Posts Tagged ‘TS’

I am sure many of you have noticed the story about the 12 teenage girls in Leroy, New York who all have been having tic-like symptoms.  According to the news, this started out of the blue with all of the 12 girls.  This news story has been going on for over two months and  most recently hit the national news.

I will be honest with you that there needs to be more discussion about Tourette Syndrome (TS), but I am not sure if this news item is really doing those who struggle with Tourette Syndrome any justice.  The news sensationalism is starting to sound like the Salem witchcraft hunt.

I have seen videos of some of the girls and it does appear that they are having both movement and vocal tics.  According to the news there has been intensive investigations into this situation and it has been determined that they have not identified any specific environmental factors that may have triggered the phenomenon.  I think the CDC is also involved in the investigations.

Over the last two months the diagnosis has been referred to as being Tourette Syndrome.  Unfortunately that does not explain 12 different individuals experiencing TS at the same time.  Most recently, I see the diagnosis is changing from Tourette Syndrome to a diagnosis of conversion disorder. Conversion disorder, formerly known as hysteria,  is a neurosis marked by the appearance of physical symptoms such as partial loss of muscle function without physical cause but in the presence of psychological conflict. Symptoms include numbness, blindness, paralysis, or fits without a neurological cause. It is thought that these problems arise in response to difficulties in the patient’s life, and conversion is considered a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders 4th edition (DSM-IV). 

Conversion disorder can present with any motor or sensory symptom including any of the following:

  • Weakness/paralysis of a limb or the entire body (hysterical paralysis or motor conversion disorders)
  • Impaired vision (hysterical blindness) or impaired hearing
  • Loss/disturbance of sensation
  • Impairment or loss of speech (hysterical aphonia)
  • Psychogenic non-epileptic seizures
  • Fixed dystonia unlike normal dystonia[clarification needed]
  • Tremor, myoclonus or other movement disorders
  • Gait problems (Astasia-abasia)
  • Syncope (fainting)
  • Hallucinations of a childish or fantastical nature  [1]

I don’t think this flip-flopping of the diagnosis is doing any benefit for those who have Tourette Syndrome.  To some extent, it is implying that Tourette Syndrome is psychological.  This misnomer has been a battle that every individual with Tourette Syndrome has faced. The big question: Is it real or is the individual purposely doing the tics?  If you have had any experience with TS, it is obvious that physiological that may be affected by psychological factors, such as anxiety.

This morning I saw two of the girls on a morning television show and they appeared to be frustrated because they knew no more today about what is wrong with the them than what they knew two months ago.  It almost sounded like if they had a specific diagnosis, it would imply that it could be treated and they would be cured.   When I heard this, I thought to myself, stand in line.

There are thousands of people in the United States, and all over the world, who would love to have some answers for Tourette Syndrome and have a cure for it.  From a research standpoint, it is my understanding that we are not even close to understanding Tourette Syndrome, let alone having a cure.

I am very glad there is discussion about Tourette Syndrome, but I wish it was more factual rather than being referenced with hysteria, or as a plague, or with conversion disorder.  I hope this does not negatively affect the funding for research for Tourette Syndrome.  We need research to continue and we need funding to do the research.  I am concerned that this flip-flopping of diagnosis is muddying the waters which could potentially affect people’s reaction to Tourette Syndrome.  To prevent this from happening, I think people need to talk about it more.  Get the facts out.  More importantly I expect a statement to be made by the Tourette Syndrome Foundation. I think it is best that we try to control the discussion, or at least add some credence to it. Instead, I hope this news story can turn into a positive. These 12 girls may provide a unique research study for evaluating Tourette Syndrome. Hopefully research teams can get involved and turn this news story into a benefit for Tourette Syndrome research.

You may ask why does this concern me so much.  My son has Tourette Syndrome, and at one time in his diagnosis stages conversion disorder was brought up. That was four years ago. Since then the doctors refer to his condition as Tourette Syndrome or non epileptic seizures (my son also has epilepsy). It depends on the type of tic being discussed.

Regardless of the label, Tourette Syndrome has put a heavy weight on my son’s life, and I don’t want some negative publicity making things worse than they already are.  Over the years the media has sensationalized Tourette Syndrome.  Tourette Syndrome patients were commonly seen as oddities on talk show stages.  I thought we had got beyond this.  Unfortunately the media loves sensationalism, and they are back at it.  See the following sensational headline, which references the plague.

For more information about the LeRoy incident see:  The ‘mysterious’ Tourette-like syndrome plaguing a N.Y. town

[1] Conversion Disorder, Wikipedia,  http://en.wikipedia.org/wiki/Conversion_disorder

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This a continuation of the post A new specialist for Tourette Syndrome…   In this previous post I described my son’s new doctor who specializes working with kids with Tourette Syndrome. He is not a typical doctor, but an expert in self-hypnosis, and my son enjoys talking with him. Our first appointment focused on the doctor getting to know my son and for my son to get comfortable talking to him. Dr Dan is a pretty funny guy and is fairly easy to talk with him.

This week we had another appointment with Dr. Dan. He began our second appointment by asking my son, “What did you think about our last meeting.”  My son said, “It was all good.  I also talked to my mom about what it meant when you asked me what types of tics I had.  I didn’t understand by what you meant by ‘types of tics.  We also talked about hypnosis.”

Description of a tic

The doctor asked my son, “What is your worst tic?”  My son said, “It is a yelling tic.” The doctor asked, “What happens when a tic starts?”   At first my son had a hard time describing it. I jumped into the discussion to help, and said to my son, “Think about where you are at when these tics start.” My son explained, I usually gets movement tics at the grocery store.”  The doctor then asked him what kinds of movements and my son showed him his jerking head tics.

My son explained to the doctor that there are so many people at the store and he felt like they were watching him. The doctor asked if the tics stop and if they do, how do they stop?   My son responded saying they just stop. The doctor asked if he was sure. He added, “Tell me what do you do when they start? What if you are not done shopping?” My son explained that sometimes he sits down on a bench at the store or he goes to the car. Then he does deep breathing to try to relax. The doctor exclaimed, “Well there is a lot that you are doing to make them stop.  You are removing yourself from the location, and your are doing deep breathing and trying to relax.”

He then said to my son that he knew that my son could not control the tics but did my son know what caused his tics.  My son couldn’t really answer.  The doctor turned to me and asked the same question.  I explained that when this first started I thought my son was doing it on purpose.  Later I realized it was tics, and it appears the tics are caused by stress.  The doctor responded that stress is a big word and has a big effect on many people.

The doctor went on to tell my son about one of his patients that had the same type of tic my son had except his yelling tic was so loud that when the boy had an appointment with the doctor other people in the building would come to his office to see if everything was all right. The doctor explained to my son that he ran into this boy’s mother at a local mall. The mother approached Dr. Dan and told him she wanted to update him on her son David. The woman said, “David is now 26 years old, has graduated from college and is married. He hasn’t had a yelling tic for over ten years.” The doctor then said to my son that we can make that happen with him too.

Visualization

The doctor asked my son if he can go some place without physically moving. My son laughed and said no. The doctor said that he could, and he asked us to watch him do it. He closed his eyes and explained to us he was on the beach and his dog was sitting beside him.  He even reached out to pet the dog.  My son then understood that by imagining the beach the doctor could go there in his mind.

The doctor asked my son to participate in an experiment. He brought out a pad of paper and a pen. He asked my son to close his eyes and then write his name on the paper. After my son did this the doctor said keep your eyes closed and now write your name in cursive. Then he said my son could open his eyes. Looking at the piece of paper, my son had perfectly printed and wrote in cursive his first name.  The doctor asked how did you do that?  He continued, “Did you tell your hand that it should write the letters of your name, making them nicely spaced, and beginning your name with a capital letter?”  My son said, “No, I just imagined my name and then I wrote it.”  The doctor then said, “That is exactly what I am going to teach you to do which will help you with your tics, or taking shots or falling asleep at night.  He also asked my son how did he learn how to write his name so well.  My son said it was with practice.  The doctor explained that my son will need to practice in order to get the benefit from self-hypnosis.  The topic of practice came up several times during the discussion.

What is hypnosis

As I mentioned earlier my son and I had talked about this doctor being a specialist in hypnosis. Since my son brought up this discussion in the appointment Dr. Dan began talking about that topic.   A good portion of the appointment consisted of  talking about what hypnosis was. Dr. Dan first quizzed my son and asked him to describe what he knew about hypnosis. My son gave the typical Scooby Doo television description of hypnosis:

It’s like a trance.  A man takes a watch and swings it in front of the person, telling the person they are getting sleepy. The man then makes a suggestion that the hypnotized person do something, like squawk like a chicken. Soon the hypnotist snaps his fingers to wake up the guy. Everyone is laughing and the guy doesn’t understand what has just happened.

The doctor then told my son he was going to ask me what I knew about hypnosis, which he did.  I explained that of course I had seen hypnosis in cartoons, but I also participated in a hypnosis group in my college group.  Though I didn’t achieve what I wanted to achieve, I still used the relaxation techniques to this day.  During this description the doctor interrupted me at one point when I said that I did not accomplish what I wanted to with hypnosis.  He smiled and said, “Not yet.”

The doctor then turned to my son and asked if I had taught him those relaxing techniques.  My son said no, which really wasn’t true.  I had taught him visualization to get rid of hiccups.  When he was little we also used to breath and count when he had some of his seizures.  My son had also worked with a specialist who taught him biofeedback which used the deep breathing relaxing technique.  In fact my son tries to use that technique when we have to change his insulin inset, which is administered with a shot.  During this description the doctor interrupted me at one point when I said that I did not accomplish what I wanted to with hypnosis.  He smiled and said, “Not yet.”

The doctor explained that none of the TV depiction of hypnosis is true and that only you, yourself, can control your mind. He then went on a small tirade about the lack of ethics with these people who offer programs to stop smoking, losing weight, etc. or even worse, using the topic of hypnosis as a means of entertainment. He explained, hypnosis is a medical treatment and these people are practicing medicine without a license, which is against the law. He explained, that is why these people have a show for one day in a city and then they quickly leave town.  I could tell that this topic of giving the wrong impression about hypnosis really bothered this doctor.

As he was having this little tirade he was trying to get a TV ready to watch a VHS recording.  Soon his tirade of false impressions of hypnosis moved to a tirade about how the university doesn’t provide better equipment.  The TV was ancient.  The doctor wiggled all of the cords, and still the TV would not work.  He also said, “They won’t even pay to convert my videos to disc.  This is just another example of poor budgeting by our state government.”  As he continued to fiddle with the TV he mentioned that recently he got a phone call from a department in Washington D.C. asking him if the shut down of the state government, was impacting his access to his grant funds, which it wasn’t.

Demonstration by a previous patient

Soon the doctor came back to the task at hand and said that he was not going to waste our appointment time to deal with faulty equipment.  He said we will look at a different recording that he had on disc and could watch on his huge computer screen.  The DVD was a recording of a ten-year old girl explaining how hypnosis has affected her and how she does it.  She called it meditation rather than self-hypnosis.  She also explained what type of tics that she had, which ranged from a head turn to as extreme as coprolalia, which are swearing tics.  She called them bad word tics.  She demonstrated that as she relaxed, envisioning a nice place, she would then see a stop sign.  She said it was really “cool” because when she saw the stop sign her tics would stop.

Just three words:  3 and 6

At this point our appointment was getting close to the end.  The doctor wanted to give my son a tip for starting the process of self-hypnosis.  He said all you have to do is remember three words which are:  three and six.  He went on to explain that he wanted my son to practice breathing in deeply, through the nose, for at least three seconds, and then exhaling through the mouth for six seconds.  He demonstrated this and then asked my son what happens to the doctor’s shoulder when he does this.  My son said they go up when you breathed in and then they went down when you breathed out.  The doctor explained that as you continue doing the breathing exercise slowly the whole body would relax, all the way from the head to the toes.  Then to end our appointment he asked my son to practice this and he will see us at our next appointment.

A talent for children

Looking back at this appointment I realized why this doctor appeared to be good.  My son and I have been to many doctors, including pediatricians, neurologists and psychologist.  But none of them had the gift of talking to a child.  Yes, some of them changed their language and tone, but this doctor was different.  It was not just the style of the language but it was the progression of the topic.  He clearly lead my son through topics without my son realizing he was learning new things.  This doctor was really an expert at this.  He knew how to start down a topic, ease into it, get my son’s impression of it, and then provide the details of it, along with reinforcement.  As a result of this, the appointment was actually enjoyable.  The doctor even mentioned that my son was a very good listener, and remembered things that many people would not remember such as not using the words “trying” or “can’t.”  The way this doctor was working with my son was actually boosting my son’s self-esteem.  It was absolutely wonderful to watch.  I am looking forward to our next appointment in a couple of weeks.

To Be Continued . . .

Tourette Syndrome (TS) also known as Gilles de la Tourette syndrome is a neurological disorder which arises in early childhood or adolescence before the age of 18 years.  It consists of involuntary movements and vocalizations.  Movements can be as simple as eye blinking or more complex movements that can involve the whole body.  Vocalization tics can be as simple as clearing the throat or in more extreme cases involve barking or swearing.  The tics involving swearing is called coprolalia.  Unfortunately this type of  Tourette Syndrome is continuously used as a representation of the disorder, because it is so unusual and the media and entertainment industry love sensationalism.

Here are some facts about Tourette Syndrome:
 
 – TS often goes undiagnosed. No exact figure can be given. But It is estimated that 200,000 people in the United States are known to have the disorder.
 
– No definite cause has yet been established for TS, but evidence points to abnormal metabolism of at least one brain chemical called dopamine.
 

– Children with TS have the same IQ range as the general population.  But it is common for TS to be accompanied with learning disabilities, attention issues and obsessive compulsions.

– Fewer than 15% of people with TS have the corporalialia type which are the tics consisting of swearing and uttering obscenities

 You may ask why do I care so much about Tourette Syndrome.  My son was diagnosed with Tourette Syndrome about three years ago.  There is not one day that we are not affected in some way by this disorder.  He has not had a day where he did not have tics.  Psychologically it has had a great impact on him, and he also has some of the companion conditions such as attention issues and some compulsions.  There is not a day that he is faced with the concern that he will be teased for having the tics.  He doesn’t want to be different, but he has no choice.  We are continuously dealing with people who do not understand the disorder. Some of these people are well-educated and unfortunately work within the education system.  For my son, 3rd grade, 4th grade and 5th grade were a torture.

 So yes, I am passionate about Tourette Syndrome.  I am constantly scanning health news stories on the web, hoping to find some information about new research or more importantly a cure. 

 So, I ask each and every one of you to take action when you see the media sensationalize Tourette Syndrome.  All it takes is a couple of sentences to express a desire to stop the misrepresentation of this disorder. Stand with me and support the 200,000 people who are impacted by TS.  They need your support.  They need your empathy.  They need you to be aware.  Let’s start by calling it by its proper name:  Tourette Syndrome.  It is not Tourettes Syndrome.

Most recently I have been seeing a headline:  The Schultz Apology and Liberal Tourette’s Syndrome where tourette syndrome is used a derogatory adjective defined in the article as:  “A philosophical tic exemplified by an uncontrollable urge to blurt obscenities and socially unacceptable, decidedly inappropriate remarks. A trait that popped up somewhere along the line in the late 1960s and, in one form or another, has been costing liberals everything from votes to ratings to newspaper sales ever since?”

People with Tourette Syndrome enough and don’t need the media sensationalizing it and using it name as a derogatory reference.  I encourage all of you to read the article and leave your feedback about the usage of the terms Tourette Syndrome as a derogative adjective.

To learn more about Tourette Syndrome, here are some links describing the author’s personal experience with Tourette Syndrome  http://www.salon.com/life/feature/2010/10/19/mysteries_of_tourettes/index.html 

http://shenandoahbreakdown.wordpress.com/2010/10/28/a-life-of-uncontrollable-urges-or-tourettes-and-the-writing-life/#comments

My goal is to start a ripple and hopefully that ripple will turn into a wave.