Posts Tagged ‘Tourettes Syndrome’

In earlier posts or from tweets on Twitter you may have already surmised that my son has Tourette Syndrome and some of the comorbid conditions that can go with it, such as OCD and ADHD.  Below is some basic information about Tourette Syndrome and a description of our experience with it.  It also includes a description of some behaviors that are happening in our society and my opinion about them..

Tourette Syndrome (TS) is a neurological disorder that  is misunderstood and has been stigmatized.  The entertainment industry, whether it be television, radio or the internet, has been criticized for depicting those with Tourette Syndrome as social misfits whose only type of tic is coprolalia (a vocal tic consisting of swearing).  The coprolalic symptoms of Tourette’s are also used for humor.  To the public, this representation of TS has created an inaccurate perception about people with TS.

Take a moment, go to Twitter, and do a search on the word Tourette.  The majority of the results that you will see are despicable. Individuals are pretending to have TS or accusing others of having TS and use it for an opportunity to swear in their tweets.  There may also be  the references to “Glenn Beck has Nazi Tourette’s.”  The other common tweet has to do with the Tourette’s Guy, who has a website and has posted videos.  Tourette’s Guys is a drunk, overweight man who claims he has Tourette Syndrome and spends his time video taping himself while he is philosophizing and swearing.  Some allege he really does have Tourette Syndrome, and some don’t.  Either way, I find him vulgar.  There was a time when I would send tweets to these tweeple and explain how bad the disorder is.  It is rather odd that a number of them responded by telling me off and then saying they had TS and could do what they wanted.  I find it very hard to believe that a person with TS would make these type of comments that are in these tweets.  I finally had to stop this confrontational tweeting because it just infuriated me, and put myself susceptible to a barrage of lewd comments from these tweeple.

Most recently, the lawyer of a woman,  formerly known as the Hiccup Girl, may be using TS as a defense tactic for murder.  The medical advisory board of the National Tourette Syndrome Association took issue with any defense based on the disorder.  We also recently had a politician, Prime Minister David Cameron making a jibe user a tourettes reference.

The other hot topic with people with TS is the bullying that may occur.  Bullying has recently become a hot topic in the U.S. due to some suicides that stemmed from bullying.  Bullying doesn’t just happen to the smallest kid in the class. Bullies target those who seem to be less powerful or not as strong. Bullies also often target children who seem “different”. Children with TS and other disabilities are, therefore, at significantly higher risk of being bullied. All students have the right to attend school free of fear of harassment and bullying.

TS is recognized as a disability in the Individuals with Disabilities Education Act (IDEA).  Disability harassment is discrimination that violates section 504 and its regulations. Under Section 504 and Title II, disability harassment in schools is defined as, “intimidation or abusive behavior toward a student based on disability that creates a hostile environment by interfering with or denying a student’s participation in or receipt of benefits, services, or opportunities in the institution’s program. Harassing conduct may take many forms, including verbal acts and name-calling, as well as nonverbal behavior, such as graphic and written statements, or conduct that is physically threatening, harmful, or humiliating.”

Check out Jaylen’s Challenge website, which is a grass-roots effort of a young man name Jaylen who has Tourette Syndrome and has made it his goal to reduce bullying for disabled children.  Jaylen’s website, at http://www.jaylenschallenge.org/how-can-you-help,  provides the following suggestions for how you can help with this cause:

  • Donate as much as you can. Don’t forget, donations over $10 gets an exclusive ‘Bullying No Way!’ glow in the dark wristband.
  • Spread the word about this cause. I am trying to change the world, one classroom at a time.
  • Don’t bully people for ANY reason. When you bully someone, it is because you are insecure with yourself in some way.  If you can’t help yourself, talk to a parent, a teacher, or another adult about receiving help.
  • If you are a parent and you know your child “picks” on other kids, don’t laugh and think it’s merely “child’s play” or harmless. This is serious. Kids are losing their lives. Talk to your children, educate them. Let them watch my videos under the video links tab.
  • Take up for someone when you see bullying. Just as I’m trying to do in a sense, ‘Pay It Forward’.  Stick together. A bully will pick on an individual, but a bully will not bully 5 kids standing firm together.
  • If you are getting bullied, you HAVE to tell someone. I know you don’t want to tattle and make it worse, but tell someone. Tell me and I will try my best to do an ‘in-service’ to your school if we have the funds available. The bully will never know it had anything to do with you.
  • Come back to my website often. I am going to try to receive a strong rally of supporters in order to get help to children.

Jaylen is a very courageous young man and is a fighter for doing what is right. Take a moment and look at his website.  You will learn more about TS and directly see how an individual lives with TS.

I think the portrayal of TS in the media is shameful.  Having TS seems hopeless.  The medical community haven’t made much success at improving the lives of those that have TS.  For those like my son, each day is a struggle.  I can’t count the number of days my son has come home from school crying because of events that happened with his peers. Even more so, there have been numerous times when someone called him “retarded” because of his TS.  (Coincidently, Congress recently took action on the use of the word “retarded” and has removed its reference from all federal laws.)

Every time this happens it wounds my heart.  Every day, I wish I had the power to take away this disorder from my son.  I would rather carry that burden myself, than have him struggling day after day.  Unfortunately I do not have that power to do this.  Instead all I can do is help raise awareness about Tourette Syndrome and to continue looking for a cure.  I know I am only one person, but I am slowly growing a village, and who knows where this may take us.

Related Posts:

Related Posts:
Tourette Syndrome and my son
Tourette Syndrome, school and despair

As you may already know my son has Tourette Syndrome and we have been looking for a treatment that will reduce the amount of tics and reduce the intensity of the tics.  The following is an overview of Tourette Syndrome and a description of some of the treatment options.

Tourette Syndrome

Just for a little background information, Tourette Syndrome (TS) is a neurological disorder.  The first symptoms usually are involuntary (outside the patient’s control) movements (tics) of the face, arms, limbs or trunk.  These tics are frequent, repetitive and rapid.  Many persons report what are described as premonitory urges — the urge to perform a motor activity.  There are also verbal tics.  These verbal tics (vocalizations) usually occur with the movements.  Associated conditions can include attentional problems (ADHD/ADD, impulsiveness (and oppositional defiant disorder), obsessional compulsive behavior, and learning disabilities.  There is usually a family history of tics, Tourette Syndrome, ADHD, OCD.   A diagnosis of Tourette Syndrome consists of the following criteria:

    • Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently.
    • The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than one year, and during this period there was never a tic-free period of more than three consecutive months.
    • The disturbance causes marked distress or significant impairment in social, occupational or other
    • important areas of functioning.
    • The onset is before age 18 years.
    • The disturbance is not due to the direct physiologic effects of a substance (e.g., stimulants) or a general medical condition (e.g., Huntington’s disease or postviral encephalitis).

Treatment Options

There is no cure for Tourette Syndrome yet, but there are a number of different treatment options to help control TS symptoms.  These treatment options include medications, hypnosis, Habit reversal training (HRT), massed negative practice, biofeedback, relaxation (such as exercise, yoga or meditation, deep breathing techniques), other behavioral approaches such as Cognitive Behavioral Therapy (CBT).  Each of these options have their good points and bad points and work differently from person to person.

Medications

Medications are available to help control TS symptoms and include atypical neuroleptics, neuroleptics, anti-hyperactive drugs, and anti-depressants. Individuals react differently to the various medications, and frequently it takes some time until the right substance and dosage for each person are achieved.  Almost all of the medications prescribed for TS treatment do not have a specific FDA indication for the disorder.  The biggest issue with these medication are the side affects.  Many people with TS would prefer to have their tics rather than dealing with the side effects of these drugs.

Trigger Avoidance

Trying to figure out what triggers the Tourette’s Syndrome tics is another way of treating the disorder without medication. By observing people with Tourette’s, one may be able to find something that triggers the tics, such as a certain phrase, sight or situation. Once the trigger or triggers have been found, they can be avoided. Of course, the key to this is identifying the trigger, which is not always easy.

One of the alternatives to the medications is hypnosis. Hypnosis is defined as a relaxed state of consciousness.  This state allows people to be more open to suggestions.  When the suggestions are related directly with their symptoms and anxiety, they are able to relax and make suggestions to reduce the Tourette Syndrome symptoms.  It is also known that stressful situations can worsen the tics of Tourette Syndrome.  After practicing the hypnosis methods people with Tourette Syndrome can make the suggestions a part of their normal life.

Stress Reduction

Other types of behavior therapy, such as meditation, deep breathing techniques and biofeedback have been shown to reduce stress, which increases how severe and how frequent the tics are.

Cognitive Behavioral Treatment

CBT is a type of behavior therapy used by mental health professionals to remove the negative thoughts and emotions connected to random or seemingly involuntary behaviors.  CBT involves modifying thoughts and behaviors that contribute to symptoms, problems in functioning, and quality of life. It is one of the most research-supported forms of therapy and has been used effectively to address a wide range of psychological conditions. CBT can be tailored for young children or those who have additional psychological or developmental issues.

A well-recognized CBT method to treat tics is Habit Reversal Training (HRT) a group of techniques that include awareness training and learning to replace tics with competing movements.

Habit Reversal Training (HRT)

The most effective type of behavior therapy is Habit Reversal Training. This type of therapy makes people more aware of their old habits and allows them to develop counter-habits. The therapist performing the Habit Reversal Training helps her patient become aware of when a tic will occur, then helps him practice the counter-response to the tic signals his body gives. Most of the time, Habit Reversal Training is effective in naturally treating Tourette’s Syndrome.

Cognitive restructuring is another CBT method that is often used in treating TS.

Cognitive Restructuring

This strategy, as the name implies, involves learning to modify the upsetting or rigid thinking that frequently accompanies TS. Since reducing body tension and overall reactivity is essential for those with tics, relaxation and stress management strategies are important for those with TS to learn as well. CBT strategies are also indicated to address family stress that is related to TS.

There are some factors that help determine whether an individual is a good candidate for CBT. One factor is motivational level. Another factor is being able to detect the thoughts, sensations, or feelings that occur right before a tic is a positive sign.

Hypnosis

Hypnosis has also been recognized as a treatment for the symptoms of Tourette Syndrome.  Hypnosis is a relaxed state of consciousness.  This state allows people to be more open to suggestions.  When the suggestions are related directly with their symptoms and anxiety, they are able to relax and make suggestions to reduce the Tourette Syndrome symptoms.

*Information provided from Tourette Syndrome Association

This is a follow-up to my blog post called Tourette Syndrome, in search for help . . .  Read on if you want to know what life is like when your child has Tourette Syndrome and you are desperate to find help.  In my previous post I described the doctors we had been working with and getting no positive results.  I also described this push by the school to get my son medicated.  I  talked about the medications we tried.  Finally I went on a search for a specialist that worked specifically with children that had Tourette Syndrome and who would look at the full picture of my son’s well-being.

As I said in the earlier post, I found a doctor pretty much by accident and we had to wait five months for our appointment.  Finally the appointment day arrived.  On the way to the appointment, my son was frustrated and didn’t want to go.  He was tired of doctors and he didn’t want to talk about his tics.  So we had a little fight as we drove to the doctor appointment.

Finally we arrive and get through the paperwork with the receptionist and then were escorted to a waiting room.  There were only two other people in the waiting room, a father and a son.  Soon, an elderly, short man entered the waiting room.  His hair was  gray and pulled back into a  pony tail.  Plus he had a gray, long beard.  A little like Dumbledore.   Immediately upon seeing him, I thought to myself, what an odd little character.  Suddenly he said my son’s name.  I was a little shocked.  This was our doctor.  This was Doctor D who was a specialist that we hoped would help us.  Definitely non-traditional.  Definitely not what we are used to in the stuffy world of neurologists.

Doctor D is the  Director of the Developmental-Behavioral Pediatrics Program and Clinical Director of the Developmental-Behavioral Pediatrics Clinic. In addition he is a Professor in the Department of Pediatrics and has a joint appointment as Professor in the Department of Family Practice & Community Health. He is Board Certified by the American Board of Pediatrics and by the American Board of Medical Hypnosis.

I later found out that his research interests include exploration of cyberphysiologic (self-regulatory) abilities in children and adolescents with headaches, Tourette Syndrome, children with sleep disorders, and in the ability of children to learn and use self-hypnosis to alter and regulate physiologic functions.  His bio said:

As an advocate for children and youth who live in families in communities I have an abiding faith in children’s ability to develop and cultivate skills in self-regulation and participate actively in their care toward promoting and maintaining optimum health. I believe in children and their families, and listen carefully to what children say and how they say it to best understand how I can help them and their family to help themselves. Most children and teens (and their parents) are pleasantly surprised to discover that they can learn self-regulation methods that can help them often dramatically with a wide variety of problems, from managing every day stress, to reducing/eliminating pain, to coping with repetitive procedures, managing fears and other forms of anxiety, eliminating habits.

Dr D led us to his large office, which was full of soft chairs and couches arranged comfortable and it didn’t feel clinical.  There was also a table full of 70s and 80s toy memorabilia.  The discussion immediately started with jokes from the doctor.  In fact the joking never stopped throughout our appointment.  He spent the hour talking directly with my son, with an attempt to have my son describe what was going on and to get comfortable talking to him.  Occasionally, he would turn to me for clarification or for confirmation.  One of the rules he told my son was, in our future appointments there were two words that were not allowed.  The words were try and can’t.  He told my son instead we would be using the word do.  Basically ‘Just Do It’, which he claimed was his slogan and Nike didn’t pay him a dime for it.  More humor.    Throughout the appointment he would test my son during the conversation to see if he would use those words.  Interestingly, my son caught himself every time just before he would have used one of those words.  The doctor commented that my son caught on quickly.

The majority of the conversation was the doctor asking my son questions about what kind of tics he had.  I was surprised to learn that my son had a hard time describing them.  Initially he said his whole body felt tight and that it hurt.  The doctor asked him what other ‘kinds’ of tics did he have.  My son responded questionably, “There are different kinds of tics?”  With a little reminder he started remember some of the movement tics he had and the vocal tics he had.

Toward the end of the appointment the doctor told my son that he could guarantee that he could reduce the number of tics my son was having and the intensity of the tics.  I was a surprised when he said this.  I don’t think I have ever heard a doctor use the word guarantee.  The doctor also asked if my son was anxious taking his shots for his insulin.  We described that my son had a real hard time changing his inset for his pump which was administered with a needle into the body.  The doctor said he could teach my son so that he will not even feel the needles. I addition the doctor talked about my son’s inability to fall asleep without taking melatonin.  He said he could teach my son to fall asleep and would no longer need the melatonin.

The appointment concluded with a confirmation that our next appointment was in two weeks and that the doctor would be showing my son and myself a video to explain what he was going to do.  And that was it.  That was our appointment with this new doctor who appeared to be an expert at hypnotism and teaching children self-hypnosis.  I was excited.  He recognized that my son was dealing with a lot of medical issues and that there is anxiety and stress associated with having these medical problems.  As we left the appointment heading to the car my son, with a smile on his face, said, “He is a really good doctor.  I really like him.  He is a hippy.  Kind of like you.”  I laughed and couldn’t wait for our next appointment.  We were headed for a new adventure.

To Be Continued . . .

You may already know that I have a son who has several medical issues including Tourette Syndrome.  For the last four years we have sought some relief from the tics which have become more extreme over time.  Up to today we were working with our pediatrician, my son’s neurologist who takes care of his epilepsy, a clinic that uses non-traditional methods, and a neuropsychologist.

The neurologist hasn’t been convinced that all of the events my son has been having are tics.  There is some suspicion that they may be non epileptic seizures, or a combination of both tics and non epileptic seizures.  In pursuit of gaining some relief from these events,  he referred us to a neuropsychologist.  In addition he prescribed, at one time or another,  antihypertensive medications, which are medications whose original purpose is for treating high blood pressure.  The medications we tried included Clonidine (aka Catapres) and Tenex (aka Guanfacine).  Unfortunately the side effects can include sedation, dry mouth, fatigue, headaches and dizziness.  The sedation affect wiped out my son and we discontinued using them.

The non-traditional clinic we saw, which was a part of Children’s Hospital, worked with my son to learn bio feedback.  My son became really good at this.  Unfortunately it didn’t work well with his tics because he needed to do it before the tics started.  Once he is caught in a round of tics he can’t concentrate enough to do the bio feedback.  The key is to identify triggers and hopefully try the bio feedback when a trigger is recognized.  We still try to use this method today, not only for TS, but also when he has to take shots for his diabetes.  It is a great way to just calm down.

This non-traditional clinic also had a psychiatrist that specialized in vitamins, minerals and supplements.  At one time he recommended that my son take:

Omega 3 Fatty Acids
B-Complex
Probiotics
Multi vitamin
Vitamin D

We did this regime of supplements for about six months.  Initially I thought it was working.  We actually had two weeks where my son had no tics. We had not experienced this since the tics had started.  Unfortunately this happened just before another school year started.  Once school started the tics came back with full force.

We continued to work with the neuropsychologist.  She was focusing on:

    • Identifying triggers for tics
    • Identifying tools to use when having tics
    • Tools to prevent bouts of tics
    • Addressing his anxiety
    • Addressing his sensory food issues
It is now four years since the tics started and we really haven’t found any answers.  I believe my son has learned how to identify some of the triggers and tries to minimize their effect.  He has also started eating different foods, which is a huge accomplishment.  I think he would be able to deal with his tics better if he didn’t have to deal with other people and their reaction to the tics, especially in the school setting. School is stressful enough for him, but when he has peers making fun of him, or dealing with adults who are ignorant about Tourette Syndrome, it makes it even more stressful.  This last school year my son missed a lot of school.  The combination of his tics, diabetes and epilepsy was a lose, lose situation.  Due to all of these absences I went on a search for a new specialist for the Tourette Syndrome.  Meanwhile the neuropsychologist suggested that we try medications again and was recommending an anxiety medication, even though we tried this in the past with no positive effect.

Meanwhile the school is pressing me to identify something which would change the circumstances at school.  They acted like I had a miracle cure up my sleeve and refused to recognize they were the main reason his TS was worse.  So, against my judgement, I put my son on the anxiety medication.  It took me about a week to get a hold of my senses and I took him off again.  There was also a period of time where the school nurse was pushing me to get some type of medication that would take the edge off these long bouts of tics that my son had.  She kept sending me names of neurologists, none with any specific expertise, just names.  She acted as if we hadn’t already seen doctor after doctor.  I also have learned that you just don’t pick names out of a hat.  Finding the right doctor is not easy.  Once again, against my instinct, we went to a pediatrician and she prescribed Valium.  I came to my senses pretty quickly on this one and never used them.

As a note of explanation, I am not against these medications.  There are times and people where these medications are not only effective, but necessary.  In regard to my son, in the last nine years he has been on numerous medications for his epilepsy.  Scary medications.  From this experience, I learned that getting the right medication is pretty much a trial and error type of process.  My son was already on a medication for his epilepsy that is also used for anxiety.  It was a benzodiazepine, which works by decreasing abnormal electrical activity in the brain.  Since there were questions about what these events were, I just didn’t want to haphazardly add another anxiety medication on top of the medications he was already on.

It is so frustrating to have an educational system trying to push you toward a medical solution that may not be the best for your child.  I finally wrote a letter to the superintendent, principal, nurse and his teacher that we needed to find a different approach here.  Drugging my son was not the answer.  There are some things we need to accept.  The TS is here and we need to deal with it as it is.  I don’t have any miracles to make it go away.  In addition, it is a fact that with all of the health problems my son has he is going to miss school.  We needed to expect it and plan for it.  It was my intent to push them into a new approach in educating my son, perhaps even supplying a tutor to keep him on track with his class.  Guess what.  No one responded to my letter.  Finally at the end of the school year his teacher emailed and said she would set up a meeting before the end of the year.  I didn’t here from her again.  At that point I just wanted to get through the end of school.  I would deal with the school before school started again.

Earlier in the year I had started looking for a new doctor that may have some expertise and offer a different direction to deal with the tics.  I also wanted someone who would look at the whole picture.  A doctor  said to me when my son was diagnosed with Type 1 Diabetes that it seems to be all related and is probably an autoimmune problem.  Keep in mind my son was dealing with epilepsy, Tourette Syndrome, (possibly nonepileptic seizures), Diabetes, an anxiety disorder, a little OCD, a little Aspergers, a little ADD,  and learning disabilities.  That is quite a bit for a 12-year-old boy.  I am very proud of him for dealing with it all.  I am not so sure I could do the same.  Up to now each of these medical issues were being addressed independently.

Anyway, I went on a hunt.  Thank goodness for the internet.  I noticed that if we were located on the east coast there would be more of a selection of doctors.  Even though we were near a large city, Minneapolis – St. Paul, there still did not seem to be any experts.  So I just started calling hospitals and clinics and requested recommendations.  Initially they weren’t much help.  After reaching out to 30 or more medical centers I called the University of Minnesota Hospital, and they suggested a doctor.  After contacting his office, I found that he had a waiting list and it would be five months before we could see him.  That in itself meant something to me.  It was obvious that people were seeing him.  It was either because there just weren’t that many specialists or he was really good.  I decided we would wait and we would find out.

Finally the five months passed by and it was the day for our appointment.

To be continued . . .

May 15th through June 15th is Tourette Syndrome Awareness month. 

To get a little insight about Tourette Syndrome take a look at the video at @Random.  @Random was created to dispel myths and misconceptions surrounding Tourette Syndrome . Working closely with the Tourette Syndrome Foundation of Canada (TSFC) and Saatchi & Saatchi Canada, dozens of filmmakers, production companies, and people living with TS have joined together to portray Tourette Syndrome as it really is.  The video changes each time you watch it.  It is a wonderful idea and a great way to raise awareness about Tourette Syndrome.

Many people contributed their videos to help @RANDOM tell the message about Tourette Syndrome.