Table II.
Demographics and epilepsy characteristics of 742 affected persons at baseline
| Child characteristics | N (%) |
|---|---|
| Age, years, median (range) | 8.6 (0.3-49.8) |
| Age group | |
| 0-23 months | 84 (11.3) |
| 2-5 years | 182 (24.5) |
| 6-9 years | 142 (19.1) |
| 10-14 years | 152 (20.5) |
| ≥15 years | 182 (24.5) |
| Primary epilepsy syndrome | |
| Aicardi syndrome | 59 (8.0) |
| CDKL5 mutation | 18 (2.4) |
| Doose syndrome | 42 (5.7) |
| Dravet syndrome | 100 (13.5) |
| Dup15q mutation | 36 (4.9) |
| Hypothalamic hamartoma | 40 (5.4) |
| West syndrome | 38 (5.1) |
| Lennox Gastaut syndrome | 103 (13.9) |
| Ohtahara syndrome | 7 (0.9) |
| PCDH19 mutation | 26 (3.5) |
| Phelan McDermid syndrome | 26 (3.5) |
| SCN8A | 17 (2.3) |
| SYNGAP mutation | 11 (1.5) |
| Tuberous sclerosis complex | 123 (16.6) |
| Other encephalopathy or genetic mutation | 59 (8.0) |
| Other rare syndrome/diagnosis∗ | 37 (5.0) |
| Total seizure in previous 6 months | |
| None | 100 (13.5) |
| 1-5 | 75 (10.1) |
| 6-24 | 80 (10.8) |
| 25-100 | 109 (14.7) |
| 101-200 | 70 (9.4) |
| >200 | 245 (33.0) |
| Missing | 63 (8.5) |
| Current seizure types (not mutually exclusive) | |
| Tonic-clonic, myoclonic, and/or tonic | 497 (67.0) |
| Atonic (drop) | 264 (35.6) |
| Infantile/juvenile spasms | 257 (34.6) |
| Focal (complex or simple partial) | 447 (60.2) |
| Gelastic (seizure with laughing or crying) | 187 (25.2) |
| Missing | 126 (17.0) |
| Rescue medication at home | |
| Yes | 566 (76.3) |
| No | 154 (20.8) |
| Missing | 22 (3.0) |
| Nocturnal seizures | |
| Always or sometimes | 514 (69.3) |
| Rarely, never, or don't know | 228 (30.7) |
| Nocturnal seizure monitoring | |
| Audio monitor (with or without video) | 214 (28.8) |
| Monitoring device with an alert | 93 (12.5) |
| Share a bed with someone | 121 (16.3) |
| Share a room with someone | 62 (8.4) |
| Door left open | 108 (14.6) |
| Frequent checks or watching at bedside | 19 (2.6) |
| Seizure response dog | 2 (0.3) |
| No monitoring | 113 (15.2) |
| Missing | 10 (1.3) |
∗
Angelman (n = 2), congenital bilateral perisylvian syndrome (n = 2), electrical status epilepticus in slow wave sleep (n = 5), Jeavons (n = 3), KCNQ2 (n = 2), Landau Kleffner (n = 4), lissencephaly (n = 1), progressive or other myoclonic epilepsy (n = 4), Rasmussen's encephalopathy (n = 2), Ring 14 (n = 3), Ring 20 (n = 2), SCN2A (n = 3), SLC13A5 (n = 2), Unverricht Lundborg (n = 2).