Autism Study and Comments from Boyd Haley

Although Demi does not have autism, I follow the comments, research, and supplements closely because I believe many of the treatments for autism can potentially help Demi. Many kids with KS also have a diagnosis of autism, which further validates similarities between the two.

I found these comments from Boyd Haley interesting:

RESPONSE TO 2008 R. SCHECHTER AND J. GRETHER PUBLICATION "CONTINUING INCREASES IN AUTISM REPORTED TO CALIFORNIA'S DEVELOPMENTAL SERVICES SYSTEM" WHICH ADDRESSES CALIFORNIA DEPARTMENT OF DEVELOPMENT SERVICES DATA ON EVALUATION OF THE RELATIONSHIP BETWEEN THIMEROSAL AND AUTISM8
January 2008
by Boyd Haley, Professor of Chemistry,University of Kentucky, Lexington, KY

We should all consider that there are two top priorities in thevaccine/autism issue every American should be concerned with. We need to develop a safe vaccination program, and we need to find the causeof autism and eliminate it if possible. I have been a strong proponent of investigating thimerosal as the casual agent for autism spectrum disorders based on the biological science that shows thimerosal to be incredibly toxic, especially to infants. I know of nothing remotely as toxic as thimerosal that numerous infants would be exposed to before 3 to 4 years of age. Below I present several comments regarding this issue and the 2008 Schechter-Grether study that I think are relevant. Mainly, while the Schechter-Grether study appears to be a well done study it suffers from the fatal flaw of assuming that thimerosal was removed to safe levels in vaccines by 2002. They also cut a fine edge as to time when a significant drop in autism rates would be expected. Further, no study exists that proves our vaccine schedule alone is safe, let alone the current one that still exposes infants to thimerosal, a concern they do not address. The alarming concern is that these authors seem more involved at providing material saying thimerosal is safe than they are concernedwith the obvious fact, openly presented in their own data on autism rates, which strongly indicated that increased rates of autism started with the CDC mandated vaccine program. References to support the comments are readily available in many recent publications.

1. Autism was not a known, described illness until about 1941-3, 8 to 10 years after the introduction of thimerosal and similar organicthiol-mercury compounds in biological mixtures used in medicine and other areas. This argues against autism being a genetic illness.

2. In 1977, 10 of 13 infants treated in a single hospital bytopical application of thimerosal for umbilical cord infections died of mercury toxicity. This same topical was used on adolescents without obvious ill effects which strongly supports the concept that infants are very susceptible to thimerosal toxicity.

3. The recent increase (starting about 1990) of autism spectrum disorders correlated well with the advent of the CDC mandated vaccine program which increased thimerosal exposures with increased vaccinations. Due to its toxicity, thimerosal would have to be suspect for causing autism.

4. As expected by science, extensive searching for a genetic cause of autism has not turned up a significant find that would explain the recent increased rate in autism. The latest genetic find, at best, might explain 0.5% of autism causation. Most agree that a genetic predisposition is likely (like those that lead to low glutathione levels), but that a toxic exposure is absolutely needed. Consider also, that this increased toxic exposure would have had to occur in all 50 states at about the same time as all states have reported similar increases in autism rates. Only something like the government recommended vaccine program fits this need for a time dependent, uniform exposure of a toxin throughout all the states.

5. In the Schechter-Grether study it is implied or assumed that all thimerosal containing vaccines were gone by the end of 2002 due to their expiration dates. I don't think this is a valid assumption. I have talked to mothers who asked to see the vaccine inserts as late as 2004 and found thimerosal present as a preservative in infant vaccines being used in certain clinics. Also, in 2004 the influenza vaccine was recommended by the CDC for infants 6 months of age and older. It would appear as if a thimerosal free vaccine time-frame would be very hard to identify, if one ever existed. I have read that the average age of autism diagnosis is near 44 months of age. Therefore, while it does seem reasonable to expect a decrease in autism after 4 to 5 years of complete thimerosal removal, assuming a consistent diagnostic protocol was used, it appears this has not been accomplished. This means the Schechter-Grether study is likely somewhat premature in reaching the conclusions reported in that enough time has not passed for the expected decrease to occur and that they were quite optimistic in identifying the dates of thimerosal reduction and underestimate exposures occurring between 2002-4.

6. If, indeed, the complete removal of thimerosal from vaccines was not followed in an appropriate time by a decrease in autism then this would be solid proof that thimerosal was not causal for autism. However, thimerosal has not been completely removed from vaccines and thimerosal used at the original levels in the manufacturing of these vaccines with "trace" amounts left in the vaccines when bottled. I don't know what level "trace" is since it is not a term used in science to describe an actual amount. Some called the 12.5 microgramsmercury in the older vaccines a "trace" amount. Bottom line, the infants are still getting some level of thimerosal, a "trace" amount that is free and an amount of ethylmercury that is bound to the proteins that induce the immune response. If vaccines are causing autism and it appears this is a strong possibility based on the California data and, if removing thimerosal added as a preservative really does not reduce the autism rate then the causation is much more complex.

Consider the possibilities that:
A. Autism may be caused by a thimerosal modified protein that sets off an immune response or causes some other biological reaction that can cascade with injurious effects. Since the vaccines are manufactured with thimerosal present in abundance it is quite likely that any cysteine containing proteins would be modified with ethylmercury. Removal of most of the free thimerosal (or just not adding it) would not decrease the level of any toxic modified protein produced during the vaccines production that might be causal. Removing the thimerosal added as a preservative would not decrease the amount of this ethylmercury modified protein in those vaccines with "trace" thimerosal levels.B. That autism could be caused in susceptible individuals by very low thimerosal or ethylmercury modified protein exposures due to their genetic susceptibility or other factors (general health, gender). In this scenario the higher thimerosal exposures are not required and the induction of autism is not thimerosal concentration dependent at the old and new thimerosal vaccine levels, but just requires a significant exposure level that is met by the vaccines containing the lower"trace" amounts of thimerosal and past thimerosal levels in vaccine production processes. Bottom line, if genetic susceptibility is involved then causation of autism may not increase linearly with increased thimerosal exposure. Causation may only require low thimerosal exposure or exposure to modified proteins. It is possible that the reduction of thimerosal as in the "trace" was just not enough to produce a safe vaccine. Not all toxins work like alcohol and the old "dose makes the toxin" is not always correct. As long as they are used, the mere use of "trace" thimerosal in vaccines along with higher levels in the flu vaccine will always prevent a conclusive answer to thimerosal's involvement in autism causation. What should be studied is the "no exposure" versus the "exposed" populations with regard to autism rates.

7. If indeed autism is rare among the non-vaccinated Amish populations, as reported by Dan Olmstead, I find it an amazingly oversight that the CDC and others responsible for infant health do not fund a study in this area. This study could go both ways, if theAmish have autism rates identical with the rest of the population the argument would be over---neither vaccines nor thimerosal would be causal for autism, and I personally would argue in this direction. If, however, the autism rates in the Amish are exceptionally low then vaccines would have to be considered as a prime suspect in causation with the presence of the highly toxic thimerosal the main suspect. If the results in the 2008 Schechter-Grether study hold up with time, and complete removal of thimerosal does not cause a drop in autism rates and the autism rates in non-vaccinated populations are low then something else in the vaccines would have to be considered the major causation factor for autism. However, without doing the non-vaccinated population studies there cannot be a conclusive statement either way about either vaccines or thimerosal as being causal for autism. The steadfast refusal of the CDC and others to support such studies being done is part of the reason that many parents, scientists and physicians have severe doubts about the sincerity of their efforts to resolve this issue. This is how I think, when I review a paper submitted for publication I always ask why an obvious experiment wasn't done. The study of non-vaccinated populations is a very obvious experiment that the CDC and its supporters appear to refuse to consider. This makes me suspicious that this knowledge exists and is being suppressed because knowledge of the rate among the non-vaccinated population would answer many questions.

Finally, the Schechter-Grether study may be good news to the vaccine manufacturers and those who recommended and use the mandated vaccine program as it serves as manufactured uncertainty about the thimerosal involvement in autism causation. However, it presents a major concern to the parents and families of infants since it implies that our vaccines, even with most of the free thimerosal removed, may not be safe and that our CDC does not have a clue about what to do make them safe. Common sense would lead most to attack finding the cause of autism instead of trying to prove something besides thimerosal is causal. The major question is "are our vaccines causing autism"---only comparing the non-vaccinated to the vaccinated will answer this question. Common sense would have lead to this comparison being done first and being done 10-15 years ago. In the recent past I have recommended that parents vaccinate their children with thimerosal free vaccines as I considered them safe. If Schechter-Grether are correct, and vaccines, but not thimerosal, correlate with increased autism rates, then I am in error assuming vaccines are now safer with regards to autism risk than they were 2000.

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Update: Serious Health Issues

When I went back to check when I had last updated about my aunt's serious health condition, I could only find something back in August '06. Did I never give any other updates?? Anyway, here goes.

Diagnosed with serious health condition in July (lungs), started NCD in August, surgery in September (never measured before surgery), followed by radiation and chemo and such things that might treat a serious health condition. She took NCD on and off as she could remember it. She eventually healed from the surgery, suffered through the treatments and was pronounced serious-health-condition-free in April '07. Yea! Celebration!

However, the joy was not to last. Less than two months later, her next check up revealed that it had returned. :( This time, however, because of the difficult time she had had with previous treatments, they told her there was very little they could do for her. After numerous tests, they finally told her that she could undergo another difficult surgery to remove it, but there was a chance, if it was in a certain place, that they would not be able to do anything.

So, last October, she elected for the surgery as the only recourse against the serious health condition invading her body. Unfortunately, they discovered that it was in such a place that they could do nothing to help, so they sewed her back up. She has slowly been healing from that ordeal. In late November '07, she decided, since she had no other recourse, that she would give NCD another try, so she started taking it more regularly, trying diligently to take 15 drops at least 3 times/day.

In early December, I called to see how she was doing, only to find that she was out Christmas shopping for the second day in a row and was feeling great. She had told her husband once, while in the process of taking her drops of Natural Cellular Defense, that she wasn't sure if it was the NCD or not, but she sure felt more energetic.

Earlier this week, I spoke to her again. She reported that she had come down with a cold a couple of weeks ago, so she stopped taking the NCD. Once her cold was mostly gone, she resumed the NCD and immediately felt peppier. She says now that she really thinks it's doing something for her. And we're still praying for her miracle.

She doctors have told her officially that she has about 6 months left. We have a family reunion scheduled in June. We're planning a Miracle Celebration that weekend for her because she WILL still be there to celebrate!

Demi's Progress

I'm so proud of Demi's progress in school!

When school let out for Christmas break, Demi's special ed teacher gave us a list of things to work on, including working with coins, counting, writing, and reading. She gave us three new readers to work through, two with new words and a third review one.

Just about each day of Christmas break, we worked at least a little bit each day on homework. We're making progress on the coins - she knows all of the coin amounts, but she had trouble identifying them. Writing is a struggle. She can pretty much do all the numbers and capital letters (with a couple of exceptions) and we're starting on the lower case letters. Her progress in reading is the easiest to measure, since each reader has a definitive test before moving on to the next. After finishing the 10th reader, she has about 30 words and can sound out countless more.

Over Christmas, we saw Demi's grandmother (a 3rd grade teacher in SD) and a cousin (a kindergarten teacher in CO). Both of them said that Demi was way ahead of the kindergarten classes they knew. Their kindergartners were still working on letters and wouldn't get to blending sounds into words until the spring. (I believe that's a function of GA's preK program and an excellent school district.) I was so proud of Demi when she could read each of them a story from her reader! She's working so hard!

I remember a year or so ago when I heard about another Kabuki child reading in kindergarten. I was so surprised, amazed, and encouraged. I feel the same way with Demi. That's what makes me continue the regimen that she has. Anything I can do to help her body and mind function better will help.

Our ALA Experiment

I'd read a lot on AutismNCD about using ALA as a natural, gentle chelator to get to metals in the brain. I read about some people using it in conjunction with DMSA, others with NCD. I read about the Cutler protocol, which calls for frequent low doses given on a strict schedule every three hours (4 hrs at night) around the clock for three days (then 4 days off). Apparently, the reason behind the strict dosing is that ALA can release metals from the brain, but, if more ALA (or some other chelator?) is not given regularly, those metals might redistribute elsewhere in the body, which we obviously don't want.

I initally started Demi on ALA in conjunction with NCD in early November. Since I'm confident that NCD (she's on 10 drops/3x/day) will mop up anything that ALA breaks loose, I didn't worry about the strict dosing. Plus, I'm not that great with strict dosing anyway. I'm very good about giving supplements at breakfast and supper, but anything in between (that can't be put in a lunch drink) would likely get forgotten.

So, initially, her doses of ALA were anything but regular, typically a couple doses each evening after school and haphazardly on the weekend. Not great, I know. Shame on me. Even so, I thought it helped her a little - nothing dramatic, could have been the rose-colored glasses effect.

Eventually, it got so haphazard that I stopped it completely until I could get a better schedule together. Once Christmas break came around, I decided to stick to a regular schedule for the ALA - during the day, that is. My plan was 5 doses (25mg/dose)/day. I had to set alarms to go off so I'd remember!

So, that's what we've been doing for the last 10 days. I can't really tell yet if it's working. I've read it usually takes 100 rounds (two years) to "work" so I'm not sure what to expect short term.

Supplements and More Supplements

Although I started slow, I have built up quite a cadre of supplements for Demi. It seems like a lot, but it's really not. I've read of autistic kids getting close to 50 supplements a day. Now, THAT's a lot!

What I give her and why:
1. Natural Cellular Defense from Waiora - liquid zeolite - for general detoxification, including mopping up any toxins/metals knocked loose by other supplements. For continuing maintenance as well as continued improvement. Demi saw gains on NCD alone for quite a while, but then plateaued. I continue to give it so that she gets the most out of the other supplements she takes as well.

2. Fish Oil - EPA/DHA - for general brain function, omega fatty acids. There's a theory of decreased myelination with Kabuki syndrome, which means the sheath around the nerves is not properly formed. I think additional fatty acids could assist in building up that sheath (which would improve neurological function in general), and they certainly won't hurt!

3. Juice Plus - for general wholefood nutritional support of fruits and vegetables. She does pretty well with vegetables, but she usually won't touch fruit.

4. Essential Daily Nutrients from Waiora - general nutritional support plus several beneficial trace minerals, additional wholefood goodness.

5. ALA - Alpha Lipoic Acid - antioxidant which acts as a gentle chelator, supposedly crossing the blood brain barrier. NCD picks up the metals knocked loose by ALA (hopefully). We've been using this on aggressively since she's been out on school break for the last week. It seems to be doing some good. She seemed to pick up more easily on her latest round of sight words - not nearly as much drilling as the last round. Could be my rose-colored glasses again...

6. ProCulture Gold probiotic - for improved intestinal flora and digestive support

7. SaccB - for fighting yeast, which sometimes increases when getting rid of metals

8. ThreeLac - for fighting yeast

9. GABA - for calming and slowing the brain down. Kind of the opposite of glutathione (which did not test well for Demi). Just started this one today - we'll see how it goes.

10. Zinc - Good to supplements with NCD, plus she tested at 100% for it, which supposedly means that her body needs it.

11. Digestive Enzymes - for digestive support

12. Homeopathic Insecticides - to get rid of insecticide toxins

13. L. Acidophillus - I haven't started this yet, but I have it on hand in case she has to get another round of antibiotics (which I try to avoid). It helps restore the good bacteria in the gut to maintain digestive health.

I think that's all. That's enough for me to keep track of right now!