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  1. My son (11 w/sever autism) has been treated for PANs for two years with antibiotics by an immunologist at MGH. Recently his symptoms worsened with increased anxiety, ocd, aggression, and a new tic disorder. Can anyone recommend doctors in New England who could treat a child like my son? We're feeling quite desperate. Thanks!
  2. My 20-year-old daughter with autism and PANS/PANDAS has, over the last few years, shifted her I nterests back to things she enjoyed as a toddler and young child. She has a renewed interest in some of the shows she watched as a younger child, like Sesame Street or the Backyardigans. Lately she has also become interested in reading the Big Red Barn, a book we read to her often when she was about 3-6 years old. At the same time, we have seen her OCD symptoms worsen and her anxieties increase. Could it somehow be linked to a PANDAS flare? She also has Lyme, which we started treating last week wit
  3. This popped up in my Facebook feed this morning. Long suspected by many (if not most) autism families, but encouraging research nonetheless. http://www.ozy.com/fast-forward/autisms-gut-brain-connection/33302
  4. Has anybody had a chance to read this new paper? (Kim?) I skimmed it on my phone and haven't had a chance to read it closely. I think there are some fishy things about it, for one thing not very many African Americans were in the study. http://jama.jamanetwork.com/article.aspx?articleid=2275444 Of course, all the media is lit up with how once again, here is another study that shows no link between MMR and autism..I need to take the time to read the paper more closely....did they look at any other vaccines in the study, or the age at which MMR was actually given to the siblings (1 year
  5. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Dig
  6. http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=0 This article is from a few years back. It is striking how many kids on the spectrum have Pandas/Pans. Is there something in their genetics which makes them uniquely vulnerable to autoimmune problems? Or are the autoimmune problems causing the autism? Some kids seem to be "cured" of their autism once the Pandas/Pans is treated. Dr. Kenneth Bock suggests that even ADHD is on the spectrum and the spectrum has an autoimmune root. There also seems to be a correlation between maternal illness during pregnancy
  7. Great eight-minute video of Dr. Stephanie Seneff of MIT discussing the connections between autism, vaccines, GMO's, pestisides, glutamate, sleep disorders, Tylenol, brain swelling, blood/brain barrier, etc. Very relevant to PANDAS/PANS as well. https://www.youtube.com/watch?v=o3P6wVUH0pc&feature=youtu.be
  8. 1) VAXXED: Caller Gets Schooled on Dr. Andrew Wakefieldhttps://www.youtube.com/watch?v=TTxQxkXevkQ (more info here http://vaxxedthemovie.com/dr-andrew-wakefield-deals-with-allegations/ ) 2) Santa Barbara Q and A with Del Bigtree (producer of Vaxxed) https://www.facebook.com/del.bigtree/videos/10153458187935964/
  9. Here's a good summary on what has been going on. Please share To buy tickets https://www.angelikafilmcenter.com/nyc/film/vaxxed-from-cover-up-to-catastrophe More info on FB https://www.facebook.com/permalink.php?story_fbid=673611479448561&id=669084493234593&substory_index=0&hc_location=ufi
  10. Somebody here made this test and willing to share it over here? (if that is too long for you, then at least post your arabinose results which is elevated with people with autism or similar problems, autism can be also aspergers such as high functioning autism which doesn't seem to be autistic on the outside) also write your background story of problems you have, anxiety, sleep disorders, aspergers, autism, pandas syndrome, etc.. here are my results: http://imgur.com/a/PnJil My problems: Severe social anxiety, schizoid personality disorder or aspergers (socially disabled - can't t
  11. Hi, I'm a 19 year old man, kid, idk I'm sorta in between man and kid. Anyway I've always been a sort of weird kid, but very intelligent and high functioning. I always had some tics and weird mood behaviors, social awkwardness, etc. but was more or less a functioning member of society so my parents never saw any reason to investigate further. Over the summer I met with a therapist for the first time to help sort out attention/studying issues that I was having my first year of college and I ended up being diagnosed with ADD and Autism, I also used to be a major strep carrier, as an infant I had
  12. This is a great informational meeting from earlier this week. Brian Hooker (Skype) plus many other powerful speakers were in attendance. https://www.youtube.com/watch?v=x4SedhV5I8E
  13. Hi, My son who is 3 year 2 months had a positive strep yesterday with absolutely no symptoms. He has been diagnosed with Autism recently, has excessive running and other ADD issues, has shown some regression. One thing I remember, early on when we were concerned he developed vocal tics suddenly, this coincided with him going to a different class, so we were could be stress induced autuistic reaction. His behaviours did seem to come on suddenly, I remember telling a psychologist like some body turned on a switch, he had some behaviours like hyperactivity. But we have lost our kid complete
  14. This article in the Sacramento Observer reports Congressman Posey's revelation to congress that Dr William Thompson of the CDC has revealed the deliberate omission of data in a 2004 study of the link between MMR and autism. The other authors not only omitted damning data and conclusions from the final publication but destroyed documents in order to cover it up. Sadly the Sac Observer is just one of two publications in the entire country that has reported on this so far. http://sacobserver.com/2015/07/u-s-congressmans-statement-questions-science-cited-to-support-school-vaccine-bill/
  15. "Some parents reject the current vaccine schedule. This video includes a selective review of issues and studies that may contribute to parental concerns. The "vaccine court" and the Omnibus Autism Proceeding are discussed. The accusations against Dr. Andrew Wakefield and the lack of evidence he commited fraud are reviewed." "Why do parents refuse to vaccinate their children?" This video needs to go viral...it deserves millions of views.
  16. This has implications for all of us whose PANS kids have gut issues. http://www.ageofautism.com/2015/03/autism-and-the-microbiome-will-fecal-transplants-be-the-next-awakenings.html#more
  17. I have just been told my son likely has PANDAS. I knew nothing about it. After reading quite a bit I am putting pieces together. He was given amoxicillin the same day as his MMR when he was 18 months old, for strep, I think... still checking to be certain as it may have been for massive ear infections, if which he had many. Another piece of the family auto immune puzzle is that this same time he regressed into a world of autism. Yet another, I have an adult daughter 15 years older who is on the spectrum. But here is my reason for posting: does anyone know of or has anyone heard of a docu
  18. The Greater Good can be viewed on this website for free until 21 Nov. http://articles.merc...eater-good.aspx Aluminum adjuvant linked to Gulf War illness induces motor neuron death in mice. Petrik MS1, Wong MC, Tabata RC, Garry RF, Shaw CA. http://www.ncbi.nlm....pubmed/17114826
  19. I need this groups help on a topic I feel like autism and PANS may be one in the same ,,,, I have heard of other doctors thinking this too that classic PANS is an occurrence after age three, & my sons situation is before he was three with his tick bite when he was a baby.my son is now almost 4 & has a twin with typical chattery development..... We are doing oral human gamagobulin for 2 months and starting our 3rd month we now have good speech but very little desire to be social or use language in a back fourth receptive way, very little desire to socialize with his brother. We had
  20. My doctor wants us to try Oral IG. It is the IVIG used but not with needles, We are told to give him a childs does of Pepsid to stop stomach acid and the oral amount is small & given every other day for many months. It is expensive $600. a month and I am fully aware of that. Background: My son is 3.5yrs old, and is in & out of being with us.He has some OCD, it used to be EXTREME. He talks some but not conversationally. He did 20 days of Cefdinir 2 different times. On both occasions he did speak conversationally. And permanently lost some of his worst OCD & separation anxiety s
  21. The research below, done in Australia shows the dangers of our food supply and why there is an epidemic of diseases with the onset of GMO food both in our meat supply and corn, soy and sugar beets. My mom always wondered why I, and so many of my friends had to have bed rest pregnancies. She use to be a labor and delivery nurse in the 50's and saw miscarriages but mostly early on. Glyphosates were introduced in the 70's and tripled or more in amounts sprayed with GMO foods. Now I have my answer. I met the farmer personally 2 years ago at a lecture. He is 3rd generation and has seen ch
  22. 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 ot
  23. Researching around I found this very informative. Seems to me we have rendered the innate immune system dysfunctional. What should become dormant is creating havoc neurologically. Depending on the age of onset, infants-Autism, young children- PANDAS/PANS, elderly-Alzheimers. Looks like it's ALL the same thing! http://www.psychologytoday.com/blog/evolutionary-psychiatry/201110/could-alzheimers-dementia-be-caused-virus
  24. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Dig
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