During infancy through young adulthood seizures and subependymal giant cell astrocytoma (SEGA) dominate much of the medical journey. Seizures are still problematic for many and unfortunately several have developed refractory epilepsy that will remain challenging to manage indefinitely until we have better knowledge and resources to assist with this manifestation. EEGs will still be a common diagnostic approach routinely and for atypical changes such as changes in seizure type or frequency, change in behavior, unexplained sleepiness or vomiting. During this age span, a pediatric neurologist who is familiar with TSC should be part of your child’s healthcare team. Epilepsy (seizures) is frequently the main manifestation of TSC that leads to the diagnosis but not always. Even if your child presented with a TSC diagnosis and has not shown any signs of seizures, it is still clinically recommended to be evaluated during this phase as signs and symptoms of TSC change rapidly during these years due to normal growth and development. Learn more about epilepsy in TSC here.
