Mabel was 9 weeks old when she had a spontaneous seizure, whilst we were out at soft play. It was overwhelming seeing her tiny body seize. An ambulance was called and Mabel was taken to hospital, where she proceeded to have further cluster seizures.
After copious tests over several days, consisting of; a CT head, lumbar puncture, MRI, blood tests and EEG, Mabel was diagnosed with focal epilepsy. Mabel’s EEG had shown epileptiform waves. Mabel was started on Keppra and 2 weeks later, had further cluster seizures, which resulted in a trip to rhesus. After a tweak of her medication and the addition of rescue medication, we were discharged home.
As Mabel’s parent, a significant memory is the moment the doctor diagnosed Mabel with Epilepsy. ‘The results show she has epilepsy- the neurologist said’. My heart sank and I felt sick. ‘What does this mean for Mabel? Will she have more seizures?’, ‘do other children get epilepsy this young?’, ‘what has caused this? – is it something we’ve done?’ ‘what support is available? we don’t know enough’, ‘will her learning be impacted?’ We had so many questions..
On reflection, we knew very little about epilepsy. You hear the word epilepsy and think of seizures and photosensitivity.. but we’ve come to learn it’s so much more than that.
As a parent of a child with epilepsy, my world has been flipped. The anxiety that comes alongside diagnosis can be almost debilitating. But with the knowledge and correct support, it is achievable.
Mabel has now been seizure free for 5 weeks and long may this continue. Myself and Mabel are currently raising money for the epilepsy society, participating in the 100 miles in 100 days to raise money for such an overlooked condition.
Written by Mabel’s Mum Lauren Hill
Instagram handle is laurenhill94
