thenmama

If BCH said anything at all about "no PANDAS b/c no strep-- only Lyme and MycoP" I suspect the Wrays could go after them for a HIPAA violation. And, as expected, they have already issued the CYA statement saying they can't comment b/c of fed regs (true, actually) but, of course they provide care for all children, even those with PANDAS... posted to the BCH FB page about 45 mins ago.

Beth posted 15 minutes ago that the child was placed in the temp custody of the state of Mass this afternoon. This is terrible. I just can't fathom that they could get away with removing a child from her family because they were medically treating her for a disorder that has a division at the NIMH. If it were one of the things that didn't have any mainstream/Western med presence I could see how they could get away with it, whether or not I agreed... but this just makes no sense. I keep thinking there must be more to the story than this-- but maybe that's because I'm terrified for us all if there is not.

Thanks for giving me your creeps, too, JAG, with that stalker virus image I've made a "medical history overview" document for each of my kids that is laid out like a spreadsheet. It contains dates and the basic info about each issue/dr's visit: symptoms/issue, dx, hx, etc. I keep it in the front of their med records binder as a quick reference so I can easily see and reference whatever illness or issue I'm looking for without flipping through their full record set (which contains records and reports in all sorts of different formats from various docs). If I need more details about anything, the overview also helps me find it more quickly because I know where in the binder to look for that specific record. Interestingly, doing this also revealed some surprising seasonal patterns. I probably would have remembered some of them were around the same time of year, but the timing has been really oddly spot on for a couple of things, and there were some things I never would have thought to look at as cyclical, but occur in what looks to be a pattern.

In the outbreak last year they there wasn't a common vax history--not of recent vaccinations and not all had the Gardasil vax (and I think among those who had it was not given near the time of the outbreak). The two things I think about when I think about the timing and seasons/Fall are seasonal allergies and common infection cycles/seasons, as tpotter astutely points out. She's not a doctor-- she just knows more than some doctors:)

Sadder still: if it was the LeRoy football team boys getting the same illness as the girls, nobody would be claiming conversion disorder.

LLM, I agree with you on both fronts. That was an obnoxious comment, especially so considering A) presently the dx of Autism is only a set of symptoms so claiming it can't be cured and "only the symptoms of the disorder can be alleviated" is a somewhat illogical statement and it came at the end of an article outlining physical, causal factors and didn't elaborate on how some people are trying to address this and other physical factors that are either contributors or causes. And this article also gave me encouragement, at a time I really need it while we're struggling to make some real, sustained progress for ds. Time to start digging into some more research and avenues to explore-- definitely need to learn more about glutamate. Thanks again, Nancy:)

Yep-- and guess who's shamelessly self-promoting, I mean, hogging the stage, I mean, stealing the spotlight, I mean, seeing the patients... whew, finally got that that out. Dr. WTF is HIPPA, anyway? Mechtler, of course. And naturally, the school officials and DOH have issued statements claiming the cases are not caused by infection, the environment, or anything else with any sort of liability attached. Article:2 new cases Excerpts: "A physician who’s treated one of the two students blamed the new symptoms on recent publicity about the earlier outbreak in Le Roy." Dr. Laszlo Mechtler, a Buffalo-area neurologist who treated or consulted on many of earlier the Le Roy cases, said he believes the two newly afflicted students also have a mass psychogenic illness. He told the Democrat and Chronicle’s Gannett affiliate WGRZ-TV in Buffalo that he has seen one of the two new cases and is scheduled to meet with the other. WGRZ-TV reported that Mechtler attributed the two new cases and the recent recurrence of symptoms in a third patient on local media coverage of an Aug. 22 public meeting in Le Roy called by environmental advocate Erin Brockovich." The new cases are supposedly due to media coverage that drew the patients' attention to the previous cases, which means these new patients acquired the conversion disorder by seeing something about the prior/resolved cases in the local media, but without exposure to sick classmates/peers and well after the fact when there was no active frenzy/contagion playing out locally. And yet somehow these two new patients didn't fall ill with conversion disorder back when the town was in the media spotlight and full of reporters, and kids in their school/small town could be seen in person actively twitching and writhing as the outbreak endured. The media exposure that supposedly caused the recent cases would have been only whatever presumptively small to moderate buildup the Brokovich meeting would have generated in the local media. So, if Mechtler's correct and CD can be spread with only limited media exposure in the absence of active cases/contagion/outbreak in the geographical region, then how come people all over the country, or world, weren't busting out with CD when the LeRoy girls were a major media focus for weeks or months on end? Why no global MPI outbreak (in the info age-- all media all the time) when people everywhere were seeing a whole lot more of the LeRoy illness than these new patients would have seen in August?

Nancy, this is fascinating. You're pretty up on glutamate, I think, aren't you? I was wondering how closely this would relate to the glutamate issue that people on our board talk about. I'm woefully uninformed on that front and will have to search the boards to find more info and sources to read up on it... Thanks for posting!

I'm sure this is totally an industry-driven move. Other insurers are PO'd b/c the UHC and Harvard Pilgrim policies have been used in appeals for something they don't want to pay for. Add that to UHC maybe noticing hey, there are a lot more of these kids getting dx'd and needing treatment now and it's getting a bit expensive to do the right thing, and those guys don't play fair so why should we? Time for a media blitz, maybe? My angle would be: UHC has covered this as a proven treatment for the condition for X years. There have been no recent studies refuting the evidence UHC's previous policy was based upon and there is no new evidence in the medical literature suggesting the previous results were inaccurate. In fact, support for its use in the treatment of this condition has only increased in the past year, with the NIMH (the govt org overseeing PANDAS research-- important to mention b/c many major health insurers say they consult/follow govt health org's recommendations) recommending at as one of the standard of care treatments for this rare, pediatric condition. Specialists in this condition who treat patients in their clinical practices consider this the standard treatment for the condition (insert expert PANDAS doc quotes here). The dramatic improvement Dr. Expert has seen in her/his clinical practice with the use of IVIG for PANDAS is echoed by the families whose lives have been changed by this difficult illness, and restored through treatment with IVIG-- many of those cases covered by UHC and carried out safely and effectively by the skilled providers in its network. Take Little Johnny for example... insert compelling story of one of our kids--preferably one whose treatment was funded by UHC. After sharing Johnny's story-- finishing of course with the triumphant return to his former self thanks to that UHC paid IVIG (something many of us have experienced) be sure to mention that Johnny and his family are terrified what this new, baseless policy change by UHC might mean for Johnny should he ever fall into the grips of another serious PANDAS episode following an infectious illness-- the type that are common among children his age and to which he may be exposed any given day just by going to school or playing with his friends. Doctors and parents speculate that UHC, which they'd previously thought of as ethical and honest due to its coverage policy that privileged the medical evidence and patients over the cost, may be caving to industry pressure as other insurance companies have been facing increasing pressure to cover the treatment for this condition and being asked to defend their denials of coverage, particularly when other leading insurers, such as UHC and Harvard Pilgrim, as well as the country of Canada, have medical policies that consider IVIG a proven treatment for PANDAS. Then add something about why treatments for peds and rare conditions don't get FDA approval (financial) and how FDA approval does not apply to the practice of medicine. And quote AAP's paper on peds off-label prescribing/use. We asked UHC and they said, "CYA CYA CYA with some jargon thrown in to sound super official and medical and above all y'all..." Dr PANDAS expert responded to this statement by UHC, "Despite UHC's fancy-word sh*& flinging, the fact remains that the evidence still supports this treatment for PANDAS. None of that has changed since UHC last revised its policy. And UHC has not satisfactorily explained how it reached the conclusion that it's previous policy was incorrect, and if it was incorrect, how it happened that its policy supported the use of an unproven treatment, and covered it for numerous children based on some error on UHC's part, over a period of several years." Then finish by returning to Johnny-- For now, Johnny's parents are just grateful that he's well, and are hoping they'll never face a day that they lose him to another bout with his PANDAS, but are unable to afford the treatment he needs to bring him back to them. Or something roughly like that...