mother holding sleeping child

Berg et al, Epilepsy and Behavior, 97(2019), 44-50.

Children with early-life epilepsies (diagnosed before 3 years of age) can be challenging to manage for many different reasons.

They can have

Given that there have been advances in how to diagnose and treat these epilepsies, it is important to have an updated understanding of how these children do, particularly in the first year after their diagnosis. In doing so, we can give families a better understanding of how their children with early-life epilepsies will do. It will also identify future areas of research that will be important in improving care for these children.


The purpose of this study was to better understand how children with early-life epilepsies do in the first year following their diagnosis. The study looked at factors such as

  • Mortality
  • Whether seizures were drug-resistant (if more than 2 medications were needed to control seizures)
  • Whether the children went on to develop different seizure types
  • If their development declined

Description of Study

  • 775 children with a new diagnosis of epilepsy made at less than 3 years old participated in the study.
  • Children were recruited from 17 hospitals in the United States from 2012-2015.
  • Children were followed for 1 year after their diagnosis.

Summary of Study Findings

  • This study found that children with early-life epilepsies still have poor outcomes despite advances in diagnostic testing (neuroimaging and genetic testing) and standardized protocols for some epilepsies such as infantile spasms.
  • Approximately 1 out of 3 children (30%) developed drug resistance, meaning they still had seizures after having tried at least 2 medications.
  • Those who had epilepsy diagnosed in the first year of life and developmental concerns at time of diagnosis tended to have a more severe course.
    • Severe outcomes included early death (though in general still rare: 3% after being followed for 1 year) and developmental decline.
    • These outcomes usually occurred in children with an underlying genetic or metabolic condition.
  • They found that approximately 1 out of 2 infants (50%) were diagnosed with more well-characterized epilepsy syndromes, such as Dravet syndrome or infantile spasms. The other half, who were diagnosed with epilepsies that did not fit with a particular syndrome, still had similar outcomes.

What does this mean?

This study suggests that

  • Infants and toddlers who develop new-onset epilepsy still have guarded prognoses, regardless of whether or not they are diagnosed with a particular epilepsy syndrome (such as Dravet syndrome or infantile spasms).
  • Children that tended to do worse were younger (less than 1 year old) or had developmental concerns when they received the diagnosis of epilepsy.
  • We need more research in all types of epilepsy that is diagnosed at an early age to establish standardized treatments to improve these early outcomes.

Article published in Epilepsy & Behavior, August 2019.

Authored By: 
Lauren Sham MD
Authored Date: 
Reviewed By: 
Elaine Kiriakopoulos MD, MSc
Elaine Wirrell MD
Wednesday, October 9, 2019