A day to remember…

Two years, ten months and seven days ago around this time Edith fell backward and bumped her head and had an hour long tonic clonic seizure.

I was placing her on the floor and positioned her absentmindedly and she fell backwards between my legs and bumped the back of her head. She cried for about ten minutes and appeared to recover. We started to give her some tea (my heart is pounding as I write this like it was yesterday) and she tried to be sick; all the colour had drained from her face and she was grey. I immediately knew that something was really wrong, and without ever really facing a medical emergency before we bundled her into the car and drove 2 mins to the Doctors surgery around the corner.

As we ran into the doctors with her and explained, Edith began to twitch. The doctor came out and immediately we were taken into a room and Edith was led on the bed and an oxygen mask placed on her face. Her eyes glazed and streaming her whole body began to jerk. An ambulance was called immediately and arrived imminently. This was our first experience of paramedics and I could not believe how unbelievably calm they were. I just wanted to scream “we need to leave now” but instead I put my full trust in them and all we could do was watch. As diazepam was administered and a discussion as to weather an air ambulance was needed we just looked on feeling completely helpless and completely out of control. A decision to blue light is in the ambulance was made and Edith continued to seize in the ambulance on the way. She lost all control of her bodily functions and was in another world as she just stared blankley into space. I remember the paramedic telling me (as he was sliding around on his knees trying to tend to Edith) to talk to her as she could still here me but I didn’t know what to say; I thought we were loosing our precious girl, I was frozen.

We arrived at A&E and were escorted into the resus room and we sat on what I can only describe as bar stools🤦🏻‍♀️at Edith’s bedside. The team of Doctors and nurses were overwhelming but absolutely, breathtakingly unbelievable! Edith was intubated so that her body could rest and once stable, taken for a head scan to determine if there was any damage. We were taken to a small room and I paced up and down going over and over the scenario in my head. I had caused this awful turn of events and Edith wouldn’t be here if it wasn’t for me. I felt sick, desperate and beside myself.

Edith returned from her scan and was transferred to PICU. We were seen by a neurologist and he explained that there was no visible damage to Edith’s brain from the trauma and that her seizure probably would have happened anyway, the shock just bought it on. The relief was overwhelming but at the same time we were faced with the fact that we now had a child that suffered with Epilepsy.

Edith was in PICU for 24 hours and then transferred onto a ward. In the days that followed Edith underwent an EEG to check her brain activity and it revealed epileptic activity and she was placed on an anti-epileptic drug called Leviteracetam or Keppra.

I will never forget that day as long as I live, it was terrifying.

Since that day Edith has been on a low dose of Keppra and has continued to be seizure free till this day. We have always had a niggle that the seizure she had was a one off (thank goodness) and at a neurology check up today, Edith’s neurologist has decided to wean Edith off of the anti-epileptic drug over the next two weeks. We are both excited and terrified for this change. We are hoping that Edith stays seizure free and we are all quietly confident she will.

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