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Heard this story on NPR today, and I'm encouraged by yet another link between neurological disorders, pathogens and immune response. IMHO, each and every "find" like this strengthens the rightful destiny of PANDAS/PANs as a DSMV-worthy illness that will, one day, no longer be referred to as either "controversial" or "rare." Scientists may have solved the mystery of nodding syndrome, a rare form of epilepsy that has disabled thousands of children in East Africa. The syndrome seems to be caused by the immune system's response to a parasitic worm, an international team reports in the journal Science Translational Medicine. And they think it's the same worm responsible for river blindness, an eye infection that's also found in East Africa. The finding means that current efforts to eliminate river blindness should also reduce nodding syndrome, says Avi Nath, an author of the study and chief of the section of infections of the nervous system at the National Institute of Neurological Disorders and Stroke. But the only clue that seemed to hold up was that affected children lived in areas where river blindness was common. This clue was puzzling, though, because even though nodding syndrome is a brain disease, the parasite that causes river blindness doesn't seem to infect the brain. After returning from Uganda, Nath decided to search for an explanation. "He pulled all of the lab together as a team and asked us to each investigate different components" of the syndrome, says Tory Johnson, an assistant professor of neurology at Johns Hopkins who was working for Nath at the time. She is also an author of the new study. Johnson's assignment was to see whether the body's own immune system might play a role. So she began screening blood samples from people with nodding syndrome. Other scientists had also looked for an immune response. But Johnson's search was much more extensive. "We looked at everything that was available," she says. Johnson had discovered that in people with nodding syndrome, the immune system was targeting a protein found in certain muscle cells. It looked as if the body was attacking itself. The question was whether the immune system's attack also included the brain. So Johnson started looking to see whether the targeted protein was in brain cells. "And lo and behold she found that yes, it was not only present in the brain, there were actually large amounts of it present in neurons," Nath says. "So the story really came together very nicely." The full story, the team's hypothesis, goes like this: When a person is infected with the river blindness parasite, the immune system begins sending antibodies to attack the invader. These antibodies identify their enemy by looking for a specific protein in the parasite's cells. Unfortunately, the target protein in the parasite looks a lot like a protein found in certain brain cells. So these brain cells become unintended casualties of the body's efforts to protect itself. The discovery shows why it's important to treat children soon after they are infected with the parasite, Nath says. That might prevent an immune response that attacks the brain. And it would mean that the parasite can't be spread from person to person by black flies. Because nodding syndrome appears to be the result of an immune response, Nath says, it may be possible to limit brain damage in some children by using drugs that tone down the immune system response. The finding also raises the possibility that parasites, or other infections, are causing epilepsy in the U.S. and other countries, Nath says. "We know there are a large number of immune-mediated epilepsies," Nath says. "But the underlying cause is not clear." And there are plenty of parasitic infections in the U.S. Pinworms, for example, infect millions of children each year. It's possible that some of these infections are leading to epilepsy, Johnson says. "We don't know because we haven't looked yet." http://www.npr.org/sections/goatsandsoda/2017/02/15/515424720/scientists-may-have-solved-the-mystery-of-nodding-syndrome

I would like to know if PANS parents have had MRI's done on the kids' brains. Were any observations made? Any conclusions? Signs of lesions? Causes of seizures determined- after all, tics are mini seizures..... Did you have to convince insurance to do this? How did you do so? Please relate any experiences here.

Did anyone else happen to catch this interview on NPR's "Fresh Air" yesterday? I heard part of it on my way home last night and picked up the rest of it via the podcast today. http://www.npr.org/programs/fresh-air/2015/01/28/382157260/fresh-air-for-january-28-2015?showDate=2015-01-28 Very interesting! I want to get a copy of this book. And the title of the interview (and maybe the book too, for that matter) is a little misleading, as she talked about childrens' brains and adult brains, as well. Though I guess most of her recent research has been in the teenage brain. One thing that especially caught my ear is that the child and teenage brain responds very differently to various chemical inputs because of the plasticity of the brains . . . there's more "substrate" material, she said, so they absorb more of the substances they're given and hold onto them longer. Makes me wonder of the "half-lives" we all have kept an eye on from time to time is determined by way of adult brains rather than immature brains! She also mentioned cannabidiol as an "intriguing area of research" for various seizure disorders as it "reduces brain excitability." I know there are families here who are utilizing that for their kids and seeing some results.