Idiopathic generalized epilepsy with generalized tonic-clonic seizures (IGE-GTC): a population-based cohort with >20 year follow up for medical and social outcome.

Children with idiopathic generalized epilepsy with only generalized tonic-clonic seizures (IGE-GTC) were selected from the Nova Scotia Childhood Epilepsy population-based cohort. All were neurologically and intellectually normal with generalized spike-wave on EEG. Of the epilepsy cohort of 692, 40(5.8%) had IGE-GTC. Follow-up averaged 22.2+/-7.6 years. Twenty-seven (75%) had a complete terminal remission (seizure-free, off medication) for 16.1+/-8.6 years. There were no deaths or intractable seizures. For those >21 years of age at follow up (N=30), major adverse social outcomes were psychiatric diagnosis 8 (27%), no high school graduation 12 (40%), pregnancy outside a stable relationship 11 (38%), living alone 7 (23%), unemployment 10 (33%) and criminal conviction 2 (7%). Satisfaction with their lives, friendships and social activities were reported by 55-65%. IGE-GTC is a recognizable, relatively benign epilepsy syndrome with complete remission in 75%. Learning problems and unsatisfactory social outcome are unfortunately common.