In this edition of the Canadian Journal of Neurological Sciences, Datta and Whitney present survey results of Canadian practices regarding Lennox–Gastaut syndrome (LGS). ^{Reference Datta and Whitney1} The results reveal that LGS is poorly recognized and often inadequately treated. These findings are not surprising. There is no diagnostic test for LGS; as for many syndromic diagnoses, it requires careful consideration by astute clinicians to recognize a distinct pattern. LGS is markedly heterogeneous, characterized by multiple drug-resistant seizure types, cognitive impairment and specific electroencephalography features. ^{Reference Specchio, Wirrell and Scheffer2} The etiology of LGS is diverse, encompassing structural brain abnormalities, single-gene disorders, acquired brain insults, metabolic disorders and more. So, what is the benefit of grouping this diverse group of individuals with drug-resistant epilepsy?

Identification of LGS enables optimized care for a highly complex and severe epilepsy. Diagnosis opens access to syndrome-specific therapies, including anti-seizure medications (ASM) with specific indications for LGS. Without diagnosis, prescribing restrictions and insurance coverage may limit access to evidence-based therapies. Diagnosis encourages the use of treatment algorithms, which prioritize rational polytherapy, broad-spectrum agents and limiting the use of ASM known to exacerbate LGS seizure types. ^{Reference Samanta, Bhalla and Bhatia3} LGS identification may trigger consideration of nonmedical therapies, including epilepsy surgery, neuromodulation and ketogenic diet. In some jurisdictions, it may result in referral to comprehensive epilepsy programs that improve access to these treatment options.

As with many complex epilepsy syndromes, LGS is more than seizures. Comorbidities are frequently cited as more troublesome than seizures for individuals with LGS and caregivers. ^{Reference Cross, Benitez and Roth4} LGS identification promotes comorbidity screening and multidisciplinary support focused on cognition, behavior and quality of life. Given the likelihood of persistent seizures into adulthood, diagnosis may facilitate long-term planning for individuals and caregivers.

Datta and Whitney report that adult diagnosis of LGS is particularly challenging, coupled with limited access to programs for transition to adult care. ^{Reference Datta and Whitney1} Further education of adult providers regarding pediatric-onset drug-resistant epilepsy syndromes is needed to support adult care for this complex population. While early LGS diagnosis may facilitate interventions to reduce seizure burden during critical development, adult LGS diagnosis is also valuable. Just like children, adults with LGS benefit from syndrome-specific approaches to seizure treatment and comorbidity management.

The Canadian neurology community should respond to Datta and Whitney’s call to action. For individuals with LGS and their caregivers, closing the gaps identified in Canadian LGS care is not simply a matter of nomenclature; it is a necessary step toward more coordinated, evidence-informed and compassionate care.