A fellow blogger asked me to “google chelation and death" before going down that road. He was concerned and a firm believer AGAINST chelation. He blogs as a parent of an autistic child. He is also a doctor. He says that his stand is as a parent and not a doctor. However, today he has reversed that. I understand his predicament. He is a doctor and has taken an oath. He vowed to follow "hard-won scientific gains of those physicians in whose steps he walks and gladly share such knowledge" with the rest of us.
To him I respond that I value his opinion as a parent but I can't not take his advice as a doctor. He is a doctor who likely received 10 minutes of autism education in medical school. I don't know how old my "doctor blogger friend" is but during med school he might have been told the course of action is to institutionalize the child immediately. He should get the child out of the dreadful hands of his refrigerator mom! Or during med school he might have been told that the child with autism is not going to grow up to be functional or live on his own. Proper action would be to refer the parents to get counseling for themselves to deal with the sadness and suggest they get their affairs in order so that someone will be able to care for the child after they are gone.
I am 100% sure that his 10 minutes did not teach him that each of these children is different yet many have similar medical ailments. I doubt that he was taught in medical school that there are medical issues underlying some of their symptoms. I doubt that they told him that an autistic patient wouldn't have constipation or diarrhea because he is autistic but rather he might show autistic symptoms because something is causing him to have chronic constipation or diarrhea.
Now, don't get me wrong. My doctor friend probably knows a lot of this because he has an autistic child. In that respect I value his input. He even advised me in my own comment section a few days ago that ...
"And if a doctor tells you that something is OK, then it can't really be bad, right? Wrong."
Question everything. We are told over and over again to look at the studies and the science. I would really like to. I would really feel much better knowing that the experts have the answers. But there just isn't much out there. Our government is too busy counting our kids and spending their money looking for these new transforming genes that decided to go ballistic and alter the lives of this generation of children. Unfortunately, what studies are out there can be refuted in a number of ways. And I am talking about the studies on both sides of the debate!
Question everything. We are told over and over again to look at the studies and the science. I would really like to. I would really feel much better knowing that the experts have the answers. But there just isn't much out there. Our government is too busy counting our kids and spending their money looking for these new transforming genes that decided to go ballistic and alter the lives of this generation of children. Unfortunately, what studies are out there can be refuted in a number of ways. And I am talking about the studies on both sides of the debate!
I am not a moron. I have had a number of science and statistics courses in my lifetime. I have a masters degree. I know how to read and write and jump through hoops. That is really all my claim to "higher education" should convince you of. I even did my time in business management and know how numbers can be tweaked to substantiate a cause. And I see this happening on both sides of the debate. I don't know who to believe. Frankly, I don't think I really am truly committed to either side. So instead, I tried to look outside the autism community to help make our decision.
Yes, I googled "chelation and death". In fact, I did it a couple of years ago. It turns up LOTs of links. However, once you start looking at them it turns out that most of them are fellow bloggers spouting off hot air. Just like I am doing now.
So I researched chelation again at the request of my fellow parent blogger who happens to be a doctor. Again, all I find of substance is 3 documented deaths between the years of 2003 and 2005. In each case there was also discussion as to a medical mishaps between calcium and sodium EDTA. Also in the two first cases, Autism wasn’t even a factor. Yes, the third case, Abubakar Tariq Nadama, was being treated for Autism. Rest assured, I do not take any of these deaths lightly and I do take notice to that much of the discussion is about whether Tariq should have been receiving chelation in the first place for mercury toxicity.
However, in my search for answers over a year and a half ago, I also found from a review of “medical peer reviewed journals” (aka the bible to you in the medical community) that stated that American medicine frequently causes more harm than good. Here are some statistics that they provided:
These number are real and tangible. Here is the link. If you find that provider suspect I suggest you check the stats through the CDC or IOM. The numbers are all over. I chose this source because they made the nice little table for me to share with you.Those numbers are scary but then you have to wonder how accurate they even are. Generally speaking, doctors are taught that mistakes are unacceptable. And truthfully, we want our doctors to be infallible because one tiny mistake could cost a human life. So how many medical accidents are out there that we don’t even hear about?
One study in the UK found that only 25% of their adverse incidents WERE REPORTED. (75% were not!!!) Why not? For reason of protecting staff or preserving reputations or out of fear of lawsuits. Another analysis found that only 1.5 percent of all adverse events resulted in an incident report, and only 6 percent of adverse drug events were identified properly.
Okay, so my next train of thought was considering the passion/anger out there about chelation treatments for autism I was confident that if there is a serious event…it was going to make the news! People are chomping at the bit to prove the dangers of this treatment. I am hoping that this means that a death from chelation could NOT get swept under the rug! Still there is little out there.
So after A LOT of thought and consideration we went with our research. JP had lots of gains with diet, gut issues and supplementation. We had blood, urine, and stool tests showing our son's current health. We started transdermal (not IV) chelation with our son over a year ago. I have no regrets.
He has been a great responder and the changes from his biomedicals and behavioral programs this past year have been 10 fold more than the year previous with only behavioral supports in place. We have tests showing metals flowing out of him. We have lab tests showing that he had lots of metals but no mercury in his blood, urine, stool, hair before chelation. This was a red flag as we should all have some mercury coming out of our bodies. After all mercury is in the world we live. This red flag meant that his body was not naturally detoxifying for him. We cautiously tried chelation and have found that mercury is now leaving his body.
After we began chelating, Abubakar Tariq Nadama died. Believe me I studied the case. However, that case again showed a medical confusion between Calcium and Sodium EDTA . As unfortunate as his death was, I see his death as resulting from medical error not chelation itself. Yes, he might still be alive if his family had not been doing chelation therapy but then he might be here talking with his parents about his day at school had the doctors not mixed up the types of medications.
(His parents reported that he had made gains from his previous chelation sessions.)
We are following a much different protocol with JP and approaching the detox process much slower. We are being much more conservative. Actually, I am not aware of any families doing IV chelation. I suppose they are out there but this has not been an option even discussed with either DAN doctor we have consulted.
We are on hiatus right now just as a precaution letting JP's body rest for a few months. There was no medical necessity but we chose to take it slow. But we will be continuing.
I just want to post my thoughts regarding chelation. I left this detail out of my initially "outing myself" post. Chelation is a big step. Not all families that are persuing biomedicals proceed to chelation. And I don't want anyone to turn their back on biomedicals because they feel pressured to chelate. But I want my voice heard. Not every family we know has seen dramatic gains with chelation. But some have. We have.
JP is making great gains and truly showing a love for life and the people around him. I don't question if we are doing the right thing. My answer is in his face and demeanor. We are not seeking to cure him. He will always be autistic. He will always have quirks but now he shows them off proudly with a smile.
Yes, there are risks. Even the medical community will acknowledge that 98,000 people die every year from medical error. But there are only 3 documented chelation deaths since 2002. Interesting all 3 fit in that medical error category as well.
Just my two cents.
