Cillian’s Story
Cillian was 7 months old when he had his first seizure. I was visiting my parents for the week and my husband was on a flight to New York for work. It happened suddenly and unexpectedly. Cillian began a full tonic clonic seizure after waking from a nap and continued to seize in the ambulance and then in the emergency department of Templestreet Hospital. The doctors struggled to get it under control and I thought I was going to lose him. It finally stopped, but that was the beginning of a new direction in life for us.
We were discharged from Templestreet after 4 days of extensive investigations and antibiotic and antiviral IV treatments for Cillian. Enterovirus was found in his lumbar puncture culture, explaining his fever. We were told it was a febrile seizure and given brief advice on what to do if another seizure should occur in the future. There was no follow up. Cillian had another seizure a month later with another hospital admission with similar sentiments around febrile seizures. We were so hopeful he would grow out of it.
On our third admission we met with a wonderful paediatrician who followed up with referral to a Paediatric Neurologist. Three months after his first seizure, Cillian’s epilepsy was confirmed on EEG. But that was still just the beginning. Our neurologist requested blood tests which were sent to the UK. When these finally came back 4 months later, our worst fears were confirmed, Cillian has an SCN1A mutation and a diagnosis of Dravet Syndrome.
Initially Cillian had a tonic clonic seizure every 3-4 weeks. Over time we found a combination of medications that have worked very well for him and he has only had four seizures over the last two years. Cillian is 3 and a half years old now and we know we’re very fortunate with his seizure control considering his diagnosis.
Dravet Syndrome is so much more than seizures. We celebrate all Cillian’s hard-earned milestones and achievements no matter how small. Cillian is such a little superstar, he’s very social and loves playing with his big sister. He attends regular therapies, and in between COVID restrictions we have a busy schedule of medical appointments. He is attending ECCE preschool with AIMS support and he is getting on so well. The creche are fantastic and very supportive with the additional supervision and support he needs.
We use a video monitor with movement detection and a heart rate monitor for Cillian at night, we supervise him all the time. It’s hard for friends and family to understand the level of care needed for our children or the emotional toll this takes. As parents, it’s been helpful for us to link with other families with similar experiences. Cillian’s diagnosis has changed everything for us. It has changed my perspective on life, on motherhood, and on caring for my child. We never expected this to be our journey. For me looking to the future can be very overwhelming, instead it’s about managing each moment.
