First experience of a parents questionnaire to define therapeutic goals for ketogenic diet in children with difficult-to-treat epilepsy

Aims: Presentation of experiences with a parents' questionnaire to define therapeutic goals before starting ketogenic diet (KD) in children with difficult-to-treat epilepsy.

Methods: Retrospective Analysis of a 20-months period of KD in 24 patients (15 boys; 1.2–16 years, mean 3.8 y.) with difficult-to-treat epilepsy (focal epilepsy (66.7%), generalised idiopathic epilepsy (8.3%), etiologically not further specified epilepsy (25%)). Average anticonvulsive pre-treatment 6.4 anticonvulsive drugs (AED) (range 1–14 AED). 7/24 patients feed by gastrostoma (29.2%). Filling in a questionnaire before starting with KD by parents and ketogenic team separately defining therapeutic goals within the first three month. Criteria of continuation KD after three months: fulfilment of questionnaire's aims together with effect on EEG and seizure frequency. Responder (RS):reduction of seizure frequency ≥85% in comparison to four weeks before starting KD (RS). Documentation of seizure frequency as well as changes in cognition/attention in a diary by caregivers.

Results: Improvement in cognition/attention 20/24 (83.3%); better eating attitudes 22/24 (92%); 50% reduction in seizure frequency 20/24 (83.3%). Achievement of aims verbalized in the parent's questionnaire 20/24 (83.3%), therefore continuing KD besides reduction in seizure frequency was under 85%. After 6 months 16 patients (66.6%) and after one year still 8 patients are on KD. 3/24 did not complete the 3 months (12.5%). Side-effects (refusing food/liquid, apathy, nausea) occurred only during the adjustment phase in all patients and disappeared thereafter; on the long-run in 50% constipation; no aggravation of seizures.

Conclusion: In our group of children with difficult-to-treat epilepsy an open questionnaire helped us to decide more objectively about the continuation of a very restrictive diet in families normal course of life. Besides improvement in seizure frequency, also other aspects like further mental development or oral feeding should not be underestimated in the therapeutic decision in these patients.