International Consensus Update LGS management

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Strategies & expert guidance from leading epileptologists for personalised seizure management1​

Five expert epileptologists from France, Spain, Italy, and the UK have published updated recommendations for the diagnosis and management of LGS, focusing on evidence from clinical trials, real-world practice, and expert opinion.

 

Updated pharmacological treatment algorithm for a newly diagnosed patient with LGS or patients with LGS already receiving ASM therapy1​

Adapted from: Auvin S. Epilepsia Open. 2025;10(1):85–106.

Felbamate [unlicensed] may be considered as adjunctive therapy under the supervision of a neurologist with expertise in epilepsy when all other treatment options are unsuccessful.

Please refer to the SmPC for each respective drug for the most up-to-date information on their individual dosing.

Flowchart outlining treatment pathways and decision points for Lennox-Gastaut syndrome.

LGS Characteristics & Diagnosis​1

Onset: Typically in childhood (3–5 years).​

Clinical Features: Multiple seizure types (characterized by multiple types of drug-­resistant seizures), evolving EEG changes, impaired cognition and behavior, and poor quality of life due to refractory seizures.​

Diagnosis Challenges: Evolving seizure types and EEG patterns complicate diagnosis; early diagnosis is critical for optimal outcomes.​

Prognosis: Drug-resistant seizures often persist into adulthood; low likelihood of seizure freedom; increased risk of status epilepticus and SUDEP.

Management Principles1

Individualised Approach: Management must balance seizure control, treatment burden, side effects, and evolving patient needs.​

ASMs: Emphasis on antiseizure medications (ASMs) with novel mechanisms, especially highly purified cannabidiol (CBD) and fenfluramine.​

Algorithm: A tailored approach is essential for managing the multiple seizure types and comorbidities commonly associated with LGS, ultimately aiming to optimize therapeutic outcomes in this challenging patient population. ​

Recommendations​1

Regular Review: At least annually by a neurologist experienced in complex epilepsies and drug interactions.

Reassessment: Ongoing review of diagnosis and treatment plan using EEG (including sleep EEG), MRI, and genetic testing.​

Awareness: Recognise that classic EEG features may evolve or disappear; reassess clinical and EEG findings as needed.​

Genetic Counselling: Offer if appropriate​.

NICE & HSE recommendation of the use of Fintepla

Fintepla® (fenfluramine) is indicated for the treatment of seizures associated with Dravet syndrome and Lennox-Gastaut syndrome as an add-on therapy to other antiepileptic medicines for patients 2 years of age and older.2

Safety profile of Fintepla®

The most commonly(≥1/10) reported adverse events are: Decreased appetite; Fatigue; Diarrhoea; Somnolence. Please refer to the Summary of Product Characteristics for further details of adverse events. Fintepla® should be initiated and supervised by healthcare professionals with experience in the treatment of epilepsy. Fintepla® is prescribed and dispensed according to the Fintepla® Controlled Access Programme (CAP).

The CAP has been created to: 1. Prevent off-label use in weight management in obese patients 2. Confirm that prescribing physicians have been informed of the need for periodic cardiac monitoring in patients taking Fintepla®

Please refer to the SmPC for further information.

Learn more about Fintepla dosing

 

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Fintepla®▼ (fenfluramine) is indicated for the treatment of seizures associated with Dravet syndrome and Lennox-Gastaut syndrome as an add-on therapy to other antiepileptic medicines for patients 2 years of age and older.1

Rystiggo®▼ (rozanolixizumab) is indicated as an add-on to standard therapy for the treatment of generalised myasthenia gravis (gMG) in adult patients who are anti-acetylcholine receptor (AChR) or anti-muscle-specific tyrosine kinase (MuSK) antibody positive.

Rystiggo currently not reimbursed on the NHS in Scotland.

Zilbrysq®▼ (zilucoplan) is indicated as an add-on to standard therapy for the treatment of generalised myasthenia gravis (gMG) in adult patients who are anti-acetylcholine receptor (AChR) antibody positive.

Abbreviations:

DS, Dravet syndrome; LGS, Lennox-Gastaut syndrome.

References:

1. Auvin S, Arzimanoglou A, Falip M, et al. Refining management strategies for Lennox-Gastaut syndrome: Updated algorithms and practical approaches. Epilepsia Open. 2025;10(1):85-106.

2. Fintepla® Summary of Product Characteristics.

GB-FA-2600053 | September 2026