I have a BIG problem with this—and all cancer quackery—and that's informed consent. Quacks always overpromise and underestimate the risks. Also, these parents are the victims of a con and that's how I view these cases, as examples of fraud that actively harms the child.https://twitter.com/ABatemanHouse/status/1040657617109086210 …
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Here's an even bigger problem with this. The child is a separate entity, and subjecting a child to a completely unproven treatment ignores the rights of that child as a separate entity with his own rights. That the parents worked for the money matters not at all to me.
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Replying to @gorskon
We let parents make kids' medical decisions unless convicted of child abuse/deemed incompetent/etc; often parents chose things we may not support. If evidence that desired intervention is harmful, we should go 2 court. But if no evidence either way....leave it to the parents IMHO
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Replying to @ABatemanHouse @gorskon
I have been in the position of debating, at least w myself, whether parents taking their dying child to a quack is reportable abuse. It's a VERY difficult step to take; I have never done it.
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Replying to @SteveJoffe @ABatemanHouse
How about if the treatment involves repeated cerebral angiographies (up to 18) under general anesthesia (most of the kids are under 8) and the unnecessary placement of an Ommaya reservoir for intrathecal chemotherapy that is not indicated (resulting in one death that I know of)?
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Replying to @gorskon @SteveJoffe
If there is a death that was directly related to the intervention, then this clinic's intervention doesn't meet my defined parameters in which parental choice rules (where there is no evidence to either support or not support an experimental intervention)
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Replying to @ABatemanHouse @gorskon
I don't recall, have there been deaths of kids related to Burzynski's "treatment?"
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Replying to @SteveJoffe @ABatemanHouse
At least one due to hypernatremia (that we know of). The PICU staff at Texas Children's Hospital hates Burzynski because they get to try to salvage his complications.
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Replying to @gorskon @ABatemanHouse
Yes, I remember talking to them when one of my patients showed up there with electrolyte derangements. I suspect by now they have a pathway and standard order set built into their electronic medical record for these patients.
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Well, given that they most common complication is serious hypernatremia, the treatment pathway for hypernatremia would probably suffice. OTOH, they all also have cancer, most of them brain tumors of some sort.
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