Over the years, I’ve discovered that that the more I write about epilepsy, the more I have the chance to meet patients and families who are working to change many of the common misconceptions about seizures. From a group in China that is working to raise awareness about epilepsy in Hong Kong, to the father of a young girl with a rare epilepsy syndrome, the collective work that we are doing to de-stigmatize epilepsy seems to be slowly making its mark.
A few weeks ago, I received an email from Laura Gray, a mother whose oldest son was recently diagnosed with epilepsy. Instead of giving in to fear and frustration, Laura took the opportunity to write a feature article for a medical journal to educate others about epilepsy. Laura was excited to share both her article and personal story here as well. Read on as Laura shares her family’s story in her own words.
My Son: The Epileptic
Being a single parent of a 12 year old boy is never easy but when that boy has a lifelong condition like epilepsy things can be really tough. I am that mother and my son John was diagnosed with the condition when he was 8. This is our journey.
As a child
From the age of about 4 or 5 I used to notice that John would occasionally ‘space out’ for a couple of minutes. It was as though he couldn’t hear me and wasn’t aware of his surroundings. He’d stare into space and smack his lips. At the time I put it down to his age. He was a young boy with a vivid imagination and I thought he was just lost in his own little world. The rest of the time he was perfectly healthy and because I associated epilepsy with the tonic clonic seizures we see on TV, the thought that his space outs could be linked to that never crossed my mind. It wasn’t until he had his first seizure at the age of 8 that I made the link.
The first fit
The first time John had what many would describe as a ‘traditional’ epileptic fit we were at a local park. It was a hot day and John had been running around for a long time. As I sat on a bench chatting with another mother I saw him fall to the ground and as I rushed over I saw that he was jerking and convulsing on the ground. I was utterly terrified and had no idea what to do. My initial thought was that he was having some kind of heart attack but the other mother, who coincidently had a sister with epilepsy, immediately asked me if he suffered from the condition. Thankfully he came round after a few agonizing minutes and he seemed OK but we still rushed to the hospital to get him checked out.
At the hospital neurological doctors asked me if all kinds of questions. Had he suffered a recent head injury? Was he on any kind of medication? Had anything like this happened before? It was only when I mentioned his occasional space outs that they seemed confident that John had epilepsy. Still, they ran blood tests and an EEG before finally confirming the diagnosis. At the time I wasn’t sure how I felt. After the shock of seeing him collapse I was overwhelmed with relief that he wasn’t dying but the prospect of having to manage a condition and those fits terrified me. When we got home I did some research and tried to explain the condition to John but at 8 years old I’m not sure how much he took in. He knew something had happened in the park and that he’d had to have tests. He seemed to understand that he’d need to take medicine daily now. But all he was interested in was getting home to play on his computer game.
Life goes on
Since the initial fit 4 years ago John has suffered 6 more tonic clonic seizures. Each time I feel the familiar rise of panic in my chest but with each fit comes a greater acceptance of the condition and more experience in handling them. I put John in a position where he can’t hurt himself, remove any dangerous objects from around him and wait for it to pass. We work together to try and identify what triggered the seizure – usually it seems to be when he becomes overtired so ensuring he gets enough rest is important. John copes admirably with his condition. He is extremely organised and responsible when it comes to taking his medication doesn’t dwell too much. Recently he asked if he could go scuba diving with a group of friends when they visited the beach. Immediately I had to remind him of the dangers of his condition. If a diver were to have an epileptic fit underwater it would almost certainly be fatal. At times when he is unable to do something I can see the gravity of his condition overwhelm him and that’s hard. But he tries to stay positive and I am extremely proud of him.