October 16, 2008


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Jenny's New Book

Jenny McCarthy's latest book entitled "Mother Warriors" came out a few weeks ago.  It is another honest book that will bring both tears and laughter to those who read it.  I'm also happy to report that Cameron is pictured on the inside cover along with dozens of other children who are recovered or recovering from Autism!  Ms McCarthy put out a request for photos of children who are recovering from Autism many months ago.  When the request went out, parents were asked to submit a photo along with some brief info about the child (name, age, geographic location, diagnosis and state of recovery) along with a signed release to use the child's photograph in her book if chosen.  When the book released we were thrilled to discover Cameron's picture included in the collage of photographs on the inside cover!  

Urinary Porphyrin Testing

I am running another urinary porphyrin test on him this week and then we begin chelating again.  The OSR arrived last week and I was unable to get another IV scheduled for him until the middle of November.  It occurred to me two weeks ago that he has had a long enough break from chelation that we can run another valid urinary porphyrin on him.  The urinary porphyrin is a test to determine the body's heavy metal burden and what metals are dominant.  Blood tests for toxic metals are only able to test what metals a person was recently exposed to and is still mobilizing.  Urine and Fecal tests are able to tell us what metals we are able to excrete (unprovoked would be without chelation and a provoked test would be after taking a chelator to pull metals out of the tissue).  The urinary porphyrin test can tell us what the body burden of metal is but is only accurate when one is not chelating.  When one is actively chelating this test will come back with lower numbers than are accurate.  So I ordered a test kit which just arrived this week.  Cameron and I keep forgetting to catch his first morning urine.  But as soon as we do, we will send the urine back to France and begin the OSR that night.

After I ordered Cam's test kit, I noticed that Megan has developed some brown lines across her front teeth.  This is a symptom of mercury poisoning (a symptom frequently seen in the Mad Hatters of the 1930's).  We have been so focused on Cameron's regression and Megan initially appeared okay after the bulbs broke at her school.  Megan's classroom was several hallways away from Cameron's.  I knew that her classroom would have been contaminated when the school had vacuumed up the mercury (the entire school would have been), but somehow it had not occurred to me until last week to run another urinary porphyrin on her.  I had run this test on Megan two years ago.  So running it again will indeed let me know how much mercury she had taken in and been unable to excrete after the florescent bulb accident.

For those reading this and wondering about running a urinary porphyrin on themselves or child.  Here is the information you need at this time for this test.  There are several labs that can complete this test.  However, at this time our DAN! doctor only uses Laboratoire Philippe Auguste as it appears to have the most accurate testing methods and results.  I've seen labs from parents who have run this same test at multiple labs as well as having additional lab work completed and these seem to support that the French lab LPA is the most accurate.  You do not need a doctors order to request a test kit or complete the test.  You may go online and order the test at www.labbio.net .  They will ship the kit to you for free.  You do not pay for the test until you ship the sample (first morning urine) back to the lab.  At this time the cost is $120 US dollars and shipping is roughly $3 (you will need to fill out a customs form, otherwise simply send regular mail).

However, it is important to know that the reference ranges that will return with your results may not be accurate.  Two years ago large numbers of American children with ASD began having this test done after information about this test was presented at two biomedical conferences.  After this happened, the lab sharply increased the reference ranges (some more than doubled!).  Especially those used to measure mercury poisoning.  Cameron was tested before the test was presented at the conferences so his first test included the original reference ranges.  After we tested Cameron I had the test completed on myself, Megan, my husband and even my father in law.  This is how I first became aware of the change in the reference range.  I spoke to our DAN! doctor about it and she explained that it appeared there was no scientific reason for the reference ranges to be so drastically changed and that she was still using the original reference ranges when assessing her patients' results.  I suggest the same to other parents.  It appears as if the lab may have received some kind of outside pressure to alter the reference ranges after so many children with ASD were testing to determine heavy metal poisoning.  For those interested, original reference ranges that we continue to trust were:  uP 7 - 14, 7cxP 1.5 - 3.5, 6cxP .4 - .8, 5cxP 1.0 - 2.9, pcP 2 - 5, cP 50 - 80.


Launching a New Support Group

We had hoped to launch a resource center this year.  I was beginning to put together the paperwork for this venture when the fluorescent light bulb broke at school and our lives were turned upside down again.  I've had to place that project on the backburner for now as life continues to get in the way.  However, two friends and I have managed to organize a local biomedically focused support group for parents/caregivers of children with ASD.  This would have been a small piece of what the intended resource center would have been able to provide.  While it's the most I can manage at this time, I also feel it is the least I can do to help other families in our community.  Our first meeting is November 8.




Disclaimer:  The material on this site is for informational purposes only and is not to be meant as medical advice.  Please consult a trusted and knowledgeable physician when making medical and treatment decisions.

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