Draft Guidelines for the Treatment of Infantile Epilepsy Syndromes: Comments Requested

06/24/2025

The American Epilepsy Society (AES) has released a comprehensive draft clinical practice guideline that provides evidence-based recommendations for the pharmacologic, surgical, and dietary treatment of epilepsy syndromes in infants aged <36 months. The guideline updates a previously published systematic review conducted by ECRI with funding from the Patient-Centered Outcomes Research Institute (PCORI). The AES is currently inviting public comment on the draft guideline through June 30, 2025. Feedback can be submitted via the AES website prior to the planned final approval and publication of the guideline later this year.

The guideline was developed by a multidisciplinary panel of experts including neurologists, epileptologists, pharmacists, and neurosurgeons, as well as patient representatives including advocates, caregivers, and family members. The process followed the GRADE (Grading of Recommendations, Assessment, Development and Evaluations) framework, drawing on systematic reviews and expert consensus. Recommendations address 3 categories of treatment for infantile epilepsy: pharmacologic, surgical, and dietary.

Several epilepsy syndromes in infants are discussed in the draft guideline including hemimegaloencephaly, Rasmussen encephalitis, Sturge-Weber syndrome, perinatal stroke, and more. Primarily, the recommendations raised in the guideline are conditional because of low-certainty evidence. However, the AES has included 2 strong recommendations:

  1. Hemispherectomy/hemispherotomy surgery is strongly recommended for infants and children aged 1 to <36 months who are appropriate candidates diagnosed with holohemispheric drug-resistant epilepsy secondary to select structural pathologies, including hemimegaloencephaly, Rasmussen encephalitis, Sturge-Weber syndrome, perinatal stroke, and hemispheric cortical dysplasia.
  2. Intralobar, multilobar, or focal resections or posterior disconnections are strongly recommended for infants and children aged 1 to <36 months drug-resistant focal or lesional epilepsy.
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