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Rollyn M. Ornstein, M.D. Associate Professor of Pediatrics Division of Adolescent Medicine and Eating Disorders Penn State Hershey Children’s Hospital Learning objectives Recognize the various presentations of eating disorders in younger patients. Describe the problems with the current DSM-IV diagnoses for feeding and eating disorders in youth and identify a proposed, renamed diagnosis in the upcoming DSM-5. Discuss treatment options for younger patients with eating disorders. Case 1-Pt MH Almost 13 yo female with 25-pound weight loss over the past year (Ht 60 inches, 94 pounds 71 pounds, BMI 14.5) Fear of being 100 pounds, became a vegetarian, dietary restriction to < 800 kcal/day, started running Amenorrhea, bradycardia, hypotension Admitted to child PHP, dx’d with AN as well as anxiety disorder with OCD traits, started on fluoxetine Gained 20 pounds over 10 weeks, had resumption of menses Case 2-Pt GH 11 yo female with 20-pound weight loss over 2-3 months Frequent complaints of abdominal pain Anxiety and depression symptoms Most recently with total refusal (mom feeding her with a spoon) 59 inches, 67 ¾ pounds, BMI 13.8, bradycardia and hypotension Admitted to PHP briefly and then inpatient psychiatric stay x 3 weeks with NGT feeds; treated with mirtazapine and olanzapine; went back to PHP x 6 weeks Discharged at 94.6 pounds (gained ~27 pounds in 3 months) Case 3-Pt SH 11 yo female with restricted nutrition and weight loss of 8 pounds, intense fear of choking, unable to swallow solid food Symptoms started about 7 months before presentation after an influenza illness with severe pharyngitis, waxed and waned but exacerbated at the beginning of the school year after an allergic reaction (possibly to onions) Height 55 inches, weight 59 pounds, BMI 13.7 (<<3rd percentile) In PHP for 10 weeks, gained 5 pounds, no meds Case 4-Pt LK 13 yo female with 1 ½-year h/o eating disorder sx, initially restriction and 10-pound weight loss, began purging after meals 9 months ago because her parents were concerned by her restriction Seen by PCP with multiple complaints, e.g. fatigue, malaise, insomnia headaches, stomach aches; finally admitted to the ED symptoms; also with oligomenorrhea Ht 61 inches, weight 95 pounds, nl VS Admitted to PHP, diagnosed with ED NOS (purging disorder) as well as anxiety disorder, started on fluoxetine, remains purge-free, anxiety is reduced Feeding problems 25-45 % of normally developing children 80% of developmentally delayed children Some transient No evidence based guidance re: what is a clinically significant feeding difficulty Four main parameters appear important Nutritional adequacy of diet Impact of feeding disturbance on weight, growth and physical development (to include oral motor skills) Impact of feeding disturbance on social and emotional development Impact of feeding disturbance on interaction with caregiver and family function Epidemiology of EDs in children Incidence of EDs may be increasing in younger age groups ED admissions in US increased by 119% from 1999- 2000 (2%) to 2005-2006 (4%) (Zhao & Encinosa, HCUP, 2009) Available surveillance studies of restrictive EDs in children 5-12 years old British Isles (Nicholls et al., 2011): 3.01/100 000 (37% AN) Canada (Pinhas et al., 2011): 2.6/100 000 (62% AN) Australia (Madden et al., 2009): 1.4/100 000 (37% AN) Children with clinically significant restrictive EDs are most often seen by PEDIATRICIANS! From Pinhas et al., 2011 Symptom profiles of eating disorders in younger patients Fear of weight gain, preoccupation with body weight/shape, excessive exercise Underweight with frequent somatic complaints, NO weight/shape concerns, no binge eating Self-induced vomiting and binge eating, NOT underweight Nicholls et al., 2011 DSM-IV: Feeding Disorder of Infancy or Early Childhood A. Feeding disturbance as manifested by persistent failure to eat adequately with significant failure to gain weight or significant loss of weight over at least 1 mo. B. The disturbance is not because of an associated gastrointestinal or other general medical condition (e.g. esophageal reflux). C. The disturbance is not better accounted for by another mental disorder (e.g. Rumination Disorder) or by lack of available food. D. The onset is before age 6 years. Problems with current FDIC criteria Excludes those growing normally despite abnormal patterns/nutritionally deficient or limited diet Concept of organic vs. non-organic basis majority of children have multiple components to the problem, i.e. both behavioral and physiologic Excludes those with onset AFTER 6 yo Forces many into the ED NOS category instead Not very specific Childhood onset anorexia nervosa Ages 7 and up Important developmental differences Psychological and physical Limited capacity for self-reflection and difficulty expressing thoughts and feelings with words Diagnosis may need to take parental report into account, child’s subjective experience, and direct clinical observation Need to assess impact by reviewing previous growth and maturational trajectory and genetic potential Proportion of boys higher than in adolescents Common comorbidities-OCD, depression Other childhood avoidance of food or restricted food intake Characterized by inadequate food intake Characterized by restricted range of food intake Characterized by avoidance due to specific fear Characterized by inadequate food intake Food Avoidance Emotional Disorder (FAED)=a disorder of emotions in which food avoidance was a prominent feature in the presenting complaint; no specific motive School-age and adolescents Weight loss and/or poor eating more likely to bring to clinical attention than manifest anxiety Possible childhood variant of somatoform disorder Characterized by restricted range of food intake Appearance, smell, texture, taste, and/or temperature Color, brand-specific Interferes with ability to eat with family, peers Nutritional compromise, lethargy, concentration problems, poor oral-motor skills Parents experience significant anxiety and frustration which exacerbates the situation Selective eating, perseverant eaters, food neophobia, sensory food aversions Characterized by avoidance due to specific fear Functional dysphagia Fear of swallowing, choking, gagging, vomiting May have experienced a traumatic event as trigger Often present in acutely unwell state with significant weight loss NO body image preoccupation or desire for weight loss Respond well to treatment for phobia Desensitization, gradual exposure, and anxiety management Often get confused with AN and are referred to ED clinicians Great Ormond Street criteria Anorexia nervosa Food avoidance emotional disorder Selective eating Functional dysphagia Bulimia nervosa Pervasive refusal syndrome From Nicholls et al., 2000 Feeding problems in context of neurodevelopmental disorders Texture, taste, brand, presentation, appearance May or may not result in failure to gain weight or weight loss Food refusal, failure to eat usual family diet, inappropriate rate of eating, obsessive eating patterns, failure to accept novel foods, inappropriate mealtime routines Resulting from common ASD features, e.g. attention to detail, perseveration, fear of novelty, sensory impairments, and biological food intolerances History of enteral feeds oral feeding difficulty making transition to Selective (picky)eating Extreme faddy eating persisting into middle childhood and beyond, perseverative feeding disorder Highly limited range of foods Often soft carb-based finger foods May not have developed chewing skills/use a knife and fork Extreme reluctance to try new foods (neophobia) May have sensory integration issues Exclusion from social norms around eating Selective (picky)eating Parents often give up battling but are concerned about impact on physical and/or social development Not usually underweight Often anxious and develop an avoidance-reinforced anxiety associated with new foods Anticipatory nausea, fear of vomiting or choking Only type of early feeding problem that has been linked to later EDs, especially AN More common in boys Common in ASD Food avoidance emotional disorder Avoidance of food to a marked degree in the absence of the characteristic psychopathology of EDs in terms of weight and shape cognitions Know they are underweight, would like to be heavier, and don’t know why they can’t achieve this Fear of being sick, “not hungry”, “can’t eat”, “hurts my tummy” Some cases may be precursors to “true” EDs Comorbid obsessional anxiety or depression may be present but is not the cause of food avoidance Need to address any other medically unexplained sx Food phobias Can occur in isolation or as part of a GAD or OCD Nature of fears varies with developmental stage Usually secondary events and may have clear trigger events Rigid eating patterns Restricted range of foods Can be associated with food allergies Sometimes restricted quantity weight loss Fear of vomiting (emetophobia) Fear of contamination or poisoning Fear of choking or swallowing (functional dysphagia) Fear of consequences of hypercholesterolemia Associated depression, panic attacks, social anxiety, compulsions, separation difficulties Functional dysphagia Swallowing difficulties associated with fear of choking Globus hystericus or phagophobia Can be isolated symptom of acute onset, often following trauma or as a feature of other disorders Found clinically in pt’s with FAED, selective eating, food refusal, and sometimes AN Associated with other anxiety symptoms and somatization disorder Managed with combo of psychoeducation, graded desensitization and exposure, behavioral rewards, family therapy, and sometimes anxiolytic meds Food refusal Usually occurs at some point in child’s development Toddler tantrums, spitting out food, linked to other oppositional behavior In older children, associated with other defiant behaviors Delaying eating by talking, trying to negotiate what food will be eaten, getting up from table during meals, refusing to eat much at meal and then requesting food immediately afterwards Most nutrition gained through snacking In otherwise compliant children, may start after trigger event leading to avoidance, subsequent events perpetuate the symptom (serves psychological need) Can progress to become severe Pervasive refusal syndrome Extreme post-traumatic stress reaction, suspected abuse Coming soon to a theater near you DSM-5 Changes for AN to help classify younger patients Take normal growth and development into consideration as far as weight parameters Remove amenorrhea criterion Behavioral manifestations as opposed to cognitive symptoms DSM-5: Avoidant/Restrictive Food Intake Disorder A. Eating or feeding disturbance (including but not limited to apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; or concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one or more of the following: 1. Significant weight loss (or failure to gain weight or faltering growth in children); 2. Significant nutritional deficiency; 3. Dependence on enteral feeding; 4. Marked interference with psychosocial functioning. DSM-5: Avoidant/Restrictive Food Intake Disorder B. There is no evidence that lack of available food or an associated culturally sanctioned practice is sufficient to account alone for the disorder. C. The eating disturbance does not occur exclusively during the course of Anorexia Nervosa or Bulimia Nervosa, and there is no evidence of a disturbance in the way of which one's body weight or shape is experienced. D. If the eating disturbance occurs in the context of a medical condition or another mental disorder, it is sufficiently severe to warrant independent clinical attention. DSM5: Avoidant/Restrictive Food Intake Disorder Three main subtypes: individuals who do not eat enough/show little interest in feeding; individuals who only accept a limited diet in relation to sensory features; individuals whose food refusal is related to aversive experience. Why did we start our program? Existing PHP couldn’t admit patients under 14 years due to school regulations Inpatient Child and Adolescent Psychiatry unit was relocated to Harrisburg (~25 minutes away) Starting to see more patients under 14 with significant eating disorders ± other psychopathology requiring higher level of care Wanted to create a program with more family involvement, i.e. a family-centered approach Started on August 4th, 2008 Interdisciplinary treatment team Medical Medical stabilization, labs, monitor re-feeding process Nutrition Develop, monitor and modify meal plan according to progress Psychiatrist Assess for use of psychotropic medications Therapist Individual, family and group therapy, development of behavioral contingencies Psychiatric Assistant Observations of therapeutic meals and implementation of behavior plans What does a day look like? Breakfast 7:00-8:00 with Lunch 11:00-12:00 with parents and staff Groups 8:00-11:00 staff Group 12:00-1:00 Transition 1:00-1:30 School 1:30-3:30 Art therapy, music therapy, experiential, feelings, etc. Pulled for various appt’s (medical, nutrition, therapy, psychiatry) Individual and family therapy sessions-one each/week Snack 2:30-3:00 Dismissal Fridays-weekend planning Family-centered approach Parents and families incorporated into treatment and re feeding process Attend a therapeutic meal daily Provide psycho-education on eating disorders and management of eating disordered behavior Attend all sub-specialty appointments Participate in a support group, multi-family meal-planning group and family therapy sessions In charge of the meal plan while at home and are given behavioral training and assistance with developing contingencies Exposure-response prevention Behavioral intervention typically used for anxiety and phobias When applied to eating disorders, patients are repeatedly exposed to feared foods Response prevention refers to blocking compulsive behaviors such as vomiting, exercise or restriction Hildebrandt et al. (2010) concluded that interventions in family based treatment mimics those used in exposure and response prevention. Steinglass et al. (2011) proposed that ERP may be a new and beneficial approach to prevention relapse in individuals with AN Stages of Treatment Assessment Evaluation and observation Psychoeducation for parents and patients Weight restoration and medical stabilization Titrating meal plan and monitoring medical status Treating GI symptoms Compliance with meal plan and challenges Eating 100% and completing challenges in program and home Goal of decreased anxiety and distortion surrounding food/weight Generalizing Eating Behaviors Across Settings ~ last 4 weeks Given progressively more time away from program Patient autonomy when distress over challenges and meal plan diminishes Transitioning to intuitive May start towards the end of program Patients are weight restored and exhibiting minimal distortions surrounding food and weight May start decreasing meal plan and/or adding activity Data from our PHP:8/08-5/12 Total sample: 173 patients 8 – 16 years 92% female; 8% males Four Groups Anorexics - 53% Anxious Restrictors - 23% Bulimics/Patients that Vomit - 12% Eating Disorder NOS - 12% Anorexia Profile 93/173 = 54% Mean age at presentation= 14 yrs Female: Male= 95.7 %:4.3% % of BW lost=19 82.5 % MBW Eating disorder symptoms Restricted nutrition (100%) Use of supplementation (19%) Fears of choking and/or vomiting (1%) Texture and/or sensitivity issues (25.64%) Reports of body image disturbance (87%) Cognitive distortions about food and weight (90%) Purge- Vomiting (2%) Purge- Exercising (68%) Clinical comorbidities Anxiety (37%) Mood Disorder(37%) Learning disorders (2%) ARFID profile 39/173 = 23% Eating disorder symptoms Restricted nutrition (94.87%) Use of supplementation (46.15%) Fears of choking and/or vomiting (43.59%) Texture and/or sensitivity issues (25.64%) Fewer reports of body image disturbance*** Cognitive distortions about food, not weight*** Clinical comorbidities Anxiety (71.79%) Depression (23.08%) OCD (20.51%) PDD (12.82%) ADHD (10.26%) PTSD (5.13%) Learning disorders (26%) Mean age at presentation=11.1 yrs Female : Male=79.5% : 20.5 % % of BW lost: 11 87.3% MBW Bulimia Profile 20/173 =12% Mean age at presentation=14 yrs Female: Male=95.7 % : 4.3% % of BW lost: 6 108 % MBW Eating disorder symptoms Restricted nutrition (100%) Use of supplementation (19%) Fears of choking and/or vomiting (1%) Texture and/or sensitivity issues (25.64%) Reports of body image disturbance (87%) Cognitive distortions about food and weight (90%) Purge- Vomiting (95%) Purge- Exercising (13%) Clinical comorbidities Anxiety (37%) Mood Disorder(37%) Learning disorders (2%) EDNOS profile 21/173 =12% Age at presentation M = 14.2 Gender: Female: 90.5 % Male: 2% % of BW lost: 15 93% MBW Eating disorder symptoms Restricted nutrition (100%) Reports of body image disturbance (95%) Cognitive distortions about food and weight (95%) Clinical comorbidities Anxiety (14%) Mood Disorder(76%) What were the cases???? Case 1 MH Case 2 GH Case 3 SH Case 4 LK AAP Recommendations 1. 2. 3. 4. Pediatricians need to be knowledgeable about the risk factors and early signs and symptoms of disordered eating and eating disorders. When counseling families on preventing obesity, pediatricians should focus on healthy eating and building self-esteem while still addressing weight concerns. Care needs to be taken not to inadvertently enable excessive dieting, compulsive exercise, or other potentially unhealthy weight management strategies. Pediatricians should be encouraged to calculate and plot weight, height, and BMI by using age- and gender-appropriate charts and assess menstrual status in girls at annual health supervision visits. Pediatricians should screen patients for disordered eating and related behaviors and be prepared to intervene when necessary. AAP Recommendations 5. 6. 7. 8. Pediatricians should monitor or refer patients with eating disorders for medical and nutritional complications. Pediatricians need to be familiar with treatment resources in their communities so that they can coordinate or facilitate multidisciplinary care. Pediatricians can play a role in primary prevention during office visits and through school-based and community interventions with a focus on education, early screening, and advocacy. Pediatricians are encouraged to advocate for legislation and policy changes that ensure appropriate services for patients with eating disorders, including medical care, nutritional intervention, mental health treatment, and care coordination, in settings that are appropriate for the severity of the illness. Resources Rosen DS and The Committee on Adolescence. Identification and Management of Eating Disorders in Children and Adolescents. Pediatrics 2010. 126 (6): 1240-1253. Academy for Eating Disorders, 2011. Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders. (available as pdf)