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Parents: What do you think about the mystery NY Tourette Syndrome cases?

By now, many of you likely have heard about the case of the 12 LeRoy, N.Y., female students who developed Tourette Syndrome-like symptoms and tics in December. Various news reports, medical claims and reports by experts since have been all over the Internet.

There are many different theories out there about what exactly contributed to the onset of these TS-like symptoms, but according to Wikipedia, the girls’ school was tested for toxins and all other factors for their symptoms were ruled out, the girls were diagnosed with a “mass psychogenic illness” resulting from stress.

What we at TSParentsOnline want to know is this: What do you think of this entire case? Does it help or hurt Tourette Syndrome advocacy? If you or someone you know has TS, how does this entire case make you feel? Do you agree with the ultimate diagnosis of these girls? What is your opinion about some of the things said by the doctors and experts in this case?

Many people from all over the country already have weighed in with their thoughts, which you can check out after the “continue reading” jump. We would love to hear your opinion, too, and you can let your voice be known about this very important, trending topic in one or more of several ways:

  • By leaving a comment in this blog entry’s comments section
  • By logging on to our Facebook page and leaving a comment on our wall or under the status update about this topic
  • By logging on to our Twitter page and sending us a tweet
  • By sending an e-mail to parents@njcts.org.
It’s that simple. Each time we get a response by e-mail, Facebook or Twitter, we’ll post it below. Comments submitted on the blog itself will stay in the comments section. We encourage the entire TS community to respond and put forth an opinion. Who knows, the right people just might notice and some of the confusion surrounding this case could be cleared up!
  • Decbaal V. says … “I’m not a parent, but I have TS and I do not think they are faking. Although I have only been able to see like three or four of the girls, it looks like they do have some kind of tics. It is odd that 12 girls came down with tic-like symptoms. Although we still know little about TS and the cause, scientists can only guess, so it might be possible that all of them have TS or tics, but it’s possible only a couple of them have tics and the others the Conversion Disorder. It’s hard to say — the doctors don’t give straight answers.”
  • Patrina D. says … “I did read it last week. Not to sure what to make of it.
    My 12-year-old Son has TS, and I know it is largely affected by stress. I don’t really agree with the whole ‘Conversion Disorder’ theory. I think it is quite possible that the group of students could be stressed out by a certain teacher, perhaps, and that could definitely cause it. I know it has for my son. I am now reading that it could be the result of the Gardisil injection. I do not believe that could be the case, either, as why haven’t we heard about it happening anywhere else? I myself had that shot and do not have any symptoms of TS. Perhaps it could be an environmental issue, but really what I think it comes down to is anxiety. From what I have seen in my son, that is a major stressor. I do not agree with the fact that they supposedly have ‘answers’ and are not sharing them. How are we to help one another if we don’t have all of the important information?”
  • Melissa W. says … “Like someone else mentioned, I believe that one of the girls really does have TS and the rest are Conversion Disorder. I find it odd that no boys have reported having these symptoms, especially since TS is much more common in males. Hopefully this story will shed some light on what people with TS deal with every day.”
  • Susan E. says … “This has been a hot topic on my Facebook TS support group Tic Talk. I am personally undecided as to what it is. I agree that its not the Gardisil shot. My daughter who has TS has had two out of the three shots that make up the Gardisil vaccination. Since the first shot in the spring of 2011, her tics have actually decreased. There is a young girl in our group that has TS and attends the same high school. She’s the one who told us about before it became national news. Her tics are so bad on days she has to use a wheelchair. She has had a daily struggle and has had nothing but a rough time from the other kids and the school. In fact I think one of the girls effected has also teased her in the past. She is upset over all the attention and help these girls are getting.”
  • Holly M. says … “It is very mysterious. Honestly, I think that it has to have a neurobiological component such as a propensity towards TS. Maybe they all have distant family members with TS or common co-morbid conditions such as OCD, anxiety, ADHD, Sensory Integration Disorder …? I have a hard time believing that these symptoms, which are so exactly TS-like, could so easily be self-talked into, essentially. It sounds like what they are saying is that the girls were so stressed about getting it that they got it. If it was just several individuals getting stressed, they would all manifest differently if they weren’t somehow focused on tics, so a focus on tics has to be a component in their theory.
    “The misconception that many people already hold — that if you just believe yourself to be normal and don’t give in to mental illness, you will be well — could potentially be reinforced by this story. As a parent, I have been told that it’s the parent’s fault that the child is hyper or has tics or has this or that, because the parent is telling the child they have TS, ADHD, etc. — that we shouldn’t label these kids and definitely don’t tell the kids at school unless things get out of control because then they might be treated differently.
    “Do people really believe parents talk their kids into not being normal? The idea is so offensive to me and it makes me angry on these girls’ behalf because the implication is that they are mentally weak, highly suggestible individuals. If they are, and I don’t believe they are, it is not without some predisposition to tics, in my opinion. Stories like this, attributing tics to psychogenic illness, could help spread awareness of the difficulties of living with TS, but could also serve to reinforce these opinions and attitudes about TS being ‘all in your head.’ “
  • Curmudgeon Ess says … “I’m angry, actually. My son has had seizures like this for several years, and no doctor we have seen has been able or willing to help; my son even was accused of faking it.”
  • Robin L. says … “It makes me angry, too. I feel that these girls are being taken seriously, while other people in the past haven’t been. … (In response to Susan E.’s post) That makes me so angry to hear about that girl. I am so sorry to hear her story and hope she does get better. Sounds about right for the experience for people with TS. People make fun of you and talk about you behind your back. And now that these popular girls have it and know what its really like, and that you can’t help it, they are furious about it. Serves them right.”
  • Gayle F. says … “Actually, I called NBC three times to give them NJCTS’ phone numer and I also e-mailed information to The Today Show. I am a mental health professional and was furious that these girls were given a psychiatric diagnosis [i.e mass hysteria]. A doctor who was not able to come up with some sort of medical answer just came up with some Freud-like diagnosis. Too many people given air time who know not about what they speak! I hope someone knowledgeable gets to these girls who can give them some accurate answers!”
  • Christina D says … “I actually do not like the reference as ‘Tourette-like symptoms’ given by the media. Tourette is more than tics, so this does not help in awareness. They don’t have TS. They have been diagnosed by a neurologist with mass hysteria. Associating this with TS gives the wrong idea of it being a mental illness. They have psychological medical history previously according to one of the students own disclosure on The Today Show. I don’t think it is a mystery at all and more like sensationalism at it’s best! I think the conspiracy theories are a bit much, too. The media attention is only going to aggravate their tics and slow down improvements.”

0 Comments

  1. A headline in today’s collection of TS links caught my eye. I admit I have not read the article, but it reminded me of an issue we have had over the years. Regarding “Has Tourette Syndrome become infectious?” — this angle could make life more challenging for people with TS, I think.

    Over the years we have encountered people who literally turn and run when they learn that my son has TS. Kids have shunned my son, saying “Don’t sit by him, you might catch what he has.” We have made a point of telling people that TS is NOT contagious. You cannot “catch” TS from being in the same room with my son.

    Too many people are too eager to exclude kids like my son as it is (“What if he hurts himself?” “He needs to be able to sit still.” “I don’t care what he has, he has to act like everyone else.” “He makes other people uncomfortable.” “We just want everyone to feel safe.”); adding a fear of contracting TS from being around my kid and others like him is NOT helpful.

    • Sarah,
      We agree with you, which is why we included that in the links package. That headline definitely stands out, makes things harder and, dare we say, possibly can offend. But people need to see it in order to do something about it, and that kind of advocacy is what such links — and this blog in general — provide. Thanks for fostering that conversation. We encourage you to post this same comment under the links post as well.

  2. The treating Neurologist never diagnosed these girls with Tourettes which would have been the first option after evaluating them! Why is it so difficult to give this reputable Neurologist credit? Why jump on the conspiracy and mystery band wagon before considering the facts we all do not have?

  3. Another fact is that no one is considering that a sudden onset of a group of females having a sudden onset of Tourettes is not medically realistic! They don’t have Tourettes. They have tics!

  4. This hurts Tourettes Awareness! Tourettes is Not just tics and to keep referring to it as “Tourettes Like Symptoms” hurts awareness. They have tics driven by something but they do not have sudden onset of Tourettes. This just futher feeds into the general public ignorance of Tourettes of it only being complex tics. This type of Stigma only takes the progress made in Tourettes backwards! I wrote to the Today Show to tell them to stop referring to this as Tourettes. These girls and that new adult female case are not Tourettes. It is more plausible they have a Tic disorder but that is not Tourettes! My son has mild tics and is more disabled by his disorders. One of those girls admitted to having previous psychological issues addressed while she was on the Today Show. This is media sensationalism and conspiracy theories at it’s best. The fact is that these are girls that attend the same school, but it is isolated. This just opens the door for paranoia and also will create doubt for those who have Tourettes because it is how they were born, not because of something that a parent could have avoided! How about the media leave them alone and let them heal whatever it is.

  5. To be truthful i think we know more about the surface of the moon than we do about Tourette syndrome,and i believe TS is so affected by stress levels,i personal had one very mild tic as a teenager ,then nothing again until i was 46yrs old and went to full blown Tourette’s in a mater of weeks ,so basically think that in the case of the 12 LeRoy, N.Y., female students who developed Tourette Syndrome-like symptoms and tic’s,anything is possible as far as TS is concerned ( personal opinion )

  6. I am so mad I could spit. Why? Because my son has been having “seizures” like this for two or three years, and not one of the doctors we have seen has been able or willing to help. O loses control of his legs, is thrown to the floor with full-body flailing, his airway slams shut, and what response do we get from the neurologists?? 1) “We must do something to stop that screaming tic!” (Uh, doc, he’s screaming because he is in pain; his arms are trying to dislocate.) 2) “That’s not TS; he’s just doing that to get attention. Ignore him.”

    The seizures also were accompanied by the advent of crushing headaches, presumably migraines — but the well-known neurologist quoted above said O just thinks he is in pain, his headaches are not real. A prescription for migraine medication, or some tests to rule out more serious problems, would have been nice, but this is the care we received, instead.

    CNN is not all worked up with concern over what is causing my son to have these issues; Erin Brockovich is not looking for chemical spills and other conspiracy theories. No, instead we are left to deal with these “attacks” on our own. O has been excluded from activities because whatever this is (seriously, who on Earth would *fake* something like this — for years?!?) scares people and makes some people worry they will be liable if O hurts himself during a seizure.

    So, really, honestly, frankly, I am, still and for the forseeable future, too angry about the medical profession’s lack of concern and effort regarding my own child to have much of an opinion about this news story.

    • Sarah, thank you for your always honest, straightforward opinion. It means the world to us, as we are sure it does to the many people reading it who are in the same situation. We encourage you to further what you’ve said here with a standalone blog entry.

      • All I need is the time; it has been a long road.

        I’m not one to believe in conspiracy theories, et al., but I think the chemical spill theory is plausible. here’s why:

        O’s tics are worse in spring and fall; we are pretty sure that allergies are triggering some sort of response in his body (histamine reaction?) that is a stressor, leading to increased ticcing.

        As someone noted above, her son’s tics are worse when he is stressed. Stress, fatigue, hunger, thirst, all can make tics worse; so can environmental triggers.

        I know first-hand that there are environmental triggers for migraines. So I think it is entirely possible that there is some environmental factor in that town that is behind everything.

    • So sorry you are going through this. Also very sorry for those of you who say this does not happen to those who get gardasil as I know of 100s who have this and many many other problems after this vaccination. truthaboutgardasil.org will tell you more. also on facebook you can join Mysterious Illnesses to join others in maybe finding a possible link and compare notes . Again I know how you feel and truly am sorry for your pain and your sons. God Bless

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