Update: Tic Disorders in Our School

Since writing my last post,  a diagnosis has been revealed concerning the 12 teenage girls in my community who suddenly developed a tic disorder.

To recap: My husband and I attended a meeting in which state health officials explained in general terms what could cause tics and specifically stated what they found did not cause the tics in this particular group of girls. Citing privacy laws, they declined to say exactly what was the diagnosis. Some parents (one in particular) stated that they were not given a diagnosis.

Unfortunately, this caused a firestorm of speculation and touched off a media frenzy.

After receiving permission from some of the families, neurologists treating most of the girls revealed that the diagnosis was, indeed, Conversion Disorder. I had hoped that announcing this would calm the craziness, but I was wrong.

Conversion Disorder is controversial. The Mayo Clinic website describes it this way:

Conversion disorder is a condition in which you show psychological stress in physical ways. The condition was so named to describe a health problem that starts as a mental or emotional crisis — a scary or stressful incident of some kind — and converts to a physical problem.

Some people feel this smacks of an “it’s all in your head” mentality. Some of the girls themselves and their families claim there was no crisis or stress involved. As one girl said on the Today show:

There was nothing going wrong. I just woke up and that’s when the stuttering started.

Well, isn’t that what happens sometimes when someone has a heart attack or stroke or any of a number of things? Our bodies have a way of forcing us to pay attention. We may not notice stress in our lives getting worse or we simply get really good at ignoring it. I’m a big believer in cumulative effects. As a parent of a teenage girl, I know the toll that bodily changes and problems at school and home can take on a kid. We joke about the drama, but it’s vicious and it’s very real in high schools.

On the surface, the complete descriptions of Conversion Disorder available online (which is where most people go to get their information), don’t always match up with the symptoms these girls are reported suffering. However, we all know that internet information isn’t the end-all and be-all. We certainly don’t have access to the same information the doctors do. That includes the results of the battery of tests done on each girl.

Extremely strong sentiment has generated on all sides of this issue. A lot of people don’t believe the diagnosis. I have heard and read that people believe the tics are caused by everything from vaccines to strep infections, illicit drugs, Lyme disease, chemical contamination, nodding syndrome, etc., etc. And people are very, very passionate about their personal opinions.

But why this insistence that the doctors are lying to everyone?

For one thing, mistakes have been made in the past. The internet is full of people with misdiagnosed health problems that took years to finally get answers and they don’t want other people to suffer the way they did. I can’t fault that. I just question the absolute fanaticism some people exhibit in expressing their opinions.

The human body is incredibly complex and Science continues to find new and astonishing information and makes connections that seemed impossible at one time. Yes, I have no doubt that, in general, medical mistakes are made on a daily basis.

So far, only three families out of the 12 girls affected don’t accept this diagosis. But do we really have the right to pry into all these girls’ lives just because three families want it? And who are we to disbelieve the doctors if nine of the families trust them and are following their treatment?

Personally, I think it has been blown way out of proportion. Part of that is the way it was handled by state health officials and the school at the community meeting. Not giving a full answer just caused the talk and speculation to explode. I don’t know if any of the authorities asked the families before the meeting whether they could reveal the diagnosis or not. It may never have occurred to them. However, it seems obvious that not giving a full answer would cause more problems than it would solve. Then again, hindsight is 20/20.

I am a writer and a parent and I am truly of two minds about this.

The writer in me is fascinated by the day-to-day progression of this situation, the personalities involved, and the social and health implications. And yes, I feel a little guilty about that.

The parent in me is confused, skeptical, embarrassed, and pissed off.

Confused and skeptical because I still have this nagging question at the back of my mind about how this all started in the first place. There’s something about the initial kids that bothers me. It could be we will never know with 100% certainty. It’s annoying, but that’s life. Some times we just have to suck it up.

I’m embarrassed by the crass media attention descending on our small town. Embarrassed by the satellite trucks parked outside the school and the reporters that roamed around town getting interviews and background shots. I understand one group even talked their way into one of the girls’ houses and upset the family terribly.

I’m pissed off by the parents who obviously lied at the meeting and created this nonsense. Because the fact of the matter is that opening this can of worms hasn’t produced any marked improvement. In fact, the increased attention to this situation has caused some of the girls’ symptoms to get worse.

Stress, maybe?

Update of the update: Every day, more and more about this situation is available from multiple news outlets. As far as my family and I are concerned, it has gotten ridiculously out-of-hand and I can only wonder what the fallout will be. Nothing good, I’m afraid. I will not update this any further.