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Mental Functions and Non-Epileptic Seizures in Children Robert W. Trobliger, Ph.D. Co-Director Clinical Neuropsychology Northeast Regional Epilepsy Group Non-Epileptic Seizures versus Epileptic seizures Epileptic seizure • An episode typically involving uncontrolled movements or loss of awareness, often brief in duration and resulting from excessive or synchronous electrical activity in the brain ILAE Prevalence of Epilepsy in the U.S. • 2.2 million people • 7.1 for every 1000 people (0.7%) Epilepsy Foundation www.epilepsy.com Prevalence of Diabetes in the U.S. 29.1 million people 9.3% www.diabetes.org Prevalence of Traumatic Brain Injury in the U.S. Between 3.2 and 5.3 million (1.1 – 1.7% population) dealing with long-term disabilities related to TBI www.asha.org Prevalence of Pediatric Epilepsy cases in the U.S. • 1% children aged 0 -17 years have had a diagnosis of epilepsy or seizure disorder • About 750,000 children Centers for Disease Control and Prevention www.cdc.gov Differential Diagnosis Epileptic Seizures versus Paroxsymal Non-epileptic Events (PNEs) Differential Diagnosis Ex: Psychogenic Non-epileptic Seizures (PNES) versus pseudo-seizures non-epileptic seizures psychogenic seizures PNEs Sudden involuntary changes in behavior, sensation or consciousness resembling epileptic seizures but not accompanied by abnormal ictal changes in the brain. Park et al (2015) PNEs – Organic Disorders vascular conditions movement disorders (Parkinson's, Huntington's) gastrointestinal disorders PNEs - psychiatric disorders/conditions ADHD – inattention/daydreaming PTSD – flashbacks and dissociative episodes anxiety disorder/panic attacks conversion disorder (PNES) malingering Reilly et al 2013 Psychogenic Non-epileptic Seizures (PNES) Paroxysmal events with discernible changes in behavior or consciousness but with no accompanying electrophysiologic changes. Psychogenic Non-epileptic Seizures (PNES) Involuntary time limited involve motor, sensory, or behavioral occurrences resemble epileptic seizures. Psychogenic Non-epileptic Seizures (PNES) alteration of consciousness posturing jerking of the extremities sensory or behavioral disturbances Psychogenic Non-epileptic Seizures (PNES) Underlying psychological causes behind the seizures Psychogenic Non-epileptic Seizures • PNES classified as Conversion Disorder with seizures or convulsions (DSM V) ICD-10 diagnosis F44.5 Conversion Disorder (with attacks or seizures) Conversion Disorder DSM V One or more symptoms of altered voluntary motor or sensory function. Clinical findings provide evidence of incompatibility between the symptom and recognized neurological or medical conditions. The symptom or deficit is not better explained by another medical or mental disorder. The symptom or deficit causes clinically significant distress or impairment in social, occupational, or other important areas of functioning or warrants medical condition. Conversion Disorder DSM IV TR A. one or more symptoms or deficits affecting voluntary motor or sensory function that suggest a neurological or other general medical condition. B. Psychological factors are judged to be associated with the symptom or deficit because the initiation or exacerbation of the symptom or deficit is preceded by conflicts or other stressors. C. The symptom or deficit is not intentionally produced or feigned. Conversion Disorder D. The symptom or deficit cannot, after appropriate investigation, be fully explained by a general medical condition, or by the direct effects of a substance, or as a culturally sanctioned behavior or experience. E. The symptom or deficit causes clinically significant distress or impairment in social, occupational, or other important areas of functioning or warrants medical evaluation. F. The symptom or deficit is not limited to pain or sexual dysfunction, does not occur exclusively during the course of Somatization Disorder, and is not better accounted for by another mental disorder. Conversion Disorder Somatic Disorder Somatization is the process whereby physical symptoms are experienced in response to stress. PNES Statistics 5 - 20% of adults in outpatient epilepsy population PNES Statistics Some questions regarding underestimating most numbers come from neurology/epilepsy centers, with VEEG studies. PNES Statistics 20 - 40% children evaluated in epilepsy clinics reported to have PNES PNES Statistics Estimates of prevalence of PNES in children with suspected epilepsy 1 - 9%. Rawat et al (2015) found 6.6% prevalence in children Szabo et al (2012) found 4.8% prevalence of PNES among children underwent VEEG Issues with statistics Difficult to establish estimates of prevalence or incidence of PNES in childhood. Issues with statistics Question if widely diagnosed outside of epilepsy centers Issues with statistics Lack of population-based data Issues with statistics Studies have involved small samples and retrospective analysis of data. Issues with Statistics Misdiagnosis Co-Morbidity with Epilepsy Rates of 20 - 60% D'Alessio et al. 2006 PNES Statistics Ages as young as 5 years but mostly adolescents PNES Statistics Typically manifest between ages 15 and 35 years. Pediatric study Mean age of onset 12 years, 9 months (range 5.5 – 19.5) Szabo et al 2012 PNES Statistics mostly female among adolescents (age 13 +) 65 - 76% female mostly male among children (age 12 and below) 50 – 66.7% male Presentation • • • • Generalized tonic clonic movements Focal tremors Focal clonic movement Headache or abnormal sensation Yi et al 2014 Presentation Dissociative symptoms Dystonia after hyperventilation Atonic features with unresponsiveness Vacant staring with tonic posture Yi et al 2014 Presentation Older children Motor symptoms Szabo et al 2012 Presentation - Duration Typically longer than Epileptic seizures 269 seconds PNES versus 83 seconds epilepsy Szabo et al 2012 Cole et al 2014 Rao, 2012 Presentation Gradual and slow onset Gradual offset Cole et al., (2014); Alessi et al., 2014 Presentation Lack of rhythmic/synchronic movements Convulsions asynchronous, asymmetric, waxing and waning, accelerating, or decelerating Alessi et al, 2014 Rao, 2012 Presentation Pelvic thrusting rare Szabo et al 2012 Presentation Inconsistent seizure history Changes in semiology Cole et al., 2014 Presentation Tend to occur while awake and in presence of others Cole et al., 2014 ; Weichaital et al., 2015; Rao, 2012 Presentation Avoidance/guarding behavior Few injuries sustained as result of seizure Weichaital et al 2015 Rao, 2012 Presentation Consciousness generally retained or fluctuates Responsive to verbal requests/suggestions Rao, 2012; Szabo et al 2012 Presentation Eyes shut Resistance of others' attempts to open eyelids Pupils react to light If eyes open and mirror placed in front of face will abort seizure Weichaital et al, 2015; Rao, 2012 Presentation Can be interrupted by self or others Rao, 2012 Presentation Rapid return to baseline Absence of post ictal change or confusion Cole et al., 2014; Rao, 2012; Alessi et al., 2014 Co-morbid Psychiatric Diagnoses Co-morbid Psychiatric Diagnoses Similar to those with epilepsy often have comorbid psychiatric diagnoses including depression anxiety Salpekar et al., 2009 Sawchuk & Buchhalter 2015 Co-morbid Psychiatric Diagnoses No significant difference between PNES and epilepsy groups of children regarding psychopathology on the CBCL – but both had more than controls. Chinta et al, 2008 Co-morbid Psychiatric Diagnoses Other diagnoses • • • • Depression Anxiety Behavioral problems ADHD Szabo et al 2012 Co-morbid Psychiatric Diagnoses Wyllie et al 1999 • Psychiatric diagnoses DSM IV • Axis 1 • Major depression • Panic disorder • Bipolar disorder, depressed • Dysthymic disorder Co-morbid Psychiatric Diagnoses • • • • • Post Traumatic Stress Disorder (PTSD) Brief reactive psychosis Schizophreniform disorder Separation anxiety/school refusal Attention Deficit Hyperactivity Disorder (ADHD) Co-morbid Psychiatric Diagnoses • Overanxious disorder • Adjustment disorder with mixed emotional features • Oppositional Defiant Disorder • Impulse control disorder Co-morbid Psychiatric Diagnoses • Axis II • Mild mental retardation (Intellectual Disability) • Dependent traits • Borderline personality disorder • Mixed personality disorder • Histrionic personality disorder Co-morbid Psychiatric Diagnoses • Axis III Epilepsy Febrile seizures Head trauma Hearing impairment Framework Similar to epilepsy in terms of presentation but caused by psychological processes Framework Usually understood as reflecting underlying psychological distress Framework Dysfunction in processing of psychosocial stress Baslet 2012 Framework Associated with a number of traits dissociative tendencies alexithymia cognitive inflexibility hypervigilance Baslet 2012 Factors • For 93% of patients there was a significant life stressor • Of those, 76% were determined to be chronic Sawchik & Buchhalter 2015 Factors In most, the seizures did not immediately follow a specific psychosocial stressor but instead occurred months or years after sexual or physical abuse or against the backdrop of chronic family dysfunction Wyllie et al 1999 Most Common Factors School Related Difficulties Reilly et al 2013 Rawat et al, 2015 Sawchik & Buchhalter 2015 Patel et al 2007 Wyllie et al 1999 Most Common Factors Interpersonal/Relationship Problems Reilly et al 2013 Rawat et al, 2015 Patel et al 2007 Sawchik & Buchhalter 2015 Most Common Factors Family stressors Rawat et al 2015 Sawchik & Buchhalter 2015 Patel et al 2007 Wyllie et al 1999 Most Common Factors Physical/Sexual Abuse - physical abuse most predominant - sexual abuse only 5% Reilly et al 2013 Patel et al 2007 Wyllie et al 1999 Most Common Factors History of sexual abuse among children with PNES - 15 - 35% versus History of physical/sexual abuse among adults with PNES - 25 - 45% School factors learning difficulties poor performance stress regarding school work difficulty adjusting to changes in routine behavioral problems – detention, suspension School factors bullying/assault fear of examinations fear of (social) rejection need for attention Patel et al., 2007 Reilly et al., 2013 Yi et al (2014) Family divorce/separation parental or sibling relationship problems domestic physical abuse financial stress relative in jail Family bereavement family Illness Yi et al 2014 Patel et al 2007 Family Stressful environment often not directly related to child but affecting subjective perception of well-being Interpersonal conflicts – Other conflicts with peers/friends Patel et al. 2007 Abuse emotional abuse physical abuse sexual abuse Patel et al., 2007 Associated Traits Personality Traits inhibited submissive introverted Sawchuk & Buchhalter 2015 Personality Traits consistent with increased passive/avoidant coping strategy use Sawchuk & Buchhalter 2015 Coping More passive coping styles solitary yelling hitting crying Plioplys et al., 2014 Diagnosis Diagnosis comprehensive description of seizures comprehensive medical/developmental history and Diagnosis VEEG results no EEG changes during events no post-ictal slowing on EEG and Diagnosis Possibly supplementary diagnostic tests MRI (rule out brain tumors) ECG (rule out heart disease) blood tests (rule out endocrinologic conditions such as hypoglycemia) Diagnosis - VEEG • International League Against Epilepsy (ILAE) has suggested that VEEG for correlation with captured PNES events in combination with consistent history and semiology as the gold standard for diagnosis Diagnosis - VEEG May take time for episodes to occur during VEEG, which is relatively peaceful and non demanding. Cole et al, 2014 Diagnosis – VEEG Periodic issues regarding access to VEEG including insurance clearance or actual physical access to such Diagnosis - VEEG PNES not just a default diagnosis based on VEEG results, need to show evidence of underlying conversion disorder by history and evaluation Plioplys et al 2007 Diagnosis Comprehensive neuropsychological evaluation Utility of NP Evaluation aid diagnosis elaboration/exploration of history and factors (given parent/child underreporting, denial, lack of awareness) aid treatment identification of coping strategies Cole et al 2014 Utility of NP Evaluation Provide recommendations for school accommodations which can be addressed through an IEP (covered under the ADA, IDEA) Cole et al 2014 NP - Interview Exploration of family functioning/dysfunction inter-relationships impact of separation/divorce/conflict bereavement NP - Interview Exploration of psychological factors anxiety/stress depression history of sexual abuse history of physical abuse history of emotional abuse history of psychological trauma Diagnostic Issues Common for more information to come out during interview – particularly when child and parents interviewed separately Diagnostic issues Children and parents often deny the presence of any problems other than seizures. Cole et al, 2014 Diagnostic Issues Sometimes a lack of awareness Diagnostic Issues Common for issues to come up during feedback , possibly in reaction to findings from neuropsychological evaluation NP Evaluation Comprehensive • Cognitive functioning • Academic functioning • Psychological functioning – parent, child reports Treatment Treatment Early acceptance of the diagnosis is important for pediatric and adult outcomes Sawhcuk & Buchhalter 2015 Treatment effective and sensitive communication of diagnosis presenting episodes as real – not faking emphasizing psychological basis Treatment diagnosis given separately avoid misinterpretation by parents address parental feelings of guilt Cole et al 2014 Treatment referral for therapy referral for psychiatric evaluation to determine if psychotropic medication necessary • Symptoms may undergo spontaneous resolution following explanation and suggestion • PNES is treated by mental health providers, but continued involvement of neurologists is recommended. Cole et al 2014 • Follow up with neurologist during transition to aid process, but also to ensure that no epileptic seizures have been missed Continued use of AEDS Most neurologists discontinue AEDs soon after diagnosis Cole et al 2014 Effects of continued use of AEDs impact cognitive functioning behavioral and mood side effects such as irritability and mood instability These reasons should be explored with the family and addressed. Cole et al 2014 • Treatment – Cognitive Behavioral Approach Emphasizing relationships between: mood cognition environment Identification of: moods situations thoughts Identification and examination of: internal triggers external triggers Relaxation techniques Treatment Issues Treatment Issues Wichaidit et al 2015 study of Danish pediatricians Dan– found that ER visits without follow up were seen never by 70% rarely by 25% and sometimes by 5% Which suggests that some do not follow up on the diagnosis. Treatment Issues Many mental health providers may be uncomfortable with treatment due to unfamiliarity with the diagnosis, concern about how to handle seizures – which raises concerns about where to refer Cole et al 2014 Treatment Issues misdiagnosis and diagnostic delay for several years are common. Wichaidit et al 2015 Treatment Issues It is unknown how many adult sufferers of PNES first had symptoms onset in childhood. Sawchuk & Buchhalter 2015 Costs of mistaken/delayed diagnosis Costs of mistaken/delayed diagnosis financial considerations medications tests unnecessary investigations Sawchuk & Buchhalter 2015 Costs of mistaken/delayed diagnosis impact on school/social functioning – absenteeism Sawchuk & Buchhalter 2015 Costs of mistaken/delayed diagnosis delay for appropriate treatment Sawchuk & Buchhalter 2015 Costs of mistaken/delayed diagnosis impact of medication on cognitive functioning Sawchuk & Buchhalter 2015 Prognosis Prognosis Even patients with severe psychopathology can improve Yi et al, 2014 Prognosis review of follow up studies • 18-72% seizure free • 20-47% improvement • 0-18 no improvement Reilly et al 2013 Prognosis Yi et al, 2014 found 80% had remission Similar to another pediatric study of 78% at 30 months follow-up Prognosis Rawat et al (2015) follow up (mean 10.1 months) 76.5% no PNES episodes 14.7% reduced number 8.8% same or increased frequency Prognosis of those who underwent therapy: 60% responded well with no episodes 20% had partial response with reduced frequency 20% had continued – same or increased frequency Prognosis Combination of therapy/medication (SSRIs) 88.9% showed improvement, with partial or complete resolution Rawat et al (2015) Prognosis Sawchuk & Buchhalter 2015 59% complete event remission by conclusion of treatment 21% partial remission - more than 50% reduction in frequency 7% refractory to treatment Prognosis 1 person had a single assessment session and a single session of feedback, with full remission following Prognosis Among patients with no improvement with therapy and their families, there was no acceptance of the diagnosis Treatment Goldsten et al 2010 CBT plus standard medical care produced greater reduction in seizure frequency than standard medical care Monthly seizure frequency from start to end CBT/SMC 12 to 2 SMC 8 to 6.75 Conclusions Typical factors involve • • • • Family dynamics Social dynamics School dynamics Abuse Conclusions Chronic stressors Conclusions Diagnosis VEEG monitoring exploration of medical and psychological history – through interview and evaluation Conclusions This information is gathered through multiple sources – interview with patient and family review of records NP testing Conclusions Correct diagnosis and referral can save resources alleviate significant distress stop unnecessary treatment begin appropriate treatment Conclusions good prognosis provided: diagnosis made early and sensitively cause identified appropriate intervention Conclusions Encouraging treatment improvement rates with: acceptance of diagnosis appropriate treatment End Goldstein et al 2010. 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Archives of Pediatric and Adolescent Medicine, 153, 244248. Yi et al. (2014). Psychological Problems and Clinical outcomess of children with psychogenic non-epileptic seizures. Yonsei Medical Journal, 55, 6, 1556-1561.