Early Infantile Developmental & Epileptic Encephalopathy


abnormal EEG

EIDEE treatment is based on the underlying cause. For example, if a particular chemical problem is found then certain vitamin therapies may be prescribed. If a genetic mutation is found in SCN2A or SCN8A, then certain medications in high doses could be helpful. Treatment options for EIDEE may include:

  • Anti-seizure medications
  • Ketogenic diet
  • Surgery if a focal abnormality is found on an MRI
  • Anti-seizure devices

Anti-seizure devices include VNS, RNS, DBS. This treatment is considered, although not typically used in infants. Caregivers should consider discussing newer precision therapies for certain cases. This type of therapy is unique to the person using them. For example, precision therapy for a person with EIDEE will factor in the root cause of their condition to help better treat their symptoms.  Additionally, patients usually need multidisciplinary care as they can have orthopedic problems, feeding issues, and vision impairment.


The outlook for infants with EIDEE is often poor. Many children progress to have infantile epileptic spasms syndrome (West Syndrome) or Lennox-Gastaut syndrome (LGS). Some children with EIDEE syndrome may die early in life usually due to lung infections related to severe disability. Those who survive are typically left with severe physical and cognitive disabilities. Children who are candidates for epilepsy surgery should be considered early, as this may lead to improved seizure control and developmental outcome.

Hope for children with EIDEE relies on the medical and research communities understanding more about the causes and what treatments may work best. The Rare Epilepsy Network (REN) connects families with research in these areas.

Authored By:

Charuta Joshi MD

on Tuesday, August 02, 2022

Reviewed By:

Elaine Wirrell MD

on Tuesday, August 02, 2022


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