RESUMEN
OBJECTIVE: To determine the frequency of dietary supplement use for children with Down syndrome, and to obtain additional descriptive data regarding the age of initial treatment, cost, perceived benefits, and disclosure of use to the pediatrician. STUDY DESIGN: An anonymous questionnaire in English and Spanish was created for parents of children under age 18 years with Down syndrome. Surveys were completed in our clinic, or accessed on a number of Down syndrome-related websites. RESULTS: A total of 1167 responses were completed and analyzed. Forty nine percent of responders currently/previously gave their child supplement(s). The average child received 3 supplements (ranging from 1-18). Although Nutrivene, curcumin, and green tea extract were most common, over 150 different products were reported. Supplementation began most often in infancy, generally between age 4 and 6 months. Average cost was $90.53/month. Overall, 87% of users noted improvement, mainly in speech, immunity, and attention; 17% reported side-effects, predominantly gastrointestinal disturbance. Lack of improvement and cost were the main reasons for discontinuation. Most parents learned of supplements through a parent group or friend. In almost 20%, the pediatrician was unaware of the supplement use. CONCLUSIONS: Almost one-half of parents surveyed administer or have administered supplement(s) to their children with Down syndrome. Many of the supplements have concerning ingredient profiles and are given to children too young to articulate potential ill effects. Providers need to be aware of these products and question families about their use.