Tomorrow is Epilepsy Awareness Day.
Our daughter Sophie, along with 22 million other people in this world, got diagnosed with epilepsy.
Late last year, after her second seizure, we started her on very low dosage of medication, when tests showed a 85% chance of recurrence. A third seizure earned her a ride in the ambulance and an increase in medication.
After her second seizure we started notifying people other then direct family and teachers. There is nothing to be ashamed of, it can happen to anyone. The stigma might be there, but the more people in her life know, the more they can do for her would the need arise. It became public knowledge when she had a recurring seizure right after the last school bell, when all kids are lining up for the school bus or parent pick-up. There were concerns and questions, but in a good way, we turned it into a teaching moment, for all of us.
Like most people diagnosed, there is no medical reasoning to be found. Other then her EEG, all tests have come back clear. It’s actually nice to be so ignorant about anything medical. It was only after the huge relief I saw on my husbands face upon learning the results of the first MRI scan, that I asked what they thought they could find: brain tumours. It sure puts things in perspective!
So we’re aware. Cautious, without suffocating her, setting up safe guards in place.
It puts you in a different world, a world of twice daily reminders for medication, medical alerts plans for school, anti-convulsion medication in your handbag, checkups with neurologists, paediatricians and radiologists. A big brother watching out for her. Making sure there is someone with her in the pool. And always on the lookout for the blank stare that precedes a new seizure. All have their own triggers, for Sophie it’s stress, heat, exhaustion and dehydration that we’ve worked out so far. The medication works for her, without the side effects, but even so, on a bad day one might still sneak up on us.
No matter what the day brings, we’re loving her for the person she is.
The funny, dreamy, bouncy, chatterbox with a wild imagination.
She’ll turn these challenges into strength, knowledge and empathy.
Instead of treating it as a setback, we’re making the most of it, special trips away where a consultation with the specialist is only part of the fun. An MRI scanner becomes a noisy rocket shooter, a trip to pathology a place to score balloons. Waiting, having a coffee, just with mum, no pesky brothers to share the cake with. We’re both secretly looking forward to these trips, just me and Sophie...
If they haven’t stopped seizing within 5 minutes, the ambulance personnel will have medication to help them out. Most will come out of it by themselves, they’ll be drowsy, words slurred and tired. In Sophie’s case she’ll be running and joking around within the hour.