To study the management practices for West syndrome(WS) in the South Asian subcontinent. 

One-hundred-twenty-five responses were received[Response-rate:56%; India(76/165), Pakistan(22/22), Myanmar(9/11), Sri Lanka(6/8), Bhutan(5/10), Nepal(3/5), Bangladesh(2/2), and outliers(2/165; UK and UAE)]. Around 60% of responders observed male preponderance and an approximate lead-time-to-treatment of 4weeks-3months. The commonest etiology observed was static structural insult. 

Preferred first-choice drug (countrywise): India-ACTH(50%), oral steroids(38%), combination (hormonal+vigabatrin;8%), valproate(7%);  Pakistan-oral steroids(45.5%), vigabatrin(32%), ACTH(4.5%); Myanmar, Sri Lanka, and Nepal-oral steroids preferred; Bangladesh-ACTH(2/2); Bhutan- oral steroids(2/5), vigabatrin(3/5), ACTH(not used). ACTH and vigabatrin are not available in Myanmar and Nepal. The most commonly used preparation and regime for ACTH is long-acting synthetic corticotropin and maximal-dose-at-initiation-regime in India, Sri Lanka, and Bangladesh. In Pakistan, most responders follow a gradually-escalating-regime. Maximum dose of prednisolone ranges from 2-8mg/kg/day or 60mg/day- most common response from India:3-4mg/kg/day; Pakistan, Bhutan, and Bangladesh:2mg/kg/day; Sri Lanka, Nepal and Myanmar:5-8mg/kg/day or 60mg/day. The total duration of hormonal therapy (including tapering) ranges from 4-12weeks(59/81). Most responders consider cessation of spasms for 4weeks as complete response(55/125) and advise EEG(106/125) to check for hypsarrhythmia resolution. Difficult access to pediatric EEG in Bhutan and Nepal is concerning. Around 50% of responders follow a standard-operating-protocol for management. More than 95% of responders felt a need for more awareness.

This survey highlights the practices and challenges in the management of WS in South Asia. These include a longer lead-time-to-treatment, non-availability of natural ACTH, licensing issues with vigabatrin in most countries, preference for oral steroids/ vigabatrin over ACTH(except India and Bangladesh), difficult access to pediatric EEG, and non-availability of ACTH/vigabatrin in some countries.