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...

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Bibliographic Details
Published in:Epilepsy & behavior 2011-06, Vol.21 (2), p.153-159
Main Authors: Cockerell, Ine, Bølling, Grete, Nakken, Karl O
Format: Article
Language:English
Subjects:
Acquired epileptic aphasia
Age of Onset
Child
Child, Preschool
Cognition Disorders - diagnosis
Cognition Disorders - etiology
Delivery of Health Care - methods
Delivery of Health Care - statistics & numerical data
Education, Special - methods
Education, Special - statistics & numerical data
Electroencephalography
Female
Humans
Interpersonal Relations
Landau-Kleffner Syndrome - complications
Landau-Kleffner Syndrome - diagnosis
Landau-Kleffner Syndrome - epidemiology
Landau-Kleffner Syndrome - psychology
Landau–Kleffner syndrome
Language Disorders - diagnosis
Language Disorders - epidemiology
Language Disorders - etiology
Language Tests
Longitudinal Studies
Male
Neurology
Neuropsychological Tests
Norway - epidemiology
Parents - psychology
Prognosis
Rare diseases
Rare disorders
Retrospective Studies
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Summary: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.
ISSN:1525-5050
1525-5069
DOI:10.1016/j.yebeh.2011.03.019