Olivia had her first seizure just before she was 5 months old. This came out of the blue and in a child who was otherwise healthy and hitting her milestones. We were told at that point it may not happen again and after a secondary seizure, 5 days stay in hospital with EEG and ECG we were discharged. She remained seizure free for 30 days when again we had a cluster of seizures which resulted in a diagnosis of epilepsy and DNA being taken to test for the SCN1a gene mutation as her seizure presentation and onset was typical for Dravet syndrome/SCN1a.
Olivia has gone on to have over 200 seizures in varying severity- despite being on 4 daily medications and trying 2 more. She has 6 different seizure types ranging from absences, myoclonic jerks, focal and tonic clonic seizures. Olivia has been ventilated three times due to status seizures which they were unable to stop, lasting 1.5-almost 2 hours until she was sedated and ventilated to terminate them. She’s had two respiratory arrests and other occasions of respiratory distress requiring ambulance intervention with bagging and oxygen.
Olivia doesn’t let her diagnosis define her and she is very resilient despite other difficulties with behaviour, mobility and autism spectrum but she still is achieving and making progress. However, Dravet syndrome does still continue to affect every aspect of her life and causes daily challenges for her and it is a life limiting and life threatening condition. She is also at a higher risk of SUDEP.