Six years ago I pretty much knew nothing about Epilepsy. The only things I really knew I’d learnt from watching either ER or Casualty!
I assumed that all seizures were the Grand Mal AKA tonic clonic variety and the person would fall to the floor and convulse until medicine was administered. That was as far as my education went. I could tell you about sex education, including the ever important getting a condom over a banana (Those, were the days).
I can only assume it’s because unless you deal with epilepsy, you don’t really DEAL with epilepsy. I have friends who at some point in their lives have had epilepsy, it is now either being controlled by medication or they’ve been lucky enough to grow out of it!
This morning we were woken at 5.50am to Thomas smacking his hand against my back, telling us he was having a seizure. We have come to the conclusion that he feels pins and needles in his hands, it’s his early warning sign. But the poor little guy looks terrified as he scrambles around the bed trying to understand what he’s woken up to! Unfortunately it was three times this morning!
The first time I had to deal with epilepsy was when Thomas was just over 18 months old. It was 3am, I’d come in from working an event and he wouldn’t settle. For a couple of hours, he just seemed distressed, my instinct was telling me that something was going on so I placed him in our bed and he settled. I woke about an hour later to what appeared to be Thomas choking. I sat him up, his lips were blue and he showed all the signs of choking. I rubbed his back gently as he appeared to be sleeping and within a minute he had coughed. This happened another two times that night.
Fast forward to 18 months and he is checked into hospital with a cluster of seizures, which were appearing every 15 minutes. He looked like he was choking! It became very obvious that the night choking was more likely to be seizures (how bad did we feel!?). It was the first time I had ever called an ambulance for my son and it wouldn’t be the last!
But three years on and it’s like part of our lives. Two lots of medicine twice a day, emergency medicine on standby if he has a full seizure (that has been known to happen) and a specialist who sees Thomas every three months!
We don’t know what triggers them, when they are coming and how they will be but we cope with them (well I do, can’t say the same for my husband).
One thing that I’ve learnt is no two seizures are the same! Thomas has had pretty much most seizures from absent to full to partial and not one of them have been the same.
He’s on medication and for the most part it helps, a few sneak through on occasions.
As some people know, it’s not a nice experience watching your child or partner or anyone convulse in front of you, whether it be for 30 seconds or 30 minutes! I don’t think it’s anything you can get used to, but you learn to deal with the situation.It most certainly isn’t funny or entertaining. I’ve heard stories of people taking pictures while they watch someone convulsing, just because they wet themselves or they looked like they were on something (Oh the joys of social media). I struggle to record Thomas’ seizures for medical reasons!
I go through the checklist in my head.
- Is he safe?
- How’s his breathing?
- Is there anything in his mouth?
- Is he conscious?
- All while timing…
- Is the emergency medicine on standby?
The relief when he coughs! He will usually sleep and we then begin the process of wondering whether it will be followed by another one or two as they do like to come in threes!
Today was just one of those days! Saying that, we are a far cry from how it was three years ago when every Sunday we would be expecting one. They are part of our lives, just like they are part of millions of others.