I never thought I would become complacent about epilepsy. When Aine was first diagnosed I remember the sick, sinking feeling. We knew in our hearts, we were told it was highly possible, but you hope don’t you?
All that said we have become quite used to the seizures and adapted as they have changed over her lifetime. Looking back to the start they were quite innocuous. They could have easily been passed off as something entirely different if we weren’t looking out for them. She used to go blank, gulp and pat things. She would flush in red patches, her lips turn a red wine colour and after about a minute or so she’d be back with us, but very sleepy. Up until she was three, that’s how we knew seizures. Then she had her first tonic clonic and there was no missing that. I remember that I was hysterical. I honestly didn’t know what was happening. I was sleeping on her floor at the time as she’d been restless. At first I thought she was choking. I was looking for her dummy thinking the teat had come off and lodged in her throat. The noise was like choking. An ambulance came really quickly and a very calm and experienced paramedic took over, saw what was happening and administered rescue medicine. I was in shock. Crying. Unable to focus. Shouting and rambling that she was dying.
We got used to it. Well we did in the moment. I would often have a little cry after things had calmed down but we got used to the lead up signs; poor appetite, behaviour more challenging, bad sleep, and we would be waiting for it to happen. She always had an aura. She would stare, hold her ear and say she was poorly for a few moments and then she would go into the seizure. Start the timer, get the rescue meds, grab the phone, wait for seven minutes, give the rescue meds, wait three minutes and if it hadn’t stopped, dial 999. We used to go to hospital every time until a Doctor asked why we called an ambulance, she had rescue meds, we didn’t need to come in. That was a bit shocking, and relieving at the same time. I was cross because this was my baby, the most precious thing I had ever held, and he was dismissive. It’s no big deal. It’s just a seizure, stop wasting NHS dollars. And then the relief; no sitting around in Assessment Units. No waiting for meds or discharge notes. So we learnt to manage ourselves. Very well in fact. And it was better to be at home; seizure ends, sleep it off, everyone comfortable in their safe place.
Then came a new seizure, probably about age seven looking back. This was scary. She screamed. Screamed like there was a lion chasing her. And she twisted around, over and over and over. Wrapped in sheets, or wires when we were in hospital once. And this went on for a long while. Up to ten minutes before we could give rescue medicine. This continued until present day, we still have these episodes. But again we became ‘used’ to them. We knew the pattern and we rolled with it. In fact, whilst the seizures became a little more expressive, the need for rescue medicine became less and less. This is a major improvement because recovery, or the post ictal phase, is so much quicker and Aine doesn’t get the headaches that she used to that would often make her vomit. She reacts badly to vomiting!
And then this last few days, she’s thrown us a curve ball. We’re not sure if it is indeed a seizure; based on what we know and the doctor seeing a video, we are pretty sure it is what is called a ‘non convulsive status seizure’. So she is very vacant, expressionless, able to answer simple questions, but slowly and slurred. Unable to walk or even sit up without support. And sick. And the horrid thing is we can’t give her anything to stop it until it’s confirmed. And to confirm it she needs to have an EEG, be in status seizure when she’s having the EEG, and we have to go to Alder Hey, during office hours, when there is a free slot, meaning the definitive diagnosis is pretty slim.
Yesterday she started to have these symptoms at 1pm and at 10pm she was still displaying them. And I was scared. And whilst she seems a little brighter today, I’m still scared. I’m scared that this isn’t a one off. That this is Aine’s future. Scared about what this means for medication, her schooling, her life. Scared for her siblings and how it will affect them. And scared for me and MrM because it’s so hard seeing your baby in this state.
There’s a motivational quote that does the rounds from time to time. It says ‘so far you’ve survived 100% of your worst days, you’re doing great’ and it’s true. You learn coping mechanisms. So whilst I’m catastrophising now ‘she’ll never go to school again’ ‘I’ll have to give up my job’ ‘we’ll have to get a new wheelchair and a converted car’, I know that epilepsy has made warriors of us all in the McD house, and, as we are forced down the alternative fork in the road ahead of us, we will find our way. We’ve got an excellent track record!