Misdiagnosis of mental health disorders in children: Implications for development

• In Event: Poster Session 10
  In Poster Session: PS 10 Topic - Developmental Psychopathology

Abstract

Recent decades have seen an explosion of “new childhood epidemics,” including the 4-A Disorders (Asthma, Allergies, Autism, and ADHD), as well as childhood eczema, celiac disease, and gastrointestinal disorders (Bock et al., 2008; Perro & Adams, 2017), as well as new conditions such as Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) (Swedo, et al., 2012). As these conditions have grown so have the number of children presenting with behavioral and emotional symptoms with a possible infectious or immune etiology (Bock et al., 2008; Perro & Adams, 2017). However, many children go misdiagnosed for years with enormous implications for child development that are not yet understood (Calaprice, et al., 2017).

Our ethnographic study of families with a child affected by PANS examines how mental health symptoms can be an expression of specific medical conditions rather than problems in brain neurochemistry or psychosocial functioning. We started by reviewing descriptions of symptoms and claims of causality and pathophysiology in clinical and research reports. Then, we conducted a systematic analysis of on-line PANS forums for families, and at conferences, we engaged in exchanges with families and researchers from the United States, England, Ireland, and Sweden. Lastly, we conducted in-depth semi-structured interviews (N=20, ~2 hours each) with parents of children affected by PANS in the U.S.

The sampling approach for interviews was theory-based and purposeful with particular attention to maximizing heterogeneity and variation (Patton, 2002). Interviews began by establishing a timeline utilizing “family illness journeys" as a main data gathering technique, an adaptation of "illness narratives" (Kleinman, 1988) where personal experience and meaning making around the illness is merged with a detailed exploration of a) the family's experience with the child’s symptoms, diagnosis, and treatment and b) the child's development. Analysis of interview transcripts was conducted using inductive thematic analysis (Riessman, 2005), with the codes and themes derived from the content of the data (Braun & Clarke, 2012; Riessman, 2005). Research meetings were held frequently to refine initial codes, followed by line-by-line coding (Charmaz, 2006). As a final step, themes were identified and within-case and cross-case analyses conducted (Miles, Huberman & Saldana, 2019).

Results indicate that children were routinely misdiagnosed with psychiatric disorders and it often took years for an infection to be identified. Some children initially diagnosed with autism, anxiety, Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD and Conversion Disorder, lost these diagnoses once they were treated with antibiotics and immunomodulatory therapies. Several children caught up developmentally and no longer qualified for academic supports at school, while others struggled with long-term developmental impacts. Long-term impacts were most common when proper diagnosis was delayed for years and/or if onset occurred at earlier stages of development, particularly before the age of 4. Even parents of children who recovered described implications of lost time to the illness, which varied based on stage of development. This research speaks to the importance of ruling out medical conditions as drivers of individual psychopathology in order to prevent developmental disruptions and long-term impacts.

Authors

• Maria D. LaRusso, University of Connecticut
  Presenting Author

• Cesar Abadia, University of Connecticut
  Non-Presenting Author