There is limited literature on eating-related difficulties and disorders in tuberous sclerosis complex (TSC), but difficulties with eating do present in individuals with TSC. Eating difficulties 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).
Sleep difficulties are common in children and adults in the general population but are more pronounced in TSC. 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) or a “consequence” (e.g., autism-related rigid sleep routines, mood and anxiety-related insomnia, waking due to nocturnal seizures, or adverse effects of medications).
Identifying the root cause of eating and/or sleep manifestations is a priority first step.
The consensus panel recommends the following:
Eat/sleep cluster recommendations
- Eating difficulties do occur in TSC and could be related to a range of TAND and physical health issues. Therefore, eating difficulties should be monitored on a regular basis.
- As eating difficulties may be associated with a range of factors, it is important to have a comprehensive evaluation to inform an appropriate intervention plan. Interventions may include non-pharmacological and pharmacological strategies, depending on the causes of the eating difficulties.
- There are no dietary supplements or restricted/special diets with an evidence-base in TSC to improve any TAND behavior. The ketogenic diet is used as an intervention for refractory seizures in TSC, but not as a dietary intervention for TAND.
- Sleep difficulties are common in children and adults with TSC and should be monitored on a regular basis.
- Sleep difficulties may be a ‘cause’ and/ or a ‘consequence’ of some TAND or other neurological manifestations, for example sleep problems could lead to behavioural problems OR nocturnal seizures can lead to night-time waking. This ‘bidirectional’ association should therefore be considered during evaluation and intervention planning.
- 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.
- Once biological causes have been managed or ruled out, non-pharmacological intervention strategies should always be tried first before any pharmacological strategies. For example, sleep education, and sleep hygiene practices should be considered before pharmacological strategies (e.g., melatonin or similar medications).
- More targeted research on eating and sleep difficulties in TSC is needed.
Reviewed by Ashley Pounders, MSN, FNP-C, Director of Medical Affairs, TSC Alliance, November 2023.
