By Marcella, VaxTruth
With all the coverage of The Le Roy Twelve in the last 10 days, one thing has been a positive… at least from the standpoint of many in the “autism” community.
There has been greatly increased attention to PANDAS – Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.
PANDAS is what happens when a child’s immune system does not respond appropriately to a strep infection. Years ago when I first learned about PANDAS, it was believed that strep was the single causal bacterial infection responsible for triggering the attack on the basal ganglia and the anterior cingulate gyrus. When I moved to Evansville from D.C. and began working with a Mayo-trained psychiatrist who is arguably the best in his field, at least in this part of the midwest, he had never heard of PANDAS… it was too new. At my suggestion we began doing blood tests (ASO, Anti-DNAse) to detect for strep antibodies that were outside of the normal range. We frequently found evidence of chronic strep infections in several of our teenaged patients who had previously been diagnosed and treated for everything from ADHD and Autism to Tourette’s Disorder, OCD, Bipolar Disorder and Oppositional Defiant Disorder. We also had many patients whose strep levels came back negative. At the time, it was our understanding (based on the research in 2002-2005) that if blood tests were negative, it probably wasn’t PANDAS.
Thankfully, the research has continued to advance since the first five years of the 21st century. There is currently a much greater understanding about how many different bacterial and viral infections can attack the parts of the brain that are responsible for movement control, obsessive thoughts and compulsive behaviors, and the extreme emotional and behavioral ups and downs exhibited by children whose brains are infected and inflamed. Because it is now known that multiple infectious agents are involved in the clinical presentation of an autoimmune brain attack, we no longer refer to the syndrome as just “PANDAS.” Instead this group of neuro-immune disorders is now referred to as PANDAS/PITAND/PANS. For those who would like to learn more about this group of sudden onset disorders, this is an excellent article.
As you may recall, in my first sentence of this post I stated that the increased awareness of PANDAS as a result of what is going on in Le Roy, New York comes as a relief to many in the “autism” community. That’s because PANDAS/PITAND/PANS is not rare among our children. In 2007, when I attended my last Defeat Autism Now conference, it was estimated that PANDAS (just the form associated with strep) affected more than 30% of children diagnosed with autism. Even with that knowledge, many parents have had an extremely difficult time obtaining appropriate diagnosis and treatment for their children. Pediatricians and General Practice doctors who are not familiar with the latest research into the many medical conditions that cause “autism” symptoms often flat-out refuse to even do a strep test on a child with “autism” because the knowledge of PANDAS is relatively new and treatment is deemed “experimental.” This has resulted in many tragic and unnecessary deaths of children on the spectrum, simply because their doctors refused to consider that there might be something about “autism” they were not taught in medical school.