Joe Edwards, Psy.D. Stephanie Eken, M.D. David Causey, Ph.D. Pediatric OCD Joe Edwards, Psy.D. Stephanie Eken, M.D. David Causey, Ph.D.

Prevalence of OCD in children OCD is considerably more common than once thought 1 in 200 are thought to suffer from OCD 3 or 4 in each elementary school have it Up to 20 adolescents in an averaged-sized high school have OCD 7 ½ million in the US will suffer OCD during their lifetime (15 million OCD spectrum disorders)

Prevalence of OCD cont. Unfortunately, only 4 of 18 children found to have OCD were under professional mental health care (Flament et al., 1988), of those 18 had been identified as having OCD OCD has been called the “hidden epidemic” (Jenike, 1989)

Factors contributing to underdiagnosis of OCD Factors in OCD: secretiveness & lack of insight Fear of being seen as Crazy Factors with healthcare providers: incorrect dx.’s, lack of familiarity with (or unwillingness to use) proven treatments, differentiating variants of OCD symptoms Access to good treatment

DSM-IV criteria for OCD OCD is characterized by recurrent obsessions and/or compulsions that cause marked distress and interference with social or role functioning Children may present with either obsessions or compulsions (most have both) In youth, the types of symptoms, can change rapidly

DSM-IV criteria for OCD OCD behaviors can occur in a child without meeting criteria for OCD DSM-IV specified OCD symptoms must cause distress, being time-consuming (> than 1 hr/day) , or must significantly interfere with school, social activities, or important relationships

DSM-IV criteria for OCD Obsessions are more than simply excessive worries about real life problems Obsessions originate from within the mind At some point in the illness, the person recognizes that the O/C are excessive and unreasonable

DSM-IV criteria for OCD Specific content obsessions are not related to another Axis I disorder (obsessions about food in an eating disorder or guilty thoughts with ruminations in depression)

Common OCD symptoms in children Obsessions Contamination themes Harm to self or others Aggressive themes Sexual themes Scrupulosity/religiosity Forbidden thoughts Symmetry urges Need to tell, ask, confess Compulsions Washing or cleaning Repeating Checking Touching Counting Ordering/arranging Hoarding Praying

Common OCD symptoms in children OCD symptoms frequently change over time By the end of their adolescence most all of the classic symptoms have been experienced by the child

Assessment of OCD *See Merlo et al., 2005 Clinical Interview Be sure to include: Impact on activities (which ones) Impact on family (and family dynamics) Accomodation behaviors (see scale) Child’s attitude toward symptoms (ego- dystonic versus ego-syntonic)

Diagnostic Interviews Anxiety Disorders Interview Schedule (Silverman & Albano, 1996) – not high agreement between child and parent Schedule for Affective Disorders and Schizophrenia for School-Age Children (Kaufman et al., 1997)

Measures Children Yale-Brown Obsessive Compulsive Scale (CY-BOCS) (Scahill et al., 1997) Clinician Rated (past week) Assess severity of symptoms, control Some evidence that clinician-rated is superior to subject-rated (Stewart et al., 2005)

Measures Leyton Obsessional Inventory-Child Version (Berg et al., 1988) Includes a short form Children’s Obsessional Compulsive Inventory (Shafran et al., 2003) Children’s Yale-Brown Obsessive-Compulsive Scale-Child Report and Parent Report (Storch et al., 2004)

Measures CBCL Obsessive-Compulsive Scale (Storch et al., 2005) 6 items; adequate psychometrics Child Obsessive Compulsive Impact Scale (Piacentini & Jaffer, 1999)* School activities, home/family activities, social activities Family Accomodation Scale (Calvacoressi et al., 1995)* Correlation with severity and family dysfunction

What is not OCD Developmental Factors Most children exhibit normal age-dependent obsessive-compulsive behaviors (Liking things done “just so” or insist on elaborate bedtime rituals (Gessell, Ames, & Ilg, 1974) By middle childhood, these behaviors are replaced by collecting, hobbies and focused interests

What OCD is not Individuals who display excessive worry that does not cause severe discomfort or disrupt daily life O-C PD—obsessive people who are punctual and/orderly (but perfectionism, stinginess, or aloofness can interfere with their life or the quality of relationships) Compulsive eaters, Pathological Gambling, Promiscuous sex, or Drug abuse (these people derive pleasure from the compulsive activity)

Comorbidity with OCD More than one disorder is often present (the Dx. of OCD is not exclusionary) Many children become so distressed and overwhelmed by OCD symptoms that they develop MDD

Comorbidity with OCD Tic disorders, anxiety disorders, LD, & disruptive behavior disorders are not uncommon OCD is a spectrum disorder Disorders on the OCD spectrum include: trichotillomania body dsymorphic disorder Tourette Syndrome/tic disorders Only a small number exhibit signs of OC personality disorder

What does not cause OCD Overly strict toilet training Watching a parent or sibling carry out OCD rituals (those without a genetic predisposition)

Factors that may be related to OCD Early life experiences (Rachman & Hodgson, 1980) found that excessively harsh punishment for making mistakes may predispose individuals to develop obsessive doubts and checking rituals Life stress (psychosocial distress) (Findley et al., 2003) – stress differentiate clinical OCD from nonclinical group

OCD is a neuropsychiatric disorder Neuropsychology has identified the following symptoms: Non-verbal skills < Verbal Reasoning skills (which place kids at risk for dysgraphia, dyscalculia, poor written language skills, & reduced processing speed & efficiency) Association with Asperger Syndrome Also included on “list” of symptoms found in “Childhood Bipolar Disorder”

OCD is a neuropsychiatric disorder Successful treatment utilizes serotonin reuptake inhibitors (SSRIs) The “serotonin hypothesis” (OCD) “Grooming behavior gone awry” Neuroimaging studies implicate abnormalities in circuits linking the basal ganglia to the cortex--these circuits have responded to both BT and SSRIs.

OCD and medical conditions (PANDAS, SC) Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) In a subgroup of children, OCD symptoms may develop or be exacerbated by strep throat With Sydenham’s chorea (a variant of rheumatic fever--RF) OC behaviors are common, OCD is more common in RF patients when chorea is present

OCD associated with PANDAS or RF/Sydenham chorea Group A antigens may cross react with basal ganglia neural tissue resulting in OCD or tic symptoms If there has been a rapid onset of OCD or Tic symptoms, or a dramatic exacerbation of these symptoms, following PANDA or RF, the patient should be worked up for Group A strep infection, since antibiotic therapies may benefit select patients

History of Behavior TX with OCD Traditional behavior therapy involving Systematic Desensitization did not produce good results with OCD patients In 1966, Dr. Victor Meyer (a British psychiatrist) instructed nurses working on a Psych. Ward to actively prevent patients from carrying out their rituals—14/15 patients shows rapid improvement

The active ingredients for Behavior Tx—E/RP Exposure (E)—confronting a situation you fear Response Prevention (RP)—keeping yourself from acting on the compulsions afterwards

Principles for E/RP Confront the things you fear as often as possible If you feel like you need to avoid something don’t If you feel like you have to perform a ritual to feel better, don’t Continue steps 1, 2, & 3 for as long as possible

Habituation Habituation comes from the Latin word habitus, for habit (to make familiar by frequent use or practice) After long familiarity with a situation that at first produces a strong emotional reaction, our bodies learn to get used to or ignore that situation

Setting Goals recommendations by Lee Baer, Ph.D. Work on one major goal at a time Carefully choose the 1st symptom to work on—what symptom do you have the best chance with success with? Convert symptoms to goals Set realistic goals Rank your Goals Be aware of “Flat Earth Syndrome” Set long-term goals—by the end of treatment, “I want to be able to________”

Setting Practice Goals I will expose myself to X, without doing Y Put practice goals in writing Ask the 80% question—”If I practiced this goal 10 times, would I likely be successful 8? Use Subjective Units of Distress (SUD) ratings to guide practice goals Strive to achieve but be forgiving Notice small gains Set practice goals each session

Techniques to assist E/RP by Lee Baer, Ph.D. Practice with your helper a) discuss your goals openly with helper b) accept encouragement for even partial accomplishments c) ask any reasonable question (not for reassurance, and trust their opinion) d) do not argue or get angry with your helper

Techniques to assist E/RP You will feel anxiety if you are doing the exposures and response prevention correctly (but it will be less than feared) Keep reminders hand (index cards) Reward yourself for success Visualize your long-term goals Let obsessions pass through your mind (do not try and block them—due to rebound)

Techniques to assist E/RP Maintain standards in E/PR (avoid keeping fingers crossed, saying a prayer or smoking a cigarette to reduce anxiety during an exposure) Hints for RP—break down goals into small steps Use Audiotapes (for idiosyncratic ones) and Videotapes to intensify exposures Set aside “worry time” for obsessions In working with kids, parents must be involved—a reward system can be helpful

Treatment of OCD in children Assessment of OCD: Individualized diagnostic assessment: review of OCD symptoms r/o co-morbid disorders (depressive or disruptive disorders, other spectrum dx.’s) review of psychosocial factors

Treatment of OCD in children Treatment of choice for OCD in children: is a combined treatment (CT) approach-- CBT & SSRI’s Expert consensus treatment guidelines for 1st line treatments Prepubescent children: CBT (mild or severe OCD) Adolescents: CBT for milder OCD; CBT & SRI (or SRI alone) for severe OCD

Treatment of OCD in children CBT alone CBT is a remarkably effective & durable TX for OCD (Dar & Greist, 1992) While “booster” sessions may be necessary, those who are successfully treated with CBT alone tend to stay well Medication alone Relapse is more common following the discontinuance of medications March (1994) found that improvement persisted in 6 of 9 CT responders following withdrawal from medication (CBT helps inhibit relapse)

Treatment of OCD in children Clinical Interview (including a review of developmental level, temperament, level of adaptive functioning--current and pre-morbid) Screening Measures (CBCL & TRF & CDI) Assessment of OCD symptoms If possible should be administered to both primary caregiver and child (independently) Should be done initially and be periodically re-administered to measure progress

Treatment of OCD in children Goals of the 1st evaluative session Review of symptoms Obtain history (standard) Assessment Diagnosis Recommendations might include: 1) additional assessment (psychological or medical) 2) CBT 3) medication 4) academic and/or other behavioral interventions

CBT with children Step I: Psychoeducation The family and patient need to have an understanding of OCD within a neurobehavioral model A review of the risks and benefit of CBT Begin to externalize OCD as the “enemy” and treatment involves “bossing back” OCD

CBT with children Step 2: Cognitive Training (a training in cognitive tactics for resisting OCD) Goals of CT include: increasing self-efficacy, predictability, controllability, and self-attributed likelihood of a positive outcome with Exposure & Response Prevention Targets for CT include: reinforcing accurate information about OCD & TX., cognitive resistance “bossing back OCD,” and self-administered positive reinforcement & encouragement.

CBT with children Step 3: Mapping OCD Before Treatment OCD Transition Zone Child After Treatment Transition Zone Child OCD

CBT with children Step 3: Mapping continued Fear Thermometer 10 - No Way! 8 - Really Hard 6- I’m not sure 4 - Hard 2- I’m unease 0 - No problem Fear Thermometer

CBT with children May also use analogies that child relates to directly due to interests in daily life: Cartoons, sports, hobbies, etc. Example: Spongebob - easier Squigwart – medium Mr. Crabs - hard

CBT with children Symptom List (Stimulus Hierarchy)

CBT with children Step 4: Graded Exposure & Response Prevention (E/RP) “Exposure” occurs when children expose themselves to the feared object, action, or thought “Response Prevention” is the process of blocking rituals and/or minimizing avoidance behaviors

CBT with children Tips in executing E/PR OCD is the enemy and all parties work against it Only the child can battle against OCD, however, he can use his allies (therapist, parents or friends) and newly learned strategies (CT and E/RP) to combat OCD

CBT with children What is the role of parents? Parents are an important part of the CBT treatment process While they can’t combat OCD for their child, they can encourage the child to “boss back” OCD and not engage in behavior that helps reinforce OCD symptoms. Parents should have adequate psychoeducation about OCD and should be involved in the child’s treatment

Questions about the Tx of OCD How long will CBT take? Weekly, then bimonthly, and eventually monthly over 6 months (Dr. Hurley at MGH) If they are very determined and motivated to work hard If less motivated patient’s stay in treatment longer Most important how willing is the patient to work on Exposure and Response Prevention?

Questions about the Tx of OCD Will CBT eliminate all OCD symptoms? No Is BT is affective for children as for adults? Yes Are all types of OCD are as easy to treat as another type? No—cleaning or contamination types are the most straight forward to apply E/RP What are the most difficult types of OCD to treat? Compulsive slowness and mental rituals

Other approaches Metacognitive therapy: initial results appear to be positive (Simons et al., 2006) “Family-based CBT”: positive results reported (Storch et al., 2007)

Family Involvement Family education (noted above) Family accomodation behaviors Impact of family – parent distress Family dynamics

Helpful Tips What’s “GOOD” and what’s “BAD” about the OCD behaviors? (Compare lists) Externalize the problem, give it a name E.g., Mr. Worry, OC Flea, etc. Use analogies to describe what the OCD does E.g., redial button (hang up)

Helpful Tips Work with parents on what they do that is: “helpful” and “not helpful”? (Moritz) Helpful: positive self-talk, avoid over-involvement, look for positives, etc. Not Helpful: punishment, criticism, blaming and shame, accommodating, etc.

A Contrast in Cases (1): Age/Gender: 7 year old boy Symptom onset: evident since age 2 Characterized by: moderate and chronic; obsessions – symmetry, exactness, order, moral Attitude toward OCD: ego-syntonic – patient angry about therapy; tantrum at 1st appt. Family: chronic / consistent accomodation; occasionally refused to do as he requested, parents each with OC tendencies Other issues: strong willed, controlling child

A Contrast in Cases (2): Age/Gender: 10 year old boy Symptoms onset: typical, gradual onset, “last 6 months” Characterized by: mild-moderate; obsessions – worry thoughts / compulsions - checking and counting Attitude toward OCD: ego-dystonic – wanted to exclude parents and resolve with therapist Family: typical responses - some accomodation, some frustration, some refusal to support, etc. Dynamic with older sister Frequent inconvenience to family Other issues: consider issue of excluding parents in tx.

A Contrast in Cases (3): Age/Gender: 13 year old girl Symptom onset: OC tendencies for years, dramatic onset for about 1 month near beginning of 7th grade Characterized by: severe disruption; obsessions – moral, exactness, order, contamination / compulsions – cleaning, rituals, counting, confession, reassurance seeking, checking Attitude toward OCD: ego-dystonic – patient initially worried about being “crazy”, embarrassed Family: healthy, typical mixed response, strong and positive investment by mother and others in tx. Other issues: patient later showed trichotillomania

Treatment Approach: Case 1 List symptoms Patient willing to rate how upset he feels if he can’t do them: 0 – 3 rating scale Started dialogue re: distress/anger Focused on parents: Minimizing accommodation behaviors with a focus on issues child rated as 1-2 on scale Discussed ways to provide alternatives to child to reduce tantrums, but then instructed parents to expect tantrums Also suggested we closely monitor overall level of distress as we do this (some children develop heightened stress with no reduction in symptoms over time) Developed a plan for differential reinforcement Outcome: parents reporting progress with limited distress

Treatment Approach: Case 2 List obsessions and compulsions Developed rating symptom: 0-10 related worry/distress Educated child and family about OCD; some normalizing Externalize the problem: Mr. Worry Developed E/RP plan; separate sheet for each specific problem; some conducted in office (e.g., faucet) Assisted parents with family dynamics, their own coping behaviors, consequences for “being late” Progress monitored by parent observation (and report) and child self-report Outcome: significant reduction in checking behaviors; some issues resolved without specific intervention

Treatment Approach: Case 3 List obsessions and compulsions Education and normalizing: “you’re not crazy” Developed rating symptom: 0-10 related to worry/distress Educated child and family about OCD; OCD book Strategies: E/RP; worry plan, “worry time”, relaxation, differential reinforcement (planned ignoring), E/RP in office (e.g., bubble sheets, writing) Due to severity, distress and impact on school – med. referral Progress monitored by parent observation (and report) and child self-report Outcome: significant reduction in OCD; still a bit embarrassed but developed sense of humor; some mild evidence of symptoms; no obvious impact on daily life at this time; still some trichotillomania, “amnesia” about some of past OC behaviors Discussed and developed relapse prevention plan