Table 1 Clinical characteristics of the TSC Cohort
| Â | TSC patients (n = 42) | |
|---|---|---|
Mean age (years) ± SD | 11.36 ± 4.19 |  |
Range | 4–19 |  |
| Â | n | (&) |
Gender | ||
 Male | 19 | (45.2%) |
 Female | 23 | (54.8%) |
Diagnostic criteria met for TSC | 42 | (100%) |
Tubers (brain MRI) | 37 | (88.1%) |
Never had epilepsy | 13 | (31.0%) |
Well controlled epilepsy (seizure free) | 16 | (38.0%) |
Active epilepsy | 13 | (31.0%) |
 One or more seizures/day | 3 | (23.1%) |
 One or more seizures/week | 8 | (61.5%) |
Sporadic seizures | 2 | (15.4%) |
Seizure types | ||
 Infantile Spasms | 4 | (13.8%) |
 Focal seizures | 19 | (65.5%) |
 Infantile Spasms + Focal seizures | 2 | (6.9%) |
 Generalized seizures | 4 | (13.8%) |
 Antiepileptic treatment | 28 | (66.7%) |
 Monotherapy | 11 | (39.3%) |
 Polytherapy | 17 | (60.7%) |
Neurosurgical treatment for epilepsy | 3 | (7.1%) |
Subependymal giant cell astrocytoma (SEGA) | 10 | (23.8%) |
 Neurosurgical treatment for SEGA | 2 | (20.0%) |
 SEGA treated with Everolimus | 6 | (60.0%) |
 Stable SEGA on brain MRI | 2 | (20.0%) |
Received IQ assessment | 42 | (100%) |
Median IQ ± SD | 74.48 ± 28.05 |  |
Range | 20–134 |  |
 Normal IQ | 17 | (40.5%) |
 BIF | 10 | (23.8%) |
 Mild ID | 4 | (9.5%) |
 Moderate ID | 8 | (19.0%) |
 Severe/profound ID | 3 | (7.1%) |
Received formal psychiatric assessment | 12 | (28.6%) |
 ASD | 4 | (33.3%) |
 ADHD | 6 | (50.0%) |
 Anxious/Depressed Disorder | 2 | (16.6%) |
Additional support in school (i.e. IEP) | 28 | (66.7%) |
SLD | 5 | (11.9%) |
Low self-esteem (per parents’ report) | 11 | (26.2%) |
Very high levels of stress in families | 16 | (38.1%) |
Very high levels of stress between parents | 18 | (42.9%) |