Albany news station reports Tourette-like symptoms in two girls

An Albany television station is reporting that two girls have developed tics and verbal outbursts and linking the report to the 12 girls in Le Roy who have suffered similar symptoms.

As for a possible connection to the cases in Western, NY, both girls did eat at a restaurant in Le Roy this summer.

"Maybe she had been carrying something that she brought with her to Le Roy," says Nicholson.

The piece on the girls describes joint pain along with the tics and verbal outbursts. One girl was diagnosed with Tourette Syndrome, though her mother doesn't seem to accept the diagnosis.

Meanwhile, The Week, a British publication quotes Dr. Lazlo Mechtler, the neurologist who has reportedly examined 11 of the 12 girls from Le Roy, as blaming the outbreak locally on terror alerts.

“Ever since 9/11, Americans have been subjected to warnings of orange alert and red alert, and, unlike Israelis for instance, they are not culturally used to it,” says Mechtler. “What has happened to these girls is the result of Americans being made to live in fear. We are going to see more of these outbreaks.”

According to the article, Mechtler has not examined Thera Sanchez, whom the article says was the first Le Roy girl to exhibit symptoms. But in her Today Show appearance, Sanchez said she was in treatment.

At the community meeting Jan. 11 in Le Roy, the mother of the reported 12th girl said she hadn't been to treatment yet because she was the last of the girls to develop symptoms.

In the past couple of weeks, we've received emails from people all over the United States with their own theories and suggestions. It would be a time-consuming task to chase down every theory and get response from officials, and, as we know, there's only so much officials can, or are willing, to say.

After the jump (click the headline to read the whole thing) are three of the emails we've received.

From Susan Walker:

Here is what I hope will be helpful information for the girls afflicted with the strange tics and Tourette-like problems in New York. I’ll try to keep this short!

Our grandson was afflicted with Tourette-type tics along with accompanying nervousness and difficulty sleeping quite suddenly at the age of about 7 years. It was heartbreaking to see him struggle with it. For a year or so he was treated with various medicines all of which left him lethargic but not improved. Our daughter asked me to research anything I could find to help him so I embarked upon a reading and Internet frenzy for information.

The only thing I found, aside from medicines he had already tried or things that seemed worse than the problem, was a fair amount of anecdotal evidence, which was first noted in a book by Mitzi Waltz about Tourettes Syndrome. She reported that a number of boys had found  great relief from the symptoms by taking grape seed. I passed this information to my daughter after researching grape seed and finding it to be very high in antioxidants and otherwise harmless.

To make a longer story short, our grandson showed marked improvement in just a couple of weeks and he felt much “better inside” as he described it, after taking 1 mg. per pound of body weight twice per day of grape seed extract in pill form. Within a month or two he had no symptoms at all and was able to sleep much better. He is now 18 years old and has been tic free all these years. He still takes grape seed.

I have kept myself open for any articles or info over the years which might explain this phenomenon and have run across a few things which suggest to me that perhaps the area of the brain which is involved in causing tics and related symptoms can be affected in some susceptible people by a sort of autoimmune response to oxidants which build up in their blood either from outside causes or perhaps from their own metabolic peculiarities.

In any case, grape seed has been a lifesaver for our grandson and there are numbers of mothers and sons who report similar experiences. It’s worth a shot and I’d surely try it if my daughter was one of  these cases.

From Denise Grubbs, RN:

I am founder and director of PPARS: PANDAS-PITAND Awareness & Research Support and I am also a Registered Nurse. I just registered to leave a comment as I am very concerned about the underlying cause of tics in these children.

I wonder if they have tested the girls for strep, myco p, Lyme and related diseases. I hope if they used titers such as ASO & Anti-DNase only that they did not use this to rule out this condition as we know that some kids never elevate titers. Inability to elevate titers does not rule out PANDAS-PITAND -- it only means we have to look harder before it can be ruled out as a cause.

Another potential cause to consider is the GARDASIL vaccine. Because only girls are reported and the age, we have to consider this as a potential cause.

There are physicians who are knowledgeable about this condition and could fully evaluate the students to determine if it can be ruled out or not.  Treatment can bring healing, but it is important to catch it early.

How can we reach someone who can fully evaluate to help these girls?

Website: http://www.pandas-pitandawareness.org/Home.php
FB page: https://www.facebook.com/pages/PANDAS-PITAND-PANS-Awareness-Ribbon-Research-Support/104784939604627
Twitter: https://twitter.com/?ref=nf&utm_campaign=PANDAS_PITAND&utm_content=146545841648308224&utm_medium=fb&utm_source=fb#!/PANDAS_PITAND

From Laurie Endicott Thomas, www.gorillaprotein.com

I was greatly disturbed to see the girls with Tourette syndrome from Le Roy on the TODAY show and highly annoyed to see a neurologist attribute the problem to "conversion disorder." I have written an article that will be published soon in the medical journal Medical Hypotheses that argues that doctors should never make the diagnosis of conversion disorder. Doctors make a diagnosis of conversion disorder when they can't find the real cause of the problem. It's a cop-out and shouldn't be permitted.

Chances are good that the girls' problems are due to a simple problem with the temporomandibular joint, which is the hinge joint where the jawbone attaches to the skull. If the jaw is not in the correct position, it can irritate one of the cranial nerves, thus setting up a reflex arc that causes the movement problems.

In many cases, the problem can be solved simply and without drugs by giving the girl a dental appliance that holds her jaw in the correct position. The girl might be able to get longer-lasting relief from a simple surgical procedure to take a "tuck" in the articular disk in the temporomandibular joint, to put it back where it is supposed to be.

Here's an article from the Journal of Craniomandibular Practice about the problem.

http://www.tmjstack.com/casereport.pdf

Here's video of a patient with gait problems and all of the typical Tourette symptoms. Watch how rapidly the problems go away when the woman gets a dental appliance to reposition her jaw.

http://www.youtube.com/watch?v=5W7qBbjbRZ8

I wouldn't be surprised to find that all of the girls in Le Roy had the same dentist or orthodontist. That could account for why you've had an outbreak of Tourette syndrome in girls locally.

The Batavian has also received phone calls suggesting lead poisoning, mercury poisoning and telecommunication radiation.