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...

Well, my take is that a stim (self-stimulatory behavior for those unfamiliar with the term- which does come from ASD) is done for a purpose: it has either a calming, soothing, regulating, or otherwise desirable effect. With tics, it's more like "an itch you have to scratch" feeling-- so the person isn't undertaking the behavior/action for the desirable effect it has on them, rather it is done to address the unwanted/uncomfortable feeling that makes them feel the need to do it. As far as compulsion vs. tic-- I think that's actually a harder distinction. But in my mind it's the more subtle difference between the not as deliberate "scratching the itch" (metaphor) behavior/action of a tic and a more intentional/aware/conscience behavior and action done because of a feeling/belief/urge that it must be done. I see a tic as sort of equivalent to all of the small behaviors/actions we might do on autopilot or that we're only semi-cognizant of-- things that our body does almost automatically b/c of an arising discomfort or sensation (and that might cause us discomfort if we didn't do it). A compulsion would stem from a more cognizant, purposeful impulse. I don't really think it's that clearcut or easy to sort out, but that's my oversimplified way of looking at the differences.

No-- a successful study isn't a slam dunk. Many will say it's only one study and isn't enough, etc. They fight hard to deny covering expensive treatments. We really need a concerted effort to move things along-- some of which could happen now. If I was coaching Team PANDAS vs. the Insurance Industry my game strategy would include the following: 1) (Immediately) Draft a letter/statement pointing out that IVIG (and PEX) are part of the standard of care for treatment of PANDAS. Get this statement signed by all of the PANDAS docs, and as many other treating physicians as possible-- from the range of specialties and gen peds (I'd also specifically shoot for a bunch of docs who're based at the top tier hospitals/Universities), as well as relevant researchers and leaders of organizations/institutions. Each treating doc gets a copy of the signed statement to include with all insurance claims/appeals-- so instead of one doc against the machine-- suddenly our whole TEAM PANDAS is on the field for each and every PANDAS insurance case (and they'd all only have to spend time on it once-- some of them just long enough to add a signature). Plus, the team would be more impressive than the outside opinions and external review scrubs the insurance companies get to support their denials (if a doctor is any good, s/he isn't likely to be doing those gigs-- the ones who do are mostly a bunch of hacks and they have little-no professional reputation and probably don't even treat PANDAS themselves). 2) I would send the statement (from step 1) to Michael Pichichero and the editors of UptoDate. I would ask that a revision be made to the PANDAS article so it includes these treatments in the standard of care, and point out that the current article reflects the NIMH's previous position on IVIG, and since it was based on the former position of NIMH they should now edit the article to reflect the most current info and position. 3) I would also try to get to the editors of the few compendia used by insurance companies to set their policies/determine covered benefits. Getting it in one of those would be HUGE--could possibly have bigger impact than the study. 4) I would survey the medical policies for IVIG and PEX, and the experimental/investigative criteria from the major insurance companies. I would use the info I found in those to determine an ongoing strategy and what additional actions might be helpful in getting coverage for PANDAS treatments. I'm sure I'd do more than that but right now I can barely keep my eyes open-- too many successive nights of poor sleep!

If it were me I would just say she has a medical appointment. If they need documentation for their records, give them official appointment confirmation signed by the therapist. If they ask questions beyond that I would say, "I really appreciate your concern for child's name but our family policy is to keep our health matters private." Then if you were pushed further I'd drop something like, "I'm sorry, but I cant share any more about our child's health matters with you. I'm sure you understand, since the personal health information you're requesting is protected by HIPPA." And don't feel badly about standing up for your child's (and family's) right to privacy. Good luck!

Does anyone know why NIH docs don't recommend T&A, especially when Dr. L does-- since it seems like her treatment decisions tend to align to the trends coming out of there, or what people hear from Swedo?

Peg, I'll offer the most practical thing I can... Someone has already suggested separating the paperwork part of the guardianship from emotion. I agree with that and would add: think of it as entirely separate from Allie in your mind if you have to. Don't think of it as writing about Allie. Think of it as writing a list of clinical symptoms and issues. And recognize that even that incomplete, decontextualized information will have to be further depersonalized and translated into the language of the people you must submit it to: administrative/clinical jargon. Remember that their job is not to see the beauty and individuality of your child. Their job is to interpret forms, toss around the jargon and follow a set of procedures. So just give them the right answers and efficiency they desire, do what you need to do for you and Allie, and just don't let yourself care about anything beyond the info requested/required for this. Your feelings about your child, who sees what in her certainly have their own place-- just not this place. On all else-- I am so sorry you're facing so much at once. Know that you are not alone and that you have a small army of us here who've got your back and will always be there for support and friendship when you need it. Thinking of you.

tpotter thanks for mentioning Lyme and co-infections. We've only had the Labcorp test, and since she'd responded so well to IVIG and abx we hadn't gone down that road any further. But maybe we ought to run the Igenex and make sure our bases are covered for the co-infections, too. Would probably be worth some extra testing just to know. ko's mom thanks for sharing what Dr T is doing for your dd-- good to know. Dd had a baseline ekg when she was younger before we did a trial of adhd meds (pre-PANDAS dx when we kept getting independent dxs for all of its various symptoms). If nothing else, we'll at least have that for comparison when we see the cardio. Good luck with the appointments and tests-- hope they'll lead to the answers you need! Keep us posted.

Wow-- how awful (and frightening!) that two doctors missed your infection. I will definitely make sure they investigate/rule out the possibility of infectious causes. Thanks!

Dd has been having chest pains off an on for the past several days. She's just finished a double abx combo for recent strep. She has had periods in the past where she's encountered this type of chest pain, as well. Brought her to the doc today, and we were referred to a cardiologist. I'm glad for the referral-- this pain has come and gone for at least several years and prior to PANDAS dx all of her symptoms were seen as psych in nature w/o evidence or further testing to rule things in or out. Plus, my dh and his dad have a congenital valve defect (we don't know if either kid inherited it). The doc said it could be precordial catch, but that along with the congenital valve thing and dd's history w/ strep made a cardio referral seem necessary. Just wondering if anyone else's children have experienced this or been referred to cardio for strep-related issues? What to expect? Anything I should be paying special attention to?

Thanks for the explanation. I was just curious b/c I hadn't seen that mentioned before and I know many of our kids have some underlying immune deficiencies.

Hi and welcome, mwmmom! Thanks for your lovely, hopeful post. Wondering if you would mind expanding on the PEX/immune deficiency issue? Do the doctors feel there is more risk with PEX for the kids who have the immune deficiencies? Do you know if there's some cutoff IgG level or specific types of humoral immune deficiencies that are considered safe/unsafe? Glad to have you among us:)

I'm putting on my detective cap right now, trying to determine what's going on with my ds and if it may provide new clues that will help us help him. Recently ds had another PANDAS spike and his ped switched his abx to Bactrim for one course. He improved on it. Right at the end of that course when he was going back on Clinda, my dd, who'd been spiking, tested positive for strep again. The ped put everyone on a Clinda and Rifampin combo to try to wipe the strep out. Ds's PANDAS started to spike again when he switched meds. We rode it out in case it was situational or a short term side effect. He's finished the Rifampin now and back to his usual, pre-switch Clinda dose and he's still exploding and really miserable. I'm scratching my head about why an abx that's not typical for strep has worked better than what should be more successful-- since we know there've been strep issues, and dd is still dealing with them so he's been recently exposed. Back at what we think was either his PANDAS onset or his first really significant exacerbation (almost 5 years ago), he'd had a long, ongoing series of infections including: ears, sinus, throat. Some of those infections were found to be caused by Moraxella Catarrhalis and one was caused by "nonfermenting gram negative rods" (not further identified, but noted it was not p. aeruginosa). He was treated with Septra for at least the gram neg infection (susceptibility panel was run). And I know he and dd were treated with Septra other times during that period with our old ped. He also tested pos for "heavy" Moraxella Catarrhalis growth with later infections. I began poking around and found this article about coaggregation (which seems relevant to our community): Moraxella catarrhalis Coaggregates with Streptococcus pyogenes and Modulates Interactions of S. pyogenes with Human Epithelial Cells Does anyone know more about coaggregation? Or how about other pathogens that might respond better to Sulfa/Trimeth than the usual strep players? Anybody see some clues in this or does anything jump out at you? Am I missing something obvious... or obscure? Unfortunately our ped is out for the rest of the week. I am going to try to see a different doc in the practice tomorrow in hopes they'll switch abx and/or start him on steroids til our doc returns. We're heading toward IVIG or PEX soon, as well. TIA!

Research caselaw for some examples of cases in which the insurer (and/or the policy) failed to account for comorbid conditions and its decision was overturned by the courts (I remember seeing at least one ERISA case like this). You may find the language/info/legal jargon and regulations that you need for your own claims/appeal, and/or you can send the examples, or the wording of the court's decision, in with whatever you submit next. Also, are you ERISA or state regulated? If state, contact the BOI and ask if they can legally deny treatment if a beneficiary has a co-morbid condition and one of the medical procedures the insurer requires for coverage is contraindicated due to that condition. I'm guessing you'll find something. Also, BCBS is sneaky-- double check your IVIG policy and see if it reads that the IgG must be two SDs below the norm (which means it's considered low and flagged by the lab) or if it reads that it must be 2 SDs "below the lower limits of normal" which is something I'm not even sure they can definitively determine without the lab's specific data set...(the math/science folks might know???). Also, some BCBS policies have a numerical cutoff for quant IgG for CVID dx, and the 2 SDs below lower limits is actually the wording for the subclass deficiency criteria. It really matters which set of criteria you're dx is coded for- b/c what works for one set may not for the other and even though the insurance company should just contact the ordering to give them the correct code to file under, as we all know that just ain't how they roll. HTH

Oh it's not terribly innovative-- no new medical technology or anything exciting like that-- just a new way to swab my dd She has never been able to tolerate the swab (sensory) and always jerks away/closes up. She was telling a nurse in our peds practice about this and the nurse suggested they try it with dd lying down, so she could tilt her head up, open her mouth wide so the nurse had easy access to the swab target area, and because her head would be on the table, dd wouldn't be able to jerk away. They tried it that way, which dd said was easier for her/better and voila-- for the first time she was positive for strep with an otherwise unexplained uptick of PANDAS symptoms. Ever since, we swab that way and have caught strep w/ PANDAS symptom increases a few times now. We didn't think strep was an ongoing problem for her since she had PANDAS so long before dx, she has flared from other illnesses/immune triggers, and she'd tested negative for strep (w/ the old method) so many times since being dx'd with PANDAS. So grateful for that nurse!

Sadly, we recently found out ds is epi-pen-toting allergic to coconut, so we no longer use it in our house. But we do use evening primrose oil topically and have had good skin results with that, too. Just thought I'd mention in case there are others who can't do coconut.

Hi Dawn, We just learned our dd has been having recurrences of strep, generally asymptomatic except for the PANDAS symptoms. We didn't know the strep was an ongoing issue for our dd until a new nurse changed the swab method and we began catching it (she had PANDAS a long time before dx, so we thought strep was not behind the flares she's had more recently, since she does react to other infectious triggers). Now, though, when she starts ramping up w/ PANDAS symptoms we've been swabbing her and sure enough-- positive without strep symptoms. This has been a tremendous revelation; it explains why we've had puzzling setbacks, etc. My dd has been on prophylactic abx (actually treatment dose, I think-- 500 mg x 2/day) of Augmentin but has been getting strep, anyway. She's been negative w/ the same swab method in between positives, and my family doesn't get elevated titers even when they have had confirmed strep (in case either of those facts are meaningful to your query). Presently we don't have a PANDAS-specific specialist on our kids team, so can't say what they'd do for it, but our PANDAS-friendly, awesome ped just put my ds, dd, and dh on a course of a harder-hitting abx combo (Clindamycin + Rifampin) that has apparently been used lately for some tenacious strep strains. For various reasons she didn't feel I needed the abx otherwise we would have all been put on it. The goal is to wipe the strep out of our entire household. Can't speak to the Lyme component, but thought I'd reply about the treating family members issue, even though it wasn't ordered by a PANDAS doc. Will be very interested to see what's being done for others on this front. Cheers

I can think of something the doctors could do that could really help things (and help them/save them time). They should draft a statement or letter stating that immunomodulatory treatments are considered standard of care for the treatment of children PANDAS (noting that which of the two treatments is prescribed depends on the specifics of the child's case). Then they need to get as many as possible of the docs treating PANDAS to sign it-- even if they don't typically collaborate with one another-- and with the various areas of specialty represented (and any representatives of major professional orgs, researchers, etc.-- the more weight behind it the better). The key is having a collective statement made by the doctors in the field who actually treat the condition (not just who have the same credentials as the ordering doc but don't treat it or don't believe in it-- so more credible than the insurance company's md or external reviewers), establishing immunomod as standard of care for PANDAS. Standard of care is just that: the standard for treating a certain condition. If it is considered the standard by the docs who treat the condition, it can't really be experimental-- since it's not one or two of them trying it out or acting on a hunch to see how it goes. A collective statement makes it clear that it's a regular tool in the established doctor's bag. Once the statement/letter is drafted each doc gets to keep a copy on file so they'd all have it to submit to insurance companies for their patients' denied claims. Beyond that, there are a few other things they could do that might help... Such as reaching out (and applying pressure if necessary) to the editorial boards and publishers of the standard reference compendia insurers use to decide whether a treatment should be covered (ironically they use the absence of PANDAS in the IVIG/PEX sections as reason to deny coverage, overlooking the fact that PANDAS doesn't actually appear anywhere in the compendia for any drug/treatment-- in other words they cover other treatments that have no support for the condition in their precious compendia and deny a treatment based on a source that doesn't even acknowledge a single treatment for the condition or even mention it by name...). Getting the standard of care treatments included in one of the compendia would be a tremendous help-- insurers would have a hard time denying it. Also, they (PANDAS docs) should be publishing in professional journals and peer-reviewed lit based on their hands-on experience and the info they've gathered from their practices. The more the treatment is presented as the standard in the types of sources most medical policies require for coverage, the harder it gets to deny it (and hopefully the more accepted it becomes). And of course they should be advocating professionally-- organizations, peer to peer, etc. Must sleep-- more later...