Table 5 Eat/sleep cluster recommendations

ES1. Eating difficulties do occur in TSC and may be associated with a range of TAND and physical health manifestations. There is limited literature on eating-related difficulties and disorders in TSC, but difficulties with eating do present in individuals with TSC. Eating difficulties in TSC may be similar to those seen in typically developing children (e.g., picky eating), be associated with TAND-related manifestations (e.g., autism-related restricted eating, or mood and anxiety-related over/under-eating), or be associated with physical health in TSC (e.g., mouth ulcers or other adverse effects of medications, physical ill health, pain). Efforts should therefore be made to monitor eating and changes in eating via self-report or informant-report measures on a regular basis

ES2. Eating difficulties in TSC require a comprehensive workup and intervention plan in the context of the range of typical TAND and physical health-related associations. Given that eating difficulties and eating disorders in TSC may be associated with a range of factors, it is important to generate a comprehensive evaluation of the difficulties to inform an appropriate intervention plan. Interventions may include non-pharmacological and pharmacological strategies, depending on the causes of the eating difficulties. The intervention plan should be adapted to the intellectual and communication profile of the individual

ES3. There is no scientific evidence to recommend over-the-counter supplements or restricted diets for TAND. In spite of the interest in the popular literature, there is no scientific evidence base to recommend specific supplements or any specific diets (e.g., gluten-free/casein-free) to improve TAND manifestations. The ketogenic diet is used as an intervention for refractory seizures in TSC, but not as a dietary intervention for TAND

ES4. Sleep difficulties are common in children and adults with TSC across age, sex, and genotype and should be monitored on a regular basis. Sleep difficulties are common in children and adults in the general population but are more pronounced in TSC. Efforts should therefore be made to monitor sleep and changes in sleep via self-report or caregiver-report measures on a regular basis

ES5. Sleep difficulties may be a “cause” and/or a “consequence” of TAND and other neurological manifestations and should be evaluated with this in mind. Sleep difficulties may be a “cause” of some TAND and other neurological manifestations (e.g., leading to dysregulated or overactive and impulsive behaviors, poor scholastic performance, or seizures). Sleep difficulties could also be a “consequence” of TAND and neurological manifestations (e.g., autism-related rigid sleep routines, mood and anxiety-related insomnia, waking due to nocturnal seizures, or adverse effects of medications). This “bidirectional” association should therefore be considered during evaluation and intervention planning

ES6. Healthcare providers should first investigate and treat the biological and psychiatric causes of sleep difficulties before proceeding to non-pharmacological/pharmacological treatments of the sleep. Healthcare providers and caregivers should first evaluate and treat the biological and psychiatric “causes” of sleep problems in TSC, which may include seizures, pain, adverse effects of prescribed medications, or mood and anxiety disorders, before introducing behavioral/non-pharmacological and/or pharmacological treatments for sleep difficulties

ES7. Non-pharmacological strategies should be used before pharmacological strategies to manage sleep difficulties. Once other causes of sleep problems have been identified and treated, or excluded, non-pharmacological strategies should be implemented as the first-line approach. These may include sleep education, behavioral/environmental modifications, and sleep hygiene practices from early in life. For example, consistent bedtime routines, conducive sleeping environments, and limiting access to technology before bedtime should be implemented before the use of pharmacological interventions is considered

ES8. There is a need for targeted research on eating and sleep difficulties in TSC. Despite the significant impact of eating and sleep difficulties on individuals and families with TSC, there is a very limited research base. The prevalence of clinical eating disorders and sleep disorders in TSC is unknown. Diagnoses and treatment recommendations from the general literature should be used and adapted in the context of co-occurring physical health and TAND manifestations seen in TSC