Inflammatory Brain Disorders Conference May 1314 2021 Cynthia Kapphahn MD MPH Medical Director Comprehensive Eating Disorder Program Clinical Professor Pediatrics Division of Adolescent ID: 920640
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Disordered Eating in PANSInflammatory Brain Disorders ConferenceMay 13-14, 2021
Cynthia Kapphahn, MD, MPH
Medical Director,
Comprehensive Eating Disorder Program
Clinical Professor,
Pediatrics
Division of Adolescent
Medicine, Stanford
University School of Medicine
Slide2DisclosuresI have no financial disclosures or conflicts of interest to disclose
Slide3Overview:Abnormal eating behaviors in PANSDiagnosing eating disorders in PANSMedical problems associated with restricted intake Approach to treating a child with restricted intake and PANS
Slide4There are those patients you’ll never forget…Girl with severe malnutrition, anorexia nervosa: Jumped on and off toilet so many times it broke off the wallTook forever walk along patterned rug in hallway Boy with h/o picky eating, treated for an eating disorder, weight restored until…Suddenly stopped eating and drinkingWaiting in basement for aliens to bring back his real dad Boy referred to Eating Disorders Clinic for severe malnutrition:Wouldn’t swallow saliva or take a deep breath because he’d weigh moreBoy who said he wouldn’t eat until we made his sore throat feel betterKept coughing with a tic that wouldn’t stopWhat’s going on?! These aren’t like the rest of my patients with eating disorders!!
Wait a minute!
They all
have OCD!
Slide5Disordered Eating in PANSSudden onset of restricted eating is a major diagnostic criteria for PANSMay restrict food, fluids, or both
Slide6Would Food Restriction in PANS Meet Criteria for an Eating Disorder Diagnosis?MAYBE!If so, Avoidant Restrictive Food Intake Disorder (ARFID) most likely diagnosisAnorexia Nervosa also possible, though usually PANS patients not worried about body shape or size Excessive eating occasionally occurs with PANS, but unlikely to meet criteria for Binge Eating Disorder (BED)
Slide7What Is Avoidant Restrictive Food Intake Disorder (ARFID)? ARFID characterized by persistent failure to meet appropriate nutritional and/or energy needs, AND at least one of the following:Significant weight loss (or lack of expected gain)Significant nutritional deficiencyDependence on oral nutritional supplements or tube feedingMarked interference with psychosocial functioningNO disturbance in body imageEating disturbance not attributable to concurrent medical condition or not better explained by another mental disorder. When the eating disturbance occurs in context of another condition or disorder, severity of eating disturbance exceeds that routinely associated with the condition or disorder and warrants additional clinical attention.
Slide8PANS and Eating DisordersWhy is it important for clinicians who treat eating disorders to recognize PANS?Eating restriction can be severe enough to cause significant malnutrition and medical instabilityTargeted treatment for PANS can full or partial resolution of restricted intake and other symptoms (Swedo 2017)Residual eating symptoms may require treatment by eating disorder specialistNeed to develop better and more specific therapeutic interventions to address the types of food restriction seen in PANSSwedo, S., Frankovich, J., Murphy T, 2017. Overview of Treatment of Pediatric Acute-Onset Neuropsychiatric Syndrome. J. Child Adolesc. Psychopharmacol. 27, 562–565.
Slide9Reasons for Sudden Change in Eating with PANSDecreased appetiteSensory alteration/hypersensitivityFear of contamination/poisoningFear of choking or vomitingDifficulty swallowingRitualistic/obsessive eating behaviors
Slide10PANS and Food RestrictionStudy of 43 youth, ages 4-14 yo, with PANS and OCD, by Murphy et al. (2015) noted:47% had food restriction at time of assessment, including23% significantly affected by food restriction and met criteria for ARFID Study of 29 children, ages 5-12 yo, with PANS and new abrupt onset of eating restriction or food avoidance, by Toufexis et al. (2015) noted:66% contamination fear28% fear of vomiting21% fear of choking10% concern about weight or body shapeToufexis MD, Hommer R, Gerardi DM, et al. Disordered eating and food restrictions in children with PANDAS/PANS. J Child Adolesc Psychopharmacol. 2015 Feb;25(1):48-56. Murphy TK, Patel PD, McGuire JF, et al. Characterization of the pediatric acute-onset neuropsychiatric syndrome phenotype. J Child
Adolesc
Psychopharmacol
. 2015;25:14-25.
Slide11Stanford Study of Eating Restriction in PANS354 consecutive patients, ages 4-18 years, presenting to PANS Clinic for initial assessment (9/12-6/19)
Exclusion
criteria:
Did not meet strict diagnostic criteria for PANS
(
n
=102
)
Symptom onset > 5 years prior
(
n
=24
)
Out of
age range
(
n
=11
)
Declined research (
n
=9)
Unclear or incomplete history (
n
=1)
N
=207
F
inal study population
N
=107
NO
R
estricted
Eating
N
=100
WITH
Restricted Eating
Kapphahn CJ, Peet B, Chan A, Thienemann M, Frankovich J. Disordered Eating Behaviors in Children with Restricted Eating and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). International
Conf
on Eating Disorders, Sydney, Australia, Proceedings, March 2020.
Slide12DemographicsNo demographic differences between patients with/without restricted eating Age of PANS onset 8.9 ± 3.4 yearsAge at the first clinic visit 10.1 ± 3.5 years61% male gender 77% non-Hispanic White
Slide13Reasons for Restricted Eating - % Reporting ReasonNote: May report multiple reasons for restricted eating
Slide14% of Patients with Weight Loss in Prior 3 Months, by Reason for Restricted EatingKapphahn CJ, Peet B, Chan A, Thienemann M, Frankovich J. Disordered Eating Behaviors in Children with Restricted Eating and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). International Conf on Eating Disorders, Sydney, Australia, Proceedings, March 2020.
Slide15Risk of Medical Complications from Disordered Eating in PANSRisk of medical instability increases with any of these factors: More extreme restriction of food or fluidsProlonged restriction of food or fluidsLarger proportion of weight lostMore rapid weight loss
Slide16Medical Complications of Restricted IntakeRestriction of food and/or fluid can affect all organsChanges in heart rate, blood pressure, and temperature can be due to malnutrition, dehydration, weight loss, and/or vomitingIf significant restriction of food or fluids, medical provider should assess and follow:Physical signs of malnutrition/dehydrationWeight trendsVital signs, including: Orthostatic pulse and blood pressure (lying down, then standing up)TemperatureCheck initial EKG, for bradycardia, arrhythmias, or prolonged QTcElectrolytes, including phosphorus and magnesium
Slide17Restricted Food Intake Hibernation Response Body adjusts to conserve energy when nutrition is inadequateLow heart rateLow temperatureLow blood pressureSurvival modeBlood flow primarily to heart / brain Other organs neglectedCool hands / feetGrowth/development/reproduction put on hold!
Slide18Approach to Child with Restricted Intake and PANSSeek expert care for PANS symptoms and disordered eatingTeam may include medical provider, psychiatrist/psychologist, dietitian, occupational therapistIf symptoms significant, may need care from 2 teams of experts: PANS and Eating DisordersTreat infection/inflammationUse expanding evidence base to guide interventionsMay result in significant improvement in food/fluid restrictionIf severely restricting or medically unstable, may require hospitalization If obsessions or compulsions interfere with eating: Psychiatric medications may helpIf significantly malnourished, medication may not be as effective until the child has restored weight
Slide19Approach to Child with Restricted Intake and PANSRelaxation/biofeedback interventions, especially if anxious, nauseous, or afraid of choking/vomiting Posture, breathing, relaxationOther interventions for nausea: Acupressure pointsAnti-nausea electrical stimulation wrist bands Aromatherapy Behavior modification plan with specific goals and rewards may help
Slide20Approach to Feeding Child with Restricted Intake and PANSApproach to feeding:Be flexible in types of foods or fluids provided“Not eating is not an option” (but it is OK to drink your food!)Liquid nutritional supplements may be helpful (oral or nasogastric feeding)May need intravenous IV fluids, if dehydrated and not drinkingRarely, total parenteral nutrition (TPN) if unable to eat or drink for prolonged timeContinuously reassess opportunities to expand and adjust what’s offered Rapidly shifting symptomsBe ready to adapt and change
Slide21Approach to Feeding Child with Restricted Intake and PANSFor food or fluid aversions, balance accommodation with exposureIf highly anxious or compulsive Start with safe foods, using liquid nutritional supplements if neededProgress to gradual exposure to foods or situations that cause anxiety or fear, within support framework encouraging incremental progress toward expanded diet and increased intakeIf disordered eating patterns continue even after acute PANS flare, pursue evidence-based therapy for treatment of eating disorders (Lock 2015)
Slide22Approach to Child with Restricted Intake and PANSFamily involvement is very valuableFamilies often know preferred foods and drinks Children may need extensive encouragement and support to eat and drinkSeparation anxiety may make it difficult to be away from family members
Slide23Approach to Child with Restricted Intake and PANSPrinciples of family-based therapy (FBT) are useful in treating abnormal eating during and after acute PANS episodeEmpower parents to be in charge of meals for childExternalize illness – don’t blame child, just the illness Pragmatic approach to getting in enough nutrition to gain weight: Don’t need to know why – Just need to eat!
Slide24ReferencesPANS specific resources:Kapphahn CJ, Peet B, Chan A, Thienemann M, Frankovich J. Disordered Eating Behaviors in Children with Restricted Eating and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). International Conf on Eating Disorders, Sydney, Australia, Proceedings, March 2020. Murphy TK, Patel PD, McGuire JF, et al. Characterization of the pediatric acute-onset neuropsychiatric syndrome phenotype. J Child Adolesc Psychopharmacol. 2015;25(1):14-25.Peet B, Kapphahn CJ, Chan A, Thienemann M, Frankovich J. Comorbid Symptoms in Children with Restricted Eating and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). International Conference on Eating Disorders, Sydney, Australia, Proceedings, March 2020.Thienemann M, Murphy T, Leckman J, et al. Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part I-Psychiatric and Behavioral Interventions. J Child Adolescent Psychopharmacol. 2017 Sep;27(7):566-573. Toufexis MD, Hommer R, Gerardi DM, Grant P, Rothschild L, D'Souza P, Williams K, Leckman J, Swedo SE, Murphy TK. Disordered eating and food restrictions in children with PANDAS/PANS. J Child Adolescent Psychopharmacol. 2015 Feb;25(1):48-56. Eating Disorder specific resources:Golden NH, Katzman DK, Sawyer SM, Ornstein RM, Rome ES, Garber AK, Kohn M, Kreipe RE. Update on the medical management of eating disorders in adolescents. J Adolescent Health. 2015 Apr;56(4):370-5.
Kapphahn
CJ, Derenne J. Avoidant/Restrictive Food Intake Disorder in Children and Adolescents. Adolescent Medicine State of the Art Reviews. 2018, Fall;29(2):260–278.
Lock
J. An update on evidence-based psychosocial treatments for eating disorders in children and adolescents. J
Clin
Child Adolescent
Psychol
44:707–721, 2015
.
Society
for Adolescent Health and Medicine, Golden NH, Katzman DK,
et al. Position
Paper of the Society for Adolescent Health and Medicine: Medical management of restrictive eating disorders in adolescents and young adults. J Adolescent Health. 2015;56:121-5.