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starfish

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  1. Thank you and yes I am very familiar with DAN and the books you mentioned. What I was wondering is if there were any actual reports here of natural treatments that have gotten rid of PANDAS? Not just theory, but real reports of kids beating this with naturals. Thanks, Beth
  2. Hi, Thanks for the report. And glad to hear your son is repsonding to zithro. I know of a number of parents that have their kids on TSO and it seems that most of them have seen benefits, some amazing benefits, but I was wondering specifically if anyone with PANDAS has tried it. With today's exchange rate against the US$ and using the maximum dose of 2500 ova every 2 weeks, it looks like the monthly cost would be $832 a month. Very expensive yes, but not nearly so as IVIG. Beth
  3. Here is the original online post by Stewart in 2007 that got me interested in TSO: My name is Stewart Johnson and I am the father of a 16 year old son with autism. After researching autism and living through my son's extremely difficult behaviors for 14 years, I came up with a hypothesis about the cause of agitation, self-abusive behavior, and other symptoms of this disorder. I researched the topic in the medical literature and found support for the hypothesis. Based on my hypothesis, I also found what I believed to be a new potential treatment that is currently being used for Crohn's Disease and Ulcerative Colitis, two autoimmune disorders. I wrote a research paper and presented it to my son's doctor, who agreed that this was well researched, plausible, and should be pursued. I got the agent and we began treatment of my son. After 10 weeks, all my son's symptoms of agitation, self abusive behavior (smashing his head with his fist and biting his hand), anxiety, obsessive thoughts and behaviors, impulsivity, compulsivity, behavioral rigidity, repeated questioning and stimming completely disappeared. He went from smashing himself in the head 20 times a day and having to be physically restrained to not doing it at all. All the OCD vanished. No more inflexibility and extreme desire for sameness. No more anxiety. No tantrums or melt-downs. He continues to take the agent every two weeks and the symptoms have not returned for 15 months so far. Given the fact that my son had 13 years of intensive therapies (including pharmacology) in an effort to eliminate these behaviors (to no avail), the results left me and his doctor speechless. He asked me to present this to the entire research team at his hospital (which I did back in November 2006) and I will also be presenting it at the annual Autism Research conference at Mount Sinai Medical Center in New York coming up on October 28th. We have filed for an NIH grant to conduct a double blind, placebo controlled study of this agent in autism. In the meantime, I feel guilty not telling my story. Maybe it's a fluke, maybe he just happened to lose all these behaviors coincidentally after ten weeks on this therapy. Or maybe not. I created a website to tell the story and hopefully stimulate interest so that this can be studied in a controlled fashion. The entire story can be found at www.autismtso.com I am not selling anything, I have no affiliation with the company that makes the treatment agent, and I receive no compensation of any kind with regard to this from anyone. All the costs associated with the development and maintenance of the website are from my own pocket. I'm not suggesting anyone try this. I just think the story is too remarkable not to tell, and by telling it to as wide an audience as possible, the result may be that controlled studies happen sooner rather than later.
  4. Has anyone here ever heard of, considered, or used TSO (Trichuris Suis Ova) therapy in an attempt to reverse their child's PANDAS symptoms? I first heard of this in 2007, in relation to Stewart Johnson's son with autism. As a result of TSO therapy, his son's crippling OCD symptoms were markedly reversed, presumably due to reversal of autoimmunity. The theory is that by giving the immune system a legitimate "target", it will stop attacking itself. Though admitedly a rather "unusual" treatment, it seems less risky to me than IVIG. I just wondered if others may have considered it or tried it. It is expensive though not nearly as expensive as IVIG and certainly not nearly as invasive. Check out www.autismtso.com for the incredible story of Stewart's son and background on TSO therapy. It has been studied in Chrons disease, allergies, and MS, and I believe a small trial in autism is underway. Beth
  5. I am new here. I have been reading a bit and have seen antibiotics and IVIG as possible treatment options for PANDAS. What other treatment options exist? Is there anything less risky/invasive that is effective? Thanks, Beth
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