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Subject: Porphyrin Testing and a Q & A with Dr. Boyd Haley; Crisis in Education for ASD Students - A Commentary by Dr. Valerie Paradiz
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Ocotber 4, 2006
US Autism & Asperger Association Weekly News
in this issue

Preview presentations from the 2006 conference
Porphyrin Testing - a Question and Answer Session with Dr. Boyd Haley
Crisis in Education for ASD Students - A Commentary by Dr. Valerie Paradiz

Welcome to USAAA Weekly News, an email newsletter that addresses a range of topics on Autism Spectrum Disorders and Asperger's Syndrome.

Porphyrin Testing - a Question and Answer Session with Dr. Boyd Haley

USAAA Weekly News recently spoke with Boyd Haley, PhD, former Chairman of the Department of Chemistry at the University of Kentucky, and currrently an active professor, to answer some questions that were posted to USAAA Weekly News about porphyrin levels. A recent presentation at the US Autism and Asperger Association International Conference in Park City, Utah this past August, "Evidence for Mercury Toxicity in Autism through Urinary Porphyrin Profiling, was presented by Robert Nataf, MD, director and founder of Laboratoire Philippe Auguste in Paris, France. Dr. Nataf recently reported a study of urinary porphyrins, markers of heavy metal exposure, in 269 children with neurodevelopmental disorders. The specific porphyrin profile in a subset of children with autistic syndrome points to mercury toxicity in this disorder.

Parents who attended Dr. Nataf’s presentation and later submitted urinary porphyrin testing kits to the laboratory in France posted questions to USAAA Weekly News.

USAAA: How much correlation, if any, is there between the urinary porphyrin test results and functioning; in other words, are higher and higher numbers correlated with worse functioning?
Dr. Haley - I don't know for certain. However, there are genetic illnesses (e.g. the one King George III had) where the products of an inhibited porphyrin pathway caused neurological problems.

There are some neurotypical kids being tested that have higher numbers in the three mercury categories than their ASD siblings and there seem to be kids with numbers in the 200's for coproporphyrin who function at a much lower level than some kids in the 400's.
I would propose that it be looked at with regards to whether or not the children have ever been on antibiotics, especially during the vaccination process. You see, porphyrins are made in many different organs, including the brain. The urinary porphyrins being measured are not primarily from the brain as these are minor. If the brain porphyrin metabolize is more affected in some children due to passage of the mercury across the blood-brain barrier (aided by antibiotics) then this might explain why some children with lower urinary levels could be more neurologically affected. Also, it would explain why Dr. Nataf could improve urinary porphyrin levels and yet, not improve noticeably the autistic symptoms. The mercury outside the central nervous system is more likely to be detoxed with DMSA than is the brain.

If you have high coproporphryin I&III, this is interpreted as high lead. But, when coproprphyrin I&III is high at the same time as pentacarboxy porphryin and precoporphyrin are also high, is high lead still indicated or high mercury?
Probably both.

If a child has been previously detoxed and has high mercury according to the urinary porphyrin test, does that mean that mercury was never completely detoxed before, ongoing/new exposure, or a combination of both? A child was detoxed three years ago and his recent coproporphyrin levels were over 500.
Obviously the mercury is still having its toxic effects and most likely was not totally removed or the child is experiencing new exposures. However, we do not know everything about the inhibition of porphyrin synthesis by mercury. Is it reversible in all cases or are the individuals polymorphic in the cpox-4 gene more permanently affected. Only research will tell us this.

What supplements, if any, are recommended to help uninhibit the uroporphyrin decarboxylase and coproporphryin oxidase enzymes?
I don't know of any that have been proven to work with these enzymes. I would guess the same supplements that reduce body levels of hg2+.

How are DAN physicians going to treat results that show high arsenic, aluminum, PCB's, and organic chemicals?
Again, I don't have all the answers. However, with inhibition of the porphyrin pathway you have a decreased ability to make heme. Heme is required by the detoxifying enzymes called p450 enzymes that oxidize and are essential in the removal of toxins like PCB's, and other organics like pesticides, herbicides, etc. Mercury is well known to inhibit its own excretion and I would assume it would inhibit the excretion of other heavy metals as well. We do need additional research to discover the best way to detox these children.

Dr. Haley spoke about biomarkers indicating mercury evidenced via urinary porphyrin tests in an interview with Teri Small earlier this year (featured in USAAA Weekly News, April 20, 2006). Dr. Haley states, "Heme is made from porphyrins – this is the first thing that the audience should understand – and the porphyrins start out in the mitochondria, coming off of products from the citric acid cycle. But it’s primarily made in the liver and kidney, although many cells can make porphyrins to some level. The main ones we make are in those two locations. The porphyrins, at the end of the porphyrin synthesis, if they follow through normally, we end up with a product called heme." He also points out that, "Porphyrins are the precursors to heme synthesis. Heme is the oxygen binding prosthetic group in hemoglobin and depletion of heme would affect oxygen delivery to the mitochondria and decrease energy production. Also, heme is a component of the electron transport system of mitochondria and a prosthetic group in the P450 enzymes which are fundamental in the detox of the body from many organic toxicants including pesticides and PCBs." To read to the entire interview, click here.
To read about Urinary Porphyrin Testing at the Laboratoire Philippe Auguste, click here.

Boyd Haley, PhD, is the former Chairman of the Department of Chemistry at the University of Kentucky from 1996-2005. An NIH Postdoctoral Scholar in the Department of Physiology, Yale University Medical School from 1971 to 1974, in the past 17 years, Dr. Haley has emphasized studies on the biochemistry of Alzheimer’s disease. His research in the biochemical aberrancies in Alzheimer’s disease also led to his identifying mercury toxicity as a major factor in this disease. He was one of the first to propose that the organic-mercury preservative (Thimerosal) in infant vaccines was the most likely toxic agent involved in Gulf War Syndrome and autism related disorders. Dr. Haley has testified before numerous government agencies on the effects of mercury toxicity from dental amalgams and vaccines. His articles include Reduced Levels of Mercury in First Baby Haircuts of Autistic Children, which was published in the International Journal of Toxicology.
Dr. Haley presented "The Effects of Synergistic Toxicities and Genetic Susceptibilities on the Toxic Effects of Inorganic and Organic Mercury Compounds: The Relationship to Autism and Related Disorders," at the USAAA 2006 International Conference in Park City, Utah. To preview his presentation, click here.

Crisis in Education for ASD Students - A Commentary by Dr. Valerie Paradiz

I am painfully reminded of the crisis in education that besets children with autism and Aspergers syndrome nationally by recent news articles depicting two families’ legal battles with their school districts.

Time Magazine’s September 17, 2006 story by Julie Rawe titled "Who Pays for Special Ed?" shows us a school district in Berthoud, Colorado willing to pay $191,000 in legal fees to challenge the Perkins family’s attempt to ensure that their autistic son is placed in a private school setting where he is safe and no longer suffering from the vacuum of knowledge in autism education that prevails in their educational community.

Similarly, the Patriot-News, on September 20, 2006, reports of a couple in Hampden Township, PA who are suing the Cumberland Valley School District for "a tragic and tortured account of gross negligence, deliberate indifference and unsympathetic discrimination by students and school personnel alike" in what amounts to several years of unremitting targeting and bullying, resulting in terrible emotional damage, of their son with Aspergers syndrome.

The special ed laws need to be reviewed and changed further in light of what we have learned over the last few years about the impact of a child's social and communication deficits resulting from even a mild form of ASD or Asperger's Syndrome. Attorney Lisa Krizman of Cherry Hill, NJ feels that the crux of the social issue for kids with ASDs in schools lies in the interpretation of LRE:

"Current efforts to situate HF ASD children in the public mainstream setting are well meaning," says Krizman, "but based on a misguided interpretation of least restrictive environment. Preventing the unfortunately predictable social ostracism of HF ASD children by neurotypical peers cannot be regulated by legal presumption and well meaning educators. This resulting social isolation can make the mainstream class a more restrictive environment than a separate setting in which students have a real opportunity to participate."

These "David and Goliath" battles over the safety of their autistic and Asperger children that families find themselves in with their school districts point to the alarming paucity of infrastructure, authentic programming, and real-world training of teachers and therapists in schools nationwide. Add to this the documented higher rates of diagnoses of children with ASDs, and I would say that we have reached a critical mass situation.

What will be the next step?

*A class action suit that brings home the fact that this is a national crisis in education for children on the autism spectrum?
*Federal funding that addresses, in a systemic way, the serious absence of programming for students on the autism spectrum, not to mention the contortions that administrators of public schools force themselves into as they rationalize discriminatory behavior toward their own students in order to stay within the steep bounds of their very limiting school budgets?
*Or will it be teachers’ unions that have the guts to take a stand on the failure of inclusion in public schools (as happened only months ago in the country of England) with demands that the problem be rectified through federal funding, training, additional staffing, and the development of specialized schools and programming both private and public?

For my part, I’d like to see all of this happen!

Truly, the humanity of a school is expressed in how it treats its students in the same way that the humanity of a country is expressed in how it treats its citizens.

Our thanks should go out to the Perkins family of Colorado and to the Bloschichak family of Pennsylvania. Without their courage, all parents of the autism community would be unheard and our children’s voices...silenced.

Valerie Paradiz, PhD, is a writer and the co-founder of the Open Center for Autism. Valerie offers workshops, consulting, and professional development on Autism Spectrum Differences (ASDs) to universities, public and private schools, mental health and other service organizations, as well as to parent groups. Books by Valerie include Clever Maids, a narrative history about how the famous folk tales would not have made their way into print without the Grimm brothers' faithful female friends and collaborators and Elijah's Cup, a powerful memoir about the author's life with her autistic son.
Dr. Paradiz presented "Asperger's Syndrome: Building Confidence through the Life Span," at the USAAA 2006 International Conference in Park City, Utah. To preview her presentation, click here.




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