You don't have to be a parent to care about the welfare of children---but it does bring things into a sharp, personal light. I recently wrote about Daniel Hauser, a child likely to die of Hodgkin's disease due to his parents' cult medicine beliefs. Cases like his are aberrations---they stand out for their rarity, but also for their horror. Still, the horror is mitigated somewhat by the rarity.
More frightening are systemic abuses of children via cult medicine beliefs, ones that affect dozens or hundreds of kids at a time. One of the most egregious of these is Lupron therapy for autism. As documented by Steve Novella and Orac, this is an unscientific practice of chemically castrating young boys with autistic-like behaviors.
If you just did a double-take, you read it right. Mark and David Geier promote the chemical castration of children with autism spectrum disorders. The reason behind this is not all that important, and is much better documented by Steve and Orac. But the horror of it is hard to comprehend.
The journey to sexual maturity is difficult enough, both psychologically and physically. To purposely interrupt this process is nothing short of abuse (whether it is also battery is an open question). Since there is no valid medical reason to castrate children---such as precocious (early) puberty, or prostate cancer(!)---this practice is unjustifiable. Are they also using this drug on girls, and if so, what are the effects? We not infrequently use drugs "off label", that is, not for the indications approved by the FDA, but this is normally a technicality---the drug clearly is good for the condition, but the drug company hasn't had the incentive to specifically test that indication. But to use a dangerous drug that destroys the normal development of a child for no clearly indicated reason is more than immoral. What the Geiers are doing is beyond "alternative"---it's quackery, possibly fraud, and abusive. I don't know what motivates them, but from where I sit, apparently ideology and money play a role.
They're opening centers all over the country for their quackery, and these centers must be profitable. You see, most insurance companies aren't going to pay for treatments that are so clearly insane, so parents pay cash. I do wonder how long it will take for insurance companies to wonder about possible fraud. For example, this bit from their website:
We always work to provide whatever is necessary to optimize insurance coverage for medications.
...is just the kind of thing that raises red flags to fraud investigators. Does it mean that they will "stretch" the definition of "precocious puberty"? Or simply that they will send a bill to the insurer, like most doctors? Or are the words just there to reassure parents who will inevitably receive a bill?
What these new clinics are achieving is nothing less than a cottage industry of child abuse centers. To call it anything else is a lie---a lie that harms children. It is nearly unimaginable to me that this is allowed to go on---that a couple of "scientists" working out of their basement are allowed to medically castrate children without any repercussions.
You should be nauseated, as I am, that this is allowed to go on. But what can we do?
I'd start with writing the state medical boards where the clinics are located. State medical boards have a long history of tolerating quackery, but who knows? Maybe someone will wake up and realize that it's not OK to castrate autistic kids. Most states will probably require the patient to make a formal complaint, but a letter or email couldn't hurt.
It's been a while since I've posted on fatherhood. There's a couple of reasons for that. My wife brought up a disturbing point---she was uncomfortable with our daughter's picture being online. The reasons she listed made me shudder and turn white. I'm not sure whether or not I agree, but for now at least, I'm holding off on further photos until I finish thinking things through more clearly.
The next is conflict. Like most working parents I feel terribly conflicted. Last week my daughter asked, "Daddy, will you come to my birthday party?"
Cripes, she had to ask?
Last night I called her from the hospital to say goodnight. I promised her I'd cuddle when I got home.
And I did. I climbed onto her bed, turned on my iPod, and watcher her sleep. When she turned over she grabbed my arm and held it like a teddy bear. But I'm sure she doesn't remember.
I've been wondering how I can reorder my priorities. While I was watching her play in the park the other day, I wondered---should I move to a small apartment, get rid of a car, get rid of the cable, the phone? Move to a small town? Should I simplify my life so that I can work less?
Would that it were that simple.
I've been reluctant to write about the Daniel Hauser case. I don't even want to imagine what his parents are going through. If you're not a parent, I can't explain it to you, so you'll have to trust me---having a kid with a life-threatening illness can drive you to do the unimaginable.
And what Daniel's parents have chosen to do is nearly unimaginable, but until you've been there, judgment must be tempered by compassion. But that compassion is only for the parents and the patient, not for those who are supporting their horrible decisions.
Daniel is 13 year old boy with Hodgkin's disease, a form of cancer that is curable with radiation and chemotherapy. Without it, it's deadly, and the death isn't pretty. I've diagnosed patients with Hodgkin's and had the pleasure of watching them go on to live normal lives. None has ever regretting being treated.
Daniel's parents apparently belong to a cult called Nemenhah, some sort of New Age-Christian gamisch of beliefs with a Native American patina. Like most cults, it wants your money, your absolute obedience, and ideologic purity. In return you get to abandon your money and your access to modern medical care.
Daniel's parents, after one cycle of chemotherapy, decided to follow the Nemenhah dictates and eschew modern, curative medical care. They may or may not realize that the suffering they are inflicting on their child is much worse than anything he could experience with treatment. When the courts ordered him back to treatment, the mother took Daniel and ran. She is currently wanted by the police.
The basic ethical principles here recognize that children, while autonomous beings with rights, have a limited decision-making capacity, and must rely on adults, preferably their parents, for guidance. If the parents cannot provide a safe environment, the State becomes involved, as it did in this case.
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Blogging requires a thick skin. So does life, so I don't get personally worked up about shit that happens on line. But some things do piss me off.
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In relation to my recent bits about Jenny McCarthy and her antivaccination nonsense, reader Isabel asks the following:
I've been following this discussion for awhile, PalMD, and while I agree that JM sounds like a nut, and while I feel sorry for her kid for being stuck with her as a mother, it's hard for me to see her as the evil force she is being portrayed as.
For starters, through no fault of her own, she's obviously not particularly bright, which makes it hard to take her seriously, in either a positive or negative way. She seems like countless other neurotic women who are desperate for help with her child's disorder, listening to charlatans and becoming a believer who wants to then spread the word.
Shouldn't protests be focused on the dispassionate business people who are backing her up, who profit from stirring up controversy and who don't have autistic children? And the doctors and labs who go along with the poop analyzing, etc, preying on parents fears? I mean, who is giving the lab the orders? This must be an arrangement through her doctor, no?
I have heard some complaints directed at Oprah, but they are much more polite, it seems, and I have only heard (please correct me if I'm wrong on this) JM specifically blamed for kids deaths and other horrible things...she seems more like a sad, almost pathetic pawn to me.
Now, I am not an ethicist, and while I do know something about medical ethics, more general cases are a bit outside my comfort zone. Still, let's take a look at the issues. If we're lucky, a real ethicist will stop by.
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So, President Obama is getting an honorary degree and giving a commencement address at the University of Notre Dame, and some folks aren't too happy about that. Why? The stated reasons is his support of limited abortion rights. Let's examine why this stance is hypocritical and nonsensical, then examine the real reasons for the protests.
Beliefs of a speaker
Notre Dame has a reputation as a good university, and I'm quite certain that classes on campus include ideas not part of official Catholic belief. I'm willing to bet that not every student, professor, and employee hold to every letter of Catholic doctrine. Still, one could argue that honoring a commencement speaker is a larger act than allowing a professor to teach and research (although I'd disagree with that, too).
So Obama holds an opinion about an important issue that is different that the opinion of the Church. So what? Has every speaker held to the NIcene Creed? That's some pretty important stuff there. Must a speaker hold to all Catholic beliefs? If not, which ones must the believe?
After all, if "life" is the primary test here, then Bush and Reagan should have been turned away for their support of the death penalty and of war. Or are some lives more important that others?
Purpose of a speaker
Is the purpose of a commencement speaker to support all the beliefs of the school's sponsoring faith? Well, that would rule out many Catholics, so clearly the purpose of the degree and the speaker is not to come as a pure cheerleader for the Faith. Perhaps the purpose is to invite a prominent, successful person, and hear their views, their story. Obama is certainly a good speaker and a successful person. Seems like a good choice.
Content of speech
I'm sure that the university doesn't limit what a speaker can say---that would be antithetical to the purpose of a university. So they are of course taking a risk when they invite a speaker. But does anyone really think President Obama is going to choose the one issue on which he and the Church most disagree and speak about it? And if he did, is the faith of the students so weak that one speaker could eradicate four years of education?
What is the meaning of a degree from ND, honorary or otherwise? Does it mean that in addition to your successful education you agree with the Vatican on every single letter of doctrine?
Motivation of protesters
We should take at their word protesters who say they feel Obama's abortion beliefs, and his ability to influence policy make him a poor choice. It's clearly hypocritical and narrow, but why would they lie?
But are they recognizing all of their motivations? After all, plenty of other influential speakers have had no trouble coming to Notre Dame. Protesting a president's policies is a good thing. It's a sign of a healthy democracy. But what does it mean to try to deny him a platform based on a single issue, while offering that platform to people like Bush with similarly "offensive" views?
Protesters say that Obama's principles are strongly opposed to Catholic beliefs. Oh, really? Besides abortion, which beliefs would those be?
I know that my more conservative friends will think this is ridiculous, but Obama represents something fundamentally different than the Bushes and Reagans. If Obama were coming to the University to give a speech on abortion rights, this would be problematic (although not that problematic). But every president in the last 50 years has been invited to speak at ND without a litmus test. What makes Obama different?
To state the obvious, he is Black, has a Muslim middle name, and is liberal. He is different, and here in the Midwest, he makes many people uncomfortable.
As this presidency continues, I hope we will get past this and focus on real policy disagreements rather than fake issues. There are real problems in this country, affecting real people, and there are real disagreements on how to fix things. Let's go there.
People who identify themselves as having "morgellons" syndrome claim to have fibers and parasites emerging from their skin. As my commenters have pointed out, it's a rather simple task to evaluate such samples in a laboratory. If "morgellons" "researchers" wish to illuminated this "novel" "disease" (I just wanted to see how many scare quotes I could squeeze in), then where are the case series or other published data?
One non-sensical study of water sample to search for the purported cause of morgellons
One lab report purporting to investigate the causative organism (sic) of morgellons
A "position statement" written by Randy Wymore, a non-expert in any of the relevant disciplines
A paper entitled, "Contribution of Agrobacterium to Morgellons Disease" written by a noted fake expert
A quixotically written analysis of fibers from some random folks
A report from a crime lab in Tulsa, OK
A PubMed search reveals no published research on the topic---not even case studies. The Morgellons Research Foundation website, however, has a "research" section. Of what does it consist?
Is it any wonder that no one takes the "evidence" for morgellons seriously?
How much trouble would it be to post a recruitment notice on a morgellons website and have samples from a few hundred patients sent to a couple of independent pathologists?
Either there is a ubiquitous conspiracy to suppress this strange new knowledge, or the researchers involved are completely incompetent.
Which do you think it is?
I've decided I love Jenny McCarthy's Oprah-blog. It's like watching a mad scientist---you know he's gonna blow something up, but still, those Tesla coils have a beautiful inutility. Her latest piece is truly a monument to stupidity, and if she really keeps this up, I'll never run out of blog-fodder.
It's called "Poop Stories", and it's about, well, Jenny's poop, so pull on those hip-waders and let's go take a look.
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I really didn't mean to get dragged back in to the Morgellons controversy. Really. But I made a flippant comment on a recent post, and here I am. Let me put down some brief thoughts here:
1) There exists a loosely affiliated group of people who are suffering from diverse and (to them) unexplained symptoms, and they have named these "Morgellons".
2) The public voices of these people are dominated by people who come off as being nuts. This is not the fault of the sufferers.
3) The suffering is real---the is the clearest truth.
4) The science to date does not support any new and unusual illness. All of the findings are easily understood by conventional explanations.
5) Despite the fact that no good science has yet supported the claims of a new, emerging disease---or perhaps because of it---the public voices of this group latch on to bad science that validates their beliefs---regardless of the truth.
6) Conspiracy theories permeate this community, and like many altmed communities, they appear to be unwilling to accept conventional explanations for their suffering.
7) It is very easy to over-generalize about these people.
The only way to find an answer here is go where the science leads. I have a feeling, though, that if the science doesn't give the Morgellons crowd the answer they want, their not-so-better angels will dominate the discourse.