"Tourette Outbreak" in Leroy, NY

[EAMom]

 

OR could it be that years of exposure to the environmental toxins opened their BBB and then they were exposed to strep or a combination of strep and staph or strep and EBV (the possibilities are endless), which then entered their brains?

 

I think this is possible.

 

I also think it is entirely possible that the girls had long-standing undiagnosed pandas which just became full-blown this fall with the lastest virulent infectious trigger.

[kim]

I don't know if this got buried on page 6 or if no one had any thoughts on it?

 

Does anyone think ANA testing would beneficial?

 

This article was out not long ago

 

http://www.nih.gov/n...12/niehs-13.htm

 

NIH study shows 32 million Americans have autoantibodies that target their own tissues

 

 

Also

 

Someone put up this remark

 

Some do not know each other at all. Mr DuPont arranged a meeting of all the parents. He said 2/3rd attended. The purpose was to find a common thread. Only the school was their common thread.

 

 

I'm wondering if vaccines were discussed. Would anyone think to suspect how the increased load of adolescent vaccines might play into things? Was the HPV vaccine all that may have been suspect.

 

It seems some girls developed symptoms prior to school even starting. I wonder if sports physicals and vaccines along with toxins and any infectious things that were circulating could have been part of the picture.

 

Aside from alum or a thimerosal containing vaccine, just the sheer stress on the immune system may have been a catalyst too.

 

If alum is a bbb toxin, seems autoantibodies might have an easier time getting through or even toxins in the environment affecting the brain more profoundly.

 

 

http://vaccinexchang...-published2.pdf

 

Aluminum Vaccine Adjuvants: Are they Safe?

L. Tomljenovic*,1 and C.A. Shaw2

 

Finally, the neuropathological findings

by Zinka et al. [98] are consistent with neurotoxic properties of

aluminum adjuvants. For example, as shown by our group as well

others, aluminum is a BBB neurotoxin [54, 99] that has a

propensity to activate brain microglia and increase the production

of inflammatory cytokines thereby instigating and/or exacerbating

inflammation and excitotoxicity in the brain [31, 43, 44, 100-104].

[concerned lady]

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

[Sequin]

I do not think all these girls have PANDAS. I haven't heard anyone mention OCD. I am having doubts about this number of kids presenting w/ very similar symptoms. Just doesn't seem quite right. I think they are onto something with the toxic spill. Mr DuPont believes some kids may have PANDAS, some toxic exposure. It will be interesting to see how it all turns out.

 

As for the Dent doctors, I can't believe how often conversion disorder is diagnosed. How many kids do you think have PANDAS that have been seen by them and told it was conversion disorder. What a shame.

 

I just can't wrap my head around why this 40 year old spill would suddenly cause this acute onset of symptoms in this cluster of girls. Many of them were friends, which in my mind also makes infection more likely. Being normal one moment, and then waking up from a nap with these motor symptoms sounds too much like PANS. If it was toxins, why would it suddenly show up at once? I would think toxic symptoms would be more long term...not going from zero to 60 all at once, unless of course they swallowed a bunch of the toxic stuff just b-4 their naps.

 

However, I do believe the chronic toxic exposure would make them more prone to cancers and perhaps even developing an auto-immune problem in the first place.

 

I do wonder if certain strains of strep are more likely to trigger "tic-ky" PANDAS and other strains are more likely to trigger "OCDish" PANDAS...which would account for the similiarity in symptoms. Nobody has ever (that I know of) looked at if certain strep strains are more likely to trigger a certain constellation of PANDAS symtpoms.

 

EAMom-

Light bulb!I think you are on to something- very much seem to be two kinds based on which receptor D1 or D2 per Swedo explanation I have always thought that based on the "perfect storm" in each of our children it takes advantage of their own internal weakness and they then present with more OCD or Tic like behavior BUT maybe it is the strain of the strep, etc that determines the symptoms. Perhaps you are right- there just may be a more virulent strain that is now hitting some of the older children and somehow females are more vulnerable to it. This may also be the reason as in my DS case that he responds so well to daily zithro- primarily a ticker and possibly affected by a different strain than some who have more OCD like symptoms and have to go the full course and more in depth treatments. Also a possible cause why some strep leads to Rheumatic fever v. PANDAS??? Is there any good data out there that analyzes differences in the strep virus itself?

[kim]

Carol,

 

Do you have any of the details about what happened at the Byron-Bergen School?

 

I can't find anything about it.

[Iowadawn]

Erin Brockovich had a very good explanation for why these girls are just now having problems 40yrs later. First, she said environmental exposure takes decades of exposure before you see the results.... cancers, autoimmune disease, etc.... She has been getting loads of email, over 1000 messages, telling her of individuals living in the area and their health issues.

 

Enviromental exposure may have triggered these girls obvious neurological issues. Last night, two moms said these girls do not all know each other. They range in age from 13-18 and have nothing in common but the school. Some of the girls know each other. Some know of each other. Some do not know each other at all. Mr DuPont arranged a meeting of all the parents. He said 2/3rd attended. The purpose was to find a common thread. Only the school was their common thread.

 

Maybe they all have PANDAS but I'm still skeptical. Certainly, its not being reported all their symptoms. If we were told they were experiencing more PANDAS symptoms, I'd be more likely to think they all had PANDAS. As Dr T said, there has never been a cluster of PANDAS like this. It might be possible but I'll wait on Dr T's evaluation results.

 

 

But, out in Diana P's neck of the woods in CA they had a big OCD explosion after strep-- 3-ish years go?. She had to get in Stanford's face. This is really when the movement in the PANDAS community really started to snowball. Those that have been around for some time, chime in, please. This was "before" Dr. T.

[EAMom]

 

 

But, out in Diana P's neck of the woods in CA they had a big OCD explosion after strep-- 3-ish years go?. She had to get in Stanford's face. This is really when the movement in the PANDAS community really started to snowball. Those that have been around for some time, chime in, please. This was "before" Dr. T.

 

Yup, we live a couple of towns over from Diana, with Stanford (Palo Alto) in between. We were hit that same year (late 2007/early 2008). My dd had severe OCD (which morphed into a full-blown anorexia at age 7). Tics were the LEAST of our worries, and were minimal.

[concerned lady]

Carol,

 

Do you have any of the details about what happened at the Byron-Bergen School?

 

I can't find anything about it.

----------------------------------------

 

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

[EAMom]

 

EAMom-

Light bulb!I think you are on to something- very much seem to be two kinds based on which receptor D1 or D2 per Swedo explanation I have always thought that based on the "perfect storm" in each of our children it takes advantage of their own internal weakness and they then present with more OCD or Tic like behavior BUT maybe it is the strain of the strep, etc that determines the symptoms. Perhaps you are right- there just may be a more virulent strain that is now hitting some of the older children and somehow females are more vulnerable to it. This may also be the reason as in my DS case that he responds so well to daily zithro- primarily a ticker and possibly affected by a different strain than some who have more OCD like symptoms and have to go the full course and more in depth treatments. Also a possible cause why some strep leads to Rheumatic fever v. PANDAS??? Is there any good data out there that analyzes differences in the strep virus itself?

 

Well, it is well-known that there are strains of strep that cause rheumatic fever, so it's logical that their are strains of strep that cause PANDAS, and so why wouldn't each strain be more likely to trigger a particular constellation of symptoms? Of course, there are other factors, perhaps genetics and crowding, which would make someone even MORE vunerable to getting strep (and also it may matter if it's untreated strep) and then more genetic vunerability as to whether you have an auto-immune reaction post-infection like PANDAS or rheumatic fever.

 

re strains affecting different ages...in 2009, I got a strep infection. My PANDAS dd was on daily Azith. at that point. She didn't get strep (but did get PANDAS symptoms)from me. I was really surprised that my other dd (who had a history of getting assymptomatic strep from her classmates in school) didn't pick it up from me. We were on vacation at the time, crammed into one room. We were sharing food for a week before I figured out I had strep. I was the only one in my family that got strep. We cultured everyone to be sure. I wondered if there was something odd about that strain, that my kids didn't get it (despite plenty of exposure) and I (as an adult) did? I don't ever remember having strep before (not that I couldn't have had it as a child, I just don't remember it, although I do remember being tested at the peds, I can't say I was ever positive.)

[kim]

Well, it is well-known that there are strains of strep that cause rheumatic fever, so it's logical that their are strains of strep that cause PANDAS, and so why wouldn't each strain be more likely to trigger a particular constellation of symptoms?

 

 

What I find interesting (and don't really have a good handle on) is that it appears that the antibodies in both PANDAS and rheumatic fever are reacting to the group A carbohydrate N Acetylglucosamine (mainly but not the same antibody). What I can't seem to get a handle on, is whether the M proteins contain this also? It appears from the diagrams that I've looked at that the M protein and the GAC (group A carbohydrate) are separate thingies. They both extend from the cell wall and are exposed at the surface. I believe GLcNAc is exposed on the surface of neuronal tissue too. This is one of the "self" components as humans have plenty of this too.

 

There is a study that Novartis did on strep and I think they said that the people in the study responded with a wide range of antibodies. Are the ones who respond with an antibody that recognizes GlcNAc, the ones that are prone to problems?

 

Another interesting thing. I read where "carriers" carried stains that were deficient in M proteins making the strains they carried very weak or non virulent.

 

Just throwing some things out there in case anyone can expand on or correct where I'm off.

 

 

http://pandasnetwork.org/CunninghamJNICaMKinase.pdf

Antibody-mediated neuronal cell signaling in behavior and

 

http://pandasnetwork.org/Cunningham.NMpaper[1].pdf

Mimicry and autoantibody-mediated neuronal cell signaling in Sydenham chorea

movement disorders

[oivay]

Does anyone else find it interesting that the other "Pandas" doctors have been conspicuously absent throughout this whole ordeal?

 

I realize that Dr. T is the closest one, geographically speaking, so it is logical that he is handling it. And he is the most thorough open minded compassionate doctor I've ever met, so those kids are in good hands.

 

It is odd, though, isn't it, that no one else (doctor wise) has come forward?

[T_Mom]

this was posted on another thread but I thought it should be here too--

 

NIH is offering a full review of the LeRoy students, via Dr. Sue Swedo (!!!) and Dr. Hallett.

here is a section of the article...

 

http://www.wivb.com/dpp/news/genesee/doh-offers-leroy-victims-evaluations

 

DOH offers LeRoy victims evaluations

 

Updated: Wednesday, 01 Feb 2012, 4:46 PM EST

Published : Wednesday, 01 Feb 2012, 4:42 PM EST

 

ALBANY, N.Y. (RELEASE) - New York State Health Commissioner Nirav R. Shah, M.D, MPH today announced that the Department has secured an agreement with the National Institutes of Health (NIH) that the NIH will provide the Leroy High School students suffering from tic-like symptoms with a free, independent third-party evaluation of their cases.

The evaluations will be performed under the auspices of Dr. Mark Hallett and Dr. Susan Swedo of the NIH Institute on Neurology in Bethesda, Maryland, at no cost for the specialized consultation or for travel and accommodation costs of the students and their families.

 

The Department of Health is sending information on this opportunity to visit NIH to the parents and families of those affected by this illness and urges them to take advantage of this opportunity to be examined by these experts.

 

Dr. Hallett is currently NIH’s Chief of the Medical Neurology Branch and Chief of its Human Motor Control Section. He is currently the Principal Investigator of a clinical study of the diagnosis and natural history of patients with neurological conditions.

 

Dr. Swedo is currently Chief of the Pediatrics and Developmental Neuroscience Branch at the National Institute of Mental Health (NIMH). Dr. Swedo and her NIMH team were the first to identify a new subtype of childhood disorder thought to be related to streptococcal infections known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). Dr. Swedo's work has led to the development of several possible therapies for the condition.

Edited February 1, 2012 by T.Mom

[EAMom]

Does anyone else find it interesting that the other "Pandas" doctors have been conspicuously absent throughout this whole ordeal?

 

I realize that Dr. T is the closest one, geographically speaking, so it is logical that he is handling it. And he is the most thorough open minded compassionate doctor I've ever met, so those kids are in good hands.

 

It is odd, though, isn't it, that no one else (doctor wise) has come forward?

.

 

Yay! Well Swedo is now offering help.

 

I kind of thought Leckman would been another who could have offered, and the Yale name would have leant more clout to antagonize the naysayers (Dr. Conversion Disorder). But realistically IMHO, Dr. T. has a lot more practical experience/years/knowledge of PANDAS/PANS and variants vs. the Yale folks.

[EAMom]

 

 

 

 

 

Another interesting thing. I read where "carriers" carried stains that were deficient in M proteins making the strains they carried very weak or non virulent.

 

 

 

Well, my non- PANDAS dd "carried" the same (well I assume it was the same, nobody offered to do strain analysis for us) strain that was extremely virulent ( PANDAS wise) for my PANDAS dd (who initially had a fever but the aside from PANDAS was also an symptomatic carrier). My kids then transmitted this strep to a friend (sleepover) who got traditional (sore throat/fever) strep symptoms. So, I from my experience, I wouldn't say that "carried" strains are weak or non virulent .

[Iowadawn]

this was posted on another thread but I thought it should be here too--

 

NIH is offering a full review of the LeRoy students, via Dr. Sue Swedo (!!!) and Dr. Hallett.

here is a section of the article...

 

http://www.wivb.com/dpp/news/genesee/doh-offers-leroy-victims-evaluations

 

DOH offers LeRoy victims evaluations

 

Updated: Wednesday, 01 Feb 2012, 4:46 PM EST

Published : Wednesday, 01 Feb 2012, 4:42 PM EST

 

ALBANY, N.Y. (RELEASE) - New York State Health Commissioner Nirav R. Shah, M.D, MPH today announced that the Department has secured an agreement with the National Institutes of Health (NIH) that the NIH will provide the Leroy High School students suffering from tic-like symptoms with a free, independent third-party evaluation of their cases.

The evaluations will be performed under the auspices of Dr. Mark Hallett and Dr. Susan Swedo of the NIH Institute on Neurology in Bethesda, Maryland, at no cost for the specialized consultation or for travel and accommodation costs of the students and their families.

 

The Department of Health is sending information on this opportunity to visit NIH to the parents and families of those affected by this illness and urges them to take advantage of this opportunity to be examined by these experts.

 

Dr. Hallett is currently NIH’s Chief of the Medical Neurology Branch and Chief of its Human Motor Control Section. He is currently the Principal Investigator of a clinical study of the diagnosis and natural history of patients with neurological conditions.

 

Dr. Swedo is currently Chief of the Pediatrics and Developmental Neuroscience Branch at the National Institute of Mental Health (NIMH). Dr. Swedo and her NIMH team were the first to identify a new subtype of childhood disorder thought to be related to streptococcal infections known as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). Dr. Swedo's work has led to the development of several possible therapies for the condition.

WOW!! Two governmental branches working together!!