Epilepsy is part of our routine, just like brushing our teeth or getting ready for school, explains Layla’s Mum, Patricia. It does not determine or dictate our days. Luckily for Layla, she has an epilepsy syndrome that she seems to be growing out of. Nothing stops her; she is smart, funny and fierce.
Layla has Panayotopolous Syndrome, or at least that is the closest diagnosis we could find with the care of her doctor from Yorkhill hospital. She was diagnosed at 3 years of age. Her seizures occur about 45 minutes into her sleep pattern and last for around 12 minutes. She was having 3 to 4 a month at it’s peak and about one a month off peak. She has no memory of them and, thankfully, no brain damage either.
One Year Seizure Free
December 2015 marked one year of seizure freedom, but her last EEG showed that the epilepsy was still there. We are waiting to see if the syndrome has gone altogether, although we have been advised that it can sometimes develop into absence seizures. We are doing a waiting game right now with her next appointment in March. I have seen quite a few moments where she unexpectedly zones out and has no awareness or recall but we will have to wait and see.
The only affect it has in her life is that she needs a lot of repetition when learning anything new, 16 to 20 times on average. As a single mum working full time, I rely on Layla and the school to guide me in this aspect, then I ramp
up the learning games until it sticks. The only other disruption is that she is understandably exhausted the next day after a seizure. She still goes to school or partakes in activities, but we make allowances for a tired little girl.
Like most kids, Layla loves music, always singing and dancing. We heard about a free classical music day for kids at Glasgow Royal Concert Hall and went along. Layla was feeling proud as punch of herself as she made her first notes on the cello.
We are lucky; we have a healthy, energetic child who loves to problem solve, to swim, to go on adventures, and who loves handicraft. Just a regular little girl with many school friends and bright ideas. We are even luckier that she got the epilepsy she did, it is very predictable and allows us to have a routine that allows Layla to enjoy every aspect of her childhood to the fullest.