concerned lady

I just watched the hour long interview of Dr. Metchler (Dr. CD/Conversion Disorder) with Dr. Minion (Dr. McVige), and guess who the interviewer was--the very lady who wrote that article! At least (the interviewer's questions were better than the article) she did ask some pointed questions that viewers sent in. I'll post more of my impressions, after others have had a chance to share their impressions. I was yelling at my computer screen, at much of what was said by those 2. Scary and Unbelievable. Whew! Sincerely, Carol http://cantbreathesuspectvcd.com

I called up and spoke with the lady writer of that article. She was pleasant, and listened to me (to a point), and I think she may be willing to consider the possibility of multiple factors, BUT... I think she has misinterpreted some of what Dr Sue Swedo wrote, and not being in the medical professions, she hasn't dug deeper. I also think that like many, she is somewhat fixated on the "group" aspects (in her mind, the conversion disorder, I think), rather than digging much more deeply, like Dr. Trifiletti is doing, into as many possible factors, as possible. In what Dr. Swedo wrote, as replies to The Batavian's questions, Dr. Swedo wrote that she thinks a PANDAS epidemic is theoretically possible. This has been ignored by those who believe that's just not possible. Dr. Swedo wrote that PANDAS can start AFTER puberty, and this also has been mostly ignored. It may also be helpful to eventually learn what the similarities & differences are, according to Dr. T., between PANDAS & PANDAS-like conditions. My website is about a condition that was also originally thought to be hysteria among females. It's not. My hubby and I each had it, over 10 years ago. But some docs still think it is hysteria, even as they watch some patients' faces turn blue, from hypoxia, verified by arterial blood gas testing. Sincerely, Carol http://cantbreathesuspectvcd.com

Dear nicklemama, Thanks for trying to help me find Kiera's private message (pm). I looked to the right of my "name", and it said "0", and when I tried to find any new messages, I couldn't find any. Hopefully Kiera will send me an email. I hope many from this forum will ask pointed questions on the live "show", early this evening, with the DENT "docs". Sincerely, Carol http://cantbreathesuspectvcd.com

Please help me do this (to find your message)--So far, I can't find it. Also, my email is fsds@rkymtnhi.com Thanks, Carol

There's a WEALTH of great information in this thread from each and every one of you! I'm always learning more from you all. Thank you. One additional thought I was reminded of, is this: Several years ago, I asked a question on a gluten sensitivity forum, "Does eating gluten, by accident, by gluten-sensitive people, cause an increase in tics?" The answer from gluten sensitive people or parents of gluten sensitive kids, seemed to be YES, in many cases. Gluten sensitivity can masquerade as lots of things, including LUPUS. Here's an idea, as food for thought, in addition to everyone's excellent advice: Try going gluten-free, for a month, and see if this helps, at all. There's a Gastroenterologist (Dr. Kenneth Fine, MD), who has a lab called EnteroLab, in Dallas, TX, ( http://www.finerhealth.com ), that is highly reliable in spotting undiagnosed (so far) gluten sensitivity. Gluten "sensitivity" involves not only Celiac Disease, but, from Dr. Fine's research over many years, (and he's one of these folks) the majority of gluten sensitive people have a NON-CELIAC type of gluten sensitivity. One "caveat"/warning, about his stool sample testing, that Dr. Fine says: In about 500 truly gluten-sensitive people, about 499 will come out "positive" on his stool sample test results (bioassay), that looks for elevated numbers of IgA antibodies to gluten (or to milk proteins, or to soy proteins, or to yeast proteins, or to egg proteins, or to corn proteins, if he got the corn test ready yet). Then, there's the 1 out of 500 truly gluten-sensitive people, who IS "sensitive" to gluten, but who comes out "false negative" on EnteroLab's stool sample tests, for this reason: "IgA deficiency", meaning, as I understand it, the person's immune system doesn't (or is not able to) direct/instruct the large intestine (colon/gut) to make those IgA antibodies to gluten, etc.), and therefore both blood & stool sample tests, show a "false negative result". Dr. Fine's EnteroLab people (972-686-6869) told me once, not that long ago, that there is a simple blood test, that can be done by one's doctor, to determine if someone is or isn't "IgA deficient". Then, if NOT IgA deficient, (meaning that excessive numbers of IgA antibodies to the proteins a person is "sensitive" to, will be able to be found in one's large intestine--where stool is made!), then: Dr. Fine's stool sample testing at his lab, EnteroLab can, with high reliability, point towards specific food protein "sensitivities". Ironically (maybe more than ironically?), EnteroLab's test kits are banned in NEW YORK STATE!!!, so that a person would have to go to a neighboring state to receive the test sample kits, and also to send back the stool sample to EnteroLab. Dr. Fine said that if someone were to come out negative on his stool sample testing (or, finds out in advance, that s/he is "IgA deficient"), then the true test, in the final analysis, is to not eat the suspected protein(s) for 3 months, and see if symptoms improve (decrease). Gluten sensitivity can mimic not only Lupus, but can mimic (seem like & get misdiagnosed as) MANY other things, and gluten sensitivity (& sensitivity to milk proteins, soy proteins, yeast proteins, milk proteins, corn proteins, etc.) can cause REFLUX, too, when ingested (in foods &/or beverages, &/or even in the air, like in a glutenous bakery, etc.) by those "sensitive" to any of these food proteins. If anyone is interested in the possible gluten connection, please see my website, for some "tips" on eating gluten-free, with links to those who have been there, done that. Sincerely, Carol http://cantbreathesuspectvcd.com

I agree with them (and all of you) about Dr. Drew and Dr. Bowtie! Amazingly accurate observations by young people! It's good that they felt able to be open and that they expressed their feelings like that, even though they don't understand what parents went through! Do you think they might be interested in giving a verbal report about PANDAS, at school? If yes, this could make them "an important PANDAS authority" in the eyes of both their teachers and the other kids! And, maybe other kids might recognize symptoms they hadn't recognized before? I also was touched by the daughter who wants to become the easier type of doc--an othopedic doc. She might change her mind eventually, later on. Sincerely, Carol http://cantbreathesuspectvcd.com

I agree totally, with all your comments! I received an email on Monday evening from a PANDAS mom, that was a press release by Dr. Trifiletti, which I'll post here. Notice the following parts (which I'll put in bold), in Dr. T's press release, that weren't (yet) included in an internet newspaper's description of what Dr. T. said, in Dr. Drew's show; ------------------ February 6, 2012 Press Release: LE ROY, NY TEENS: BEHAVIORS LINKED TO INFECTIONS Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results of the laboratory data that he collected in standardized fashion from eight of nine girls he examined in Le Roy, NY. National attention has been drawn to the plight of the teens who have been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes walking pneumonia). All eight girls tested show evidence of infection with at least one of those pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I'm confused by that because he's never actually seen or interviewed any of the nine girls I examined.” These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the doctor said that the cluster will remain a mystery. “I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply 'the straw that broke the camel’s back,'” said Trifiletti. However, the infectious exposure points the way to rational medical treatment for these children, which he said is of immediate importance. “Clearly, their response to the treatment I've started will be helpful in supporting my working diagnosis,” he added. As with most illnesses, Trifiletti said there is a complex interplay of genetic and environmental factors involved. As with all illnesses, psychological factors possibly play some role as well [article describing Dr. Drew show, used the word "likely"]. “All we have done here is provided evidence for exposure to two infectious agents as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.” To reach Dr. Trifiletti contact: Telephone: 201-962-7284 Email: trifmd@gmail.com Website: http://www.site.neurokidsr.us For additional Information about PANDAS http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questionsabout- pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcalinfections. shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net ######### --------------------- I also found it VERY INTERESTING that Iowadawn discovered, as she wrote above: "I read tonight that the [NYS] Dept of Health now updated that 8 of the original 12 had HPV vaccinations." Let's hope that there are MORE UPDATES, SOON, with important information like that! Sincerely, Carol http://cantbreathesuspectvcd.com

Hi EAMom, I was happy to have just received an email from a PANDAS mom, containing a current press release by Dr. Trifiletti in it, and I wanted to share this press release with folks on this forum: ---------------------------------- "February 6, 2012 Press Release: LE ROY, NY TEENS: BEHAVIORS LINKED TO INFECTIONS Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results of the laboratory data that he collected in standardized fashion from eight of nine girls he examined in Le Roy, NY. National attention has been drawn to the plight of the teens who have been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes walking pneumonia). All eight girls tested show evidence of infection with at least one of those pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I'm confused by that because he's never actually seen or interviewed any of the nine girls I examined.” These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the doctor said that the cluster will remain a mystery. “I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply 'the straw that broke the camel’s back,'” said Trifiletti. However, the infectious exposure points the way to rational medical treatment for these children, which he said is of immediate importance. “Clearly, their response to the treatment I've started will be helpful in supporting my working diagnosis," he added. As with most illnesses, Trifiletti said there is a complex interplay of genetic and environmental factors involved. As with all illnesses, psychological factors possibly play some role as well. “All we have done here is provided evidence for exposure to two infectious agents as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.” To reach Dr. Trifiletti contact: Telephone: 201-962-7284 Email: trifmd@gmail.com Website: http://www.site.neurokidsr.us For additional Information about PANDAS [i'm adding this note in square parentheses, for clarity--not by Dr. Trifiletti -- to Dr. Trifiletti's press release: PANDAS stands for Pediatric (and older kids & adults too) Auto-immune Neuro-psychiatric Disorder Associated with Streptococcal and other bacteria, viruses, other organisms, and perhaps vaccines, etc.]: http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questionsabout- pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcalinfections. shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net ######### " ------------------------------ Sincerely, Carol/Concerned lady http://cantbreathesuspectvcd.com

Everyone is sharing great information here! There are many moms here, who do see a connection, in their children (maybe vaccinations causing PANS, &/or, pre-existing PANS being worsened/flared by vaccines), so I am glad the vaccination connection to PANS is being explored here! I also encourage moms here, to contact Marcella, and tell her about how antibodies to organisms, not the organisms themselves, cross the BBB/blood brain barrier (although I admit I don't know enough to say that organisms can't cross the BBB). Marcella is more humble than some may realize, and she admits mistakes, when they are pointed out to her. I urge COMMUNICATION with her, before too easily giving up on her. She is a caring mom, like you all, and "give and take" of information, may help with sharing important information in both directions, and correcting errors, too. Here's a link to a very recent post Marcella made, on her vaxtruth.org website, regarding a question she posed to Dr. Drew, during a "chat", and Dr. Drew blew off her concerns, with no justification for ignoring her points. See what you think: http://vaxtruth.org/2012/02/vaccines-are-not-involved-in-leroy-illness-dr-drew-says-so/ Keep up your good work, getting the word out to parents and doctors! Sincerely, Carol http://cantbreathesuspectvcd.com

Hi EAMom, Thank you so much for your link and transcript of the dad Jim DuPont, in Le Roy, telling what he learned, educating Dr. Drew! Dr. Drew appears to contradict himself a lot, and he seems scattered--and Dr. Drew also seems to lean too much towards "conversion disorder", without demanding a lot more testing of all kinds! It will be good to hear (soon) the results of Dr. Trifiletti's testing of many of the Le Roy kids. The school people and NYS Health Dep't seem to be hiding things, and I hear that the school is "lawyering up". What do they know, that they won't admit? Why are they stonewalling the Erin Brockovich team? Why is the health department ruling out everything, when they know almost nothing about things that parents on this forum know a lot about? It will be helpful to get test results from Erin Brockovich's team, too, regarding the toxic railroad derailment spill of 1970--biggest TCE spill in U.S. history, and 3 miles from the school! Some questions that need ACCURATE, truthful answers to, are: Were the natural gas wells right at the school, using fracking chemicals (neuro-toxins) or not? What infections did all the tic sufferers have, around the time of, and before the tics began? What were all vaccinations that each child had, or didn't have? What "batch" were they (vaccines), if administered by "the school"? (thinking of a bad batch, perhaps). What did the girls in Corinth and another nearby school district (Byron-Bergen) have in common with Le Roy, where all 3 areas had kids develop similar tic disorders? (PANS? Vaccinations? Environmental insults? The flooding from the hurricane? Fracking in natural gas wells? Other?) I think that the wonderful dad, Jim DuPont, is probably right, that there are multiple factors playing a role, causing this Le Roy outbreak of tic disorders. I think the psychiatrist from DENT (who gets paid by big pharma), who is pushing the diagnosis of "conversion disorder" in the Le Roy situation may be trying to create a convenient distraction, (SMOKESCREEN), a decoy, to consciously or unconsciously (if he's in "denial") try to prevent parents from finding people who can help them to look for and find the real causes of what's happening there to their chidren, and in other areas, too! Sincerely, Carol http://cantbreathesuspectvcd.com (My website is about a medical condition that was originally, incorrectly, called hysteria among females, so in this way, I can relate to the Le Roy parents and kids... )

---------------------- I searched and searched, but couldn't find the Le Roy father Jim DuPont's call to Dr. Drew. I WOULD LOVE TO HAVE A LINK TO THIS, TOO! CAN ANYONE HELP provide a link? Dr. Drew is also leaning way too much towards accepting "conversion disorder" for some of the Le Roy girls. My hubby was so disgusted by Dr. Drew's NOT talking about PANS/PANDAS/PITAND, or about vaccinations, that he scolded Dr. Drew for this, out loud, while I was yelling at Dr. Drew on the TV. I also very much liked the thread here, linking vaccinations & environmental insults, to PANS! here's a link: http://www.latitudes.org/forums/index.php?showtopic=16283 Carol http://cantbreathesuspectvcd.com

---------------------------------------- Kim, I wish I knew about this too, but I don't have any info either, but I feel in my gut, that the information is out there! That's why I was hoping somebody on this forum lives either in Le Roy &/or, knows parents both in Le Roy and in the Byron-Bergen School District. Then, parents from both areas could compare notes on the following (I didn't invent these--just repeating what I've learned from others, both here and on various forums): 1) What infections did their kids have, and when? (Tell Dr. Trifiletti, MD, and other PANDAS/PITAND/PANS docs and DAN/defeat autism now docs). Any STREP, MYCOPLASMAS, LYME DISEASE, VIRUSES, ETC ETC.? 2) What vaccinations did each kid have, and when? (See websites of Nat'l Vaccine Information Center/NVIC, and vaxtruth.org, etc.). Any Gardasil or other vaccines against cervical cancer? Any flu shots? Any other so-called required vaccinations of any kind? 3) What environmental toxins/poisons might each kid have been exposed to, and for how long, and where were the exposures? (Tell Erin Brockovich, and ask her about the "toxic plume" from the 1970 major railroad derailment spewing out cyanide & TCE's, kids swimming in 1 or more contaminated streams & ponds, kids hanging out in a quarry, toxic building materials used in building the schools, remodeling in the schools, toxicity in homes from water wells, pesticide spraying by airplanes for mosquitoes, any pest control poisons used in the schools, etc, etc., etc. ). 4) When were tic/Tourette's-like symptoms first suddenly happening & seen by parents, and what were all symptoms? The little I saw, was that the subject of the tics in the other school district, also in 2011, was dropped like a hot potato! What were THEY hiding, too??? Carol http://cantbreathesuspectvcd.com

Always good to read all your excellent comments on this website! If any of you are in contact with the Le Roy, NY parents, please share the following with them: http://thebatavian.com/howard-owens/le-roy-school-district-labels-media-exercising-first-amendment-rights-criminal-activity January 29, 2012 - 12:48pm #13 Sarah Lee Joined: Aug 6 2010 Doesn't anyone remember that last year, 2011, Byron-Bergen School District had the same thing? It was dropped like a 'hot potato'. Why waste all of this money etc right now? This happened last year in Byron -Bergen School and nobody is even bringing it up.------------------- January 29, 2012 - 12:59pm #14 Beth Kinsley Joined: Aug 22 2008 Sarah, I don't recall hearing about this until someone else brought it up on another site. Do you know how many students were affected, ages, boys, girls, etc.? Also, do you know if their conditions have improved? [WHAT WAS THE OTHER SITE??? Maybe the one below?] __________________________________________________ http://thedailynewsonline.com/news/article_33e60980-4921-11e1-864f-001871e3ce6c.html Noella posted at 11:08 am on Sat, Jan 28, 2012. Posts: 2 Why isn't anyone bringing up the same thing that happened in Byron-Bergen School District last year? I know that it was dropped like a 'hot potato' but it has to have something to do with what's happening in LeRoy. Remember? Last year some Byron-Bergen students had the same 'tic' Tourrette's-like symptoms. So...that should tell us something, Rght? It's all connected somehow! ------------------------------- salix57 posted at 1:55 pm on Sat, Jan 28, 2012. Posts: 7 i wonder if any of these students have had the H1N1 vaccination. I have heard there maybe a connection between the Thimerosal in the vaccine and some nerve disorders. many people don't even realize the seasonal flu shot now contains the swine flu along with the two other strains. Just a thought. _____________________________ Kimberly M Nolan Possibly an adverse reaction to a vaccine booster they were given from the same batch? Or, were they all exposed to an area that was renovated including removal of lead paint, asbestos, other chemicals or toxins? Were they all taking the same birth control from the same batch?? January 24 at 4:38am · 1 ------------------ Toni Kaschenoff After watching last's nights show [Dr. Drew] on the "MYSTERY ILLNESS" My thoughts went straight to the Vaccine that has been given to teen age girls for cervical cancer. Maybe since it has been occuring in the NY area only so far, Could it be something... in that vaccine ? This issue was never addressed yet! As we have all learned sometimes these batches might be contaminted ?Just another avenue to check into.(Hope this makes sence Sorry I usually type in all Caps as I'am leagally blind and can't re-read this type) Sincerly hope you address this issue tonight on your show. Very Interested in this topic and want these girls to get the right treatment. They need help now~ Regards, Toni ~See More January 24 at 6:56am ----------------- Heidi Schuster Dr Drew. There are now 16 kids at Leroy High School afflicted including one boy. I really believe this is PANDAS. Dr. Trifiletti is flying [As you all probably know, Dr. T. was in Le Roy already, meeting with parents and patients, taking samples, etc.] upstate this weekend to see the kids and test them for free. He believes they could very well have PANDAS and its trigger is mycoplasma pneumonia; the bacterial that causes walking pneumonia. Strep is the original cause of PANDAS but any other bacteria can trigger an exacerbation. Hopefully you [Dr. Drew] can interview Dr. Trifiletti on your show. He is a brilliant neurologist who has treated hundreds of kids with PANDAS. PANDAS is not rare - it is rarely recognized and an exceedingly common according to Dr. Michael Jenike at Harvard/Mass General. My daughter had to suffer for 3 years with it until we got a diagnosis at Harvard. She has seen 17 health care practitioners. Her symptoms are helped with Augmentin and IVIg. It kills me to see these kids suffer. With all of the comments of vaccines being the culprit....certain vaccines are also a cause of an exacerbation of PANDAS because it introduces a bacteria to the patient just like a flu or other infection would.See More January 24 at 1:15pm · ________________________________ Some of the parents think there could be a combination of factors going on, such as PANDAS/PITAND/PANS (what infections were common to all or most & when), vaccination injuries (who got which vaccinations, and when), the VERY (and on-going) toxic spill from the train derailment in 1970 (Erin Brockovich is there), airplanes spraying pesticides for mosquitos, remodeling of the school using who knows what, the mysterious orange liquid around the school, that school officials refuse to allow Brockovich's team to sample, Lyme Disease, etc. I hope that some of you here, can encourage the Le Roy parents who you are in contact with, to get together with parents of kids with tics that developed also in 2011, in the Byron-Bergen School District, so that they can evaluate ALL the above (and any other) possible factors, causing the tics in the students and others. Sincerely, Carol http://cantbreathesuspectvcd.com

Great replies here already, for "Worriedmommy"! Regarding gluten sensitivity stool sample testing by Dr. Kenneth Fine's "EnteroLab" (located in Dallas, TX), here's a link to his excellent "EnteroLab" website: www.finerhealth.com Dr. Fine's "EnteroLab" stool sample testing results (for gluten sensitivity) are much more reliable than blood test results are. Why? Because the antibodies to gluten, are made by and in the large intestine, where stool is also made. And, the antibodies to gluten may not escape from the large intestine (colon/gut) into the bloodstream for many years, thereby giving false negative blood test results. ---------------- I have some info about Eosinophilic digestive disorders (a type of allergic reaction) in my VCD (Vocal Cord Dysfunction/laryngospasm) website, on webpage 5, in the gastric reflux sections, at this link: http://cantbreathesuspectvcd.com/page5.html Here's what I have, so far, about "EGID": "GERD/LPR (continued): (NEW INFO! MARCH & APRIL, 2008) EGID/Eosinophilic-associated Gastro Intestinal Disorders, is a group of "allergic" type problems, (not a "regular" allergic problem), --one type of EGID is called EE (Eosinophilic Esophagitis), and another type of EGID is called EGE/EOSINOPHILIC GASTRO-ENTERITIS--, and I believe that EGE can cause gastric reflux, sometimes leading to VCD attacks. SEE A GASTROENTEROLOGIST, who can diagnose any type of EGID, such as EGE, by taking biopsies during an "endoscopy" of the digestive tract, looking for elevated (abnormally high) numbers of certain white blood cells called eosinophils. This "upper endoscopy" exam is also called EGD (Esophago Gastro Duodenoscopy), looking at and taking biopsy samples from esophagus, stomach, and duodenum/first part of small intestine. Also helpful, are ALLERGISTS/IMMUNOLOGISTS. To learn more about EGID (diagnosis and treatments, including diet changes), including EGE (Eosinophilic GastroEnteritis), a severe and painful inflammation of stomach &/or intestines, and EE (Eosinophilic Esophagitis), etc., see these links, from a good website, about EGID. http://www.apfed.org/ http://www.apfed.org/downloads/EGID_Diagnosis.pdf I know of a VCD patient--a teenager who has the EGE type of EGID, and her reflux and VCD and pain are all improving, because she is avoiding gluten and other food proteins that cause her immune system to over-react. (8 most common allergens, from this link http://www.mayoclinic.com/health/food-allergies/AA00057) : "Milk Eggs Peanuts Tree nuts (such as almonds, cashews, walnuts) Fish (such as bass, cod, flounder) Shellfish (such as crab, lobster, shrimp) Soy Wheat" The over-reaction includes producing too many eosinophil type white blood cells in the digestive tract, and one effect is stomach pain, irritation & inflammation (gastritis), resulting in reflux, leading to VCD attacks. Difficulty breathing (VCD) from the EGE's reflux, can sometimes last all day (can be constant). I don't know the original cause(s) of the EGE (maybe: reflux? infections? medications? vaccinations? environmental toxins? various MOLDS? food protein "sensitivities"? &/or ?). EGID patients often need to TEMPORARILY go on what is called an ELEMENTAL DIET (no proteins, just doctor prescribed amino acids), in order to "calm down" the eosinophic inflammation reactions to certain incoming food proteins, that can cause pain & misery from inflammation in the digestive tract, where the inflammation is related to the vast increase of numbers of the eosinophil type blood cells, that "infiltrate" the lining of the digestive tract. Then, after the eosinophilic inflammation calms down, parents will do food trials, with doctor testing, to get the eosinophilic inflammation under complete control (completely calmed down). Then, parents can work on figuring out all the non-EGID causes of the possible VCD (with help of MD's & SLP's). The VCD/EGID teenager patient's mother (nurse) said that EGID specialty clinics in the U.S. include: Childrens Hopsital of Cincinatti (Ohio), Children's Hospital of Philadelphia (Pennsylvania), Dr. Glenn Furuta, MD, at Children's Hospital of Denver (Colorado), UC (University of California) San Diego Rady Children's Hospital, and researcher (PhD) Steven J. Ackerman, at University of Illinois, at Chicago, IL. The mother (nurse) said that "For adult patients, the expert is Dr. Nirmala Gonsalves", M.D., Department of Gastroenterology, Northwestern University, Feinberg School of Medicine," at Northwestern in Chicago" (Illinois). See http://www.apfed.org/ and click on "about apfed" to get names of specific doctors who are on their medical board, and who know a lot about EGID. The mother (nurse) also said that "Childrens Hospital of Phladelphia adds beef and corn as frequent EE [Eosinophilic Esophagitis] triggers ahead of nuts and fish." Here's a somewhat technical but helpful article about EE (Eosinophilic Esophagitis), that says that reflux can sometimes cause EE, or, EE can sometimes cause reflux, or that a person can have both EE & reflux, where the EE & reflux are unrelated to eachother. This article contains additional useful links! http://www.thedoctorsdoctor.com/Diseases/e...osinophilic.htm ------------------------------- I also have a little info in my VCD website about PANDAS, because "tics" can "mimic" VCD/"Vocal Cord Dysfunction". The PANDAS info is on webpage 3 of my website. I have added Lauren's mom's (Lynn) new website link ( http://www.pandasresourcenetwork.com ) to this info. ---------------------------- Worriedmommy: One thing I thought of, that may link PANDAS to EE (Eosinophilic Esophagitis), etc., is this: Some patients with tic disorders of any kind, who happen to be GLUTEN SENSITIVE, have found that accidentally eating gluten, made their tic disorder worse! And, when they strictly avoided gluten, their tics DECREASED. (Gluten is in wheat, rye, barley, etc., and rice is gluten-free). Good luck to you and to all! Carol Sidofsky http://cantbreathesuspectvcd.com

Well, I fell for "Brickey's" scam. First, I replied to his/her private message, saying I had just done a full scan, using my own anti viral software, showing no viruses. Then, I (duh! on my part) tried Brickey's website, which pretended to scan my computer, and then said that it found 4 suspicious things on my computer, but, then, in tiny print, said that the scan they did WAS NOT REAL, and was just an ADVERTISEMENT! Dang. I should also be more careful, eh? Carol/concerned lady http://cantbreathesuspectvcd.com __________________________________

Dear Buster and everyone, To cite the "risk/benefit ratio" phrase, think about which is more important to you, to help your kids and other kids: Worrying about RISKING "alienating" the "medical community", by posting the FACTS that vaccinations can sometimes worsen PANDAS, OR Having the BENEFIT of spreading that information, so that PANDAS (and other) parents can make more informed decisions, about whether they (always or ever) want to have their children vaccinated or not, from now on. --------------- Years ago, I spoke with a doctor, while riding up on a chairlift at a ski area near my home, about vaccination dangers. The doc was from another state, and felt free to tell me (I'm a retired nurse), that many MD's he knew, were very leery of getting their own kids vaccinated, but the docs kept their worries to themselves. WHY? Because they were afraid of being branded "kooks" (blackballed), by the AMA (American Medical Association)! So, my point is, that the medical community ITSELF, is divided on the risks of vaccinations. For the sake of scientific accuracy, and for the sake of helping children, I hope you all won't be intimidated by the fear of telling the truth about the risks of vaccinating PANDAS children, to those who are in denial, for whatever various reasons, about the vaccination risks. Just remember too, that when we were young, Pluto was a planet. Not any more. "Facts" change, as more is learned. P.S. I also like anecdotes, because these anecdotes represent real cases, that may take decades or longer, for "the medical community" to take seriously, and to act on. Anecdotes can lead to thinking even more 'outside the box', leading to more helpful discoveries (for example, how when a gluten sensitive person with some type of tic disorder finds that inadvertently eating gluten caused an increase in tics--this could lead people to investigate the possibility of them having some kind(s) of food protein "sensitivities", that they may not have previously suspected.) Sincerely, Carol http://cantbreathesuspectvcd.com ______________________________________________________ Great point!

Dear caring people here, and Lynn, mother of Lauren, who is just like all you wonderful parents--never giving up until getting answers, and helping your children! I found this excellent forum here ( ACN Forums > Advanced, Complementary, and Alternative Approaches ), by "googling" about sneezing, tics, and PANDAS. I was happy to share a link to this thread (topic) in your great forum with Lynn, to help her get answers as fast as possible. Now, I'm happy to see that she's part of this forum! :-) I will be adding several links to my VCD (vocal cord dysfunction) website, later today, about PANDAS & PITANDS, because "tics" can be a mimic of VCD ("laryngospasms")! I not only believe in PANDAS & PITANDS, but also think that having a gluten sensitivity &/or sensitivity to other dietary proteins, like milk proteins (casein, whey, etc.), &/or soy proteins, &/or corn proteins, &/or yeast proteins, &/or egg proteins, etc. etc., can probably aggravate PANDAS & PITANDS. I'm sure all or many of you already knew this, but just in case some of you didn't know about Dr. Kenneth Fine's very informative "EnteroLab" website, here's a link: www.finerhealth.com (I get no kickback!). Dr. Kenneth Fine (gastroenterologist) in Dallas, Texas, himself, has a non-Celiac type of gluten sensitivity, and his lab does non-invasive stool sample testing, looking for excessively large numbers of antibodies to gluten, milk proteins, soy proteins, yeast proteins, & egg proteins. He's working on adding a corn protein sensitivity test. Keep up the good work, everyone! Sincerely, Carol (concerned lady)/former nurse, former VCD (vocal cord dysfunction) patient Colorado http://cantbreathesuspectvcd.com