have said it, and I still would be impressed. It's a *good* list!

So Sig, dahlin', it was a compliment!

Quote:
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.

You know, I wondered the same thing. After all, isn't that the reasoning behind allergy shots, gradual conditioning? Their reasoning (I think) is that the gut is so badly damaged that you have to withdraw all foods for it to heal. Then after it's healed, you can reintroduce foods, one a month and see if the gut reacts to it. If it reacts, you withdraw it. Repeated exposure only damages the gut more and may make it MORE sensitive rather than less. The notion of suffering through some symptoms in order to give it time to be conditioned is not tolerated--maybe because the ones suffering are mostly children. I don't know.

So the amino acid formula is not prescribed as a food supplement, but a food substitute. If anything, the few foods that pass the "food trials" supplement the formula.

Hugs,

Can't Take My Gorram Sky

CANTTAKESKY

Wednesday, August 2, 2006 1:05 AM

Quote:
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,

What the frak do you do for a living?

Can't Take My Gorram Sky

RUE

Wednesday, August 2, 2006 1:18 AM

Just on my way out the door - it's really not that special. That gobbledygook is something I was reading for a union meeting tomorrow as I am one of the stewards.
It helps to get background on the issues. In this case, who is allowed to join a union, and who, as a supervisor, is exempt. DAMN ! but law is all twisty inside. I have to make myself read it. Give me a nice simple bio text anyday .... :wistful:

SIGNYM

Wednesday, August 2, 2006 1:39 PM

CaliforniaKaylee- Have you ruled out celiac disease? There is a fairly strong assocation between Hashimoto's thyroiditis and celiac

Quote:
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

www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=
Retrieve&dopt=AbstractPlus&list_uids=10461017&query_hl=2&itool=pubmed_docsum
(I split up the URL so it wouldn't disturb page width)
This reference was from a search of PubMed www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed for the terms Hashimoto's celiac

The best test for celiac IMHO is to remove all guten from the diet. It's tough because so many products (even soy sauce) have wheat, oats, rye, or barley in them. But testing for antigliadin antiendomysium, and antitransglutaminase doesn't always reveal celiac.

I only mention this because Rue pointed me in the direction of celiac... I developed resistant anemia- and when I removed gluten from my diet not only did my anemia go away, so did a whole host of aches and pains (and when I put gluten back in my diet my anemia came back. I stubbornly ran this experiment a couple of times.

)

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

RUE

Wednesday, August 2, 2006 3:22 PM

Also, note that brown coloring in things like colas and gravies etc is made from burnt wheat flour. You will not find that listed in the ingredients.

SignyM - cool. That certainly was something I didn't know. I hope it helps CK.

RUE

Wednesday, August 2, 2006 3:27 PM

Anyway, as to what I do for my money: I'm a chemist for a government atmospheric agency. Before that, I worked in many different capacities for many different hospitals. Union steward is an unpaid task and just another attempt to make the world a better place.

RUE

Wednesday, August 2, 2006 4:23 PM

Just can't leave well enough alone, I guess. Now that the dust has settled .... I found this on one of my favorite websites. It doesn't address the larger questions about the 'medical system, or the right to refuse treatment, or the rights if the state. It does go into what might be the thought process in making medical decisions. Here are some excerpts:

The findings may help individuals who face tough health choices, and decision-makers who make choices for larger groups.

Study participants were randomly divided into four groups. People in one group 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 treatment 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.

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.

Just as the participants in the new study, 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.

I posted the whole thing b/c I don’t know how long the link will be active.

Quote:
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

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CANTTAKESKY

Wednesday, August 2, 2006 7:37 PM

Thanks for very much for sharing the article Rue. It is fascinating.

This is a good example of how the same data can be interpreted differently by different people. Assuming the study was done correctly and most of the obvious confounders were controlled, what I got from the study is people are more likely to accept risks on behalf of other people than they are for themselves. That as you move further from the individual point of view, you are more likely to force others to accept risks that you would not accept for yourself.

Of course, the researchers conclude that is a good thing, to be able to see the benefits more "clearly," as being worth the risk. I see it as a dangerous thing.

Can't Take My Gorram Sky

SIGNYM

Wednesday, August 2, 2006 8:20 PM

You could also intepret it as being that people are inherently "lazy" and will opt for "no action" if they are the only ones to consider, but will opt for "action" if they have to consider more than one.

Three cases to make my point, all very benign:

Single people are notorious for eating poorly. They will simply not "bother" to make a proper meal only for themselves. Put another person in the picture, and the nutrition outlook becomes more proactive.

Solo exercisers often quit. People who exercise with a partner are far MORE likely to continue.

People quit smoking or lose weight successfully more often in groups than alone.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

CALIFORNIAKAYLEE

Wednesday, August 2, 2006 10:23 PM

Hey all,

I'm heading out of town tomorrow, and running around like crazy getting ready today. I've read up a bit on celiac, but it's been awhile. Taking gluten out of my diet wouldn't be a problem -- I'm pretty careful about what I eat as it is, since I'm trying to keep kosher, and I stay completely away from all forms of soy (research has shown that it negatively impacts your thyroid, especially when the thyroid is already not functioning fully). I may give that a shot, once I'm back in town.

One of the few clues we have about what this undiagnosed thing is, is that it is directly set off by an infection. Any time I run a fever, I will have a flare up of pain, lasting anywhere from three to six months. I'll get over the original cold or flu, and won't be running a fever anymore, but my joints, primarily my knees and hips, but other joints as well, will hurt for months and months afterwards. My feet will be so cold that I have to wear three pairs of socks inside, with the temperature between 70 and 80 degrees; that lasts for about two months.

So there is definitely some strong tie to my immune system. I'm generally more well during the summer, because there are fewer colds going around, but each flare seems to be taking longer to finally peeter out. Eventually the pain will go away, and I'll be fine for awhile -- at least until I catch another cold. This is why my doctors won't give me the flu shot! They have no idea how my immune system would respond.

I'll look into celiac when I get back into town, but I've been keeping an eye out specifically for diseases that have a relapsing remitting pattern. If my diet isn't changing at all, could celiac be going into remission once I've been infection-free for a few months? I'll look that up when I get back.

Rue and Signym, thanks so much for your private messages to me! I'll drop you both a note when I get back into town next week.

~CK

You can't take the sky from me...

RUE

Wednesday, August 2, 2006 10:28 PM

What I got out of it is that people will look to more objective measures (statistical) when deciding for other people. Perhaps, as SignyM suggests, it's b/c when people are deciding for themselves, they factor in the 'laziness' index.

CTS - the problem is there is also a risk from doing nothing. In this study, doing nothing is actually riskier (statistically).

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.

CANTTAKESKY

Wednesday, August 2, 2006 10:58 PM

Quote:
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.

There you go. Same set of data, 3 or 4 different interpretations. From my point of view, they all sound equally valid.

Quote:
CTS - the problem is there is also a risk from doing nothing. In this study, doing nothing is actually riskier (statistically).
Only if the person believes those statistics that the intervention is effective. For example, many people who choose not to vaccinate or choose not to use chemo do not believe the interventions are effective at all. I don't know how the study controlled for how these subjects interpreted the statistics. Could be they didn't believe them.

Quote:
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.

According to this study, the closest to that person would be the parents. Speaking for myself, I wouldn't give my kid anything that I wouldn't take myself.

Can't Take My Gorram Sky

RUE

Wednesday, August 2, 2006 11:27 PM

Oh, I was just going with how they described the study: that in those hypothetical decisions, the risk of doing nothing was higher than the risk of doing something. That's all.

In general, people interpret risk illogically. Daniel Kahneman won the Nobel Prize in economics for how people judge risk and benefit, and it is not through a 'rational' process.

RUE

Wednesday, August 16, 2006 1:18 AM

Quote:
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.

...............................

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.

...............................

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.

This is a good example of why I don't trust drug co. studies submitted to the FDA. Unfortunately, that makes the public into guinea pigs after the FDA threshold is cleared. 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.

CANTTAKESKY

Wednesday, August 16, 2006 8:40 PM

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

Yep.

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

Yep.

Quote:
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.

That's where I part ways. Know why? Cause MD's (people designing clinical research and gathering clinical data) tend not to know how--they are trained to be clinicians, not researchers. Their studies are full of confounders and premature conclusions. Moreover, I would argue that the entire educational process of an MD has been corrupted by the interests of the pharmaceutical industry. For example, clinical research routinely uses the concept of "relative risk," a bogus statistic invented by the pharm industry. RR literally allows people (say, the pharm co) to get whatever result they want. Yet MD's are taught that RR's are perfectly valid statistics for evaluating data. So all their clinical studies use RR's, and very few of them have any validity.

There have been studies authored by MD's that were well-controlled and cautious. But in my experience, those are the exceptions, not the rule. Sorry, crappy medical research is a pet peeve of mine.

Can't Take My Gorram Sky

RUE

Thursday, August 17, 2006 8:46 PM

CTS,

I think we part ways in a slightly different spot.

Your answer is to demand rigorous proof of every bit of information from 'the system'; which has at least a fig leaf's worth of science on it. OTOH, 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. The system is always guilty, while, often despite all appearances, the mavericks are always right. What I see missing is basic fairness.

SIGNYM

Thursday, August 17, 2006 9:23 PM

Me too. At some point, anti-establishmentarianism becomes a warping compulsion, just as surely as pro-authoritarianism.

See my signature.

---------------------------------
Reality sucks. Especially when it contradicts our cherished ideas.

CANTTAKESKY

Sunday, August 20, 2006 3:36 PM

Quote:
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.

Prove it? I credit EVERY piece of go-se? EVERY topic? Every is a big word.

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

Always is also a big word.

It's easy to make accusations Rue. These are personal accusations of an absence of intellectual integrity. If you don't have proof, you're just flaming me.

Can't Take My Gorram Sky

JAYNEZTOWN

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