Retrospective analysis of presymptomatic treatment in Sturge–Weber syndrome

Abstract Background Ninety percent of infants with Sturge–Weber syndrome (SWS) brain involvement have seizure onset before 2 years of age; early‐onset seizures are associated with worse neurological outcome. Presymptomatic treatment before seizure onset may delay seizure onset and improve outcome, a...

Full description

Saved in:
Bibliographic Details
Main Authors: Chelsea B. Valery, Isabelle Iannotti, Eric H. Kossoff, Andrew Zabel, Bernard Cohen, Yangming Ou, Anna Pinto, Anne M. Comi
Format: Article
Language:English
Published: Wiley 2024-03-01
Series:Annals of the Child Neurology Society
Subjects:
Online Access:https://doi.org/10.1002/cns3.20058
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1850184784838393856
author Chelsea B. Valery
Isabelle Iannotti
Eric H. Kossoff
Andrew Zabel
Bernard Cohen
Yangming Ou
Anna Pinto
Anne M. Comi
author_facet Chelsea B. Valery
Isabelle Iannotti
Eric H. Kossoff
Andrew Zabel
Bernard Cohen
Yangming Ou
Anna Pinto
Anne M. Comi
author_sort Chelsea B. Valery
collection DOAJ
description Abstract Background Ninety percent of infants with Sturge–Weber syndrome (SWS) brain involvement have seizure onset before 2 years of age; early‐onset seizures are associated with worse neurological outcome. Presymptomatic treatment before seizure onset may delay seizure onset and improve outcome, as has been shown in other conditions with a high risk of developing epilepsy, such as tuberous sclerosis complex. The electroencephalogram (EEG) may be a biomarker to predict seizure onset. This retrospective clinical data analysis aims to assess the impact of presymptomatic treatment in SWS. Methods This two‐center, Institutional Review Board–approved, retrospective study analyzed records from patients with SWS brain involvement. Clinical data recorded included demographics, age of seizure onset (if present), brain involvement extent (unilateral versus bilateral), port‐wine birthmark (PWB) extent, family history of seizures, presymptomatic treatment if received, Neuroscore, and antiseizure medications. EEG reports prior to seizure onset were analyzed. Results Ninety‐two patients were included (48 females), and 32 received presymptomatic treatment outside of a formal protocol (five aspirin, 16 aspirin and levetiracetam; nine aspirin and oxcarbazepine, two valproic acid). Presymptomatically treated patients were more likely to be seizure‐free at 2 years (15 of 32, 47% versus 7 of 60, 12%; p < 0.001). A greater percentage of presymptomatically treated patients had bilateral brain involvement (38% treated versus 17% untreated; p = 0.026). Median hemiparesis Neuroscore at 2 years was better in presymptomatically treated patients. In EEG reports prior to seizure onset, the presence of slowing, epileptiform discharges, or EEG‐identified seizures was associated with seizure onset by 2 years (p = 0.001). Conclusion Presymptomatic treatment is a promising approach to children diagnosed with SWS prior to seizure onset. Further study is needed, including prospective drug trials, long‐term neuropsychological outcome, and prospective EEG analysis, to assess this approach and determine biomarkers for presymptomatic treatment.
format Article
id doaj-art-e29241007ae34cb398fbead4c5ec2335
institution OA Journals
issn 2831-3267
language English
publishDate 2024-03-01
publisher Wiley
record_format Article
series Annals of the Child Neurology Society
spelling doaj-art-e29241007ae34cb398fbead4c5ec23352025-08-20T02:16:56ZengWileyAnnals of the Child Neurology Society2831-32672024-03-0121607210.1002/cns3.20058Retrospective analysis of presymptomatic treatment in Sturge–Weber syndromeChelsea B. Valery0Isabelle Iannotti1Eric H. Kossoff2Andrew Zabel3Bernard Cohen4Yangming Ou5Anna Pinto6Anne M. Comi7Department of Neurology Kennedy Krieger Institute Baltimore Maryland USADepartment of Neurology Boston Children's Hospital Boston Massachusetts USADepartments of Neurology and Pediatrics Johns Hopkins University School of Medicine Baltimore Maryland USADepartment of Neuropsychology Kennedy Krieger Institute Baltimore Maryland USADepartment of Dermatology and Pediatrics Johns Hopkins School of Medicine Baltimore Maryland USADepartment of Radiology, Boston Children's Hospital Harvard Medical School Boston Massachusetts USADepartment of Neurology Boston Children's Hospital Boston Massachusetts USADepartment of Neurology Kennedy Krieger Institute Baltimore Maryland USAAbstract Background Ninety percent of infants with Sturge–Weber syndrome (SWS) brain involvement have seizure onset before 2 years of age; early‐onset seizures are associated with worse neurological outcome. Presymptomatic treatment before seizure onset may delay seizure onset and improve outcome, as has been shown in other conditions with a high risk of developing epilepsy, such as tuberous sclerosis complex. The electroencephalogram (EEG) may be a biomarker to predict seizure onset. This retrospective clinical data analysis aims to assess the impact of presymptomatic treatment in SWS. Methods This two‐center, Institutional Review Board–approved, retrospective study analyzed records from patients with SWS brain involvement. Clinical data recorded included demographics, age of seizure onset (if present), brain involvement extent (unilateral versus bilateral), port‐wine birthmark (PWB) extent, family history of seizures, presymptomatic treatment if received, Neuroscore, and antiseizure medications. EEG reports prior to seizure onset were analyzed. Results Ninety‐two patients were included (48 females), and 32 received presymptomatic treatment outside of a formal protocol (five aspirin, 16 aspirin and levetiracetam; nine aspirin and oxcarbazepine, two valproic acid). Presymptomatically treated patients were more likely to be seizure‐free at 2 years (15 of 32, 47% versus 7 of 60, 12%; p < 0.001). A greater percentage of presymptomatically treated patients had bilateral brain involvement (38% treated versus 17% untreated; p = 0.026). Median hemiparesis Neuroscore at 2 years was better in presymptomatically treated patients. In EEG reports prior to seizure onset, the presence of slowing, epileptiform discharges, or EEG‐identified seizures was associated with seizure onset by 2 years (p = 0.001). Conclusion Presymptomatic treatment is a promising approach to children diagnosed with SWS prior to seizure onset. Further study is needed, including prospective drug trials, long‐term neuropsychological outcome, and prospective EEG analysis, to assess this approach and determine biomarkers for presymptomatic treatment.https://doi.org/10.1002/cns3.20058epilepsypresymptomatic treatmentSturge–Weber syndromevascular malformation
spellingShingle Chelsea B. Valery
Isabelle Iannotti
Eric H. Kossoff
Andrew Zabel
Bernard Cohen
Yangming Ou
Anna Pinto
Anne M. Comi
Retrospective analysis of presymptomatic treatment in Sturge–Weber syndrome
Annals of the Child Neurology Society
epilepsy
presymptomatic treatment
Sturge–Weber syndrome
vascular malformation
title Retrospective analysis of presymptomatic treatment in Sturge–Weber syndrome
title_full Retrospective analysis of presymptomatic treatment in Sturge–Weber syndrome
title_fullStr Retrospective analysis of presymptomatic treatment in Sturge–Weber syndrome
title_full_unstemmed Retrospective analysis of presymptomatic treatment in Sturge–Weber syndrome
title_short Retrospective analysis of presymptomatic treatment in Sturge–Weber syndrome
title_sort retrospective analysis of presymptomatic treatment in sturge weber syndrome
topic epilepsy
presymptomatic treatment
Sturge–Weber syndrome
vascular malformation
url https://doi.org/10.1002/cns3.20058
work_keys_str_mv AT chelseabvalery retrospectiveanalysisofpresymptomatictreatmentinsturgewebersyndrome
AT isabelleiannotti retrospectiveanalysisofpresymptomatictreatmentinsturgewebersyndrome
AT erichkossoff retrospectiveanalysisofpresymptomatictreatmentinsturgewebersyndrome
AT andrewzabel retrospectiveanalysisofpresymptomatictreatmentinsturgewebersyndrome
AT bernardcohen retrospectiveanalysisofpresymptomatictreatmentinsturgewebersyndrome
AT yangmingou retrospectiveanalysisofpresymptomatictreatmentinsturgewebersyndrome
AT annapinto retrospectiveanalysisofpresymptomatictreatmentinsturgewebersyndrome
AT annemcomi retrospectiveanalysisofpresymptomatictreatmentinsturgewebersyndrome