Homemade Remedies
August 2, 2008 by Kristina Chew, PhD
Filed under Health
“invented it in his kitchen”
That, according to a member of the staff of San Antonio dentist Dr. Paul G. Wilke, is where and how Professor Boyd Haley created a chemical compound to be marketed as a nutritional supplement under the name of OSR—”Oxidative Stress Relief.” Haley is a member of the Chemistry Department of the University of Kentucky and Kathleen Seidel of the Neurodiversity weblog has written an extensive review of Haley’s development of this supplement, out of concerns from recent online discussions of OSR which
“…..raise many questions about the manner in which this product has been represented to the U.S. Food and Drug Administration, and the manner in which it is being promoted for consumption by autistic children.
Seidel’s post is in the form of a letter to James W. Tracy, Vice President for Research at the University of Kentucky; Ada Sue Selwitz, Director of the University of Kentucky Office of Research Integrity; and Helene Lake-Bullock, Research Compliance Officer, University of Kentucky Office of Research Integrity. A reading of Seidel’s post suggests that parents are very much in search of a magic supplement that will “cure” their child from autism or at least significantly help her or him, and that they are willing to pay quite a bit and do not seem to hesitate to give a child something that contains “chemicals clearly labeled ‘for research and development use only,’ one of which has been designated an Investigational New Drug.”
Seidel notes that the aforemention Dr. Wilke announced on an Autism Speaks discussion forum that he had a supply of OSR and “welcomed readers to visit his website,” Alternative Cosmetic Dentistry. It was Dr. Wilke’s office that Seidel contacted on July 29th, and by whom she was told that OSR was “invented” in the kitchen of Professor Haley—-and this reminded me of something I was told some years ago about the creation of another nutritional supplement marketed to parents of autistic children.
The supplement was a multivitamin in liquid form, Brainchild. At the time I was talking to a DAN! practitioner (I say that “I was talking” to her because the one time I told her that Charlie had to come to the appointment, she was visibly miffed; that was the next-to-final reason I decided it was high time to stop pursuing the whole biomedical thing). The DAN!’s office sold BrainChild (only available through them, they told me) and the office staff told me that I was lucky to get a bottle as they only received the product sporadically, when the man who made it was able to “mix up a vat of the goo.”
It was goo. Sort of a creamy tan color with speckles, a vaguely fruity-sweet smell, and viscous as shampoo. I gave some to Charlie but that “goo” comment, and the image of “some guy” mixing up pots of potion, I mean supplements, like so much voodoo stayed with me and was one of the reasons we drifted away from biomedical approaches (more about why is here).
I felt a great sense of relief when we decided we’d no longer pursue the biomedical treatments. I found that they caused more stress than anything, and for results that always seemed immediate and brief, if seen at all. And if some sort of dramatic change did not occur in Charlie, it was constantly recommended that we try some additional supplement, that we weren’t doing the diet quite right, that we just hadn’t found the right combination and what about some more testing…….
From then on, the remedies, if they may be called such, that we came to focus on were indeed “homemade” but from my own kitchen, not someone else’s, and made in the RevereWare pots my great aunt had given Jim and me for our wedding. I’ve always cooked for Charlie and he likes to watch the processes, the washing and the chopping; heating a pan with some oil and sautéing; adding ingredients and a dash of soy sauce and green onions and ginger and garlic; uncovering a pan of salmon, steamed till it’s just gone from gelatinous and raw to a lighter pink. He also loves to watch me assemble Vietnamese spring rolls, to dip his fingers in the bowl in which the rice paper wrappers are soaking and to watch as I roll up little packets of rice noodles, green onions, carrot slivers, shrimp. We’ve also moved onto mixing brownies and smashing ground beef into hamburgers. (Yes, we have thought that Charlie might enjoy working some day in the kitchen of a cafeteria or restaurant.)
I know what goes on in my kitchen, whose counters I wipe down every night, and I know what goes into the food we make for Charlie. Professor Haley has created a corporation that is now called CTI Science; as Seidel notes, the “Kentucky Department of State currently indicates that CTI Science is currently an active corporation in bad standing.”
Think I’ll stick to my own homemade products, until further notice.
Hey, I invent stuff in my kitchen, too! It’s that thing that mothers and housewives do.
I’ll trade you a jar of spiced blueberry jam for a few of those spring rolls.
Hi there
I’m a teacher/educator whose worked with kids, and now adults, with autism for years and years. In all of those 25 something years, so many fads have come and (hopefully) mostly gone away. Diets, supplements, wacky “communication” techniques, etc. The most effective teaching tools, in the people I’ve been with, are ABA both strict and not so strict (but always changing with the needs of the individual), incidental learning, consistency in expectations, love (should have been the first in the list), promoting as much independence as possible, exposure to new toys, movies, places,etc., and flexibility. None of those things are “miracle cures”, all involve hard work on the part of the individual and the teachers, and all require paying close attention and celebrating the little steps along the way. No jars of “goo”!!!! Michele
@Michele,
Love’s the first and last of it
@Kathleen,
Now that sounds like fair trade, except spring rolls don’t travel well—-they’re meant for immediate consumption! But one could send on the ingredients……
All that talk about cooking is making me hungry! But more for your stuff that “vats of goo!”
Yes, we’ve been down the vitamin water and supplement path and on the verge of bankruptcy. All in search of the miracle cure. I had a parent come in and talk about doing chelation therapy for her 17 yr old the other day! Voo doo is right.
D.
Kathleen’s blog post gave me an extremely uneasy feeling…and one excerpt in particular from someone who has apparently tried everything for years with no change but is staking it on this most recent incarnation of the cure.
Recently I have spent alot of time appreciating what a happy person Eleanor is, my right hand girl, and enthusiastic sous chef. In a little bit we’re heading out to the farmer’s market and then the fishmonger’s where she will help figure out what homemade thing we will be making tonight…together.
Wow, I feel really sick to my stomach. The damage that new “goo” could do to kids really scares me. And experimenting on a 20 month old child, I would call that child abuse.
Kathleen has done another masterfull writeup of her excellent investigation into this new “chelator/antioxidant”. I hope the folks at U of Kentucky realize how serious this is and give Boyd Haley the boot.
http://aegisofautism.stripgenerator.com/2008/08/03/dear-dr-boyd-haley-i-have-a-70-pound-cat.html
“Dear Dr. Boyd Haley, I have a 70 pound autistic “cat” named Michael. He was probably poisoned by his shots or something. Who is selling your chelato– um I mean antioxidant? How much does it cost to cure my 70 pound autistic “cat”? Would it work faster if I gave him more and if we did it by IV? I have some tubing here in the garage…”
You know… when I read that first sentence, the immediate fleeting thought was “what, are we using methamphetamine on autistics?”
That aside, I might as well have kept the associated notion of concern, because this is about as ridiculous to consider. I mean, it seems like you can put a term with some maybe-possibly-ish related root and associate it to whatever substance you’ve made out of “Little Chemist” kit, and it’s fit to medicate autistic children with.
Cliff
The whole “vat of goo” brings back a memory from more than 5 years ago.
I remember getting an alert from a pharmaceutical company faxed to me in the office. Apparently one of their antibiotics had been faked by some people who were selling it on the internet through one of the internet drug stores. When the police raided them, they found that they were mixing the “antibiotic” in the bathtub.
It made me really leery of buying any medications except through the hospital or the local pharmacy.
My special homemade remedy…chocolate chip cookies!
Yikes! When I was about 7 and the school talked to my parents about “attention difficulties”, I remember we got some vitamin supplement that was supposed to enhance attention. It didn’t do what it said it would, but at least it was harmless.
I’m surprised that this Haley person hasn’t gotten in trouble for these shenanigans.
“I felt a great sense of relief when we decided we’d no longer pursue the biomedical treatments. I found that they caused more stress than anything, and for results that always seemed immediate and brief, if seen at all. And if some sort of dramatic change did not occur in Charlie, it was constantly recommended that we try some additional supplement, that we weren’t doing the diet quite right, that we just hadn’t found the right combination and what about some more testing…….”
This was also our experience, what a relief it was to leave all the experimenting behind and just love our son.
Because of Sharyl Attkisson’s recent reporting, I ended up browsing through FDA and congressional documents looking at the larger picture. Doing so, a question presented itself–on one hand a segment of the public demands absolute surety and warranty from pharmaceutical firms and prescribing physicians, yet simultaneously seem willing to purchase products via the internet from individuals and firms which do not fall under the same contraindication and side-effect disclosures and can provide disclaimer not to treat any illness or disorder. In the case of OSR there also seems to be informal solicitation to participate in an impromptu and unregulated child-subject drug trial since, strictly speaking, the FDA seemed to state that the compound does not fall under the category of supplement, which such as Brainchild seems to meet as a multivitamin.
What is the recourse of the consumer if it turns out that OSR, given its ambiguous status, is not as safe as is currently asserted? Will potential side effects be seen as such, or documentation of “getting the toxins out”?
Kathleen Seidel received a reply from the University of Kentucky, and she’s posted some very interesting information on the chemical structure and properties of OSR.
Boyd Haley is a highly respected researcher in the field of autism who is looking at autism for what it is – a medical disorder. He’s not trying to pull the wool over anyone’s eyes and he’s not trying to get rich with OSR. He’s trying to make available a product that will eliminate the heavy metals that are overloading the nervous and immune systems of these kids without stripping their bodies of other nutrients like the FDA approved chelation drugs do. Unlike most of the scientists and medical professionals working to help those with autism he does NOT have a child or grandchild with autism. He speaks at numerous conferences, spends hours doing research, and has come up with what may be a viable alternative to what is currently available to remove heavy metals.
For those who don’t know, there are MANY products on the marker already that are over-the-counter and are being using to remove heavy metals. Some of these products really ARE dangerous. Don’t count on the FDA to protect you from dangerous drugs. It has failed miserable at that already – remember Vioxx, Bextra, Thalidomide, the rotavirus vaccine? You’re probably much safer taking OSR than some of the FDA’s approved drugs.
I’m the mother of an 11 year old boy with autism, and a pharmacist, so I know from where I speak.
The belief that heavy metal poisoning has anything to do with autism is a theory, so “treatments” meant to rid children of such are based on an unproven theory of autism causation.
Laura,
That’s a fine testimonial, but none of the statements, even the indicting statements about the FDA, are immediately relevant to either the efficacy or safety of OSR.
Thank you for your post Laura.
Kathleen Siedel really just needs to go get a life. All your posts hating on Boyd Haley are ridiculous and based on lies.
Kathleen Siedel could be the anti-christ for all we know.
Maybe you all should focus on all the fast food and crap that is sold to children, and leave a man alone that is trying to help them.
While your biased, cynical, and pathetic perceptions about this supplement go unchallenged by the herd visiting this site, my son is on his way to recovery using OSR. I am praying for you…no seriously…I am praying for you.
It’s been a month more of OSR for your son. Can you give an update? Any improvements???
I don’t care if he invented it in his bathroom reading the morning paper!
Thank you Dr Haley!
My own brilliant rheumatologist who is successfully curing me of CFS (I’m at 98% of normal now) has evaluated Dr. Haley’s research and is now starting to use OSR to chelate metals from his patients. He found research that stated that heavy metals somehow allow infections to hide from antibiotics and the immune system. There is also research that cilantro can help chelate heavy metals too. Cilantro pesto and Thai salads with cilantro anyone?
My doc understands the chemistry and his interest is good enough for me!
My son has medically diagnosed heavy metal poisoning, his body is not able to detox on its own, yes, he is autistic, any product that could help him to have a quality of life (eating a range of foods and pooping on his own would be a good start) is worth trying. 13yrs of Pharma products hasn’t done any good and yes, contributed to more problems. I don’t care who “invents” things. If they work, they are worth a shot. After all, some people think that chemotherapy drugs will “help” their cancer. For others, it makes their hair fall out. Doubt an antioxidant will do that, given the trials on rats at doses 100x the r.d.i. showed no illeffect — done by the FDA.