By Teresa Conrick
I have a teen daughter very affected with vocal tics, OCD, enuresis, estrogen-related seizures and a significant past history of streptococcus infections as well as numerous viral illnesses. Her diagnosis in 1995 - AUTISM - and additionally in 2011 - an autoimmune diagnosis - based on two positive results for antinuclear antibodies. Armed with that knowledge, I was lured to an article this week called, Le Roy Parents Want Answers about Mysterious Illness . I was shocked to read a horrific account of twelve high school girls, all from the same school, who had each begun to have severe symptoms similar to Tourette's syndrome, with tics and verbal outbursts. These are familiar symptoms to me and for any parent who has a child who regressed into an immune or autoimmune disease.
I have researched and done much reading about Autism and also P.A.N.D.A.S. (Pediatric Autoimmune Neuropsychiatic Disorders Associated with Streptococcal Infections) because both seem to be related to Megan and to each other, as the immune system seems to be a big, common denominator. Seeing a story that describes previously healthy teens, teen girls, become so ill with movement and vocal tics, should alarm everyone. The many articles on this story offer bits and pieces of clues as we all read it is "a mystery:" Autism and P.A.N.D.A.S. used to be mysteries but over the years, many parents have reported that regression into each often came about due to vaccination or acute illness from bacterial or viral infections. Streptococcus bacteria also known as "Strep Throat" for many, has been implicated often for P.A.N.D.A.S. but parents are also seeing regression and further exacerbation with other infections, such as Lyme (Borrelia bacterium) and Pneumonia ( Mycoplasma pneumonia). Are we seeing a rise in these immune-mediated diseases over the past years of increased vaccinations?
These are some facts:
1- A mysterious disorder which exhibits symptoms similar to Tourette's Syndrome has affected twelve female students at the same high school in LeRoy, NY.
2- Tourette's Syndrome is a neurological disorder defined by involuntary motor and vocal tics.
3- The New York State Department of Health says since September, 12 girls in Le Roy suddenly developed tics. Some are so bad, they had to be pulled out of school and tutored at home.
4- Through tests over the last few months, they have been able to rule out a number of environmental factors, infections, illegal drugs and carbon monoxide poisoning.
These are some confusing quotes:
1- Administrators said on Wednesday night that all of the students affected at LeRoy High School, in New York, have been diagnosed and are being treated but they would not disclose exactly what they think the cause is.
2- Dupont [father of a 17 year-old affected daughter] says he knows of no such diagnosis.... The girls all go to the same neurologist and there is no diagnosis,” Dupont says. “They don't know what's causing it. That’s why we're all here at this meeting. It's not getting any better and they can't share a diagnosis because there is no diagnosis right now.”
3- After months of investigation and a battery of health and environmental tests, however, what school and state health personnel told concerned parents this week is that there is no known environmental or infectious for the bizarre condition that debilitated most of the girls.
4- ...one local expert in the field of movement disorders stated Thursday that what most of these girls experienced is likely the result of mass hysteria......More properly identified as "mass psychogenic illness," the condition experienced by these students was likely a real physical manifestation of an underlying psychological condition.....A specialist should be able to detect whether the tics a person has are typical of a neurological disorder or if it may be "modeled behavior," Lichter said. He also said it's not uncommon for some parents to refuse to accept that their child's symptoms may have a psychological cause and continue to "doctor shop" for a different diagnosis.
5- School administrators have insisted it is not a case of mass hysteria and that none of the girls are making the illness or symptoms up.
I'm going to stop there and introduce another "mystery illness" story:
Expert: Mystery illness is stress November 19th, 2007
The twitching reported at William Byrd High School is a classic psychogenic symptom, a researcher says.
School officials say they have heard from roughly 10 people at William Byrd complaining of the twitching symptoms, including one female teacher. Students and parents have said that all the students affected are also female.....School and health officials have so far not revealed the cause of the symptoms, which the Virginia Department of Health described as "involuntary movements in the extremities." Tests done on the school's air, water and surfaces have turned up nothing unusual.
So it appears that in November, 2007, a high school in Virginia had an identical incident. All female students and one female teacher ..."the students, as well as a teacher, were experiencing severe headaches, dizziness and seizurelike twitching"...."These kids are scared," Bradshaw said. "They're terrified." Now how is it possible that these two incidences are so similar? Not one male student or male teacher and we are to believe it is due to a "conversion disorder," "a classic psychogenic symptom," or "hysteria?"
In their 2010 book, Age of Autism Mercury Medicine and a Man-Made Epidemic, Mark Blaxill and Dan Olmsted described the Freudian writings of men in psychiatry and neurology, as they ignored the signs of mercury poisoning in young women. Instead of understanding how mercury can cause muscle twitching , muscle contractions, and tics the women were branded as "hysterical". Interestingly, the American Academy of Family Physicians falls into the Freudian trap by saying, "Mass psychogenic illness has been talked about and written about for hundreds of years, all around the world and in many different social settings. No one keeps track of these outbreaks, but they are probably a lot more common than we realize." How many events have you heard about like this in your town and why wouldn't someone be tracking them? Even more interesting is their final conclusion,:
"You should see your doctor to be checked for a different reason for your health problem if:
- Your illness seems to last several days.
- You have a fever.
- Your muscles are twitching.
- Tears keep coming from your eyes.
- Your skin feels like it has been burned.
We do not know all of the medical issues here and this is the rationale: Young (Gregory Young from the state health department) told the audience of almost 200 parents and students that the diagnosis and cause of the mysterious illness could not be shared because of the HIPPA Privacy Rule. He revealed that tics like this can be can be caused by a number of factors such as genetics, head trauma, drugs for ADHD and OCD and antihistamines. If you read comments on some of the news sites or blogs, the first thing asked is not about genetics or head trauma but ---- vaccines, and bacterial/viral infections triggering P.A.N.D.A.S.
Let's examine a few pieces to this puzzle:
1- Only girls are affected. If this were an environmental exposure, like tainted water, it would make sense that both males and females would be having symptoms.
2- The symptoms came on suddenly, as if exposed to some toxin.
3- According to a 2009 study on Tourette's, boys had a rate three times higher than girls yet there is not one male affected in this school.
4- P.A.N.D.A.S., is an acronym really used to describe Strep and other bacterial/viral infections triggering sudden, acute vocal/movement tics, extreme behavioral changes, OCD and unfortunately in many cases, increasing, chronic symptoms affecting more and more children. In a study by Swedo et al, (86%) of the children reported obsessive-compulsive symptoms, and 40 (80%) of the children were found to have motor tics.
5- Tics can develop into chronic symptoms.
6- Another word describing tics is chorea. Chorea is characterized by involuntary, nonrepetitive, adventitious muscular contractions. It originates from a dysfunction of neuronal networks interconnecting basal ganglia and frontal motor cortex. Since we have the significant clue of only females being affected, it should be noted that estrogen can also induce chorea.
7- Chorea is also a symptom of another increasing disorder - Anti-NMDA Receptor Encephalitis. I wrote about it having a connection to both Autism and vaccines, and interestingly with both Gardasil and Cervarix.
8- Anti-NMDA Receptor Encephalitis has a large connection to young women as it often develops from antibodies secondary to ovarian teratomas or cancerous grow
Here was Dr. Marc Seigel weighing his opinion on this mystery, P.A.N.D.A.S. and also HIPPA. Note the atmosphere of confusion and possible conflict of opinion :
It looks like there are some avenues to explore to help these very sick girls. To read comments like, " conversion disorder," "physical symptoms without a physical cause" or "Experts consider the symptoms a response to anxiety," is just plain wrong.
Mystery, tragedy or crime? You decide.
Teresa Conrick is Contributing Editor for Age of Autism.