tourette syndrome presentation

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Understanding Tourette Syndrome Ken Wheeler, M. Ed. Thomas B. King, M. Ed. Educational Consultants Division of Child Neurology Virginia Commonwealth University Health Care System

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Page 1: Tourette Syndrome Presentation

Understanding

Tourette SyndromeKen Wheeler, M. Ed.Thomas B. King, M. Ed.Educational ConsultantsDivision of Child NeurologyVirginia Commonwealth University Health Care System

Page 2: Tourette Syndrome Presentation

TS, AD/HD, OCD – what they have in common

No biological test Evolve in childhood Standard diagnostic criteria used Impairment defines the condition Diagnosis and Treatment take time

Page 3: Tourette Syndrome Presentation

Anatomy of Tourette

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Functions of Basil Ganglia Structures - Amygdala

The amygdala is connected with the development of social behaviors

Emotional memory Social interpretation

Page 5: Tourette Syndrome Presentation

Structures of the Basil GangliaThalamus

The Thalamus is the “gate keeper” of the brain

It “tastes” every sensation that comes in and/or goes out of the brain (except olfaction)

Sensory and emotional responses must pass through the Thalamus

Page 6: Tourette Syndrome Presentation

Transmission

Genetically transmitted by autosomal dominant gene

Patient has 50% chance of passing the gene to children. However, that genetic predisposition may express itself as TS, as a milder tic disorder or as obsessive compulsive symptom with no tics at all

In some cases TS may not be inherited and are identified as sporadic TS. The cause in these instances is unknown

Page 7: Tourette Syndrome Presentation

Tourette Syndrome Diagnostic Criteria

Onset before age 18 Multiple motor tics One or more vocal tics Tics evolve in a progressive pattern Symptoms wax and wane Duration longer than one year Absence of precipitating illness Observation of tics by knowledgeable

person

TS Classification Group-Definition and classification of Tic Disorders

Page 8: Tourette Syndrome Presentation

Other terms that may refer to TS

Chronic Motor or Vocal Tic Disorder Transient Tic Disorder

These terms may be used by doctors because the duration of the tics is less than one year

Page 9: Tourette Syndrome Presentation

Other Summary Information

Affects BOYS 3 - 4:1 more than GIRLS Involuntary with limited capacity to

suppress Mean age of onset for tics 6 – 7 years Affects 2% of the general population- a

conservative estimate since it is an under diagnosed condition

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Frequency of Co-Morbid Conditions in TS Population

Attention Deficit/Hyperactivity Disorder [50-75 %]

Obsessive-Compulsive Disorder[30-70 %]

Anxiety Disorders [20-80%] Mood Disorders [20-80%] Academic difficulties [50%]

Harvey Singer, M.D., director, Johns Hopkins Hospital, Tourette Syndrome Clinic

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What Does TS Look Like?Motor Tics

Motor Tics - Simple Eye blinking Facial Grimacing Shoulder shrugging Head jerking Arm thrusting Nose twitching Mouth opening Eye rolling

Motor Tics - Complex Touching objects Touching or Hitting

self/others Biting lips or arms Scratching

persistently Twirling Foot tapping/dragging Jumping Hopping

Page 12: Tourette Syndrome Presentation

What Does TS Sound Like?Vocal Tics

Vocal Tics - Simple Throat clearing Sniffing Grunting Humming Whistling Spitting Squealing Clenching teeth

Vocal Tics - Complex Stuttering Echolalia -

Repeating of another’s words

Palallia - Repeating one’s own words

Copralalia - Speaking obscene word/phrases

Page 13: Tourette Syndrome Presentation

Behavioral Concerns with AD/HD

Quick Temper Overreaction Mood Changes Difficulties with impulse control Oppositional behavior Defiant behavior

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Mood Disorders

Depression can also be a feature Usually correlated with OCD or

ADHD Also correlated with tic severity

Journal of affective disorders, 2006 Apr;91(203):256-8.

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Anxiety Disorders

Overly active Poor concentration Poor general organization May be due to neurotransmitters

and not just “worry” about tics Looks like ADHD, but it’s not and

requires different treatment

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Rage Attacks

May be called intermittent explosive disorder (DSM – IV TR)

Probably due to complex urge resolution

Functional Behavioral Analysis may not identify any environmental factors

Child will usually be remorseful, but unable to explain behavior

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Learning Disabilities

Writing Disorders Reading Comprehension Disorders Math Disorders Visual-Motor Integration is almost

always a problem Processing Speed and Efficiency

Difficulties

Page 18: Tourette Syndrome Presentation

Academic Concerns with Attention & TS

Has difficulty organizing work

Has difficulty playing quietly

Often talks excessively Often

interrupts/intrudes on others

Does not appear to listen to what is said

Often loses things necessary for school/home

Engages in physically dangerous activities without considering consequences

Page 19: Tourette Syndrome Presentation

Psychoeducational Assessment

Reading Comprehension Assessment Psychomotor Speed Working Memory Comprehensive Writing Assessment Academic Fluency Rapid Automated Naming

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Obsessive-Compulsive Disorder

and TS Obsessions

Intrusive and recurring thoughts and images

CompulsionsIrresistible urges or impulses to repeat

ritualistic acts over and over and over again

OCD waxes and wanes [like TS does] Exacerbated by stress [like TS]

Page 21: Tourette Syndrome Presentation

Common Obsessions & Compulsions

Need for symmetry and perfectionism Evening out Neatness Counting Checking things over and over Constant doubt or worrying Germ obsessions Ritualistic behavior

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Basil Ganglia Structures of the basil ganglia are

also suspected of being involved in OCD

Another disorder that may have basil ganglia involvement is Asperger Disorder

OCD, Tourette Disorder, and Asperger may be simply different manifestations of the same disorder

Page 23: Tourette Syndrome Presentation

Executive Function

Brain processes involved in organizing and ordering our actions and behavior

Executive Dysfunction can reduce one’s ability to Plan Organize Sequence Pace assignments, projects, other work

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Educational Modifications or

Medical Treatment

Goal: Minimize impairmentMaximize adaptive skills

Most important in planning:Encourage self-esteemPrevent depression

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Coping with Tourette Syndrome In the Classroom

Role of the Teacher

Helping with identification of new cases and referring them to the proper channels for help

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Coping with Tourette Syndrome In the Classroom (cont.)

Being knowledgeable & informed on the subject as well as sharing that knowledge with colleagues, teachers are in an excellent position to reduce years of torment and embarrassment which leads to destruction of self-esteem & motivation

Skillful handling of the child in the educational setting

There are 2 main areas of concern (1) the psycho-social and (2) the educational

Page 27: Tourette Syndrome Presentation

Coping with Tourette Syndrome In the Classroom (cont.) Self Esteem

Foster feelings of self-worth and self-esteem Difficult but not impossible….a teacher who is

sensitive to the student’s need to feel good about him/herself can find lots of opportunities to promote those feelings

By showing acceptance and appreciation of a child with TS, the student accepts and likes him/herself. Teachers are role models for others, especially other students within the classroom

Page 28: Tourette Syndrome Presentation

Coping with Tourette Syndrome In the Classroom (cont.)

Suggestions for increasing a student’s self-image

Use praise for good work –stress positive things, e.g. a student who has severe handwriting problems; comment that writing looks better than last paper submitted and compliment the good effort involved or stress the number of correct responses on a test, quiz, etc. rather than the number incorrect

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Coping with Tourette Syndrome In the Classroom (cont.)

Compassion

Alternative methods for handling social situations can transfer to the greater education setting, e.g. cafeteria, playground, other classes, etc.

A knowledgeable teacher who shares information can help larger groups towards acceptance rather than ridicule and fear

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Coping with Tourette Syndrome In the Classroom (cont.)

Associated difficulties with TSIn addition to uncontrollable movements

and noises, some TS students have the follow accompanying issues:

Associated Disorders Learning Disabilities- – General

characteristics of child with LD which include: normal intelligence but experiencing difficulties assimilating and remembering information in the same manner as other students

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Coping with Tourette Syndrome In the Classroom (cont.)

Associated difficulties with TS Attention Deficit Hyperactivity Disorder—

high percentage of children with TS have problems with attention, activity and impulse control

Obsessive-Compulsive Behaviors—these are uncontrollable urges to complete certain rituals. In the classroom, this type of behavior can sometimes make it difficult to complete work in an efficient way.

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Coping with Tourette Syndrome In the Classroom (cont.)

Treatment of Associated Disorders

Depending of the severity of the associated disorders, several different interventions may be used:

Medication Psychotherapy Special Education Placement Behavior Modification – this is used to deal only with

specific behavior problems. There is no evidence that behavior modification can reduce tics

Supportive counseling, at times, to help them deal with the social and physical impact of their symptoms (as with any child with a chronic medical condition)

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Coping with Tourette Syndrome In the Classroom (cont.)

The “Typical” Child with Tourette SyndromeThere is no “typical” child with Tourette

SyndromeEach child is unique

The child with TS is a unique individual with some symptoms of

a neurological disorder

Page 34: Tourette Syndrome Presentation

Coping with Tourette Syndrome In the Classroom (cont.) Children with TS reflect the normal

intelligence curve They can be artistically talented,

exceptional athletes, be charming, have excellent sense of humor, serious and/or scholarly

Teachers who see the child and not just the symptoms are terribly important to the successful development of a balanced, positive self-image for the child with TS

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Tics For some teachers the only aspect of dealing

with TS will be dealing with tics Teacher’s response to tics and his/her

reactions to other children’s concerns about them can make a critical difference

Teachers and other staff members who are involved with a TS student not only have a serious responsibility but a great opportunity to have a positive and lasting impact on the TS child’s adjustment and acceptance by peers

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Coping with Tourette Syndrome In the Classroom (cont.)

Classroom Tips1. For annoying and disruptive

movements/noises –REMEMBER that they are occurring involuntarily. PLEASE DO NOT REACT WITH ANGER OR ANNOYANCE!! Consider using patience since reprimanding a TS student is like disciplining a child with Cerebral Palsy for being clumsy. As a teacher you are modeling the way to react to tics—your tolerance may become contagious and the student with TS will not be ridiculed

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Coping with Tourette Syndrome In the Classroom (cont.)

Classroom Tips (Cont.)2. Provide the student with opportunities for

short breaks out of the classroom. A private place may be the comfortable place to “let out the tics.” Although some students with TS can and want to suppress their tics for a time; however, they eventually must express them. These short time-out periods may also enhance the child’s ability to focus on schoolwork, because he/she is not using all his/her energy to suppress the tics

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Coping with Tourette Syndrome In the Classroom (cont.)

Classroom Tips (Cont.)3. Allow the student with TS to take tests in a

private room to help reduce wasted energy on suppressing the tics during a very quiet time in the classroom (stress can induce tics)

4. Allow staff such as guidance counselors, psychologist and other knowledge personnel to provide information and appropriate audiovisual materials for students and colleagues. By educating and helping others, especially other students, understand about tics there is less chance of ridicule and teasing behavior

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Coping with Tourette Syndrome In the Classroom (cont.)

5. For student’s whose tics are particularly disruptive, have the student present information in a different manner rather than reciting in front of the class

Remember students with TS are as frustrated as the teacher about those annoying and disruptive nature of tics

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Writing Problems

A significant percentage of students with TS also have visual-motor integration problems so tasks that require a lot of copying are very difficult and time consuming. Copying tasks in reality can be overwhelming to students with TS (they are not lazy or avoiding work). Accommodations that can help children with writing difficulties include:

Page 41: Tourette Syndrome Presentation

Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Writing Problems (Cont.) Modifying written assignments by: having the

child copy down and complete every other problem on a page of math; allowing the child to present a report on tape or orally rather than in writing; allowing a parent or another adult to copy down work or act as a “scribe” so that the student can dictate his/her ideas to facilitate concept formation. It helps to focus on what the student has mastered and not the quantity of written work produced.

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Writing Problems (cont.) If a student with visual-motor problems may

not be able to write quickly enough to get important information on paper, assign a “note-taking buddy” or “homework partner” – whose notes can be copied. The homework buddy should be a reliable student who can be called to make sure about assignments. Be sure to work this out DISCREETLY so that the student with TS does not feel singled out or different

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Writing Problems (cont.)

For tests that have computer scoring sheets, allow the student to write on the test booklet. This avoids confusion about using a grid-like answer sheet.

Whenever possible, allow as much time as needed for test(s) taking. Another setting rather than the classroom may be appropriate

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Writing Problems (cont.) Students who have visual-motor

problems are very often poor spellers. Use a modified grading system—do not penalize for spelling errors, but encourage proof-reading and the use of a word processor with spell checkers

Grade handwriting based on effort

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Coping with Tourette Syndrome In the Classroom (cont.)

For those students who have special problems with written math: Encourage the use of manipulative in

teaching math Encourage the use of a calculator to

perform rote calculations Use grid paper with large boxes or

turning regular lined paper sideways to form columns to help maintain straight columns when calculating

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Language Problems—General and TS Related

Some students with TS have symptoms that affect language. There are 2 types: language based learning problems that are common to other children and language problems that are specifically associated with the tics of TS

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Language Problems—General and TS Related (cont)

For language processing problems that relate to general learning disabilities

1. Provide visual input as well as auditory whenever possible, e.g. provide written directions as well as oral ones; have a copy of a lecture outline to follow while listening to instructions; pictures & graphs that illustrate the text are usually quite helpful

2. Give directions one or two steps at a time. When possible, ask the student to repeat the instructions back. Check work to see if the first several are done correctly

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Language Problems—General and TS Related (cont)

If student mumbles while working, try suggesting a seat where he/she will not disturb others (preferential seating). Sometimes quietly “reauditorizing” instructions or information to themselves can help students grasp and remember the assignment.

BEING FLEXIBLE CAN MAKE A HUGE DIFFERENCE FOR STUDENTS WITH TS

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Language Problems—General and TS Related (cont)

Language problems that are unique to children with TS include:

Repetition of their own words or those of someone else. This symptom sounds like stuttering but actually involves the utterance of words or whole phrase. Be aware that other students may exploit this problem by whispering or saying inappropriate things to that the TS student will involuntarily repeat them and get into trouble.

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Coping with Tourette Syndrome In the Classroom (cont.)Dealing with Language Problems—General and TS Related

(cont)

Additionally, this urge to repeat can be seen in reading and an/or writing activities. Students with TS may not be able to complete work because they “get stuck” re-reading or rewriting one word over and over again (this is called “looping.”) Monitor and when this occurs consider using the following:

1. Have the student take a short break or switch to other work

Page 51: Tourette Syndrome Presentation

Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Language Problems—General and TS Related (cont)

2. When reading, give the student a note cared with a cut out “window” that displays only one word at a time. The student slides the window along while reading so the previous word is covered and the chances of getting stuck are reduced.

3. When writing, have the student use pencil or pen without an eraser or allow the student to complete the work orally. Occasional reminders to move on may help.

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Attention Problems

In addition to learning difficulties, many TS students have varying degrees of attention deficit hyperactivity disorder (ADHD). As already stated, medical treatment for this problem in TS children IS complicated. Even with medication intervention, some still may have difficulty maintaining focus.

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Coping with Tourette Syndrome In the Classroom (cont.)

As a teacher you may want to consider using the following approaches:

1. Preferential seating to minimize the visual distractions

2. Allow the student to work in a “quiet” place, e.g. the library

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Attention Problems (cont.)3. Allow the student to work in short intense

periods with breaks to run errands or simply wiggle in the seat. Change tasks frequently.

4. Contract for work to be done in advance. A specific number of problems should be finished by a certain reasonable time. Be realistic. Short assignments with frequent checks are more effective

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Coping with Tourette Syndrome In the Classroom (cont.)

Dealing with Attention Problems (cont.)

5. With younger children, simple gestures, such as placing your hand on the student’s shoulder, can be a helpful reminder to focus during listening periods.

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Coping with Tourette Syndrome In the Classroom (cont.)

Do TS students need special education?Some may need special education services due

to associated learning and behavioral disorders; however, the disruptive nature of the tics alone is not a reason to exclude a child from a general education classroom. Individuals should have a full evaluation by professionals familiar with TS before being considered for special education services.

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Treatment for TS

Psychological Counseling Behavioral Therapy Medications Alternative Therapies Understanding and support from

peers and adults

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Significant Modifications in School

Handout KISS Location of seat in class Retreat – the health room Education of peers – Danya project; TSAGW Teacher presentations Teacher sets the tone of acceptance in the

classroom Having a buddy

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Reasonable Accommodations

extra time on tests access to

computer or Alphasmart for written work

handwriting not graded

student may leave the classroom to express tics

break assignments into smaller “chunks”

reduced homework use of calculator daily check of

assignment book extra set of books at

home frequent breaks preferred seating near

teacher

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Expectations for Educational Outcomes

Same as for other students

Maybe extra support May need

IEP 504

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Bibliography

Tourette Syndrome Association of Greater Washington [serves VA, MD, DC, WV]Phone: 301-681-4133 Email: [email protected]

Journal of Learning Disabilities, Vol. 24, No. 1, Jan 1991

“Coping with Tourette Syndrome,” Judy Wertheim, Tourette Syndrome Association, Inc., March 1982