Orac is the nom de blog of a humble pseudonymous surgeon/scientist with an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his miscellaneous verbal meanderings, but just barely small enough to admit to himself that few will. (Continued 
Over the couple of days or so, a minor flurry of comments have hit the ol' blog. I hate to let commenters dictate the content of my blog, but it's strictly a coincidence that this happens to be a post I had been planning sometime this week anyway and it comes around the same time as the minor altie comment deluge hit the blog. Or maybe it's not such a coincidence, coming as it does in the wake of a court hearing relevant to the case of Starchild Abraham Cherrix. Recent commenters have castigated me, claiming that the Hoxsey treatment is not quackery; asserting that cancer is "not due to a chemo deficiency"; telling me that I should have a "more open mind" while at the same time calling me and other skeptics "morons"; assuring me (and us other nasty skeptics) he would pray for us spiritual healing, while ranting about the perceived evils of conventional medicine; and making wild and unsubstantiated claims that untreated cancer patients live four times longer than treated patients based on a dubious "study" from 37 years ago, that, as far as I'm able to tell, has never been published in the peer reviewed literature.
I tell ya, it's been a while since I have been subjected to so much altie vitriol.
All of this makes me wonder if (1) whether the posts that I had written before had somehow been distributed to an altie mailing list somewhere (certainly, I couldn't find any referring links that would explain the sudden influx of comments on posts that were between two to six weeks old) or (2) lots of people were doing the same thing as I in anticipation of this case and had seen my previous posts popping up in their Google searches, which is certainly possible. Either way, it's led to an influx of died-in-the-wool alties castigating me. What provoked this lurry of comments was my recent posts about Starchild Abraham Cherrix, a now 16-year-old Virginian boy diagnosed last year with lymphoma and who refused further chemotherapy when he relapsed, opting instead for the quackery known as the Hoxsey treatment at an altie clinic in Tijuana, a therapy that involves taking a bunch of herbal concoctions with no known efficacy against cancer. Recently, a court-ordered imaging study showed that his tumor had grown, but Abraham dismissed it, saying that his healer had told him that his tumors would grow a bit before they started to shrink, leading to my post entitled Magical Thinking versus Lymphoma. (It never ceases to amaze me how alties will so easily make excuses for the failure of their preferred treatment that they would never accept if made for a conventional medical therapy.) Whatever the cause, however, coincidence or my posts being circulated on an e-mail list, I will stick to the plan, since I have found a couple of news articles about Abraham. Here's an excerpt from the first one:
(AP) Three months of chemotherapy last year made Starchild Abraham Cherrix nauseated and so weak that at times the tall, skinny teenager had to be carried by his father because he couldn't walk.So when he learned in February that the cancer was active once again, he balked when doctors recommended another round of the drugs, as well as radiation.
"I think it would kill me the second time," said Abraham, who instead turned to a sugar-free organic diet, herbs and visits to a clinic in Mexico to treat his Hodgkin's disease, a cancer of the lymph nodes.
On Monday, Abraham and his family will be in juvenile court for a closed hearing to determine whether the 16-year-old can make his own medical decisions -- and whether he can keep living with his parents and four siblings on Chincoteague, an island off Virginia's Eastern Shore.
A social worker had asked a judge to require Abraham to continue conventional treatment, and in May the judge issued a temporary order finding Jay and Rose Cherrix neglectful for supporting their son's choice to pursue alternatives.
Judge Jesse E. Demps also ordered the parents to share custody of Abraham with the Accomack County Department of Social Services; they face losing custody completely.
And:
Abraham and his parents researched alternative medicine and heard about the Hoxsey treatment of liquid herbal supplements and a diet heavy on fresh fruits and vegetables. The treatment used to be available in the United States but proponents moved their clinic from Texas to Mexico in the early 1960s after repeated clashes with federal authorities.Rose Cherrix said she supports her son's decision to follow this approach because he is mature and thoughtful.
Hmmm. I wonder if Rose would support her son's decision so strongly if he wanted to have sex or wanted to do drugs--as long as he came to his decision in a "mature and thoughtful" manner, of course. Somehow, I doubt it. Even if Abraham is indeed "thoughtful," he's apparently not thoughtful enough (or he's thoughtful in a non-analytical way). For one thing, he's based his decision on a lie, a lie told to him when the doctors at the Tijuana clinic told him that the Hoxsey treatment cured 80% of patients with cancer treated. If that were really the case, then Abraham's decision would not be unreasonable. Sadly, however, there is no evidence whatsoever to think that the Hoxsey treatment is that effective or that it is even effective at all at halting the progress of lymphoma. Instead, he and his family have bought into the magical thinking:
Cherrix now administers herbs to his son four times a day, carefully decanting into a small measuring glass a dark elixir with ingredients such as licorice and red clover. Father and son also pray together before Abraham drinks the concoction.
The court hearing itself apparently finished up on Tuesday:
RICHMOND, Va. (AP) -- A teen cancer patient fighting to use alternative medical treatment told a juvenile court judge in a two-day, closed hearing what it's like to go through chemotherapy and that he didn't want to relive it."I told him my story ... so he could understand where I was coming from and live through me," Starchild Abraham Cherrix, 16, said.
In all, the judge heard 11 hours of testimony before the hearing concluded late Tuesday. At issue is if the teen can make his own medical decisions and whether he can keep living with his parents and four siblings on Chincoteague, an island off Virginia's Eastern Shore.
The judge is expected to issue a written decision by July 18.
The teen, who goes by Abraham, has Hodgkin's disease, a cancer of the lymph nodes.
Three months of chemotherapy last year made him extremely weak. So when he learned in February that his cancer was active again, he turned - against doctors' advice - to a sugar-free organic diet, herbs and visits to a clinic in Mexico.
A social worker asked a judge to require the teen to continue conventional treatment.
In May, the judge issued a temporary order finding Jay and Rose Cherrix neglectful for supporting their son's choice to pursue alternatives. Judge Jesse E. Demps also ordered the parents to share custody of Abraham with the Accomack County Department of Social Services.
Abraham's parents face losing custody completely.
"What it boils down to is does the American family have the right to decide on the health of their child," Jay Cherrix said, "or is the government allowed to come in and determine that themselves and threaten one way or the other to split our family up?"
Abraham and his parents think a doctor reported them to Social Services for not continuing with chemotherapy. The judge initially forbid the family to leave Virginia, then let Abraham return to the Mexican clinic last month after the teen had X-rays to assess his disease.
The X-rays showed the chest tumor had grown mildly, Abraham said.
I think that everyone knows my position on the specific decision that the Cherrixes are making; so I won't belabor it other than a brief summary. It's magical thinking that has led to a very foolish one that will preclude Abraham's surviving his cancer. The Hoxsey treatment is quackery and will not cure Abraham, for reasons that I've enumerated in detail. Conventional therapy (high dose chemotherapy followed by stem cell transplant) has probably around a 50-50 chance of resulting in long-term survival, down from 80% or more, mainly because his tumor relapsed after an initial course of chemotherapy, implying that it is a more aggressive tumor. Also, this is not a matter of Abraham's giving up and letting nature take its course because his situation is hopeless, a perfectly rational decision in cases that really are hopeless. Abraham clearly wants to live and believes that the Hoxsey treatment has a better chance of curing him than chemotherapy and without the nasty side effects. He has in essence fallen for a lie and, if successful in his quest, will pay for it with his life.
Adults, of course, are perfectly free to choose the lie of quackery over evidence-based medicine if they desire. Indeed, they do so all the time, and some of them pay a horrible price for it. It is assumed that, because they are autonomous adults, they can choose whatever they wish when it comes to their health. Children, however, are a different matter. There is no disagreement that, below a certain age, children are not capable of making such decisions rationally and must therefore depend on their parents to look out for their best interests. That is why they are not allowed to vote, drink alcoholic beverages, or sign legally binding contracts. As this article points out:
Although he is not old enough to cast a vote or buy an alcoholic drink, Abraham argues that he is old enough to make decisions about treatment to save his life.
The disagreement is, of course, over just that in Abraham's case (and occasional cases like his), given that some children may mature more quickly and thus become capable of such decisions sooner and some later. (We'll leave aside the frequently observation that some never reach this stage, no matter how old they get.) The real difficulty in deciding such issues comes when parents choose a course for their child that is so obviously not in the child's best interest or, as in this case, when they "support" a decision by their child over medical care that is clearly going to lead to the child's death. Whether it is because of their own beliefs or because they are "supporting" their child's bad decision (or a combination of the two) doesn't much matter, the end result is the same.
We as a society expect that the state will step in when parents fail in their duty to act in the best interests of the child. Usually, because we value freedom and the autonomy of parents to raise their children as they see fit, the state is, contrary to the claims of Cherrix's defenders, usually pretty slow to intervene, sometimes with tragic results. Worse, all too often when the state does intervene its actions arguably make the situation worse. Indeed, a case like Abraham's does, despite the fury of my attacks on the quackery and my pointing out the magical thinking that has doomed this child to an early grave if the state doesn't intervene, nonetheless causes conflict in me. My libertarian leanings and distrust of government intrusion into family life and how parents raise their children butts up against my absolute abhorrence of quackery and seeing a child suffer because of a bad decision or parental beliefs. When Abraham's lawyer argues that letting the state take custody of Abraham would open the door to social workers invoking the power of the state when they do not agree with medical care decisions made by the parents, I can't dismiss it completely, even though I know it's an overblown argument, the obvious retort to which is that social workers have had that power for years to act when they perceive a child being endangered by unconventional medical practices. So what makes this case such a threat to parent autonomy compared to the many cases that have gone before?
In the end, I tend to view such a case as no different from Jehovah's Witnesses who refuse to allow a life-saving transfusion in their child or Christian Scientists who think that prayer will cure their child of deadly diseases. In the case of a minor (for example Katie Wernecke, who is only 14), the state has the right and duty to intervene to prevent harm. However, Abraham is older and at an age that is more of a gray area. Consequently, the question hinges on whether or not Abraham demonstrates the maturity to be considered an adult and thus free to choose his own therapy, even if it is quackery that he chooses. I'm not sure that I know the answer. A strike against Abraham is that his thinking has not clearly not exactly been reality-based thus far, and certainly his parents haven't helped matters by feeding his magical thinking.
Neither have all the alties like the ones who have recently descended upon my blog who are touting his decision (and are presumably sending Abraham similar letters of support) as a life-saving repudiation of the "poison" and "burning" of conventional medicine and who believe, without evidence, that the Hoxsey treatment has a high probability of curing Abraham with no side effects. I'm guessing that, when Abraham ultimately dies, many of them will just sadly shrug and say it was God's will.
The ruling is due July 18, and I'll try to keep an eye out for it.
ADDENDUM: I just found out that Abraham was on Sean Hannity's radio program yesterday. That may explain some of this. A lot of people are probably Googling his name.
Comments
There is something in my local area:
http://news.bbc.co.uk/1/hi/5090126.stm
Very unfortunate case, but the fact that the parents are remortgaging the house and essentially impoverishing themselves for no reason (not to mention sending kids out house-to-house collecting) is disturbing.
Posted by: Andrew Dodds | July 13, 2006 9:19 AM
If Abraham or his family read this excellent post, I'd like to invite them to come to a hodgkins support board and talk to transplant survivors who are doing well and grateful for the treatment:
http://forums.webmagic.com/ubbthreads/postlist.php?Cat=0&Board=UBB1
There is not one patient on the list who survived relapse with hoxey or any other alternative therapy like that.
Posted by: anjou | July 13, 2006 9:32 AM
It's so sad, this case, since Hodgkin's is so eminently curable with proper treatment in the majority of cases. This poor kid is reducing his survival chances by the month.
My brother was lucky enough to have a sharp pediatrician, who recognized something strange was going on with him and referred him to a specialist immediately. As a result, his Hodgkin's was diagnosed and treated in a very early stage. He got sent to St. Jude to particpate in a study, which paid for his treatment. His affected lymph nodes were treated with surgery and radiation alone, and that did the trick for him, and now, thirty years later, he's still doing fine.
Our family realizes how lucky we were, though, to have had his condition caught so early. I don't think any of us will ever forget the kids who had to go through chemo. I know the support of friends and family helped them immeasurably throughout the process. This is only an anecdotal observation, but it seems like the younger kids had an easier time of it than the older kids-- it's likely the young kids didn't understand or dwell on the bad parts of the treatment as much as their teenage counterparts. I would question the wisdom of letting a sixteen-year-old make life-threatening decisions precisely because in terms of emotional development they're on the very cusp of being able to apppreciate the consequences and not really all the way there yet. As such, I would consider them particularly vulnerable to the brand of false hope alt-health offers.
I really appreciate your continuing coverage of this issue.
Posted by: Scenedesmeriffic | July 13, 2006 9:48 AM
Weirdly, I've been looking up medical consent in Scottish Law.
"A person under the age of 16 years shall have legal capacity to consent on his own behalf to any surgical, medical or dental procedure or treatment where, in the opinion of a qualified medical practitioner attending him, he is capable of understanding the nature and possible consequences of the procedure or treatment."
Neat version of what Orac was saying. But since Abraham is 16 here he could do what he liked; the only way of stopping him would be to section him under the Mental Health act, or to find that he 'lacked capacity' to make decisions under the Adults with Incapacity Act
Posted by: M | July 13, 2006 9:53 AM
I tell ya, it's been a while since I have been subjected to so much altie vitriol.
You must be doing something write*
And while I feel sorry for Adam, this comes close to the old too-dumb-to-live rubric, I'm afraid.
*sorry, never met a pun I didnt like
Posted by: firefalluk | July 13, 2006 10:28 AM
The reason you get so much crap is because your attacking their religion. That's what alternative medicine is for many people. It has all the right components, and it results in all the same effects as religious ideologies like Christian Science. For instance, they fanatically hold onto easily debunked medical beliefs without any evidence, they have a need to proselytize, and feeling of persecution from nonbelievers and scientists, and they make irrational medical choices that are bad for themselves and family members.
This reminds me so much of when I lived in PA and all the crazy Christian Scientists in the news who were always getting arrested for not giving simple medical care to their kids. I remember a case where the parents refused to bring their little girl in for a benign tumor on her leg, which then grew until they had to keep her out of school. After the truant officer came and found her, they took her from her parents and actually had to amputate the poor girls leg for a tumor that could have been removed with a swift cut from scalpel if they had done it early.
Same damn thing, different stupid religion.
Posted by: quitter![[TypeKey Profile Page]](http://scienceblogs.com/insolence/nav-commenters.gif)
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July 13, 2006 10:49 AM
Were I the judge, I would make a ruling something like this. I would require two things. First that the supporters of the Hoxey treatment provide evidence to the court of six people who were cured by this treatment, with full medical records (names redacted to provide confidentiality). And/or requiring the boy -- without the presence of his parents -- to be present at a discussion between proponents and opponents of the Hoxey treatment, and to make his decision, after this discussion, again without consultation with the parents.
Hopefully, either of these steps would prevent the boy from taking this suicidal act. If it did not, then all I could say is that he should be considered a martyr to ignorance, and hope for their own peace of mind that the parents never realized how they had, in effect, killed their own child.
Posted by: Prup aka Jim Benton | July 13, 2006 11:59 AM
I would not want my seventeen-year old daughter to make the choice that this sixteen-year old boy has made. I wouldn't want her to make such a decision at eighteen or nineteen, either. However, there comes a time when it may be appropriate for a child to make life-altering (even life-ending) choices, and that stage should not necessarily depend upon whether or not a child has reached the age of majority. (Indeed, I have met many children who were better able to make choices than some "adults" of my acquaintance.) Unlike these parents, I would try to convince my daughter to make a different decision, but I nonetheless believe that a person in the mid-to-late teens may have the capacity and should have the right to choose. We let adults make bad choices; perhaps sometimes we must let near-adults do so as well.
Posted by: Elf Eye | July 13, 2006 12:19 PM
[opening up a wasp's nest]
If we are talking "age of consent" issues, how mature is a 16 year old girl at deciding to have an abortion?
Posted by: epador | July 13, 2006 12:38 PM
Hmm. On the one hand, I believe in a right to suicide, even if you do it indirectly (via smoking, refusing lifesaving medical treatments, etc.)
On the other hand, it does seem unreasonable to allow children to kill themselves out of respect for their rights. Certain dangerous and/or important decisions are routinely denied to children because of their (believed) inferior decision-making ability.
But then, how do you define "child"? 16 is pretty old to be calling someone a child. It's traditional in the West to set the age of majority years after biological adulthood, but does that make it right?
Tough decision. The judge will most likely decide according to the law, as is his/her duty. But that doesn't answer the question of what is right. A tragic case all around.
Posted by: Chris | July 13, 2006 3:07 PM
Regardless of what you may think about the patient's rights or lack thereof, the parents' behavior is horrible. Sure, they are most likely dupes of these quacks, but don't they have a responsibility to their child? A responsibility that includes *not* being deluded, so that they can protect him effectively? They are, at best, failures as parents, no matter how the court case turns out.
Posted by: Chris | July 13, 2006 3:13 PM
This is almost like the smoking issue. Will we have to lobby the government to get altie kooks from advertising to children? Get them to slap 100% taxes on any altie product or service? If the boy dies, can his parents sue the alties for causing his death, like recent tobacco lawsuits?
On one hand, people should be able to make their own decisions, but when they're being mislead into doing something really stupid, we should try to set things right.
The sad thing is, altie quackery isn't causing the gullible people to die at a rate at which they would go extinct.
Posted by: King Aardvark | July 13, 2006 4:50 PM
This kid wasn't mislead by any scheming hippies from Mexico. He's been through treatment before, and after appearing on the radio and tv, we can assume he is aware of what he is doing. When you get a recurrance, especially in a case where conventional treatment cures 85%, it shouldn't even be a choice. You either do it, or you will probably die. I know by experience that chemo is awful, but when pussying out means death you have to put your comfort aside. If he doens't want a bmt, it is ridiculous to try to force it on him when there are plenty of sick people who need one that aren't religious idiots.
Posted by: Bart | July 13, 2006 5:27 PM
dearest dr. orac,
I'm an altie. The worst kind. There are no people on the earth that I loath more than docs. Docs are blowhard big mouths, money sucking leaches that prey on the sick. They look down their noses at the very people they bleed of their life savings before they kill them. Isn't all this name calling stuff fun. Hey here's a great one. A friend of mine who's wife is a doc, bought her son ( son just became a doc ) a t-shirt. t-shirt say's "trust me I'm a doctor". You know what that means don't you? Tell your audience what the trade joke is will you?
Seriously... You say you are a libertarian... What?????
You're a libertarian who wants the government to take the parents rights away in this case.? Look it up. You're no libertarian. You docs are about money and when you're not you're about the money. I didn't give a "rodent's rear" about medicine until one of you docs tried to kill my son.
Then the doc lied and changed the paperwork. Then the pediatrician tried to talk me out of the therapy that cured his autism telling me it wouldn't work. Now that it has worked, he says its a miracle. The therapy is modern medicine's own hyperbarics. Then I found out that hyperbarics arrest or reverses the symptoms of MS in 93%
( read Hyperbaric Medicine Today) I have a sister-in-law bed ridden in a rest home with MS but that doctor told her parents that it wouldn't work and they wouldn't even try it at my expense. Last year on the 4th of July my mom had a stroke. Mom had one about 5 years ago and hyperbarics got her back to say 90%. The docs convinced her that the stroke was really bad and recovery was impossible. She had the feeding tube removed. She hung around until the 17th. They say the stroke killed her. You and I both know that she starved to death. "Trust me I'm a doctor"
I'm an Altie alright. And you docs made me that way.
I believe in God and in Jesus Christ his son. I believe you doctors are arogant people who believe you are gods.
Of course I don't know you and you may be a truly caring person, but the way you write about people who doubt you makes me believe you're just a doc.
Love phil,
Posted by: phil | July 13, 2006 8:05 PM
Phil?
Dr Phil?
Posted by: Lucas McCarty | July 13, 2006 8:51 PM
That's gotta be a parody. Oh dear lord tell me that's a parody.
Just in case it isn't:
Look man, there are good docs and there are bad docs. Fortunately, medical practice is heavily regulated and there are safeguards in place to prevent serious malfeasance. Docs even pay good money to employ otherwise destitute poli-sci majors to help them make sure that they're complying with all of these regulations (which is good, because you don't want to see political scientists forced to ply their trade on the street, convincing narcotics dealers to adopt the Laffer curve and getting street gangs registered as PACs), and believe me, the CPT manual alone is twice as thick as my bilingual bible, and that's just for docs to get paid, much less avoid getting sued.
I don't see the need to give up on modern medicine simply because you had a bad experience with a doc. I've had bad experiences with ex-girlfriends, but that doesn't mean I'm going to take a vow of celibacy.
Posted by: Hyperion | July 13, 2006 9:51 PM
Arrogant? No, I'm all too acutely aware of the limitations of my science and craft and am working to better them.
Personally, I find "healers" like those pushing the Hoxsey treatment to be the arrogant ones. They claim an 80% cure rate on the basis of no real evidence and then attribute the 20% that aren't cured to "not having enough faith in the treatment" or to "bad attitude." In other words, they blame the patient when their treatment fails.
Now that's arrogant!
Posted by: Orac | July 13, 2006 9:55 PM
People, why are you talking to him like he is rational? He wrote:
Cure autism?
Posted by: Kristjan Wager | July 14, 2006 1:34 AM
Phil = John Best
Posted by: anonimouse | July 14, 2006 9:41 AM
Not Dr Phil? I'm sad now.
Posted by: Gorlech | July 14, 2006 12:46 PM
My guess, Phil = ForeSam
Posted by: DJ | July 14, 2006 1:02 PM
There was a story in the LA Times last week about a mother in Seattle who kidnapped her infant from a hospital by hiding him in a diaper bag. The "arrogant" doctors wanted to start the baby on dialysis while the mom wanted him to receive "ionic footbaths". The father felt that this had forced the mom to kidnap the kiddo. He thought that the hospital should have tried the footbath therapy first. Interestingly, the hospital had even offered to bring in a "naturopathic" physician to treat the baby in conjunction with the scientific treatments.
Posted by: J Bean | July 14, 2006 2:13 PM
Personally, I find "healers" like those pushing the Hoxsey treatment to be the arrogant ones. They claim an 80% cure rate on the basis of no real evidence and then attribute the 20% that aren't cured to "not having enough faith in the treatment" or to "bad attitude." In other words, they blame the patient when their treatment fails.
Now that's arrogant!
******************************************
Yes it is and it is alive and well at a lot of places that purport to be conventional medical centres. Which is why I find you refreshingly honest.
So..... how does a regular person combat this when presented with it? When it is being offered from a a person in a position of authority? Who has a medical or medically based degree?
Faith based medicine..... nice. If you REALLY wanted to be healed you would be....
Posted by: impatientpatient | July 14, 2006 5:59 PM
dearest dr. orac
I still fail to see much difference between you docs and the quacks. Its like the Wizard of Oz said to the straw man. 'The only difference between you and them is they have a diploma'. People just believe in you guys. I used to, I just know better now.
People wake up!!!! "Trust me I'm a doctor"
The people who blog here are a bunch of suckling little piggies. Doc Orac you are one of the Momma pigs.
A big fat Sal!!!! Have a great day!
This name callin' stuff is fun!
Posted by: phil | July 15, 2006 5:07 AM
At what point should one accept the kid's decision to refuse further treatment?
The first treatment (which has, according to Orac, an 80% cure rate) failed. And apparently, the kid found the side effects pretty horrible.
The second round of chemotherapy probably looks far worse (it has been to people I've known who've had more than one round), and has a far lower success rate. The kid says he thinks it will kill him.
It sometimes seems that MDs don't take the bad effects seriously enough, or don't recognize on some level how bad they are to experience (rather than to see someone else experience). Or maybe they don't communicate well with the rest of us about the side effects, or try to alleviate them aggressively enough?
From the kid's point of view, he's looking at being forced to do something he thinks will kill him vs being able to choose something that seems far less onerous and seems to offer some hope of cure (even if that's an illusion. Remember, though, he's already found himself at the wrong end of the medical statistics).
Posted by: Bardiac | July 15, 2006 2:30 PM
You say:
he's looking at being forced to do something he thinks will kill him vs being able to choose something that seems far less onerous and seems to offer some hope of cure (even if that's an illusion. Remember, though, he's already found himself at the wrong end of the medical statistics).
Ugh. The kid is completely misinformed and it's all about being informed completely. "seems..."some"..."hope" Those are nice words yet they are lies. There is no "seems" as there is no evidence. There is no "some" as there are no stats. There is no "hope" as cancer is logical.
You need to study even a little bit to understand how cancer works. As cancer pours over a million new cells per day into your body, you might understand that even waiting a day decreases one's odds of survival. It's only time before the immune system becomes overwhelmed.
Even if not put into remission he has a much greater chance of living longer through chemotherapy cycling and his side effects should be much better controlled with proper administration of medications that can now be received free of charge through many biotech companies if his parents took the time to fill out the paperwork.
Posted by: Marcia | July 16, 2006 7:45 AM
I think bardiac just wanted to illustrate this kid's point of view. I think most reasonable people will agree than his hope is indeed an illusion and the chemotherapy offers the only chance he has to live. The main question is if a 16-year old is old enough to refuse treatment - however stupid his decision is. Given that he has already been through one round of chemotherapy and he is 16, I tend to think it is his choice. Still, I am glad I am not a judge.
I wonder what we would say if instead of "I'll try the snake oil" the boy's argument along the lines of short-term quality of life vs a chance of long-term survival but with 50% risk of dying anyway? Would we consider it differently?
The next round of chemotherapy offers about 50% of survival - based on what the author of this blog says. If you are a pessimist it means that there is a 50% chance of dying in spite of treatment or even during treatment. If you end up in these 50% you'll have lost the last few months (or however long this kid has without treatment - how long?) of living with more or less good quality of life. I.e. 50% of benefit vs 50% of harm. Granted the benefit of long-term survival is so much larger than the harm of loosing a few months of quality of life. But not if you are among the "unlucky" 50%. Still, most reasonable people would take 50% chance to live, probably even 20% chance to live. But a few may not. Are they stupid just because they don't agree with most of us? Do we force them? Is 16 mature enough to make this type of decision? 18 seems to be a rather arbitrary line. I met very mature 15-year-olds and very immature adults.
I don't know how mature this kid is. Obviously, this kid would have looked much more mature if his arguments didn't include using snake oil... But then so many adults make the same decision and we don't force them.
I really don't know what the right decision here is - I'd be curious to see what the judge decides. I sure don't envy the judge.
Posted by: kitty | July 16, 2006 5:00 PM
to krisjan Wager
my son's fight with autism:
age: 2yrs 7months began hyperbaric oxygen therapy
no eye to eye contact, 10 to 15 word vocabulary
not yet diagnosed by a doc(no need, kinda obvious)
treatment: 16 feet one hour, 100% O2 4-6 days/week
(chamber was 75 miles away and I work 10hrs/day)
treatment #65 upon removing my son's hood he grabbed my cheeks with both hand and was looking me in the eye and babbling. I sought and received a diagnosis from doc's
at the University of Louisville.(maybe they are quacks and
got the diagnosis wrong. They made me come back twice.
the second time for an autism specific test. $1600 dollars. What a deal to learn something I already knew.
They are the ones who said he was autistic, but they did say whatever I was doing I should keep it up because my boy had made unbelievable progress since the first visit.
They also gave me a book on autism and a whole bunch of pamplets, one even said riding a pony helps autistics.
Now that's a doc after my own heart.....what an altie!!!)
275 treatments and fell asleep at the wheel. What a revelation 4 to 5 hours of sleep per night for a year can hurt you. I stopped the nightly trips took out a second mortgage bought my own divers decompression chamber.
6500 lbs, 14 feet long and 5ft round, priceless.
My son is in the third grade making A's and B's, mostly A's. He's a really great kid. I never made another donation to UofL to tell me if he's cured so maybe I was wrong when I said that he was cured. Good point!!!
My boy's doc says its a miracle. Maybe he is right.
Maybe DOCTOR Philip James or DOCTOR Richard Neubauer or
the DOCTOR from Brazil(sorry can't remember his name)
are correct in some of their research about O2. They help
people. I think they like people, ie no name calling.
I was looking for answers. I knew he was deprived of O2 at birth(blue as a blueberry) didn't get him breathing for at least 5 maybe 7 minutes. Heart stopped once on the next day. One week in the nicu. I thought a lack of O2 hurt him, maybe extra O2 could fix him.(too simple for Ya?) I asked my boy's doc about hyperbarics, he said "It won't help", "waste of money" I decided to do it anyway. Had to sign a waiver with the doc's office just to get the script for the O2. I hope I answered your ? You big suck!
DOCTOR PHILIP JAMES WILL EVEN ANSWER QUESTIONS ON YAHOO.
Yes I believe there are good doctors, and they are all alties,
Love phil
Posted by: phil | July 16, 2006 6:14 PM
Well, you have certainly shown us the workings of the mind of a mark (http://en.wikipedia.org/wiki/Mark_%28victim%29 ).
Posted by: HCN | July 16, 2006 8:49 PM
Of course, it was the hyperbaric oxygen therapy that did the trick. Had nothing to do with the passage of time, because we all know kids with autism never get better unless they're subjected to lupron or secretin or oxygen therapy.
Speaking of which, I wonder how the Geiers feel about Phil's success story. My guess is they're trying to figure out how they can get a cut of the profits.
Posted by: anonimouse | July 17, 2006 11:59 AM
to HCN,
squeal little piggie, Come to the great and mighty Doc-o-rac's alter. The god of science beckons you to come.
Praises are welcomed, but slams on the non believers are met with praises. I'll bet you party if the boy dies.
You people are sick. You only believe in what you see and have no faith. I don't know if hyperbarics did it or if it was a reward from GOD for a mustard seed of faith.
You hate what you don't understand. If you and the great doc were in charge from the beginning medicine would be nowhere. It is the people who take chances and try new things that benefit and yes! suffer. Doc-o-rac has probably not added a thing to medicine but he's probably rich from it.
By the way has he ever listed how many successful operations he's performed where the patient died?
You are just a suckling little piggie, aren't you!?
love phil
Posted by: phil | July 17, 2006 5:10 PM
Generally speaking 3 years old is somewhat young for an autism diagnosis. Also, as a parent with a child that suffered neonatal seizures and has a severe speech disorder... I can tell you there is change with TIME (and lots of speech therapy).
You really are not presenting yourself very well. You may accuse Orac of taking "getting rich", but he is in academia and is taking the least paid route. Very much UNlike the guy who sold you a huge machine.
I'm sorry, but you are a victim of a scam artist. You just don't recognize it yet.
Posted by: HCN | July 17, 2006 9:46 PM
Kitty and bardiac wrote I think the most reasonable and sensitive comments so far. In fact both make a damn good case for why parents' rights should be considered final authority. I wonder how many more reasoned people are out there but choose to stay silent or "on the fence" until someone else decides in their stead.
It is obviously terribly sad when one has to witness fools march off cliffs confident that gravity was nothing but a silly myth (I wish I could quote the blogger on this site who made this analogy first).
Remember that we really only hear about a very few of these cases and of course the juiciest and weirdest or cruelest and-so-on...get the publicity. Sure we wish we could do something about this perceived "evil" and purge the perceived "evil-doers" in one fell swoop with legislation but think for a minute about all those less than publicized cases of people already in a tangle today with the existing social services (and keep in mind how many of these systems function merely as a "decorative" public policy). It would be glorious to claim: "Even if only ONE child is saved then the policy will have been worth it!" but it would be more revealing to ask: "How many children will have been ill-served by this rickety system? Therein lies the problem for me. If I had to choose which party was most likely to be acting in the child's best interest (even if it is perceived to be delusional by myself), then I would have to bet on the parents. Social services throughout the world are not much more than the bureaucracies they are built on and only have EXPERIMENTAL "trial-as-you-go" solutions such as foster homes.
I would also be weary of making statements like the one from Prup aka Jim Benton:
"Hopefully, either of these steps would prevent the boy from taking this suicidal act. If it did not, then all I could say is that he should be considered a martyr to ignorance, and hope for their own peace of mind that the parents never realized how they had, in effect, killed their own child."
Do try to have some understanding for other people's very particular and always unique situation. He clearly thinks himself the gamble not worth the effects of the treatment. He thinks it will kill him! That's powerful stuff! How cruel to accuse the parents off killing him when no one in his experience offered him anything more than a mere reprieve.
It is disingenuous to say that chemo would have been "his only chance to live". It must be admitted that because everyone still poorly understands cancer and therefore by definition the therapies are EXPERIMENTAL and not "targeted" to treat cancer, it is impossible to confidently claim chemotherapy could have saved him. And for some others the obvious would seem to be: "rinse and repeat if necessary", as if chemo was a body wash. The effects of chemotherapy on the body are of international fame! As an exercise try for a change to define: "to live". Try to define it in a way that is emotionally relevant to each and every one of us. Some people seem to equate "to live" with surviving one year longer no matter what the costs. Others may choose to make peace with their fate and live a comfortable and perhaps also shortened life instead. These are subtle but emotionally huge decisions that some parents may not be capable or willing to make but don't go off thinking bureaucracies are naturally the more well meaning and capable thinkers. Only in the cases of INTENTIONAL harm by parents should the law step in. Laws are merely components in a system that is not known for its inherent "justice" but rather for its inherent "functionality". So be careful what you wish for lest you yourself get caught up in a bureaucratic "function" one day. The road to hell is paved with (patronizingly) good intentions. Those words of advice are good no matter where one stands.
Posted by: pat | July 18, 2006 3:10 AM
pat said: "Sure we wish we could do something about this perceived "evil" and purge the perceived "evil-doers" in one fell swoop with legislation but think for a minute about all those less than publicized cases of people already in a tangle today with the existing social services (and keep in mind how many of these systems function merely as a "decorative" public policy)."
Unfortunately the clinic is in Mexico... American legislation stops at the border.
BUT later he/she says "Only in the cases of INTENTIONAL harm by parents should the law step in."
Actually no one is accusing the parents of intentional harm. But what do you do about the lies perpetuated by the clinic in Mexico? The parents (and child) have been fed false hope by a clinic who may only be after their money. Take into evidence the nasty comments places on this bloc from someone in Tijuana.
Again... Does ANYone have actual verfiable evidence of how well the Hoxsey treatment works?
Posted by: HCN | July 18, 2006 3:41 AM
There isn't ANY evidence for ANY treatment working; control groups are always skewered when quack researchers can even be bothered to use them and an extremely high number of Autistic children become adults functioning at an adult level.
The success of quack treatments has always relied on them spreading the myth that nearly all Autistic adults are 'train wrecks' in institutionalised care because the most central fact that defeats them is that most improve anyway indepedent of invasive treatment.
Posted by: Lucas McCarty | July 18, 2006 7:02 AM
From ACS page on the Hoxsey treatment
http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Hoxsey_Herbal_Treatment.asp?sitearea=ETO
What is the evidence?
There is no evidence that the Hoxsey herbal treatment has any value in the treatment of cancer in humans. In 1946, the National Cancer Institute reviewed 77 case reports of Hoxsey's patients and concluded that none of them met the criteria for scientific evaluation.
Only 2 human studies of the Hoxsey herbal treatment have been published. One was published in a pamphlet provided by the Tijuana clinic and simply contains a description of 9 patients who received the treatment. It concluded that the treatment is effective, even though most of the Hoxsey-treated patients received standard cancer treatment in addition to the Hoxsey treatment. The other study published in the Journal of Naturopathic Medicine involved 39 people with various types of cancer who took the Hoxsey herbal treatment. Ten patients died after an average of 15 months and 23 never completed the study. Only 6 patients were disease-free after 48 months.
The National Advisory Cancer Council studied many of Hoxsey's patient records and learned that most of the patients had never had biopsies, so that there was no confirmation that they actually had cancer. The National Cancer Institute investigated 400 patients who were reported as cured by Hoxsey. Patients or their families were interviewed, and all records were carefully reviewed. These patients fell into 3 groups: those who had been treated, but didn't actually have cancer; those who had received successful conventional cancer treatment before seeing Hoxsey; and those who had cancer and had died of it, or were still alive with evidence of cancer. Out of the 400 cases, not one case of a Hoxsey cure could be documented.
To collect some reliable information, a carefully controlled study of the Hoxsey tonic was performed on rats with tumors. There was no effect in tumor size and growth between the treated and untreated mice. The main ingredient in the tonic, potassium iodide, had been tested already and found to be useless in cancer treatment. However, in some other animal studies, a few of the individual herbs contained in the treatment showed some anti-cancer activity. Even though animal studies may show promise, further studies are needed to find out if the results apply to humans.
Posted by: anjou | July 18, 2006 9:45 AM
Well, unless one can prove INTENTIONAL harm one has better stay away from them. It's unfortunate perhaps but stupidity is not forbidden by law in the world I know and I am strangely thankful for that one because stupidity is more often than not "anchored" in law. Remember: eventhough we might on a personal level be imbued with notions of "justice", the law lends nothing more than "functionality" to a wider social experiment. Be furious and fume if you must but please resist wanting yet another law that the system (in this case the U.S. *GASP!) will be ill-equiped to deal with in any humanely relevant way.
Posted by: pat | July 18, 2006 10:27 AM
Actually, I am fairly sure that it is normal for states to step in in cases of unintentional harm (e.g. neglect) as well.
Posted by: Kristjan Wager | July 18, 2006 12:42 PM
Laws do exist and HAVE been used to protect children from UNintentional harm.
Recently in our state a woman lost custody of her son because she wanted to explore "alternative medicine" to deal with his kidney failure. The state took custody early in June. On the eve of his surgery to put in the catheter for dialysis the mother kidnapped him from the hospital. The child was recovered, received the surgery and sent to live at his father's home (the parents are not married to each other):
http://seattlepi.nwsource.com/local/276817_babyriley07.html
Posted by: HCN | July 18, 2006 2:13 PM
to HCN
I was being ugly just like you were and just like many of those on this wonderful site. I'm sorry to hear about your son. May God Almighty bless him with healing. Incredible healing. May he bless your son with all that I have prayed for my own.
No one! NO ONE! told me hyperbarics would heal my son. No one tried to sell me anything. The first 275 treatments he received were a gift from his God-Parents. I am the mad man that went out in search of it. The info I received from the people I sought out were mentioning poisons that would bind with the mercury. I believed that is not what happened to my son. (blue as a blueberry). I believed he had damage from a lack of O2.
He scored 6months to 14months on the test the school performed, and nothing at all on one test. This was approx 2yrs of age.
I was destroyed! The answers I got from the ped, Wait! Wait! Wait! OT! SPEACH THERAPY! ETC
RIDE A PONY!!!! ....DIDN'T SIT WELL WITH ME!!!
MOST of these children don't get better, do they!?
So superdad! I'm a mark, and my son is an awesome little guy. I'm an idiot with a son who makes "A"'s
and two "B"'s and is going into the 4th grade. I'm am a fool.
I tossed a load on superdoc's door because he's someone who doesn't understand life.
NOW time for the neurodocs to answer up. Why don't we try hyperbarics first here in the U.S. on MS patients before we use the poisons?
Answer!!!! money MONEY and MONEY. Pharms don't get any. Docs got big housesand bmw's to pay for.
Docs would lose half there patients. And like HCN would attest to, there are lots and lots of marks to kill.
But! let's bleed them first.
If any of them say it doesn't work you are dealing with a liar! They might say it doesn't work on everyone but it works on so so many that it doesn't make sense to not try it first, (It makes dollars and lots of em!).
Bring in your studies of the failed test. I'll bet they didn't use the successful protocol used in the UK.
Over 10,000 people over a period of 15 years, but it didn't work every time, but neither does the poisons. Where are the real DOCTORS who want to help sick people?
finally.
3 types of lies....little white lies, Big fat ones, and statistics!!!!!!
Love Phil
P.S. ever watch the cartoon ICEAGE, Remember the scene with the Dodos, "Doom on you!", "Doom on you"....
.....listen closely and you can hear them here.
Posted by: phil | July 18, 2006 6:52 PM
I believe that natural cure's work because they are natural ... compared to chemical drugs... and Hoxsey is a natural herbal tonic. The ACS says it is untested, but it has been used for 60 years with amazing success. All the Hoxsey clinics were closed in 1961 .. the personnel arrested and the cancer patients left to die or go to Mexico ... which they did ....
Go for it Abraham ... God Bless!
Ted H Spence
Posted by: Ted H Spence | July 18, 2006 6:57 PM
Knowing that iatrogenic medicine is the only legally recognized medicine and knowing that iatrogenict death is the leading cause of death in the US, the idea of letting the law decide what is best for mine or my kids' health shivers me timbers! But then I don't live there (huge sigh of relief)
Posted by: pat | July 18, 2006 7:07 PM
So show us the evidence. I see lots of claims, but not even intriguing anecdotal evidence to suggest that it might work. I'm tired of argument by assertion. Try argument by evidence for a change.
You know what we in conventional medicine call alternative medicine that's been shown to work scientifically in clinical trials, Phil?
Medicine.
We're more than happy to add it to our armamentarium, but you have to show us the evidence that it works. And don't tell me there aren't any resources. Over $120 million a year is spent to fund the National Center for Complementary and Alternative Medicine at the NIH, and not a single alternative therapy has been definitively shown to be effective, and the negative trials that failed to find a therapeutic effect are brushed off, leading to more money being spent to study the same old quackery.
Posted by: Orac | July 18, 2006 7:12 PM
Pat said " knowing that iatrogenict death is the leading cause of death in the US"...
Where did you get this bizarre statistic?
Because in reality death stats in the USA are summarized as "Heart failure and Malignant neoplasms cause over half of all deaths of people over 45. Accidents and adverse effects resulting from the accidents is the leading cause of death for people under 45 to 1 year of age. Of all the causes of death due to accidents, the leading cause is motor vehicle accidents. Motor vehicle accidents remain a high risk for all age groups."
The numbers are listed by age group here:
http://www.disastercenter.com/cdc/
If you want to keep your child safe: Keep him or her away from all motor vehicles.
Posted by: HCN | July 18, 2006 10:27 PM
"Where did you get this bizarre statistic?"
here:
http://www.iatrogenic.org/
or here:
http://www.newmediaexplorer.org/sepp2003/10/29/medical_system_is_leading_cause_of_death_and_injury_in_us.htm
(quickly copied and pasted from another post)
or wherever the cherries may be...
The cdc is unlikely to want to assimilate itself with "the" or "a" leading cause of death. Who would? The accountability would be unbearable.
I have to make a slight correction. I can't be sure it is THE leading cause of death; the stats differ quite a bit obviously, but i think it is safe to say that iatrogenic death makes the all-star team. I couldn't find any stats on death rates due to medical error on the link you gave me, HCN. perhaps i missed it.
Posted by: pat | July 19, 2006 1:49 AM
ok the second link doesn't work, I think the "L" in htm "L" is missing at the end. find another one, any one, and start crunching the numbers.
Posted by: pat | July 19, 2006 1:57 AM
Sorry... you'll need to do better.
The first link only has links to a Yahoo Group, not any real studies. If it was "The American Iatrogenic Group" were a real research group, it would have a journal, or at least something that was published in a peer reviewed journal that was indexed at www.pubmed.gov (and the word "iatrogenic" brings up almost 20,000 cites, though none claim it is a leading killer in the USA). The second one looks like a news article (and a biased one at that).
The one I linked to I got from a government statistics site that linked to it because it condensed their information in an easy to read format. It was a site like this:
http://www.cdc.gov/nchs/products/pubs/pubd/hestats/finaldeaths03/finaldeaths03.htm
You may note that one statistic that is easy to see is that average age at death is 77.5 years.
I tried the search phrase "death statistic" at www.nih.gov and got over 5600 hits. They were usually specific things like cancer, diabetes, and other diseases. I tried to narrow it down with "motor" and then "vehicle", but it was still over 500 hits.
Going back to actual verifiable death statistics (from the "disastercenter" website, which is actually kind of a cool, but depressing, site to wander around)... you'll see that for children accidents are a major killer, especially motor vehicle accidents. So you 'might' be right to claim "iatrogenic" if the child not in a car seat was ejected from the vehicle through the windshield died because the folks in the emergency department could not repair his/her crushed skull... and the child died because the centers of the brain that controlled certain life functions like breathing and heart function failed. OR... for the child left unattended in the bathtub (for tiny kids drowning is a big killer) the folks in the emergency department could not restore lost function due to lack of oxygen.
Here's an idea... poke around www.pubmed.gov, www.nih.gov, www.cdc.gov or your local medical school's library and come up with some good verifiable evidence to support your claim that "iatrogenic" problems are the leading cause of death in the USA. Or at least figure out where that Yahoo group and journalist got their information!
Posted by: HCN | July 19, 2006 2:44 AM
As I said you can pick and choose and decide for yourself. Yes the article is biased. It is one end of an extreme. I tried to add a token one. You searched "iatrogenic" and "death statistics" specifically it seems. When I google "iatrogenic death" I get 453,000 hits. Good luck.
You said:
"So you 'might' be right to claim "iatrogenic" if the child not in a car seat was ejected from the vehicle through the windshield died because the folks in the emergency department could not repair his/her crushed skull... and the child died because the centers of the brain that controlled certain life functions like breathing and heart function failed. OR... for the child left unattended in the bathtub (for tiny kids drowning is a big killer) the folks in the emergency department could not restore lost function due to lack of oxygen".
I'm sorry. I fail to follow. These examples are not examples of "iatrogenic deaths".
searched "iatrogenic deaths" at the CDC. Got a zillion hits but the titles to the documents suggest nothing about iatrogenic death so far. Maybe they're hidding it ;)
I will try again tomorrow.
Posted by: pat | July 19, 2006 3:47 AM
brain fired today while at work!!!!
DOCTOR IGNATIO (sp) (the DOCTOR from South America)
Humble, nice and likes(loves)people.
got slammed by a doc one day on the web, loved his answer.
doc said he didn't know jack. His answer I believe? was he
wrote the hyperbaric curiculum at the University of Miami.
Should double check before I post it here but no time.
Sorry if I got it wrong.
Question for the docs who kill off stroke patients.
consider the source!!!!
Why don't we treat stroke patients in a chamber?
Answer! Money Money and Money.
The docs won't make as much money. the Pharms won't make
as much money. just doesn't make sense.
But it sure makes a lot of DOLLARS!!!!!!!
Of course some won't be saved, but the poisons don't save them all either.
Check out DOCTOR IGNATIO's(sp) work. You never know, Someone
you truly care about might stroke out and a little bit of
knowledge might help out.
Love phi
Posted by: phi | July 19, 2006 5:08 PM
The holistic diet he is pursuing can't hurt him, and it might even help him with the weakness and such.. studies have shown organic is better.. but proven medical treatments would definitely be the way to go. I support the state's decision to act in the best interests in the child, but I don't think they should tear his family apart.
But hey, he's living up to his name.. Starchild is now a Star ;)
Posted by: deronde | July 21, 2006 8:49 PM
Ladies and gents...
I am a scientist and this boy's uncle. Among the other things I have read here are fair amounts of unsubstantiated character attacks on Abraham, Jay and Rose.
Those of you doin