More on Leroy

[MomWithOCDSon]

LOVE the first line of today's story. Gotta admire the tenacity of this writer!

 

Batavian 2-1-12

 

Le Roy illnesses: today's efforts to gather more information

Submitted by Howard Owens on February 1, 2012 - 6:50pm

 

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."

 

Duely noted.

 

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, xxxx@epa.gov

 

- 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.

[nicklemama]

I hope he/she sticks with it. Gotta love the fact that Dr Mechtler doesn't like his financial relationship w/ a pharma exposed, lol.