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West Coast PANDAS Symposium
3bmom posted a topic in PANS / PANDAS (Lyme included)The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed. I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past. I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any other families who were there please add your thoughts and comments! They did video tape it and hopefully will have it up soon on the website and YouTube. Dr. S came out to a standing ovation. She talked about the Cam Kinase II /activity and anti-dopamine D2 Receptors along with evidence of cross reactive antibodies. 1 in 5 have the eating issues and there also is a disruption in REM sleep. Besides the throat, strep can be found in the sinuses where some had cysts removed along with the Uretha and Anus. Titers were only elevated in 2/3 of patients. Augmentin also decreases Dopamine and Glutamate. Dr. B-A brought in newer concepts of Encephalopathy. She is a pediatric Neurologist and discussed cytokines and brain inflammation. PANS should be under the umbrella of Psycho Immunno Neurological Syndrome. She found a ratio of males 5:1. She also thought a lumbar puncture was important and using Immunotherapy for treatment. There may be involvement of the Vagus nerve. Dr. F from Stanford Neuro Immune Clinic discussed abnormal reactions of the Innate and Adaptive Immune System. She talked about the intersection between PANS and other diseases. She felt the medication Ritux X2 was dangerous and would only consider it in very serious cases. I think, don't quote me but it makes the T cells be quiet and lasts about 6 months till symptoms return. She also is part of a consortium of Dr.s working on this puzzle with Psych, Rheumatology, Immunology , and Infectious Disease. Dr. C from the Univ of Missouri related PANS to "The Blind Man and the Elephant" with every specialty looking at it from a different angle. I have Rifampin written in my notes if persistent but don't know if he said that or someone else. Pen VK was also discussed to set your timer for every 12 hours otherwise a missed dose leaves you unprotected for a few days. We can't take penicillin. Maybe someone can chime in about this. The next morning we had very informative talks with an Integrative nurse. After all the coordination of the event she still had the time to answer many parents' questions. She said there are 100 different strains of Lyme and the CDC revised their numbers last year to 300,000 new cases. As a parent of a PANDAS son she said trust your gut and just think what is the next step you can do. Most important is to get the bowels moving and eliminate constipation. Her son spoke words of encouragement to the parents during the morning session yesterday and he is excited to start college next year. Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS. GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah! Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too! The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store. I personally enjoyed going. It is so nice to be with parents who "Get It". There were stories exchanged, paths we have travelled, and most important successes sprouting hope.