GraceUnderPressure

I don't know - they don't seem to be particularly helpful when I contact them. But I will go ahead & call on Tuesday & find out for certain. (I think encephalitis is more appropriate, too - clearly inflammation is a major factor in this condition. I was surprised to learn that encephalopathy is the more common choice)

Congratulations, Holly! That's wonderful news! Hope you are doing well, too! ~Grace

Okay, it's 4am over here & I've been on this stupid computer so long that I am hoping I'm not hallucinating, but I just went back to look again at some of the diagnostic codes on UHC's IVIG policy & found them changed rather significantly. (Gee, might they have read this thread?) On the last page of the document it has a POLICY HISTORY/REVISION INFORMATION and the following was just added - In theory, it looks like we can now resubmit my ds19's claims under 323.81 Other causes of encephalitis and encephalomylitis Does that sound right - wouldn't it apply? Or would it not count because they just changed it & his treatments were back in the spring?

Ya know, poring thru so many parent's hassles with insurance - as if dealing with this condition isn't purgatory enough - I am thinking what we need is a politician who would be willing & able to legislate something for PANDAS treatment. Does anyone have connections?

I am going to try to contact the person at Dr. T's &/or Dr. B's offices who handles the insurance billing next Wed (I figure the Tues after a holiday weekend is likely to be really bad timing) to see if they can help. Are they good with email or should I go ahead & phone? (Or should I try to get my dr to contact them? I suspect that will take longer though) Meanwhile, I am trying to pull together info for an insurance appeal as it is looking like I'm probably not going to get out of it. Can anyone out there - esp if you've written an appeal before - share with me how to tell if research is "peer reviewed"? Is it enough to give just one citation as proof or should I do more? And do I need to print out & attach complete copies of the research I am citing or is it enough just to give the citations? I will try to post it here when I finish so that others might be able to use it. Or maybe I should wait to see if it is successful first.

Thank you so much for your commiseration, Nancy! There have been so many past raves, I was starting to wonder if I was the only one who has been less than happy with UHC. I have heard much worse from these wretched companies, but when you're expecting better than what you've had before and you end up with worse, it's all the more frustrating. My DH had a possibly life threatening clot in his carotid artery back in January & UHC would not even approve the scan to check it initially. The dr was really ticked (hmm, between Tourette's & Lyme I don't think I want to use that word anymore - let's just say the dr was very irate) & told my DH to go get it done anyway because he guaranteed they were going to cover it. DH heard him reaming somebody from UHC on the phone as he left to get it done. They agreed to cover it. Turned out that he did have a tear that had developed a clot & luckily it affected his vision rather than his brain so that he had a warning it was there - he spent a week in the hospital on blood thinners. We're supposed to get him re-scanned this month to see how it's healing & I don't even want to try to deal with it until we've resolved this (plus with a possible $25K bill looming on the horizon, we can't afford it even if they do cover it). We're going to see an LLMD in Oct. & we're wondering if we'll be able to afford the treatment. We were never rich, but we used to have a small margin to cushion us from the unexpected. These past few years have eaten up virtually all of it. If we succeed in getting ds functional, he's going to have to pay his own way thru college. Still, that's a better prospect than not succeeding. We had UHC almost a decade ago (my DH's company changes almost every year) & never had a problem - we did like them back then - but all of our healthcare issues were so straightforward then so I guess that was the difference. I think I will go ahead & contact someone with my DH's HR dept to see if they can possibly help. I doubt it, but don't see how it could hurt.

I hate, hate, hate dealing with insurance. Lord help us all when the govt finishes taking over healthcare - it's the only bureaucracy that surpasses the insurance paper chase. Anyway, so here's the challenge: United Healthcare has their IVIG policy available online https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Drug%20Policies/IVIG_policy.pdf On page 1, they state "Immune globulin is PROVEN for the following:" which is followed by a list that goes on to page 2 where they have "Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (streptococcal infections induce exacerbation of symptoms in some children with obsessive-compulsive and tic disorders)" included on that list. BUT (and here's the part where our coverage is being denied) if you go further on to page 15 of this document, they list diagnosis codes that are "Proven" and then those that are "Unproven" -- and the list of "Proven" codes has NOTHING that applies to PANDAS while the list of "Unproven" has most of the codes normally submitted. The only thing I can think now before I have to try a letter of appeal (I so do not have time for this crap - my life is falling apart while I am playing their "guess which code we'll cover it under" game) is to try it under one of the Sydenham chorea diagnostic codes maybe? Or is it possible that my DH's Human Resources dept might be able to help? Anyone had any luck with either of those?

Thanks! I was actually thinking of calling one of the major PANDAS dr's offices to ask, but I wasn't sure if they would be willing to help since they are all so busy & we're not part of their practice. Do you know if they have done anything like that before? (Or does anyone know if any of the other dr's offices would be receptive?)

One of my boys, as a toddler, tested negative for yeast but had a white coating on his tongue. Dr. said that the tests are notoriously inaccurate because yeast is so hard to culture (begging the question - why did he bother to test?). Then he went ahead & treated my ds for yeast & it went away (though he develops acetone breath everytime we eat carby food so I suspect it is only barely under control). So it seems like you can have a fairly blatant case of yeast & still test negative, FWIW.

Okay, I sent an email to UHC asking for clarification of their rejection of our IVIG coverage since the EOB wasn't very clear if their problem was with my son's diagnosis or if it was the diagnosis code. Apparently they do not like the diagnosis code for "encephalopathy" or "misc. autoimmune conditions". That last line really irked me. Anyway, does this UHC reply make sense? Their own IVIG policy book lists PANDAS as a proven condition that they cover. But PANDAS does not have a specific diagnosis code. The dr's office tried submitting it with the diagnosis code for "encephalopathy" first, then I asked them to try resubmitting it with the code for "misc. autoimmune conditions". The UHC rep tells me that they can't provide the dr's office with the diagnosis code so then how the (bleep) do we figure out which diagnosis code UHC will recognize PANDAS under? This is nuts! I sent them a response asking them how we are supposed to figure out what diagnosis code they will accept PANDAS under (hopefully a little more restrained than here), but I don't hold out much hope of getting a different answer. Does anyone have any ideas? Does anyone know what the AMA guidelines are for PANDAS & IVIG?

No neuro drugs? no antibiotics? no expensive ivig or pex? no worms? Where do I sign up? Thanks for sharing this info! It sounds too good to be true!

Well, haven't been here much lately. Wish it was for happy reasons, but not the case. I've been too stressed to do much more than just cope lately. But I'm here to beg for any help y'all can give. The 2 ivig treatments we had done for our ds19 back in the spring were rejected by UHC. (I never bothered to get preauthorization because their website page on IVIG said that it was covered for PANDAS & preauth was not necessary - since we had a PANDAS diagnosis from the dr, we thought that was all we needed) UHC asked the dr's office for copies of ds's medical records, questioned the encephalopathy diagnosis the dr had used for it, & said that ivig has not been shown to be useful for encephalopathy. So Dr. R's office manager resubmitted the claims with different diagnoses since there isn't a specific one for PANDAS - one with a 'misc. autoimmune' code and the other with something like 'hypogammaglobulin' (based on a low test result he had back in 2005! I'd have been surprised if they'd bought that one) I've been holding my breath for the last 2 months in hopes they would take at least one of them, but word has finally come down from on high at UHC that they will not cover the 2 ivig treatments my ds19 had in April & May because, once again, the treatment has not been shown to be useful for his condition. I want to write a letter of appeal (I need to - we can't afford $25K!!!), but I'm not sure if I can -- They told me I would need to get a letter of medical necessity from my dr's office plus any medical records which would support the diagnosis & treatment. My ds does not have a clinical history of strep because his immune system has always been hypo-reactive. So he has had a sore throat a number of times over the years, but never anything that sent me running to the dr's office except one time around the age of 6 (I think) when it was positive for strep - but I don't have any copies of that result, & since it's been at least 13yrs, that family dr's office does not have those records anymore. Still, his condition always worsened when he got sick or his immune system was taxed. And I suspect he was exposed to mycoplasma by his brother at the time that his condition seriously nose-dived, but the test result was ambiguous (I'm sure the insurance would therefore consider it negative). His Cunningham test results put him just under the mid-level for PANDAS so it's considered positive, BUT insurance doesn't recognize her test right? His stomach couldn't handle augmentin or doxycycline, but his condition definitely improved on zithromax. So we went ahead & tried the ivig's. I figured even if it didn't help his tics, it was supposed to help the brain repair itself from the inflammation, & after 14 yrs with this condition, he surely would need any help he could get in that dept. He got incrementally better for approx. 2 wks after the first one, but then our family was passing around a cold type bug and he began going back to where he had been before. We had hoped the 2nd would bring back the benefits we started to see with the 1st, but one of his brother's developed a stomach bug & we saw nothing Then we tested positive for Lyme - positive even by CDC results. Our first LLMD appt fell thru & we had to line up a new LLMD (who we'll be seeing in Oct). Meanwhile, I discovered mold due to a leak under our kitchen sink & it appears to be a good possibility that mold allergy is contributing to ds's issues as well. Now I would imagine that most of us on this forum have no problem looking at my ds19's case history & recognizing it for what it is, but how do I furnish proof to the insurance company to accept it as PANDAS? I thought the dr's were allowed to make a diagnosis based on clinical presentation rather than lab tests - so what do you do when your child is all clinical presentation with no concrete labs? It would have helped if I could point to benefits that ds received from the treatments, but what we did get, didn't last long. Do I even have a leg to stand on here or should I just despair & start researching bankruptcy?

No, though initially my ds19 had some mild symptoms of Aspergers, and we thought he might have some sort of shadow syndrome, then we figured it was NVLD. It wasn't until the tics increased significantly that we eventually landed on Tourette's and about 2 yrs later PITAND. However, my 14yo ds IS on the spectrum - PDD-NOS. I've believed that mercury is a factor for years, not because of vaccines, but because I naively had a dental amalgam replaced while I was 5 mos pregnant with him (peak brain development time for the fetus). His issues correspond perfectly with the govt's collection of research data for chronic low level mercury exposure in their 1997 report on mercury. It was while I was looking thru my dental records to confirm if my recall for ds14 was correct that I realized I had had my 5th dental amalgam placed only 2 mos before I conceived my ds19. So he would have received a somewhat elevated exposure in the womb himself. And then both of them received all their vax, except hep b, right on schedule. DS19's tics first showed up around the age of 4 not long after his 4yr old vax series. It was also at that time, out of the blue, that he developed difficulty making eye contact. I suspect the vax's further damaged his immune system so that when he was exposed to whatever bug triggered his tics, he was totally vulnerable to it.

(I am posting this here because many of us are dealing with autism as well as PANDAS or PITAND, but also because I believe that all of these disorders have their roots in the impairment of the immune system.) Here are a couple of articles about a new study that was just completed that seems to provide an important link substantiating the connection between mercury & autism. Still, I'm cynical enough at this point that I am only curious as to how they will deny it, as opposed to whether or not they will. (I believe that ultimately autism will be proven to have many possible environmental triggers, as will its cousin spectrum disorders) ~Grace ========================================================================================= Mercury link backs autism cause theory Julia Medew August 10, 2011 A FAMILY history of mercury poisoning has emerged as a significant risk factor for developing autism, researchers say. A survey by Swinburne University in Melbourne of 522 Australian survivors of Pink disease - a form of mercury poisoning common in the early 20th century - found one in 25 of their 398 grandchildren aged six to 12 had an autism spectrum disorder. The prevalence is six times higher than the one-in-160 diagnosed in the general population. The study, published this week in the Journal of Toxicology and Environmental Health, found the grandchildren did not have elevated rates of other conditions such as epilepsy, Down syndrome or attention deficit hyperactivity disorder. The authors said they did not validate the autism diagnoses provided by the survivors but their study added to mounting evidence of a link between genetics, mercury sensitivity and autism-spectrum disorders. They said the research also strongly suggested autism was caused by combined genetic and environmental factors. [http://www.smh.com.au/national/mercury-link-backs-autism-cause-theory-20110809-1il3t.html] ========================================================================================= Familial Susceptibility to Mercury is a Risk Factor for Autism Download image New research shows six-fold risk of ASD in grandchildren of acrodynia survivors SafeMinds calls on the pharmaceutical industry to remove mercury from all products, including vaccines. ATLANTA, Aug. 9, 2011 /PRNewswire-USNewswire/ -- Researchers from Australia have identified an ancestry of Pink Disease (Infantile Acrodynia) as a risk factor for Autism Spectrum Disorders. Pink disease was common in the first half of the 20th century as a mysterious illness affecting children between the ages of eighteen months and three and a half years. The disorder presented with apathy, irritability, and progressive loss of speech, symptoms very similar to those exhibited by children with autism. Nearly fifty years passed before a connection was made between the disease and exposure to mercury in teething powder, worm medications and diaper rinses. The disease developed in approximately 1 in 500 children exposed to the products and experts identified idiosyncratic sensitivity to mercury as the key risk factor. (Photo: http://photos.prnewswire.com/prnh/20110809/DC49865) The new study, published July 28th in the Journal of Toxicology and Environmental Health available at http://www.tandfonline.com/doi/abs/10.1080/15287394.2011.590097?journalCode=uteh20, investigated the hypothesis that autism can result from the interaction between mercury exposure and a genetic predisposition to sensitivity to mercury. Currently, 43 peer-reviewed studies support a link between mercury and autism, and experts agree that autism is caused by the interaction of genetic susceptibility and environmental exposures. The Australian researchers, David Austin, Ph.D. and Kerrie Shandley investigated whether individuals with a known hypersensitivity to mercury were more likely to have descendants with an autism spectrum disorder. They surveyed 522 adult survivors of Pink Disease about the health of their grandchildren. They found that 1 in 25 of these grandchildren had an autism spectrum disorder compared to 1 in 160 children of the same ages in the general population in Australia, a staggering six-fold increase in relative risk. Dr. Austin had the following comment, "The large elevation in autism prevalence in this group of children was startling especially given that rates of other childhood disorders were at expected levels. The thing that differentiates these children from the general population, to which they were compared, is a family history of mercury sensitivity. We were simply blown away by the results." SafeMinds Board member Lyn Redwood RN, MSN whose son was diagnosed with mercury toxicity and autism calls on the pharmaceutical industry to once and for all remove mercury from their products, "The FDA has identified over 130 medical products that contain mercury http://www.safeminds.org/news/documents/Mercury%20in%20Drug%20and%20Biologic%20Products.pdf and 7 vaccines that contain mercury http://www.vaccinesafety.edu/thi-table.htm. The continued use of these products in to the 21st century when safer and more effective alternatives exist is unacceptable and dangerous." For more information on the symptoms of Pink Disease and the overlap with autism please visit http://www.safeminds.org/news/documents/Acrodynia%20comparison%20combined.pdf or contact Lyn@safeminds.org. [http://www.prnewswire.com/news-releases/familial-susceptibility-to-mercury-is-a-risk-factor-for-autism-127323778.html]

I'm curious - how did you determine it was Stachybotrys? Did your handyman do a test or is there some identifying characteristic that distinguishes it from other black molds?

Thanks - I'm just not sure how long we should stay away. And I don't know if she's taking antibiotics or not either.

My kids were going to start their swim lessons yesterday, but the lady who teaches them has developed a fever and sore throat & said she will resume lessons when she has been without a fever for 24 hrs. My ds19 who is our immunologically incapacitated child is already not going to participate because he has a reaction to something she uses in her pool that causes him to itch like mad (we still have not figured out what). But besides my concern about them picking up something & bringing it home to expose their big brother, my ds8 seems to be on the edge of developing PANS and I am very worried about something pushing him over into it. Please share your opinions & experience with me on how I should handle this!!! ~Grace

Research would seem to indicate that, in both conditions the causes vary & the areas of the brain affected vary - any overlap most likely occurs simply because both conditions involve inflammation of the brain & detoxification issues. It will be interesting (to say the least) to see what finally ends up being used as the distinguishing characteristic(s) to separate all these. My ds19, whose PANS has been very slow onset till recent years, was very hard to figure out. We thought it might be what some were calling "shadow syndrome" of Asperger's initially. Then he seemed to fit more into the category of nonverbal learning disorder. Then the tics began picking up speed & we eventually landed on the Tourette's diagnosis w/a comorbid attention deficit. There is NO autism, no Aspergers, no Tourette's, none of that in our family tree (except a 6mo period during which my mother who had just become a teen developed a throat-clearing tic out of nowhere, & once it went away, it never came back - wanna bet she had been sick shortly before that appeared?). We can see vague traits in some family members & in ourselves, but only one or two rise to the level of somewhat quirky - certainly no dysfunction at all & nothing that comes even close to resembling what is going on with my kids. There ARE plenty of immune issues on both sides, however. Even before I learned about PANDAS, I looked at my 5 kids (TS, mild dyslexia&impulsivity, PDD-NOS, ADHD, & food intolerances) & told my DH, their symptoms & the severity vary widely, but the one thing all of their issues have in common is that their immune systems are impaired to varying degrees. So for those who believe that autism is simply one of many diagnoses of immune impairment, I guess they would see autism & PANS as being together on that sort of spectrum. But the fact that there are distinct symptoms distinguishing the two would certainly preclude us from speaking of them interchangably or synonymously.

Inadequate immune systems under multiple assaults?

Oh, and here's a "duh!" question, I'm sure - we are currently fighting mold in our house because of an apparently long term leak(s) under our kitchen sink. I only just found it about a month ago now, with mold growing on the presswood of the cabinet & have been working to clean things up & then get it remediated. Is it possible that it is a cause of ds14's cough as opposed to just an aggravant?

Thanks, Wendy! What is BEG nasal spray?

DS14 has PDD-NOS (he's pretty definitely mercury injured - I cluelessly had a "silver" amalgam replaced while I was 5mos pregnant with him & his symptoms are completely consistent with the EPA's 1997 report on low level chronic mercury exposure) - he has always been IgG allergy prone (quite a few food intolerances) & does have a mild IgE dust allergy. I have not had him evaluated because our family dr tested my ds8 for myco p & I was really unimpressed because they did not seem to have any clue what they were doing. I have no confidence in their test results -- or their ability to treat it properly. Only our ds19 who is a definite Lyme & possible myco PITAND has had testing done thru a PANDAS dr, but we think the whole family (7 of us) has Lyme (as well as possible myco) to some extent. It's just that our money is so tight right now, we can barely afford to treat our oldest who has it to the point he's dysfunctional (Tourette's). I was considering trying to copy the treatment ds19 gets in October for the rest of us, depending how $ it is. DS19 came up neg for babesia thru Igenex, but that might be a false neg, right? What else is used for myco besides zithromax? Not sure if ds14's non-respose to zithro means it's probably not myco or it's a myco that doesn't respond to zithro or is it possible that ~2 weeks was not long enough to see some improvement? Is there a natural treatment for either myco or babesia that could at least help start the fight or keep the damage at bay till we can afford to get ds14 treated?

My ds14 has been having a dry cough for months. We had a bout of something last year during swim lessons that I believe may have been mycoplasma, but since ds8 (who had it the worst) tested negative, no myco treatment. A little while after that exposure, we kept having cold-type symptoms off & on for maybe a 5 wk cycle (it'd go away & then come back over & over again). I started us on lomatium & that seemed to stop whatever that was. Then we had a bad cold or bronchial type bug about 5 or 6 mos ago (I think?) and ds14 had a bad cough that has never really gone away since. I tried some of his older brother's zithromax for a couple of weeks because he had a little extra to spare at the time, but noticed no difference in the cough. Is there anything besides myco that can cause something like this? Is there a natural treatment we can try as we have absolutely no money to spare right now to take another child to a PANDAS specialist? (We're not even sure if we'll be able to afford the treatment given to us by the LLMD we'll be seeing in October) ~Grace

This is miserable! This is the worst my allergies have ever been! Is there anything I can do to relieve the symptoms? Or should I assume that it's more than allergies? Should I treat this like biotoxin poisoning? The symptoms are not constant as I would expect if it were from the molds in the house (& probably the dust that I am stirring up as I clean, too) or if I had biotoxins in my system. In fact, it seems to be the day after the city's pollen reports show an increase in molds that I am getting it so bad (headache, stomach pain, eczema flare up, feel like I can't breathe as deeply as I need to, can't think as clearly & very forgetful). So I am thinking that this stuff in the house has hyped my immune system so that it is really struggling when a larger load hits. Can't get cholestyramine, but would bentonite clay or charcoal caps (which I do have in the house) help relieve things if it is caused by allergy rather than biotoxins? (sorry if this is a stupid question, but my thinking is definitely fuzzy!)

susie, is it for the tablets? The manufacturer states that the tablets are not for use in children 11 or younger (but does not state why). The problem for the pharmacist filling the Rx is, not only would it be ignoring the mfr's clearly stated warning if it's for the tablets, but also that the dosage is technically (therefore legally) an overdosage, & if anything happens to your child, the pharmacist can lose their license, in addition to opening themselves & their company to a lawsuit. It is frustrating, but I'm sure you can understand why they would not be willing to risk it. It is possible that you can take it to another pharmacy & find a different pharmacist who is willing to take the chance. If I were in your shoes, though, I would ask Dr. K to phone in another Rx for it to a different pharmacy & ask him to prescribe the liquid with "Take as directed" rather than specific instructions. And when they go over the standard directions with you when you pick it up, just nod your head that you understand & leave it at that. Just my .02!