Posts Tagged ‘tourette’

If you have followed some of my earlier posts, my son and I have started on a new adventure in treating his Tourette Syndrome.  We recently have been seeing a doctor who specializing in hypnosis.  Since I was researching this technique, I thought I would share what I have found.

Tourette Syndrome is a neurological disorder which is defined by multiple motor and vocal tics lasting for more than one year.  The disorder was named for a French neuropsychiatrist who successfully assessed the disorder in the late 1800’s.  Symptoms change periodically in number, frequency, type and severity–even disappearing for weeks or months at a time No definite cause has yet been established, but considerable evidence points to abnormal metabolism of at least one brain chemical called dopamine.   Estimates indicate that some 200,000 people in the United States are known to have the disorder.

Associated conditions can include attention 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.  Tourette Syndrome and other tic disorders occur in all ethnic groups.  Males are affected 3 to 4 times more often than females.

While there is no cure, medications are available to help control its symptoms.  They include atypical neuroleptics, neuroleptics, anti-hyperactive drugs and anti-depressants. Unfortunately, there is no one medication that is helpful to all people with TS, nor does any medication completely eliminate symptoms.  In addition, all medications have side effects. Most neuroleptic side effects can be managed by initiating treatment slowly and reducing the dose when side effects occur. The most common side effects of neuroleptics include sedation, weight gain, and cognitive dulling.  Neurological side effects such as tremor, dystonic reactions (twisting movements or postures), parkinsonian-like symptoms, and other dyskinetic (involuntary) movements are less common and are readily managed with dose reduction. Discontinuing neuroleptics after long-term use must be done slowly to avoid rebound increases in tics and withdrawal dyskinesias. One form of withdrawal dyskinesia called tardive dyskinesia is a movement disorder distinct from TS that may result from the chronic use of neuroleptics. The risk of this side effect can be reduced by using lower doses of neuroleptics for shorter periods of time.

There are also non-drug therapies, such as hypnosis.  Stressful situations can make symptoms of Tourette Syndrome worsen. Tension and anxiety can also be attributed to worsening the symptoms. Hypnotherapy has been found to improve the symptoms of Tourette Syndrome. Hypnosis is a relaxed state of consciousness. This state allows people to be more open to suggestions. When these suggestions deal directly with their symptoms and anxiety, they are able to relax and make these suggestions a part of their life, thus reducing their symptoms. After a few sessions, people with Tourette Syndrome can dramatically improve their overall lifestyle.

During deep hypnosis the metabolism, breathing and heartbeat slow down, and the brain produces alpha-waves, which indicate deep relaxation and are also induced by meditation.  It is a state that most of us naturally drift in and out of during the course of a day: when we become engrossed in a task or a film, when we drive home on ‘automatic pilot’, when daydreaming.

Hypnotherapy itself can take several different forms. The most usual form is ‘suggestion hypnotherapy’, which aims to break patterns of thought and behaviour by means of positive suggestions and guided imagery.

A case study was conducted involving an adolescent male with Tourette Syndrome. He was referred to a hypnotherapist from his physician. The male had a total of 9 hypnosis sessions over a 6-month time period. The model used involved a 4-step treatment process including progressive relaxation, finger-tip temperature feedback using a biotic finger band,  and guided imagery. Immediately following treatment and at the 6-month follow-up, he reported minimal to non-existent symptoms. The hypnosis sessions had helped him reduce stress that triggered the symptoms and it helped him regain control of Tourette Syndrome.

Progressive relaxation is a method of deep muscle relaxation based on the premise that muscle tension is the body’s physiological response to anxiety-provoking thoughts and that muscle relaxation blocks anxiety.

Finger-tip temperature using a biotic finger band is a primary tool for general relaxation training.  The temperature feedback instrument shows when blood flow is increasing by showing an increase in finger temperature.  Because blood flow in the hands responds to stress and relaxation the client learns to relax by watching the rise and the fall of temperature.

Guided imagery is a gentle but powerful technique that focuses and directs the imagination. Imagery involves all of the senses, and almost anyone can do this. Neither is it strictly a “mental” activity it involves the whole body, the emotions and all the senses, and it is precisely this body-based focus that makes for its powerful impact.  Even though it can be considered a kind of meditation, it is easier for most westerners to use than traditional meditation, as it requires less time and discipline to develop a high level of skill. This is because it seduces the mind with appealing sensory images that have their own natural pull. And because it results in a kind of natural trance state, it can be considered a form of hypnosis as well.  Guided imagery works because of 3 very simple, common-sense principles:

  • To the body, images created in the mind can be almost as real as actual, external events.
  • In the altered state, we’re capable of more rapid and intense healing, growth, learning and performance.
  • When we have a sense of being in control, that, in and of itself, can help us to feel better and do better.

Research and studies have shown that hypnosis, relaxation techniques such as bio feedback, and guided imagery are helpful in reducing the symptoms of Tourette Syndrome. It can enable Tourette Syndrome sufferers to lead a more normal lifestyle with fewer tics and interruptions. Hypnosis also gives them more control.

Information provided by:

Tourette Syndrome Association http://www.tsa-usa.org/index.html

Learn more:http://www.naturalnews.com/027559_Tourette_syndrome_hypnosis.html#ixzz1VgpYghDf

What is guided self imagery?  http://bit.ly/nqxN1g

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.

My family has been greatly affected by Tourette Syndrome.  My son has tourette syndrome and every day that he has tics is a struggle.  Dealing with the disorder is one thing that is hard.  Even more complicated is explaining his behaviour to those who may have seen him have a bout of tics.  The stress all of this while he is going to school and trying to have a “normal” life is exhausting.

On a daily basis I scour the internet for research news or new treatment methods for Tourette Syndrome.  I do this for a number of illnesses, and it has become apparent to me, based on the insignificant amount of research activity, that more people need to become familiar with the disorder.  Once their awareness is raised, hopefully they will join the cause and push for more research to find a cure.  May 15th – June 15th is Tourette Syndrome Awareness Month.  Watch for updates on this blog during the awareness month.  Take a moment and join the cause.

Take a look at the facts about Tourette Syndrome:

  • Boys and men show the symptoms of TS more frequently than girls and women. The ratio is about 4:1.   
  • There can be other conditions associated with TS, in particular OCD, ADHD, and Sensory Processing Disorder   
  • TS is a tic disorder. It is a neurological condition. It is not emotional in origin but it may have psychological consequences and effects.   
  • A tic is an involuntary movement (motor tic) or sound (vocal tic). Tics can be ‘invisible’ – intrusive thoughts or compulsive behaviours.   
  • Movements may vary from minor (eye blinking) to severe (complex movements of the whole body).   
  • Sounds may vary, from throat clearing to whole phrases.   
  • Phrases can be repeated, from whole words to parts of sentences (Echolalia)   
  • Although the movements are involuntary, the person may be able to control them at times, although this takes a lot of concentration.   
  • People can ‘suppress’ the tics for a period of time, but they will always need to tic when they feel safe to do so.   
  • A child may control or suppress tics at school; however they may then tic constantly for a while as soon as they get home.    
  • A teacher wont realise a child has tics if they ‘suppress’, but it also means that the child will not be concentrating on school work.   
  • A child may only release the tics in the privacy of their own room, so that others, even parents, aren’t aware of their existence.   
  • Early multi-diagnosis, positive intervention, medication/alternative therapies may help someone living with TS.   
  • Someone living with TS – what may help – understanding from family, friends and public.   
  • Someone living with TS – what may help – understanding from Health, Education, Social Work, Employer.   
  • Someone living with TS – what may help – regular breaks/support for parents/care providers/siblings.   
  • Someone living with TS – what may help – contact with others through Tourette Sydrome Association  
  • TS, which was once thought to be extremely rare, is in fact one of the most common genetic diseases affecting man and many people have it.   
  • Tics range from mild to severe and can change over time, ‘wax and wane’ so they don’t stay the same for life.   
  • People with TS are often of high intelligence, and are often creative or artistic.   
  • TS is genetic and can run in families, which may also include someone with Asperger’s or OCD, ADHD or similar conditions.   
  • Teachers can assist to make a positive learning experience for a student with TS, by creating a supportive environment in the classroom   
  • Awareness raising should include the personal experience of those with TS, which is helpful in explaining the varied aspects of the condition to others and in gaining empathy.    
  • Use of methods such as ‘Time Out’ and working with the student on their individual learning plans.   
  • The use of management tools, can assist the teacher and the student in smoothing the way for productive learning relationships.   
  •  More understanding, in that the condition has many facets, should be sought and teachers be made aware  of the particular traits and challenges facing the individuals in their care.

Information from the Tourette Syndrome Association.