Etats Generaux of children epilepsies in 2001. Volume 16, issue 1, Janvier-Février-Mars 2004


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Service de neuropédiatrie, Hôpital Necker‐Enfants malades, Paris et Inserm U29, Marseille Inserm U472, Epidémiologie et biostatistiques, Villejuif Association pour la recherche, la prise en charge et l‘insertion des jeunes épileptiques

281 questionnaires were completed by parents of epileptic children during Etats Generaux in 2001. They mainly reflect severe epilepsies first because 72% of them still experience seizures and 53% have therapeutic problems, second because 85% present with learning difficulties and 57% have schooling problems. Difficulties for diagnosis are less frequent, from 23% to 41% according to age and region. By contrast, the difficulties for the child being accepted in a specialized institution increase with age to reach 23% of the patients over 18 years, with a bigger proportion in region Ile de France (32%); one third of the parents complain about difficulties for their children to be taken in care from teenaging and adulthood, the half of them in Ile de France. A large proportion (40%) also regret their poor information about epilepsy. Therefore, the most important needs for Epilepsy in France concern Education, Institutions and Information.