Abstract:Results Nine children (six girls) had received Nusinersen since June 2017. They had a median (range) age of 22 (9-89) months. The median (range) number of Nusinersen doses was 5 (4-6). Seven children receive BiPAP and one child is ventilated via tracheostomy. The total number of days in hospital since diagnosis was 665 with median (range) hospital days of 64 (4-177) days. This included HDU 52 (4-116) days and PICU 4 (0-103) days. This equates to each child spending a mean of 32% of their life on HDU/PICU. Thre… Show more
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