Tourette syndrome-Tackling a Noisy Tic Disorder PowerPoint Presentation

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Tourette Syndrome:Tackling a noisy tic disorder (with just a whisper about medication) Samuel H. Zinner, M.D. Assistant Professor of Pediatrics & Developmental-Behavioral Pediatrician University of Washington, Seattle http://depts.washington.edu/dbpeds Conference on Early Learning Sept 24, 2007

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Tourette Syndrome:Tackling a noisy tic disorder (with just a whisper about medication) Samuel H. Zinner, M.D. discloses no relevant financial relationships with any commercial interests. This presentation will reference unlabeled/unapproved uses of medications and products, and will be identified as such.

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Overview Tics & associated problems Assessment Tic management (non-Rx) Conventional Experimental

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Take Home Points: TS is not rare Tics are usually mild, not catastrophic In most people with TS, tics are one of many related complications Address main problems, often not tics

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Who cares about Tourette syndrome? TS is: common under-diagnosed misunderstood ripe with opportunity for management (and mismanagement) & research

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Tic Disorders: Characteristics Tic Definition motor or phonic involuntary (unvoluntary?) sudden and rapid recurrent non-rhythmic and stereotyped

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Tics: Characteristics

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Tics: Characteristics

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Tics: Characteristics

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Tics: Characteristics

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Tics: Characteristics

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Tics: Characteristics Fractal quality Tics occur in bouts over: seconds minutes weeks months years

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Tics: Characteristics Anatomic evolution of tics rostral → caudal midline → peripheral simple → complex

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Tic Disorders: Characteristics Premonitory urge Tics can usually be suppressed

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. . . . . . . W A X E SW A N E S . . . . . . .

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Tourette’s Disorder DSM-IV-TRTM Criteria Multiple motor + 1 or more vocal Many times/day & at least 1 year Onset before 18 years Not due to substance or medical condition

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Epidemiology “Official” prevalence 1 in 1,000 boys 1 in 5,000 girls Actual prevalence 1 in 100 boys (or even higher)

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Etiology Neuro-anatomy and function Neurotransmitters Genetics

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“If the brain were simple enough that we could understand it, we’d be so simple that we couldn’t” Paul Greengard, Ph.D. Nobel Prize in Physiology or Medicine 2000

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Brain Regions in TS With permission, NIMH

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Differential Diagnosis of tics Compulsions Habits Stereotypies Allergies Sydenham chorea Various involuntary neuromuscular

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PANDAScontroversial Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections

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Genetics TS is genetic in origin TS is inherited family, twin and adoption studies Non-genetic factors also present Gestational exposure? Perinatal? Hormonal?

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Geneticsbarriers to identifying genes Diagnosis based on behaviors Defining the TS phenotypic spectrum “endophenotypes” Family pedigree problems Environmental influences Combinations of genes may be involved Symptoms decrease with age Transient tics

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Differential Diagnosis of tics Sydenham’s chorea Compulsions Blepharospasm Other hyperkinetic disorders Stereotypies Allergies

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Diagnostic Pitfalls 101 Subject or clinician unaware of tics Waxing and waning nature of tics Tics are suppressible

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Diagnostic Pitfalls 102 T.S. is not rare T.S. is usually not catastrophic Few have coprolalia You may not see the tics

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Assessment:co-morbid conditions ADHD Obsessions/Compulsions Learning interferences Behavioral disorders Developmental disorders Mood disorders Anxiety Social difficulties (including PDDs)

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Assessment:co-morbid conditions and tics Lumpers vs. Splitters

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Clinical Course Hyperactivity often precedes tics Head and neck tic onset age 6 to 7 Vocal tics age 8 to 9 Obsessive-Compulsive symptoms 11-12 Peak tic severity age 10 to 11 Often see decrease in tics Tics lifelong in 50% to 90%

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Quality of Life?

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Quality of Life? “Tourette differs from other neuropsychiatric disorders in one simple way: It is largely the disease of the onlooker. When I tic, I am usually not the problem. You are.” Peter Hollenbeck, Ph.D. (a neuroscientist with TS) -Cerebrum (2003)

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Management General Guidelines Education Monitoring (tics and non-tics) Containment

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Identification Clinical aspects of tics Comorbid conditions Emotion and behavior

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Identification – comorbid conditions KEY POINT! Always assess for non-tic comorbidity * 90% occurrence if tics mild * 100% occurrence if tics severe *in clinically-referred samples

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Identification – comorbid conditions Anxiety Disorders ADHD Learning Disorders Behavioral Disorders Developmental Disorders Mood Disorders

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TRICHOTILLOMANIA: moth-eaten appearance to hair and scalp excoriations

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David Sedaris a plague of tics from “Naked” Little, Brown and Company, 1997

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Clinical Course Hyperactivity often precedes tics Head and neck tic onset age 6 to 7 Vocal tics age 8 to 9 Obsessive-Compulsive symptoms 11-12 Peak tic severity age 10 to 11 Often see decrease in tics Tics lifelong in 50% to 90%

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Management Is additional treatment needed: for tics? for co-morbid conditions?

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Management Perspectives: The child The parent The school You

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Managementparent perspective Most Important Episodic rage Attention deficit Learning difficulties Least Important Motor tics Vocal tics

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Management:“co-morbid” conditions OCD & other anxiety disorders ADHD Learning difficulties Behavioral Disorders Sleep disturbances Other self-injurious behaviors Family dysfunction

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Management: tics Education & Accommodation Medications Experimental Behavioral Integrative Surgical Advocacy

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Management: tics Education & Accommodation Teacher in-service Classroom education Teacher as role model Tic breaks/sanctuaries

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Management: tics Education & Accommodation – cont. Testing accommodations Opportunities for movement Scribes Bullying

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Bullying Stop Bullying Now – HRSA www.stopbullyingnow.hrsa.gov

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Management: tics Experimental: Behavioral CBIT (Comprehensive Behavioral Intervention - Tics) HRT (Habit Reversal Training) Awareness Training Competing Response Relaxation Social Support FA (Functional Analysis) Social situations that influence behaviors

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Management:tics Experimental: Integrative Complementary Alternative Holistic

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Management:tics Experimental: Integrative – cont. Six categories Medical Nutritional Foreign substances Behavioral and cognitive Manual and energy medicine Mind-Body

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A common sense guide to complementary/alternative medicine Safe? Effective? Source: Cohen MH & Eisenberg DM, Ann Intern Med (2002)

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Integrative Medicinewebsites National Center for Complementary and Alternative Medicine http://nccam.nih.gov Consortium of Academic Health Centers for Integrative Medicine www.imconsortium.org

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Management:tics Experimental: Surgical Deep Brain Stimulation (DBS)

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Deep Brain Stimulation Printed with permission, Medtronic DBS lead Extension adjust settings Neuro- stimulator

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Management:Advocacy and Legal Rights Tourette Syndrome Association Protection and Advocacy office IDEA Section 504

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Pharmacotherapy for Comorbid Conditions KEY POINT! Target the most troubling symptoms

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Pharmacotherapy KEY POINTS! Do not assume medication is necessary Address comorbid condition(s) Complete tic remission is rare Stimulants are generally safe

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Pharmacotherapy International Psychopharmacology Algorithm Project Category A Good supportive evidence (short-term safety and efficacy) Category B Fair supportive evidence (short-term safety and efficacy) Category C Minimal supportive evidence (short-term safety and efficacy)

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Take Home Points:Clarifying Common Misconceptions TS is not rare Tics are usually mild, not catastrophic In most people with TS, tics are one of many related complications Address main problems, often not tics

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For further information, including Rx discussion: Tourette Syndrome Association, Inc. www.tsa-usa.org Medical Education: “Diagnosing and treating Tourette syndrome” John Walkup, M.D.

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Tourette Syndrome Association, Inc. www.tsa-usa.org