Language

English

Publication Date

2-2-2026

Journal

The Orphanet Journal of Rare Diseases

DOI

10.1186/s13023-026-04229-1

PMID

41622169

PMCID

PMC12955028

PubMedCentral® Posted Date

2-2-2026

PubMedCentral® Full Text Version

Post-print

Abstract

Introduction

Infantile Epileptic Spasms Syndrome (IESS) is a severe epilepsy in children between one month and two years of age. Urgent referral of possible IESS cases from pediatricians and family physicians who care for children to neurologists for diagnosis and treatment has been shown to significantly improve patient health outcomes. Yet, a comprehensive list of IESS clinical features is lacking. We conducted a systematic review of studies to report IESS clinical features.

Methods

Articles from the MEDLINE Complete and Embase databases were searched from the earliest years of databases availability (1979) to July 31, 2024. We followed the Preferred Reporting for Systematic Reviews and Meta-Analysis guidelines to conduct this systematic review with 140 articles, all of which were descriptive studies.

Results

We identified 25 clinical features among the 3,786 children with IESS who were included in 140 studies. No single clinical descriptor was reported in over half of the children. The six most commonly reported clinical features included flexor spasms (48.28%), mixed spasms (30.19%), extensor spasms (10.49%), symmetric spasms (8.49%), asymmetric/focal spasms (6.50%), and head nodding (2.48%).

Conclusions

There were a wide variety of IESS presentation descriptions. This review will help future researchers to develop an IESS screening tool that can assist pediatricians and family physicians who care for children in making urgent referrals.

Supplementary Information

The online version contains supplementary material available at 10.1186/s13023-026-04229-1.

Keywords

Humans, Spasms, Infantile, Infant, Child, Preschool, Infantile Epileptic Spasms Syndrome, Clinical features, Pediatricians, Systematic review

Published Open-Access

yes

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