Background Epilepsy has a pervasive impact on the lives of people with intellectual disability and their carers. The delivery of high-quality care is impacted on by the complexity and diversity of epilepsy in this population. This article presents the results of a consensus clinical guideline process. Results A Delphi process identified a list of priority areas for the development of evidence-based guidelines. All guidelines were graded and consensus on scoring was achieved across the guideline group. Conclusion There is a dearth of high-quality evidence from well-constructed studies on which to

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Lamotrigine was an effective and well tolerated drug for this special patient group, especially when combined with valproic acid.

LEV is an effective and generally well-tolerated drug for this patient group, especially in focal and multifocal epilepsy.

There is little knowledge about the effects of topiramate in intellectually impaired epileptic patients. This open prospective study compares seizure frequencies during a 3-month period of topiramate add-on therapy (after 3 months of titration) compared with a 3-month baseline period. An intention-to-treat analysis was made on the first 24 consecutive topiramate-treated adult patients (residents of the Bethel epilepsy centre, therapy-resistant epilepsy, intellectual impairment of different degrees, one half with neurological deficits). The responder rate (at least a 50% reduction in seizure frequency) was 37.5%. One patient became completely seizure-free during post-evaluation (up to 24 months). Efficacy was not different between different epileptic syndromes or seizure types (case number too small). Responders had topiramate dosages above 200 mg/day and serum concentrations above 2.2 micrograms/ml. Six patients (25%) experienced serious neuropsychiatric complications such as confusion and severe deceleration of thinking and acting, up to complete helplessness (at topiramate dosages from 50 mg/day to 900 mg/day and serum concentrations from 2.2 micrograms/ml to 8.0 micrograms/ml). Preexisting brain damage may enhance the risk of unwanted central nervous effects.