I am still reeling from this morning's conversation my husband, Richard and I had with two specialists in the field of stem cell research.
We began a blog as a document of our autistic eight-year-old daughter Emma's progress, or lack thereof, after her first round of stem cell treatments this past March, but also as a way to document our own struggles as parents in finding help for her. We made the decision to try stem cell treatments on the advice of two specialists working out of a prominent hospital in New York City. So our conversation this morning was all the more troubling as these two specialists, also from a prominent east coast hospital, felt strongly we must stop the stem cell treatments immediately.
When our daughter, Emma was diagnosed with autism she was two and a half years old. It was clear to me something was wrong, but we didn't know what. Because autism is so poorly understood and because it covers such a massive range of behaviors, no two autistic children are alike. The "tell-tale" signs of autism, the few I was aware of back then, did not fit Emma's profile.
We have tried many, many different therapies -- physical, behavioral, medical -- with the hope that something will help Emma. Many of the therapies we tried we heard about from other parents of autistic children who were helped -- the same therapies that did not help Emma. There are a few things, in retrospect, I would not have spent our money on, but there are many more things we tried that I would have done even knowing what I know now, even though they didn't appear to help Emma. Such as the homeopath I took Emma to for 10 months. Who knows whether our "detoxing" of heavy metals helped? Or the cranial-sacral therapist I took her to for over a year hoping to alleviate her chronic constipation.
I know it must sound crazy to any medical doctor or even to any science minded person because there's simply no "science" to back up many of the things we tried. On the other hand there is so much more we don't know about autism than we do. Desperation makes for odd decisions, and perhaps one can explain everything we've tried and done by simply leaving it at that. On the other hand, unless one is a scientist, and most parents of autistic children I know are not, how does one choose what will help one's child when all we have to go on is anecdotal evidence?
A friend of mine called just now and asked how everything was going as we returned from Panama only two weeks ago where we had gone for Round 2 of Emma's stem cell treatments. See here for more on our trip. I recounted this morning's conversation, our concerns and worries, and then said, "It's just another typical day for us."
And it is.
Typical in that it is an endless emotional roller coaster, typical because we have more questions, typical because there is no cure, typical in the degree of frustration we so often feel.
But Richard and I are tenacious and stubborn and unwilling to accept no as an answer. We continue to research, try new things and hope.
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I set up my own autism blog in 2003 to document what we were doing with Megan and as I read more and more science about what was known about autism it became clear these quack treatments were expensive nonsense. In the case of Stem Cells, its dangerous nonsense.
Here's a link to a page on the Association for Science in Autism's page where they evaluate a whole range of different therapies. I'd urge all with autistic children to read it:
http://www.asatonline.org/intervention/treatments_desc.htm
My own blog, should you be interested is http://leftbrainrightbrain.co.uk
I have so many questions.
Is it death by a thousand knives like in the case of the honey bees that is causing autism?
How many chemicals and poisons are we being exposed to and are these impacting the increase in disease?
What industries are we protecting by keeping the answers of causation elusive?
Who controls what is allowed in main stream medicine and are the treatments we receive based on profit margins or effectiveness?
We all have to start demanding better treatments and more options and we have to demand answers. It is no longer okay for them to bamboozle us with medical jargon that goes no where and keeps us in an endless circle of unanswered questions.
Which increase do you mean? The increase in prevalence is well documented, but there are not good data pointing to an increase in incidence.
This review of 105 studies was from 1995: Linde, K., Jonas, W.B., Melchart, D., et al. (1994) "Critical Review and Meta-Analysis of Serial Agitated Dilutions in Experimental Toxicology," Human and Experimental Toxicology, 13:481-92.
More recently, some researchers have published a dozen+ animal studies. Some are reviewed in:
Banerjee, P.; Biswas, S. J.; Belon, P.; Khuda-Bukhsh, A. R. A Potentized Homeopathic Drug, Arsenicum Album 200, Can Ameliorate Genotoxicity Induced by Repeated Injections of Arsenic Trioxide in Mice. Journal of Veterinary Medicine, Series A, Volume 54, Number 7, September 2007 , pp. 370-376(7). DOI: 10.1111/j.1439-0442.2007.00945.x
Some human trials:
Khuda-Bukhsh, AR, Pathak, S, Guha, B. Can Homeopathic Arsenic Remedy Combat Arsenic Poisoning in Humans Exposed to Groundwater Arsenic Contamination?: A Preliminary Report on First Human Trial, eCAM, doi:10.1093/ecam/neh124 (Evidence-Based Complementary and Alternative Medicine, October 27, 2005.
Belon P, Banerjee A, Karmakar SR, Biswas SJ, Choudhury SC, Banerjee P, Das JK, Pathak S, Guha B, Paul S, Bhattacharjee N, Khuda-Bukhsh AR. Homeopathic remedy for arsenic toxicity?: Evidence-based findings from a randomized placebo-controlled double blind human trial. Sci Total Environ. 2007 Jul 10.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17628642&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
The journal, Science of the Total Environment, is a highly respected journal published by Elsevier (same publisher as the Lancet)...and eCAM is published by Oxford University Press.
Further, the above references are to double-blind and placebo controlled studies, not "success stories."
Please TRY to be a bit more literate when responding here. Just because you are choose to be anonymous doesn't mean that you shouldn't try to be informed and reasoned.
Another friend of mine has a child with Asperger's and she is thrilled with the results after going to Brain Balance. I realize it is yet another anecdotal evidence scenario, but even our pediatrician mentioned it to me as my daughter has sensory processing disorder. (For her, we have done or are doing a pile of different interventions that have made a world of difference.) Good luck and keep trying!
1. pertaining to a clinic.
2. concerned with or based on actual observation and treatment of disease in patients rather than experimentation or theory.
Just because one cannot find studies doesn't mean they don't exist. Most studies take at least one-two years before they are published in peer-reviewed journals. I think you'll find that there will be a number of studies showing up on PubMed over the next few years. Especially outcome studies, because they tell what can be expected working with a modality. The first outcome study was just released on ADHD. There is a previous paper by Robert Melillo (Developer of the Brain Balance protocol) indexed on PubMed regarding Autism as a Disconnection Syndrome. It was not an outcome study but rather a review of a number of other papers. Until then, I'd go with anecdotal (word of mouth/net), such as Jennifer's comment above.