Le Roy illnesses: today's efforts to gather more information
Let's start with PANDAS.
Every day, I get emails and phone calls from all over the country from people saying, "the cause of the tics must be PANDAS."
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Some people who contact us claim that PANDAS should now be called PANS (Pediatric Autoimmune Neurological Syndrome). I've even heard the word "pediatric" should be removed.
The original theory was that PANDAS was caused by a strep infection, but some researchers apparently now believe that the disorder can be caused by any infection.
School and state officials have repeatedly said -- including at the Jan. 11 community meeting and in subsequent press releases -- that PANDAS and infections have been ruled out.
Late last week, I requested an interview with Dr. Gregory Young, who originally told the community PANDAS had been ruled out. The request was simple: I'd like to get more detail on why PANDAS was ruled out.
Jeffrey Hammond, the spokesman for the DOH got back to me on Monday and referred me to Dr. Laszlo Mechtler, the DENT neurologist who made the conversion disorder diagnosis and has been quoted as blaming the stress the girls are reportedly under on post-9/11 terror warnings.
I left two messages at Mechtler's office yesterday. When I called this morning, I spoke with DENT's marketing director, Maria Caserta.
Caserta was initially helpful, but 30 minutes after confirming an interview time for Thursday, Caserta emailed to cancel the interview.
When I squawked, Caserta responded that Dr. Mechtler was canceling the interview because The Batavian revealed he has taken more than $150,000 in payments from phrama companies.
Caserta wrote, "Please note: Dr. Mechtler speaks for pharmaceuticals on a professional basis related to Headaches and Brain Tumors. He is no way affiliated with these pharma companies in relation to Gardasil or Cervarix."
I immediately informed Hammond that Mechtler was unwilling to share with the community the reason behind ruling out PANDAS and requested another avenue of information, but as yet, Hammond has not responded to the email.
I've also emailed the DEC, EPA and DOH, in some cases, multiple times, trying to get more detail on claims by the school district that environmental testing has taken place.
On Saturday morning, Superintendent Kim Cox initially claimed soil and water testing had been done at the school, but when pressed for details, she said she wasn't actually sure what had been done.
In a letter to the community this morning, Cox said, "All of these agencies and professionals from these agencies have assured us that our school is safe.There is no evidence of an environmental or infectious cause." ... and ... "The school was tested for total Volatile Organic Compounds by an independent firm."
So my second attempt in 24 hours to get more details on environmental testing -- what was tested (soil, air, water, inside and outside the building), when and by whom, elicited the following email.
“DOH reviewed both the epidemiology and the clinical evaluations and found no evidence of environmental or infection as the cause of the girls’ illness.”
“An environmental exposure would affect many people. The treating physicians ruled out PANDAS. The school was tested for Volatile Organic Compounds (including TCE) by the independent firm. The school is served by a public water system. The Guardasil vaccine was ruled out because many of the girls did not receive the vaccine. Despite the evidence, the Le Roy School District chose to pursue environmental testing."
“DOH has reviewed 12 cases and we are aware of three new suspected cases. The three new suspected cases are being evaluated by private medical professionals who will then share the evaluations with DOH. DOH will evaluate the new suspected cases are part of our Le Roy investigation.”
"People are free to pursue additional environmental testing."
Additional background perspective:
- The Genessee County Health Department contacted us in October
- Epidemiology is the study of the causes, distribution and control of disease in populations.
- DOH conducted a scientific literature review.
- The department continues to monitor the cases.
- The school district’s website has copies of the environmental review, in case you don't have them. Here’s the link to the school’s site: http://www.leroycsd.org/. The documents are found under the “important message” section.
- Questions about the Lehigh Valley railroad site should be directed to the EPA. Mike Basile, 716-xxx-xxx, [email protected]
- HIPAA prevents DOH from sharing the diagnoses. That is a question for the private physicians (Dent Neurology) who have been treating the girls.
I immediately responded to Hammond requesting more detail -- again, who is the independent firm, were soil and water samples taken, etc.? So far, no response from Hammond, though he did issue a press release late this afternoon that includes detailed information on interior water testing.
I wonder if my doctor has a marketing director.
To be clear, she works for DENT, which is a large organization. She doesn't work for Mechtler, who is just another employee of DENT.
Howard great job of trying to get the facts..Your reporting is spot on.......The people of Leroy should be grateful that so many are trying to get answers to the issue..I am with Chris Charvella...When he said ....
If there's a silver lining here, it's that while probably completely unrelated to the girls' tics, a bright light is shining on a pretty terrible handling of a toxic waste spill. As a matter of fact, it seems like the only person in the chain who didn't screw up royally here was the highway worker who reported the leaky barrels in 2008.....Howard i do believe your reporting has helped us all understand this complicated issue.....You have to hold government figures accountable for what happens ..Without people asking questions we can never get answers.....I would think the head of the school board ,the mayor of Leroy ,and State and Local legislators should all be standing behind MS.Cox on this and not leaving it all up to her to be the spokesperson on this issue....It seems like they are all leaving it up to her to deal with this..Where is the LeRoy county legislator,Where is the State senator..Where is Schumer and Hillibrand...Where is Hawley...they all seem pretty quite on this...Whats the word from Coumo's on this...This is when you need the government..
This time the politicians are not grandstanding. You should be happy, it's very rare they aren't.
That right there is a red flag to me John.... Very starnge that they dont want to have anything to do with this, it actually seems they want to distant themselves. Except for Kathy Hochul who made a blurb while at the Airbase in Niagara.
Howard, I heard rumors from a family that watch their son swear in. That two (02) girls from the Albany area who were in LeRoy sometime in August for a sports tourament, are now saying they believe they are suffering from the same illness. Have you heard anything about that?
John Woodworth Jr., as they say in a commercial, "you are so twenty minutes behind". That was reported more than a week ago.
On to other things,
Jan. 19, you wrote:
"So, you just stop trying? I voted for the three candidates above. Yes, they failed to win. Now instead of focusing on their loss, focus on Legislator Cianfrini. Ensure that he see this investigation through and has it resolved. Who knows if, this seek more national attention. Getting the petition started is just the beginning."
how did you vote for three people who were not in your district for Genesee County legislature?
Still haven't received an answer on that one.
Mark, very well thought out post. You're absolutely right regarding our local government officials taking a pass on this and leaving it up to LCSD Supt. Ms. Cox to deal with the press. OUR Mayor appears to be none too concerned about either situations going on - the Tourette syndrome affecting the children or the train derailment of 1970. We have all these media folks in our town asking the citizens in the village and outside the village this and that about both situations, and quite frankly, all the misinformation and speculation isn't helping either situation. Yes, I understand the people of LeRoy want answers, but would they rather have all these professionals(Doctors, people from the DEC, EPA, DOH etc etc)give them accurate information(which takes time) or half-baked truths to satisfy the masses that want answers right away? Also, every person that speculates on this situation and offers opinions(not facts), is hurting homeowners and businesses in and around LeRoy with their hysteria. In our present economy, it is hard enough to sell their homes/businesses, now with all the misinformation that has been put out there by the local and national media, it will be virtually impossible to get back to business as usual. Leave the commentary to the proper authorities(Where are you Mr. Mayor)?, and our other gov't officials. If they don't comment, then vote them out of office, because they are the one's who are making this situation worse by not being accessible or open to the citizens of LeRoy, NOT Ms. Cox who is being unfairly scapegoated. I'm sure the medical professionals know what they are talking about when they throw out " Conversion Disorder" as the cause. LeRoy isn't the only place where this has happened. There was a female LeRoy student who has since graduated last year who had Torette Syndrome and the symptons disappeared over time, as will the symptoms for the girls who presently have this condition. Sometimes the medical professionals do not 't have all the answers to the causes of certain illnesses or the answers that satisfy everyone(that's why people seek 2nd opinions from other doctors).
Bea, why the calling out of Mr. Woodworth? It seems a few people who frequent this site have it in for John. That includes Mr. Harker who has been a smart a** on this site previously when Mr. Woodworth commented on other topics. Remember the old adage, " if you don't have anything good/nice to say, don't say anything at all". I personally know Mr. Woodward, he has served our country honorably, has been a single father of 3 children for as long as I have known him(10 plus years), and is an upstanding citizen. I take offense to people questioning his spelling, and other frivolous grammar put downs or crap like this: " how did you vote for three people who were not in your district for Genesee County legislature?
Still haven't received an answer on that one"
Who in the hell are you to think he needs to respond to you? Because you're a nurse? "Still haven't received an answer for that one". Really? I hope you hold your breath waiting. That also goes to that Harker fellow too.
You don't have to agree with Mr. Woodworth, but it's no cause for putdowns. You must be a liberal.
Nobody has it in for Mr. Woodworth. He claimed he broke the law and has been asked how he did it.
Great job, Howard.
Bea and John - Everyone makes a mistake and then gets called out for it, I think that the continual harassing of Mr. Woodworth for something he said weeks ago should come to end. Enough is enough. Not that he wasn't wrong for saying it, but it's time to move on.
Dan, we have someone on the site who proudly announced that he committed voter fraud. That wasn't a mistake, it was a statement he made.
Howard caught it, John caught it, and so did I. There is nothing wrong with asking for a clarification. One, it appears, he refuses to make.
If it was just a moment of boastful idiocy, then admit it and let's go on.
Apparently, his spokesperson, has told us that no such response is forthcoming.
If serving one's country gives one the right to vote for three people, none of which are in one's district, then it is something I missed.
No one is dismissing his military record or his ability to care for his family.
Making me or John the villains in this only places a stamp of approval on Mr. Woodworth's method of making a point.
We all KNOW he didn't vote for these three people. It was an out and out fabrication he posed to reinforce his point. It didn't fly.
Well Bea my comment was wrong. I did vote for Jackie but, I did not remember the others I voted for. I know that several ran unopposed and assumed that the individual who brought up the other two names were talking about other positions. I was trying to get you and others to stop your crying about how things do not change and there is nothing you can do about it attitude. Things can change if, you follow through but, crying about how bad things are is easier for you. Funny the only person that really identified the error in my comment was Howard, in which you and others follow suit in "HOW, HOW, HOW!" So, there is your answer Ma'am like it or hate, deal with it.
Funny how I stated that I have been busy and have not seen the news and asked the question. What did you not understand about that? Like I stated I learned from a family, who was here to see their son swear in, that informed me about it. So, I asked Howard if, it was true. So, sorry if you could not understand my question for Howard.
Mike, I am not worried about the so called, "English Professors." If, you view some of their past comments, you will find grammar and spelling errors. Even Howard commits one here and there.
Explanation accepted. Now, we can go on. Thanks
You are welcome
It's good to see you have repented for your sins, John. I just got back from being up your way at NU and NCCC a good part of the day - having that drive several times a week can't be fun.
Kevin you have no idea, lol. In the last four weeks I have been here everyday but, three. Meetings, audits and PF testing. Cannot wait for my gas bill. Sixty + dollars every three days of travel, back and forth.
Kevin, BTW, next time you are up here stop by. I will give you a tour of the base if you would like.
Most definitely, and thank you for the kind offer. We get to see the AH-64's flying in formation about 20' off the river in the gorge from time to time. That is an impressive sight!
Lost in all the speculation is the fact that at least a subset of those affected had seizure-like symptoms proven (and publicly reported as so) to be nonphysiologic with EEG monitoring. So we have a positive diagnosis of psychogenic nonepileptic attacks (conversion disorder), and still folks are barking up the environmental culprit tree. Who did and didn't perform environmental testing, to what degree, and with what specific report is irrelevant. Whether PANDAS/PANS has been rule out is also irrelevant. In a number of these cases, conversion disorder has been ruled IN, with gold-standard diagnostic testing. Stop the soil testing, and start appropriate therapy for these families, the same ones that claim there's been no stress involved, but (according to the Newsweek article) have histories of familial tumult, sexual abuse, trauma, suicide, etc.
I was told by a parent of one of the affected girls yesterday that Dr. Trifaletti, the doctor who correctly diagnosed the girls (he actually saw them unlike Mr. Mechlter) that the ones that are on antibiotic therapy are improving. Unlike The Dent Institute mass machine of moneymakers, who lied about having actually seen as many of the girls as he had (and may we not forget his absolutely asinine 911-stress theory), Dr. Trifaletti met 9 of these young women, tested them (for free!) and diagnosed them AFTER the blood tests came back positive. Unlike what has been previously said on this site by those who like to make up the facts, Dr. Trifaletti NEVER diagnosed these girls until he treated them, tested them and had the results from the tests. And absolute BS about the "trauma" these girls have suffered. One or two of them, definitely, just as any cross-section of the population would be.
One of the girls being treated by Dr. Trifaletti, was tic-free over the spring break, caught a cold back at school and had a set back, which to any common-sense person would be proof positive of a physical condition.