Adverse childhood experiences and the development of Down syndrome regression disorder |
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| Authors: | Sarah Wang Lina Patel Elise A. Sannar Mellad Khoshnood Natalie K. Boyd Lorena Mendez Noemi A. Spinazzi Eileen A. Quinn Michael S. Rafii Jonathan D. Santoro |
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| Affiliation: | 1. Division of Neurology, Children's Hospital Los Angeles, Los Angeles, California, USA;2. Department of Psychiatry, University of Colorado, Aurora, Colorado, USA;3. Department of Pediatrics, Benioff Children's Hospital, University of California San Francisco, Oakland, California, USA;4. Department of Pediatrics, University of Toledo College of Medicine and Life Sciences, Toledo, Ohio, USA;5. Department of Neurology, Keck School of Medicine at the University of Southern California, Los Angeles, California, USA Alzheimer's Translational Research Institute, University of Southern California, San Diego, California, USA |
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| Abstract: | Down syndrome regression disorder (DSRD) is a clinical symptom cluster of acute or subacute neurocognitive regression in otherwise health persons with Down syndrome. The objective of this study was to evaluate if adverse childhood experiences (ACEs) were more prevalent in children with DSRD than those with DS alone. A survey-based, cohort-based study was performed. Caregivers of individuals with DSRD with onset of symptoms between age 10 and 30 years and DS alone were administered the ACEs questionnaire via an online REDCap survey. A total of 159 responses were collected after excluding incomplete surveys and those not meeting criteria for DSRD. Individuals with DSRD were not more likely to experience ACEs (p = 0.18, 95% confidence interval [CI]: 0.43–1.17). In those with ACEs prior to the onset of symptoms, the median time prior was 7 months (interquartile range: 5–10). Individuals with DSRD were more likely to report three or more ACEs (52, 33%) compared to those with DS alone (39, 22%) (p = 0.02, 95% CI: 1.08–2.87). Exposure to ACEs were not predictive of response to particular therapeutic interventions although those with multiple ACEs 3 months prior to the onset of symptoms was associated with lower response rates to benzodiazepines and immunotherapy (p = 0.02, 95% CI: −3.64–−1.13). This study provides preliminary data that individuals with DSRD experience ACEs at a similar rate to individuals with only DS alone, although three or more ACEs, often preceding the onset of symptoms, was more prevalent in individuals with DSRD. |
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| Keywords: | ACE adverse childhood experiences catatonia down syndrome neuroendocrine regression |
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