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

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.

Research highlights
► After more than 10 years of follow-up of 19 patients with LKS, 4 have normal language.
► There was great symptom heterogeneity with respect to seizures and language deficit.
► Parents had to argue strongly to obtain a Landau–Kleffner diagnosis and adequate help.
► The diagnosis resulted in better understanding and more appropriate help.