Tourette Syndrome

Definitions

• Tourette Syndrome
• Obsessive-Compulsive Disorder

• Medical Treatments of Tourette Syndrome, and Related Topics

Academic/Student Information

• Modifications for Students with Tourette Syndrome, Attention-Deficit Disorder and Obsessive-Compulsive Disorder

Other Internet Sites

• National Tourette Syndrome Association, Inc.
• Tourette Syndrome Association of Southern California
• The University of Michigan Tourette Syndrome Home Page
• Massachusetts Chapter of the Tourette Syndrome Association
• Yale Child Study Center and TS/OCD Clinic

Tourette Syndrome

Tourette Syndrome (TS) is a neurological disorder characterized by tics - "involuntary," rapid, sudden movements that occur repeatedly in the same way. To receive a diagnosis of TS a person must have both multiple motor and one or more vocal tics, not necessarily simultaneously, throughout a span of more than one year. The tics may occur many times a day (usually in bouts) nearly every day or intermittently. Tics periodically change in the number, frequency, type and location and wax and wane in their severity. Symptoms can sometimes disappear for weeks or months at a time. While most persons with TS have some control over their symptoms from seconds to hours at a time, suppressing them may merely postpone more severe outbursts. Tics are experienced as irresistible and (as the urge to sneeze) eventually must be expressed. Tics increase as a result of tension or stress and decrease with relaxation or concentration on an absorbing task.

Other symptoms include obsessions, compulsions, impulsions, and mood lability.

Co-morbid syndromes include Attention-deficit Hyperactivity Disorder, Anxiety Disorders including phobias, Separation Anxiety Disorder, Panic Disorder, and Mood Disorder including Unipolar (depression) and Bipolar (Manic Depression) Affective Disorder.

Choose from the following articles:

• Quick Facts About Tourette Syndrome
• Motor Tics
• Vocal Tics
• Associated Symptoms (coprolalia, echolalia, etc.)
• Attention-Deficit/Hyperactivity Disorder (ADHD)
• Behavioral Concerns
• Academic Problems due to Tourette Syndrome Symptoms
• Definitions of Abnormal Movements and Psychological Terms

Quick Facts About Tourette Syndrome (TS)

• Tic Disorders appear to be on a spectrum:
  Transient Tic Disorder - Chronic Motor (or Chronic Vocal) Tic Disorder - Tourette Syndrome - Obsessive Compulsive Disorder
• Prevalence for TS may be 0.1 to 1.0% of the population; for tics, around 20% of the population may have a tic at some time in life
• the male:female ratio for TS is 3-4:1 (although some of this may be accounted for by referral bias)
• Diagnostic criteria for TS requires both motor and vocal tics, for over one year's duration, with a waxing and waning course (changes in tic severity and location)
• Coprolalia (profanity), the most spectacular of the symptoms, is seen in only a minority (from 15-30%) of those with TS
• Onset of TS is always before age 15; mean age of onset of motor tics is 7; mean onset for vocal tics is 9

Motor Tics

Simple Motor Tics:

• eye blinking, eye rolling, squinting, head jerking, facial grimacing, nose-twitching
• lip smacking, tongue thrusting, mouth opening, leg jerking, arm flexing or flapping and many others

• hitting self or others, jumping, touching self or others, smelling hands or objects, clapping, pinching
• touching objects (haphemania), stooping, hopping, kicking, throwing
• squating, skipping, somersaulting, stepping backwards, deep knee bending
• foot tapping, foot shaking, foot dragging, chewing on clothes, scratching, kissing self or others
• pulling at clothes, or about any other combination of movements done repeatedly

Vocal Tics

Simple Vocal Tics:

• Throat clearing, grunts, sniffs, snorts, squeaking, coughs, humming, screams
• spitting, puffing, sucking inspirations, whistling, honking, stammering or stuttering
• hissing, laughing, shouts, barking, moaning, guttural sounds
• noisy breathing, gasping, gurgling, squealing, clicking or clacking, hiccups
• "tsk" & "pft" noises

• Any understandable words or phrases (may include echoing)

Associated Symptoms

• Echolalia (repeating of phrases), immediate or delayed
• Palallia (repeating words or syllables)
• Coprolalia (speaking obscenities or socially taboo phrases)
• Copropraxia (obscene gestures)
• Stuttering
• Apraxia (inability to carry out an action, such as reading, without neurological cause)

Attention-Deficit/Hyperactivity Disorder (ADHD)

Hyperactivity with or without Attention Deficit disorder (ADHD) occurs in many persons with TS, approximately 60%. Children may show signs of hyperactivity before TS symptoms appear. Adults may exhibit signs of ADHD such as overly impulsive behavior and concentration difficulties.

The cardinal features of ADHD include: poor concentration, impulsivity, and hyperactivity. Subtypes include: Predominately Inattentive Type, and the Predominately Hyperactive-Impulsive Type.

1. Often fidgets with hands or feet or squirms in seat
2. Has difficulty remaining seated when required to do so
3. Is easily distracted
4. Has difficulty waiting turn in games or group activities
5. Often blurts out answers to questions before they have been completed
6. Has difficulty following through on instructions from others
7. Has difficulty sustaining attention in tasks or play activities
8. Often shifts from one uncompleted activity to another

Behavioral Concerns

• Quick temper
• Overaction
• Mood changes
• Difficulties with impulse control
• Oppositional behavior
• Defiant behavior

Academic Problems due to Tourette Syndrome Symptoms

• Has difficulty organizing work
• Has difficulty playing quietly
• Often talks excessively
• Often interrupts or intrudes on others
• Often does not seem to listen to what is being said
• Often loses things necessary for activities at school or at home
• Often engages in physically dangerous activities without considering possible consequences

Movement and Psychological Definitions:

Tics: rapid, repetitive, stereotyped motor movements or vocalizations. Tics run the spectrum from involuntary to more compulsive-like (voluntary); tics can be suppressed, usually abate during sleep. A division occurs into simple and complex tics. There also seem to be "sensory tics."
Examples:

• Simple motor tics: eye blinking, grimacing, puckering
• Complex motor tics: touching, shouting, combinations of movements
• Simple vocal tics: barks, coughs, grunts, squeaks
• Complex vocal tics: words and phrases, coprolalia

• contamination - obsessions about germs, chemicals, and other contaminants;
• disease - obsessions about a skin disorder or AIDS
• sexual - fears of aggressive sexual impulses towards others or self
• harm - obsessions about harming self, or others (typically children or spouse)
• doubting reality - fears of tainted perceptions that may lead to disaster
• or death, doubting one locked the doors or turned off the stove burners, or
• fearful one hit a pedestrian
• "just right" obsessions.

• skin picking/hair pulling - response to itching or skin obsession;
• hand washing, wearing gloves - responses to contamination obsessions;
• touching self, others, or objects - haphemania;
• checking locks - response to "doubting" obsessions;
• hoarding objects
• perfectionistic obsessions.

• Sydenham's Chorea;
• Huntington's Chorea

• Huntington's Disease;
• Wilson's Disease (hepatocerebral degeneration).

• pill rolling tremor at rest (Parkinson's Disease);
• essential tremor; (also known as familial tremor)

• hemiballism (due to countra-lateral subthalamic damage)

• torsion dystonia

• myoclonic jerks during sleep; (caused by tricylic antidepressants)

• Tardive Dyskinesia: oral-boccofacial movements seen with neuroleptic use (Haldol); can be tic-like, or produce tremors;
• Acute dyskinesias;
• Extrapyramidal movements such as torticollus, oculo-gyric crisis, Parkinsonian movements, akathesia (restlessness)

• head banging (Autism, Tourette's, Mental Retardation);
• skin picking (OCD);
• self-inflicted infections (Personality Disorders, Factitious Disorder - Munchausen's - and Munchausen's by Proxy, malingering)

Obsessive-Compulsive Disorder

Obsessions consist of repetitive unwanted or bothersome thoughts. Compulsive and Ritualistic Behaviors are when the person feels that something must be done over and over and/or in a certain way. Research shows 50 to 60% of persons with TS also have Obsessive-Compulsive Disorder (OCD).

Obsessions

• Being concerned with symmetry, exactness, cleanliness, order
• Needing to know or remember things
• Overfocusing on minute details
• Having to have "JUST RIGHT" feeling
• Overfocusing on one idea or action
• Overfocusing on moral issues (right/wrong, fairness)
• Focusing on specific numbers
• Being concerned with colors of special significance
• Needing to experience sensations (skin cut or burned)
• Having a preoccupation with knives, scissors, blood
• Worrying about harming self or others
• Worrying that something terrible might happen (fire, death)
• Being concerned about dirt or germs
• Thinking about hoarding or collecting
• Thinking about food and eating
• Thinking about forbidden behaviors
• Engaging in mental coprolalia (sexual thoughts, images, impulses)
• Having aggressive thoughts, images, impulses

Compulsions

• Adjusting/readjusting clothes to feel just right (socks, sleeves)
• Evening things up (touching with one hand then the other)
• Overfocusing on one idea or action
• Counting or grouping objects
• Counting objects over and over again
• Excessively ordering and arranging objects
• Touching objects an exact number of times
• Constantly fiddling with objects or clothes
• Checking and rechecking (doors, locks, windows)
• Repeating actions (in/out door, up/down from chair)
• Needing to say or do what told not to say or do
• Needing to finish verbalizations if interrupted
• Needing to start over if interrupted
• Repeatedly asking the same question
• Having to respond to verbalization even when unnecessary
• Persevering on a task
• Not being able to change to a new task or activity
• Echopraxia (repeating the actions of others)
• Copropraxia (making obscene gestures)
• Repeating sounds, words, numbers, music to oneself
• Playing computer video games over and over in mind
• Pallilalia (repeating aloud own words)
• Echolalia (repeating others' words)
• Coprolalia (uttering obscene words)
• Touching objects, others, self, wounds
• Sexually touching self
• Sexually touching others (breasts, buttocks, genitals)
• Picking skin/sores
• Cutting or burning skin
• Sucking thumb
• Cracking knuckles
• Vomiting
• Sniffing or smelling hands or objects
• Licking or biting others
• Excessive handwashing, bathing, cleaning
• Erasing repeatedly
• Writing and rewriting until paper looks perfect
• Stealing
• Biting nails

Medical Treatments of Tourette Syndrome, and Related Topics

Abbreviations/Conventions

• TS = Tourette Syndrome
• OCD = Obsessive-Compulsive Disorder
• ADHD = Attention-deficit Hyperactivity Disorder
• LD = learning disability
• EKG = electrocardiogram
• EEG = electroencephalogram
• EPS = extrapyramidal side effects
• DA = dopamine; 5HT = serotonin; NE = norepinephrine
• Medication name with CAPITAL = name brand; lower case = generic name

Medical Treatment of Tics and Movements in TS

1. Neuroleptics (Haldol, Orap, Risperdal)
2. Clonidine
3. Serotonin Drugs (Prozac-like); Klonopin (benzodiazapine with 5HT action)

Medical Treatment of OCD in TS

1. Serotonin Reuptake Inhibitors (SSRI): Prozac, Luvox, Paxil, Zoloft
2. Anafranil (more side-effects)
3. Augment with dopamine agents (Orap) or Klonopin

Medical Treatment of Attention Deficit (ADHD) in TS

1. Ritalin
2. Tenex, clonidine
3. Tricyclics: imipramine, desipramine, Anafranil (clomimpramine)

Other Medication Issues

• Sensory symptoms
• Biochemistry of TS
• Environmental factors
• Alerts for medication side effects at school
• Goals of treatment

Medications for Tic Treatment

• Neuroleptics (Haldol-like drugs)
  • haloperidol (Haldol), 0.5 mg - 5.0 mg/day
  • pimozide (Orap), 0.5 mg - 10 mg/day
  • risperidone (Risperdal), 1.0 - 6.0 mg/day
  • neuroleptic medication side effects: sedation; weight gain; EPS: muscle spasms, tremors, restlessness; risk of tardive dyskinesia; skin sensitivity; eyesight changes; anxiety; monitor liver, EKG (esp. Orap), EEG

• Alpha-adrenergic drugs
  • gaunfacine (Tenex), 0.5 - 2.0 mg/day
  • clonidine (Catepres), 0.05 - 0.2 mg/day
  • Alpha-adrenergic medication side effects: lethargy; drowsiness; deceased blood pressure; EKG changes

Medications for obsessive-compulsive (OCD) symptoms in TS

• Serotonin Reuptake Inhibitors (SRIs, SSRIs)
  • Prozac, Zoloft, Paxil, Luvox
  • Very good for OCD & depression
  • SSRI side effects: gastrointestinal symptoms; restlessness; insomnia; genital-urinary side effects

• Anafranil (clomipramine, a tricyclic compound)
  • may improve obsessive-compulsive components of TS
  • (also anti-depressant & anti-anxiety medication)
  • side effects: dry mouth, constipation, urinary problems; skin changes; lower blood pressure; monitor EKG, EEG, and liver

Medications for Attention Deficit

• Ritalin
  • May not increase tics if used in reasonable dosages; may decrease vocal tics
  • Improve concentration, impulsivity, hyperactivity
  • Ritalin side effects: anorexia, insomnia, irritability; gastro-intestinal upset

• Tricyclics (Anafranil, imipramine etc.)
  • Improve attention, impulsivity, hyperactivity
  • Also anti-depressant, anti-anxiety
  • Tricyclic side effects: dry mouth, constipation, urinary problems; skin changes; lower blood pressure; monitor EKG, EEG, and liver

• Alpha-drugs
  • clonidine, Tenex
  • improves attention
  • Alpha-adrenergic medication side effects: lethargy; drowsiness; deceased blood pressure; EKG changes

Sensory Symptoms

• "Just right" feeling
• Premonitory urge (sensation or pressure immediately before a tic)
• Restless Legs Syndrome
• Because of these sensations the movements are more like compulsions,
• Therefore, many movements are voluntary-like

Biochemistry

• Norepinephrine involved in pathobiology of Tourette's Syndrome
• Altered balance of NE, 5HT, and DA likely involved in OCD

Environmental Factors in Tourette's Syndrome

• 11 factors resulted in decreased symptoms: visits to doctor's office, relaxed reading, talking to friends
• 17 factors increased the tics: anxiety, emotional trauma, social gatherings
• Other factors were neutral

School

Poor attention in achool may be due to:

1. Tic severity
2. Medication
3. Executive dysfunction (cognitive dysfunction)
4. Social consequences of a stigmatizing disorder
5. Coexistent ADHD, OCD or other disorders

Goals of health professionals

• Clarify reasons for school problems
• Develop an individualized multimodality treatment program

Modifications for Students with Tourette Syndrome, Attention-Deficit Disorder and Obsessive-Compulsive Disorder

A diagnosis of Tourette Syndrome, and the associated disorders of ADHD and OCD require that modifications be made in the classroom setting due to the neurological origin of the disorder.

Choose from the following articles:

• Material Presentation
• Classroom Environment
• Time Management/Transitions
• Math
• Grading and Tests
• Behavior
• Reading
• Organization
• Handwriting

Material Presentation

• Break assignments into segments of shorter tasks
• Introduce one concept at a time, with as few words as possible, checking for understanding and having student repeat back the directions for a task
• Provide a model of end-product of directions (completed math problem, finished quiz, etc.)
• Introduce an overview of long-term assignments (written and verbal) so student knows what will be expected and when it will be due
• Break long-term assignments into small, sequential steps, with daily monitoring and frequent grading
• Alert student's attention to key points with such phrases as: "This is important. Listen carefully."
• Number and sequence the steps in a task
• Explain learning expectations to student before beginning lesson
• Allow student to obtain and retain information by utilizing tape recorders, computers, calculators and dictation
• Highlight important concepts to be learned in text
• Provide outlines, study guides, copies of overhead presentations to reduce frustration with visual-motor integration and encourage concentration on lesson
• Shorten assignments based on mastery of key concepts
• Provide incentives for beginning and completing material
• Teachers need to check that all homework assignments are written down correctly, providing assistance when needed
• Assignment sheets should be separate from behavior reports
• Provide written and verbal directions with visuals when possible
• Give alternative assignments rather than long written assignments
• Modify expectations based on student's needs

Classroom Environment

• Provide use of study carrel when necessary
• Seat student in area free from distractions, allowing ample space for motor "tics"
• Allow older student input as to seating arrangement
• Eliminate all unnecessary materials from student's desk to reduce unwanted distractions
• Use checklists to help student get organized
• Provide opportunities for movement
• Keep an extra supply of pencils, books, etc. in classroom
• Provide a duplicate set of books to remain at home during the school year
• Many persons with TS, ADHD and OCD have feelings of claustrophobia, so small rooms may cause more ticking and stress
• Allow student frequent breaks from classroom to release tics and excess energy (drinks, restroom trips, errand runner, etc.)
• Provide a quiet place for student when tics are severe
• Have an agreed-upon cue for student to leave classroom
• Develop individualized rules for student if necessary to accommodate severe impairments
• Provide flexible classroom structure according to student's needs
• Provide a quiet classroom during intense learning times
• Reduce visual distractions in classroom
• Seat student away from windows or doorway
• Provide unobstructed view of chalkboard, teacher, etc.

Time Management/Transitions

• Alert student with several reminders, several minutes apart, before changing from one activity to another (classroom changes, lesson changes, recess, lunch, etc.)
• Provide additional time to complete a task
• Allow extra time to turn in homework, without penalty
• 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%
• Reduce amount of work (odd numbers vs. all problems)
• Space short work periods with breaks
• Alternate quiet and active times, allowing for transition time

Math

• Allow use of calculator without penalty
• Require fewer problems to attain passing grade
• Provide a table of math facts for reference
• Provide fewer problems on worksheet
• Read and explain story problems, breaking into smaller steps
• Use graph paper or notebook paper turned sideways to keep problems in columns

Grading and Tests

• Provide a quiet setting for test taking, allowing test to be read to student, if necessary, and allowing for oral responses
• Exempt student from district-wide tests if necessary
• Divide tests into smaller sections
• Grade spelling separately from content
• Use typed tests, not cursive
• Allow as much time as needed to take tests
• Provide movement and breaks during tests
• Provide partial grade based on individual progress or effort
• Permit student to retake tests until passed
• Mark only correct answers
• Permit student to rework missed problems for better grade
• Change percentage of work required for passing grade
• Avoid all timed tests

Behavior

• Avoid confrontations during transition times by allowing student to leave a couple minutes early; to walk with teacher at front of the line; place a responsible student behind TS student
• Seat TS student next to a responsible student to help in staying on task
• Modify school rules that may discriminate against a child with a neurological disorder
• Amend consequences for rule violations (reward forgetful student for remembering to bring pencils to class, rather than punishing the failure to remember)
• Develop an individualized behavior plan for the classroom that is consistent with the student's ability - most classroom behavior modification plans were not intended for use with children with attention, behavior or learning disabilities
• Arrange for student to voluntarily leave classroom and report to designated "safe place" when under high stress
• Ignore behaviors that are not seriously disruptive
• Develop interventions for behaviors which are annoying but not deliberate (i.e., provide a small piece of foam rubber for desk of student who continually taps a pencil on desktop)
• Be aware of behavioral changes which relate to medication or length of school day; modify expectations
• Develop a "system" or code word to let a student know when behavior is not appropriate
• TS students should not be placed in in-school suspension due to the restraints

Reading

• Allow student to sit in comfortable position
• Allow student to use marker to follow along
• Allow recorded textbooks or reader
• Allow student to read aloud to himself, to another student, or into a tape recorder
• Have student read comprehension questions before reading passage
• Encourage student to use headphones to block out auditory distractions
• Break reading assignments into smaller segments

Organization

• Establish daily routine and attempt to maintain it
• Make clear rules and be consistent enforcing them
• Provide notebook with organized sections such as: zip-lock bag for assignments due, extra pencils and supplies; class schedule; assignment sheet; color-coded dividers to match books; three-hole punch to fit notebook
• Avoid cluttered, crowded worksheets by utilizing techniques such as:

  Blocking: Block assignments into smaller segments

  Cutting/Folding: Cut or fold worksheets into fourths, sixths or eighths and place one problem in each square

  Color-Coding, Highlighting, or Underlining: Emphasize important information on which the student needs to focus

• Hand out written assignments with expected dates of completion typed or written on one corner

Handwriting

• Provide a computer for student
• Use worksheets that require minimal writing
• Provide a designated note taker, a copy of another student's notes or teacher's notes (do not expect a poor note taker or a student with no friends to make arrangements with another student for notes)
• When using videotapes, provide printed outline
• Provide printed copy of assignments or blackboard directions
• Do not return handwritten work to be recopied
• Avoid large amounts of written work (both in class and homework)
• Encourage student to select method of writing which is most comfortable (cursive or manuscript)
• Set realistic and mutually agreed upon expectations for neatness
• Let student tape record or give answers orally instead of writing
• Avoid pressures of speed and accuracy
• Reduce amounts of board work copying and textbook copying; provide student with written information
• Grade on content, not handwriting

These recommendations have been compiled by Becky Ottinger, Executive Director of the Joshua Child and Family Development Center, 13013 Fuller Ave., Ste. C, Grandview, MO 64030, Ph. (816) 763-7605

Last Reviewed 2005

Source: Gary R. Gaffney, M.D., Associate Professor
University of Iowa College of Medicine, Department of Psychiatry
Becky Ottinger, Joshua Child and Family Development Center, Grandview, Missouri