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Overactive, impulsive, and restless behaviors are very common in tuberous sclerosis complex (TSC). Even though manifestations typically have lower rates in adulthood than childhood, it may be seen across age, developmental level, sex, and genotype (TSC1 or TSC2). There are many possible reasons why people have difficulties in this cluster, including physical health, developmental, or environmental reasons. However, many people with these difficulties may meet the criteria for attention deficit hyperactivity disorder (ADHD), a common neurobehavioral disorder.

ADHD is usually first diagnosed in childhood and often lasts into adulthood. It is characterized by inattention, impulsivity, and, in some cases, hyperactivity. These symptoms usually occur together; however, one may occur without the other(s). There are three major types of ADHD:

  1. Predominantly Inattentive Type: It is hard for the person to organize or finish a task, to pay attention to details, or to follow instructions or conversations. They are easily distracted or forget details of daily routines.
  2. Predominantly Hyperactive-Impulsive Type: The person fidgets and talks a lot and has trouble sitting still for long. They feel restless and have trouble with impulsivity. Someone who is impulsive may interrupt others a lot, grab things from people, or speak at inappropriate times. It is hard for them to wait their turn or listen to directions.
  3. Combined Type: Symptoms of the above two types are equally present.

Individuals with ADHD and TSC benefit from the same evidence-based treatment strategies for ADHD as recommended in the general population The consensus panel recommends the following:

Overactive/Impulsive cluster recommendations

  • Overactive and impulsive behaviors are common in TSC and should be monitored in all individuals to ensure early detection and treatment
  • All individuals with overactive and impulsive behaviors should be considered for a clinical diagnostic assessment for ADHD.
  • ADHD in TSC should be treated using the same evidence-based approaches and interventions for the general population, including behavioral supports and pharmacological interventions.
  • When someone has moderate to severe ADHD, treatment with methylphenidate or other stimulant medications should be considered.
  • Even when ADHD is accompanied with epilepsy, intellectual disability, autism, or other physical or TAND manifestations, ADHD symptoms may respond appropriately to treatment.
  • Further research is required to improve the understanding of overactivity, restlessness, and impulsivity in TSC.
Reviewed by Ashley Pounders, MSN, FNP-C, Director of Medical Affairs, TSC Alliance, November 2023.

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