Landau-Kleffner syndrome in Norway: long-term prognosis and experiences with the health services and educational systems

Abstract

We have conducted a retrospective study based on the medical records of 19 children with Landau-Kleffner syndrome and semistructured interviews of their parents. There was considerable heterogeneity in the children's symptoms. Eleven children were followed for more than 10 years (mean=14.4 years); four have normal language, four have moderate language problems, and three have no functional verbal language today. Late-onset language decline, short duration of the initial aphasic period, and marked fluctuations in speech abilities appeared to be associated with a positive outcome with respect to future language skills. The parents reported having to argue strongly with the health authorities and educational system to obtain a correct diagnosis and receive adequate help. Their main concern was not being taken seriously when they expressed their worries, and they expressed a strong wish for someone who could ensure that appropriate support measures were implemented and who could coordinate assistance.