Kent Heckenlively: Doctors Lie to the Press but tell me the truth

Too strong? Maybe slightly. His words: "It's been my experience that what researchers say privately to somebody like me varies greatly from what they may say in academic papers or to members of the press." It still suggests that he believes that researchers lie to the public and to fellow academics, but tell him the truth.

Heckenlively writes: "On one point I must take issue with is my saying that the Hopkins researchers "have a protocol." If I did that was a terrible misstatement on my part. I have never believed that this was a "Hopkins protocol", simply that it was based on findings from the Hopkins laboratory."

As to the assertion concerning a Hopkins protocol, that's not what the journal article says. No mention of a Hopkins protocol exists in the article, period, let alone relating to Heckenlively:

Patricia Kane, who calls herself "the queen of fatty acid therapy," initially sounds like a skeptic of alternative autism treatments. She distances herself from the Defeat Autism Now! approach and says hyperbaric oxygen therapy, IVIG and chelation drugs all can be harmful.

"If you could see what happens to children when they're given some of these crazy interventions that ruin their life, and it's so painful," said Kane, whose office is in New Jersey. "Parents say, 'Patricia Kane will tell us the truth,' and I believe parents deserve the medical truth when it comes to their children."

One of her fans is Kent Heckenlively, a California science teacher who writes for ageofautism.com, self-described as the "daily web newspaper of the autism epidemic." After spending "a couple of hundred thousands" on treatments, from chelation to stem cell therapy, for his daughter with autism, Heckenlively said Kane appealed to him in part because her protocol includes lab tests run by the prestigious Kennedy Krieger Institute.

"I can trust them, I think," Heckenlively said.

Kane, who points to neuroinflammation as a feature of autism, discusses Pardo's study in a chapter she co-wrote on autism treatments for the book "Food and Nutrients in Disease Management."

Kane says many children with autism have a buildup in their brains of a substance called very-long-chain fatty acids. Her "PK Protocol" -- named after her initials -- is aimed at burning them off with a prescription drug, phenylbutyrate, that is normally used to treat extremely rare genetic disorders in which ammonia builds up in the body.

Side effects of phenylbutyrate include vomiting, rectal bleeding, peptic ulcer disease, irregular heartbeat and depression. No clinical trials have evaluated this drug as an autism therapy, and the idea that very-long-chain fatty acids have a role in autism is not proven by science.

Kane is not a medical doctor. When treating children with autism, she says, she works in concert with the child's physician, who supervises treatment.

She said she holds a doctorate in nutrition that was issued by Columbia Pacific University, an unaccredited institution that was shut down after a lengthy court battle with the state of California. An administrative law judge in 1997 found that the school awarded excessive credit for prior experiential learning, failed to employ qualified faculty and didn't meet requirements for issuing degrees.

Kane said Columbia Pacific granted her a doctorate after the school "consolidated my work," which Kane described as "clinical work" and continuing medical education courses for doctors. Her doctorate is valid, she said, because it was issued before the university ran into problems with the state.

Last year she was the subject of a television news investigation about her work with patients with ALS, also known as Lou Gehrig's disease. The disease, which affects motor neurons, is a death sentence.

Janine Schiller, a Pennsylvania mother, went to see Kane. "Dr. Kane flat out told her: 'You do not have ALS,' " said her husband, Tim. "She told her: 'You have a buildup of neurotoxins in your blood.' "

Kane's protocol involved taking pills, medications and herbal remedies, which Kane sold, Tim Schiller said. In all, the family spent $3,000. But nothing stopped the march of ALS, and Janine Schiller died eight months after her diagnosis.

"The money was trivial compared to the false hope she instilled in us," Tim Schiller said. "It's a terrible thing to be preying on people who are going to be dying."

In her work with children who have autism, Kane emphasizes that she doesn't rely on what she calls "Mickey Mouse" labs to test for red cell fatty acids in patients' blood. She uses the Peroxisomal Diseases Laboratory at Kennedy Krieger.

But a spokeswoman for the institute said its autism experts do not endorse the use of phenylbutyrate to treat children with autism.

"There has been no research conducted at the institute which validates the use of phenylbutyrate as an autism treatment," Elise Babbitt-Welker wrote in an e-mail. "Any suggestion otherwise is a misinterpretation of research data."

Heckenlively admits he's using the Kane protocol but feels that it is unfair for the article to make it appear that this is risky on his part. He writes: "My daughter's neurologist did not have any safety concerns for the protocol although she did not think it would work. My neurologist has actively assisted me in providing sedatives for the IV procedure."

Whether that's accurate or not, we can't know. Did the neurologist advise Heckenlively of potential risks? She'd have to. Do doctors play up the risks or play them down? Or present them neutrally and allow the patients to way the relative risks and decide. On medications, it's been my experience that doctors rarely discuss the side effects; the prescribe and move on. No informed consent is needed on medications, so it's likely to depend on the patients as to whether the medication is simply prescribed or the risk/benefits discussed before hand.

Heckenlively does at least admit that the neurologist told him it was unlikely to help. This simply reaffirms that desperate people are willing to go down a whole lot of woo no matter the risks. That may be one thing when it's your own life. It's entirely another when it's an unconsenting minor relying on his or her parents to make medically sound judgments for him/her. You cannot, do not, make sound, rational judgments when you are mired in desperation, and the potential to do tremendous harm is vast. It's your job as a parent to breathe, calm your ass down, and think rationally. Presumably Heckenlively is an intelligent man, both a lawyer and a grade school teacher. Chasing chelation, stem cell therapy, and now this incredibly foolhardy PK Protocol among the other woo, shows pretty clearly that this isn't about rational thought. His defense today of his actions also indicate an unwillingness to clearly evaluate the risks and benefits and how it impacts not only his child, but the children of desperate parents who read him.

Need I remind you of the sticky blood? Need I remind you of his contention that he may not know exactly what it was in the vaccines but it was something in them?

Need I remind you of whale.to?


kathleen said...

So Heckenlively is so special that researchers confide in him-and yet skew their results in academic papers and to the public. How exactly do they give him this information? In dreams? Written communications...whispered asides at a coctail party? Where when and how? And even more importantly-What purpose would this serve? And yet, when it comes to lab testing he says "I can trust them, I think?" Perhaps he doesn't have any lab techs confiding in him?
As for Kane-according to her, her doctorate is valid because it was granted BEFORE the university ran into trouble with the state. Didn't said university run into trouble for practices they engaged in BEFORE they were caught by the state?
"Do doctors play up the risks or play them down?" I think that it depends on the doctor. Many months back on Oracs blog, I was involved in a rather heated discussion with Dr. Jay Gordon. In that discussion, he said that although he could not say whether or not an autistic childs improvements were due to chelation or normal development-he would not discourage a parent from seeking out chelation as a course of treatment for thie child.

Corina Becker said...

oh, please do mention sticky blood. Is it exactly what it sounds like, blood that is sticky? like, glue or something? So autism is people with sticky blood that's causing all their problems?

Cause I gotta tell you, my blood ain't sticky. Huh, there goes that causation theory.

Thelma said...

Lordy, lordy, but that Heckenlively teaches science, ain't that a kick in the pants ta think of. Been readin the interwebz and ran across this on the Heckenlively guy detailin his shenanigans on his poor little girl. http://www.sciencebasedmedicine.org/?p=510

Gotta member to add that in when ya are detailin what a fool an a dangerous one, to boot, this man is.

Thelma said...

"The stories of “Mary” and Mr. Heckenlively demonstrate one thing. Once a parent becomes ensconced in the cozy, reinforcing world of the biomed movement, it becomes very difficult for them to leave that support system, even when all the various promises that their children’s autism can be cured come to naught. A few ultimately abandon the movement and move on. (Indeed, parents like Jim Laidler did just that.) But many of them do not. Many of them, unfortunately, listen to the blandishments and keep trying. Some, like Mr. Heckenlively, will try fake stem cell therapies. Others will even try chemical castration." http://www.sciencebasedmedicine.org/?p=510

well, there ya go.