Epilepsy Wasn’t A Term In Our Vocabulary

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Six months ago, epilepsy wasn’t a term we used in our vocabulary. Olivia had had one serious seizure two years ago, but nothing since then….or so we thought.

When you have a child with a complex medical condition, sometimes symptoms get overlooked because you think you are witnessing a symptom already associated with a diagnosed condition. Very disheartening as a parent to realize this wasn’t the case.

Olivia’s seizures went undiagnosed for about a year. We began to notice a pattern in her sleeping behaviour; she would awake the same time every night with episodes of vomiting. We originally took this for reflux. Then we began seeing behaviours when Olivia would drift off to sleep. These behaviours often appeared as twitching, arching, repetitive sounds, periods of semi-consciousness, and crying.

After several EEGs, one sleep deprivation and a video EEG, Olivia was officially diagnosed as having Epilepsy; a chronic seizure disorder usually associated with a neurological condition. Olivia already having Cerebral Palsy put her at a higher risk of developing Epilepsy.

So…the last six months have been a bit of a blur to say the least. I’ve joined several Epilepsy forums, trying my best to understand what my daughter is feeling prior, during and after the seizure has passed. Olivia is nonverbal so it is impossible for her to communicate what her body is experiencing, so finding the right medication to control her seizures was essential. I am happy to say we have!

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Throughout these past few months, I have learned so much; like for instance, seizures suck…BIG TIME! It never gets easier seeing your child’s body twitch, stiffen or move uncontrollably. I honestly hold my breath every time Olivia has a seizure. The dangers they present are a terrifying reality and an important reason as to why awareness and research are so important in the field of Epilepsy.

Epilepsy is now part of our life. Olivia’s seizures are now controlled, but we understand eventhough controlled, she can still have the occasional incident especially when she’s sick. So today, if you see someone wearing a purple ribbon, know it’s in support of Epilepsy Awareness.

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