ANGER AND RUSH TO JUDGMENT
Many of us in the pro-biomedical community -- and I count myself in that number -- rushed to express our self-righteous anger at a medical system that we presumed was not allowing a Pennsylvania doctor to admit a child to a hospital as an out-patient for an intravenous procedure. Then I came to realize we did not know that for a fact, and we really know very little about what happened.
In a perfect world, parents of dysfunctional children (and not every child on the autistic spectrum meets that criterion) could wait for the years it will take to complete clinical studies of biomedical treatments in all their permutations. But many of us worry about the ability of our children to function independently as they grow into adulthood. The commonly reported experience among parents who practice biomedical interventions is that their children were steadily regressing until beginning the intervention, after which they observed steady improvement. Waiting until a child is approaching adolescence before deciding whether he or she will ever function independently is not a choice I would make for my son. So we choose to intervene biomedically, and part of that is chelation of heavy metals.
Does that mean we should jump at any potential treatment in the hopes of a “cure?” Only a fool would act so rashly. Like any course of treatment or intervention, potential benefits have to be weighed against real risks. And even the slightest risk requires safeguards. In general, mercury chelation with DMSA and/or DMPS has been performed safely, although continual monitoring and testing is required to ensure that no harm is done. As far as I know, IV-EDTA is not used for mercury chelation, but is sometimes used for lead chelation. And so I must assume that Abubakar tested high for lead.
Quite often, our kids test high for lead, which is probably due to the same glutathione deficiency that makes it impossible for our children to naturally excrete mercury. High lead levels obviously become a matter of concern. Many biomedical doctors, therefore, prescribe EDTA even though it is not part of the official DAN! protocol. The reason for using EDTA -- which is considered an acceptable treatment for lead poisoning -- as opposed to DMSA is that many of our children have fairly severe “gut” reactions to DMSA (the same reason many parents opt for DMPS to chelate mercury).
But chelating lead with IV-EDTA, a drug approved by the FDA for that purpose, should not be lethal. What happened? We don’t know, and we are so frustrated that we feel the need to get angry.
If our initial anger was predictable, the response by the anti-biomedical crowd to the child’s death was both predictable and perverse. Out of one side of the mouth, some said the incident proved that all chelation was unsafe. Out of the other side, the same people proclaimed that DMSA was the proven safe method for chelation of both lead and mercury. Which of those contradictory statements was true? Everywhere one looked on the web, fingers were pointed at the entire movement. On Kevin Leitch’s blog, I tried to address some of the sincere anger expressed by those who do not share my support of biomedical interventions. And I addressed our obligations in the biomedical community:
I agree with you that we in the biomedical community should not be pointing fingers at anyone right now. If we really want to claim Abubakar as our own, we must also take ownership of his death. We must actively seek answers no matter where they may lead, and we must be willing to accept whatever blame belongs with us. But don’t assign that blame until we know what happened.
What I thought was a pretty balanced statement drew fire. I had to explain to one person, who scolded me for trying to turn Abubakar into another Terry Schiavo, that all I meant by “taking ownership” was that those of us who felt a kinship to the Nadama family have “to earn that kinship by asking ourselves some difficult questions, even if they lead to answers we don’t like.”
A comment was left at Kevin’s blog by an anonymous (of course) person who called herself “Angry Mom:”
I also hope that the family of little Abubakar, the healthy little autistic boy who was beautiful and who ran happily in his family’s garden according to a neighbor, will become filled with anger at the autism biomed “community” and expose exactly who it is that convinced them their son was “mercury toxic” and what lab told them that and which doctors promised quicker recovery with IV chelation.
I hope his family ends up with everything now owned by Dr. Usman, Dr. Kerry, St. Martin’s press, David Kirby, Dr. Gary Gordon, Autismmedia, DAN!, Arianna Huffington, Craig Westover, Lenny Schafer, Rick Rollens, Dr. Byrd, Sallie Bernard, Mark Blaxill, Lyn Redwood, Lujene Clark, “moms against mercury”, “dads against mercury”, Dan Burton, Ginger Taylor, John Shestak, Poria Iverson, Rashid Buttar, Boyd Hayley, JB Handley, Dr. Deth, Any Holmes, Wade Rankin, the NAA, ASA, Autismlink, autism 1 and all the rest. That would be fair.
Wow. I must admit that I am extremely flattered to be mentioned in the company of people I consider to be heroes. I am afraid I’m being given a little too much credit. This blog has only been up since August 7, 2005, and nobody really noticed it until the last couple of weeks. I kind of doubt Dr. and Mrs. Nadama have ever heard of me, but if it puts me in a league with the other people mentioned, it would be worth the price of admission. I would be interested, however, to know from this “Angry Mom,” who is encouraging legal action against all of us, if she is one of the people who always accuse the anti-thimerosal movement of being litigation driven.
I still think we in the biomedical movement have a lot of questions to ask ourselves. But before we can even formulate those questions, we need to have more information. Was Abubakar’s death the result of an anaphylactic reaction, hypocalcemia, or some yet-to-be-thought-of reason? If hypocalcemia was the direct cause of death, was it brought on by a failure to replentish the child’s minerals, including calcium, with supplements, or did the doctor use Disodium EDTA rather than Calcium EDTA? Was the proper dosage used? Did the doctor perform all appropriate pre-procedure checks? Was the child properly monitored in between chelation procedures?
When we have the answer to all those questions, we’ll have a better idea of whether anyone needs to bear the blame for this tragedy. In the meantime, let’s try to respect a family that needs to mourn a child. Let’s all shelve our anger for a while. And let’s honor the Nadama family’s mourning by redoubling our own efforts to protect our own children. That includes learning all we can and being equal partners with our doctors.
I commend to you David Kirby’s latest post at The Huffington Post. Although Mr. Kirby doesn’t have all the answers and, in fact, seems to be unaware of the occasional lead problems in our kids, he asks a very important question. Why, four years after the Institute of Medicine called for studies of chelation’s effectiveness and safety, why are we still waiting for any studies to be undertaken?