What is Tourette’s syndrome?
Tourette’s syndrome is a brain-based neurobehavioral movement disorder.

Diagnostic Criteria for 307.23
Tourette's Syndrome

General Facts About Tourette’s syndrome

Categories of Tics

Phenomenology of Tics

• Involuntary
• Waxing and waning in frequency, intensity, and distribution
• May be volitionally suppressed (temporarily) through intense mental effort
• Exacerbate with stress, excitement, fatigue, boredom, and heat exposure
• May be suppressed during mental or physical tasks requiring intense concentration
• Are characterized by suggestibility
  

Behavioral Difficulties Associated with Tourette’s syndrome

• Obsessive Compulsive Disorder (OCD)
• Attention Deficit Hyperactivity Disorder
  (AD/HD)
• Impulsivity – disinhibition of thoughts and actions
• Learning differences
• Emotional instability
  - Irritability
  - Oppositional behavior
  - Anger outbursts
  - Aggressive behavior
• Problems with Executive Function
• Anxiety, phobias, panic, and depression
• Inappropriate sexual behavior and mental coprolalia
• Social adjustment problems, worse in teen years
• Sleep disorders and enuresis (bed-wetting)
  

Educational Problems

• Areas of difficulty:
  - Spelling
  - Writing
  - Reading
  - Math
  - Long classroom / homework assignments
  - Timed Tests
  - Social skills
  - Executive Function
• Additional Problems:
  Visual-motor integration difficulties
  - Copying
  - Note taking
  - Difficulty demonstrating knowledge in writing
  Graphomotor dysfunction
  - Handwriting
  - Holding pencil

Obsessive-Compulsive Behavior (OCD)

• Obsessions
  Intrusive and recurring thoughts and images which are disturbing
  Cannot be suppressed and disrupt functioning
• Compulsions
  Irresistible urges or impulses to repeat ritualistic acts over and over
• Shares chronic waxing and waning course of T.S. and is exacerbated by stress
• Auditory and short term memory deficit / mental tics
• Rewriting until “perfect”
• Counting words or lines on page prior to reading
• Checking things over and over
• Constant doubt and worrying
• Germ obsession
• Ritualistic behavior
  

Educational Problems - ADD / ADHD

• Inability to remain seated
• Blurting answers when not called
• Restlessness
• Disorganization
• Getting started on a task
• Regulating the intensity of their emotional response
• Transitions
• Tics
  - Loud disturbing tics or distracting movements
  - Hand, arm or body movements when writing
  - Neck, facial or other body movements when reading
• Executive Function
  Difficulty with:
  - Goal formation
  - Planning
  - Enaction
  - Evaluation
  - Self-regulation
  
• Sensory and Tactile Defensiveness
  Poor auditory discrimination
  Sensitivity to noises, light, touch, and / or odors
• Social
  - Difficulty in daily life
  - Peer rejections – difficulty making friends and maintaining relationships
  - Loss of positive body image – embarrassing tics
  - Poor self-esteem
  - Difficulty with group activities and with team sports
  - Teacher intolerance
  - Misreading social cues
  - Socially clueless
  - Maturation below age level
  - Teased, mocked, bullied and shunned
• Medication Effects
  Drowsiness
  Fatigue
  Hyperactivity
  Depression
  Weight gain
  Heat intolerance
  Loss of memory (short and long term)
  Irritability
  Dry mouth
  Tardive dyskinesia
  Absence of tics mistaken for resolution of Tourette’s syndrome

Four Point Treatment Modality of Tourette’s syndrome

• Pharmacological Interventions
  
• Psychotherapy / Counseling
  
• Common Sense
  
• Adaptation of School Environment
  
• Pharmacologic Interventions

Pharmacologic Interventions

• Since pathophysiology is unknown, pharmacologic treatment is purely symptomatic.
  
• Therapeutic doses change as symptoms wax and wane.
  
• No magic formula. Based on trial and error.
  
• The goal is to achieve a tolerable suppression of the symptoms.
  
• May be on multiple medications, each targeting a specific symptom.
  
  

  Tics (motor and phonic)		Orap (Pimozide) Prolixin (Fluphenazide) Haldol (Haloperidol) Risperdal (Risperidone) Zyprexa (Olanzapine) Abilify (Aripiprazole) Topamax (Topiramate) Botulinum toxin injections for focal tics Tetrabenazine (Nitoman)
  AD/HD		Ritalin (Methylphenidate) Dexedrine (Dextroamphetamine) Metadate CD (Methylphenidate HCl) Adderall Concerta (Methlyphenidate HC) Focalin XR (Dexmethlyphenidate) Strattera Cylert (Pemoline) Catapres (Clonidine) Controlled-delivery methylphenidate (Metadate CD), Methylphenidate oral solutaion or chewable tablets (Methylin), Transdermal methyphenidate, once-a-day patch (Daytrana)
  OCD		Celexa (Citalopram) Effexor (Venlafaxine) Lexapro (Escitalopramine) Luvox (Fluvoxamine Maleate) Paxil (Paroxetine) Prozac (Fluoxetine) Tofranil (Imipramine) Anafranil (Clomipramine) Zoloft (Sertraline hydrochloride) Risperdal (Risperidone)
  Aggressive, Oppositional or Explosive Behaviors		Catapres (Clonidine) Tegretol (Carbamazepine) Depakote (Divalproex Sodium) Risperdal (Risperidone)
  Depression		Prozac (Fluoxetine) Paxil (Paroxetine hydrochloride) Seroquel Tofranil (Imipramine) Anafranil (Clomipramine) Eskalith (Lithium carbonate) Zoloft (Sertraline hydrochloride) Celexa, Lexapro, Effexor
  Anxiety Disorders		Buspar (Buspirone hydrochloride) Klonopin (Clonazepam) Any of the SSRIs or SNRIs (Prozac, Paxil, Zoloft, Celexa, Lexapro, Effexor)

  
  

Psychotherapy / Counseling

• Will not remediate behavioral problems associated with Tourette’s Syndrome
• Will provide support
• Will help increase self-esteem
• Will help family cope

Common Sense Approach

• Diet
  - Well-balanced diet with emphasis on high protein, high nutrient values
  - Lower consumption of foods with high sugar content (simple carbohydrates)
  - Increase consumption of whole grains and vegetables (complex carbohydrates)
  - Avoid caffeine and foods with additives or dyes
  - Multi vitamin and fish oil (Omega 3) could be helpful
  
• Exercise
  - Will increase endorphins and sense of well-being
  - Counterbalances possible weight gain due to medications
  
• Rest
  - Proper rest is critical

Other Psychological Approaches

• Cognitive-behavioral therapy (for OCD)
  - Contra-indicated when accompanied by AD/HD
• Habit reversal therapy (for OCD)
  - Has historically been unsuccessful
  - HRT substitutes a competing action (e.g., looking at a watch) for a disabling
  or socially embarrassing tic
  
• Bio-feedback
  - May help promote relaxation
  - May decrease anxiety
  - Does not directly affect tics

Alternative Therapies

• Many alternative therapies available
• Most claims are unproven scientifically and promise remarkable results
• Most successful include:
  Diet and vitamin supplements, often mega-dosed and based upon specifically determined allergies, are available through certified medical professionals.

Adaptation of School Environment

• Classify Tourette student as Other Health Impaired (OHI) / Special Education or
  Section 504 / Regular Education
  
• Individual Education Plan (IEP):
  - Each Tourette child is unique because of diverse range of symptoms.
  - Assessed for associated learning disabilities (LD)
  - Use of ancillary professional services:
  - School counselor / psychologist, OT, PT, adaptive PE
  - Placed in regular classroom with modifications as necessary
  
• Common Adaptations:
  - Decrease all paper and pencil tasks
  - Preferential seating
  - Copy of notes provided by teacher / NCR paper
  - Shorten writing assignments or oral assignments
  - Use of scribe
  - Use of graph paper
  - Use tape recorders, calculators, and computers when necessary
  - Oral testing
  - No timed testing
  - Frequent breaks
  - Extend time to complete assignments
  - Safe place to discharge tics or emotions
  - Allow frequent movement in classroom
  - Special homework plan:
  - Bi-weekly communication via email generated by parent (Tu/Thur)
  - Trapper Keeper or special homework folder
  - Weekly assignment sheet of homework and test dates
  - Set of textbooks to keep at home
  - Education of peers and school staff

Specific Classroom Interventions

• Classroom Environment
  1) Preferential seating
  
  2) Provide student with an “office” desk when they require privacy to do their independent work. Do not remove the student’s group seat. Allow two desks for child.
  
  3) Keep an extra supply of pencils, paper, etc, for student.
  
  4) Allow student frequent breaks from classroom and / or frequent movement within classroom to release tic and excess energy (drinks, restroom, errand runner, etc.).
  
  5) Eliminate all unnecessary materials from student desk to reduce unwanted distractions.
  
  6) Provide a quiet / safe place for student when tics are severe.
  
  7) Use checklists to help students get organized.
  
  8) Have agreed upon cue for student to leave classroom.
  
  
• Time Management / Transitions
  1) Alert with several reminders, several minutes apart, before changing from one activity to another (classroom changes, lesson changes, recess, lunch, etc.).
  
  2) Provide additional time to complete a task. Allow extra time to turn in homework, without penalties.
  
  3) Reduce amount of work load (even #s, half of page).
  
  4) Do not modify essential elements of curriculum unless necessary.
  
  5) Space short work periods with breaks.
  
  6) Alternate quiet and active times, allowing for transition time.
  
  7) Since many children with TS and OCD expend a large amount of energy suppressing tics at school, a reduction in the amount of homework may be necessary by as much as 50%.
  
  
• Material Presentation
  1) Break assignments into segments or shorter tasks.
  
  2) Present written material ½ to 1 page at a time and decrease crowding.
  
  3) Introduce one concept at a time with as few words as possibles.
  
  4) Give only 1-2 step directions; require students to repeat directions to ensure clarity.
  
  5) Break long term assignments into small sequential steps, with daily monitoring and frequent grading.
  
  6) Provide incentives for beginning and completing material.
  
  7) Allow student to utilize computer, tape recorder, and / or calculator.
  
  8) Allow peer to provide class notes for student.
  
  9) Teacher or peer may copy down daily homework assignments or check for accuracy.
  
  
• Organization
  1) Weekly assignment sheet of homework and test dates, checked for accuracy or written down by teacher / corroborated by parent.
  
  2) Special “Trapper Keeper” or homework folder.
  
  3) Excellent communication between home and school via email (preferred method), notes, or telephone.
  
  4) Extra set of textbooks to keep at home.
  
  
• Grading and Tests
  1) Divide tests into smaller sections.
  
  2) Grade spelling separately from content.
  
  3) Provide additional time to complete test.
  
  4) Avoid all timed tests.
  
  5) Provide a quiet setting for test taking.
  
  6) Provide movement and breaks during tests.
  
  7) Permit student to rework missed problems for better grade.
  
  8) Oral testing, if necessary.
  
  
• Handwriting
  1) Decrease all paper and pencil tasks (both in class and homework).
  
  2) Provide a computer.
  
  3) Use worksheets that require minimal writing / fill in the blank.
  
  4) Provide a designated note taker, NCR paper, a copy of another student’s notes, or teacher’s notes (do not expect student with few or no friends to make own arrangements).
  
  5) Avoid pressure of speed and accuracy.
  
  6) Allow student to type or record responses.
  
  7) Grade on content, not handwriting.
  
  8) Allow parent to scribe for student at home.
  
  9) Allow student to select method writing which is most comfortable (cursive or manuscript).
  
  10) Consider providing paper with raised lines to assist with visual / spatial deficits.
  
  
• Reading
  1) Allow student to sit in comfortable position.
  
  2) Allow student to use marker to follow along.
  
  3) Allow recorded textbooks or reader.
  
  4) Have student read comprehension questions before reading passage.
  
  5) Break reading assignments into smaller segments.
  
  6) Allow parent to read to student at home.
  
  7) Encourage student to use headphones to block out auditory distractions.
  
  8) Allow student to read aloud to himself, to another student, or into a tape recorder.
  
  
• Behavior
  1) Ignore behaviors that are not seriously disruptive.
  
  2) Develop interventions for behaviors which are annoying but not deliberate (e.g., place a piece of foam rubber on desk for students who tap pencils or provide them with shorter pencils that they may tap into their hand).
  
  3) Develop a “system” or code word to let a student know when behavior is not appropriate
  
  4) Arrange for student to voluntarily leave classroom and report to designated “safe place” when under high stress.
  
  5) Develop behavior intervention plan in stepwise fashion.

Prognosis

• Symptoms generally worsen during puberty.
• After puberty (approximately 17 years of age), almost all will have a marked decrease in the severity of symptoms.
• Normal life span
• Most will lead productive lives in adulthood.
• 10% or less will be functionally disabled.
• Many will reach high levels of achievement.

TS Kids are:

A Final Thought:

Sue Conners, a former teacher who herself has Tourette’s syndrome and who is an advocate for the national Tourette Syndrome Association, said this about children with Tourette’s syndrome –

“Tourette’s syndrome is not a fatal disease, but children die slowly from it each day. Their spirit, their potential, and their self esteem are affected.
TS is not responsible – ignorance is."