Sometimes It's Hard to Know If My Child Is Having a Seizure or Not
Epilepsy is estimated to affect more than 500,000 people in the UK, including my 5-year-old son, Brody.
Brody’s epilepsy makes me question a lot of things. The smallest of movements, memories, pre-diagnosis and even laughter. It can really play on your mind when you’re not sure if something is a seizure or not — because some seizures are easily missed, yet they can leave a lot of damage in their wake.
We discovered Brody was having seizures when he was 1 years old — and this was only because they were tonic-clonic ones and very noticeable. But because there are so many different types of seizures, I will always wonder if Brody had them when he was much younger and we weren’t aware he was having them.
Even now that he is 5 and with an epilepsy diagnosis, I still find myself questioning if a quick eye roll, a strange movement or laughing in his sleep is something suspicious. And because he is primarily undiagnosed, there is a part of me that sometimes wonders if epilepsy has caused his learning disability. I suspect we’ll never know.
Laughing was never something I ever associated with seizures. Then late one night when I was pregnant with our daughter, Brody was asleep next to me and began laughing hysterically. I turned around to face him and he started having a tonic-clonic seizure (I miraculously managed not to go into labor).
A month or so later, he was on our sofa laughing and the same thing happened: hysterical laughter followed by a tonic-clonic seizure. Something clicked, and I remembered the first time he was admitted to a hospital with seizures as a baby. He’d had five that day and it was about 11 o’clock at night and he was in his cot, half awake. He began laughing, and before we had time to question why, we were pulling the emergency cord and doctors and nurses were flying in.
When I thought about it, Brody had laughed before a lot of his seizures.
Naturally, I did what many mum’s do — Google. And from there I found out about gelastic seizures, which typically begin with laughter that is empty and hard to describe. Following the laughter, the person might then have another type of seizure. But the laughter can be a seizure on its own.
I felt sick to my stomach because it all sounded so familiar. Before some tonic-clonic seizures, Brody has always laughed without explanation. And although inappropriate laughter is common in children with autism like Brody, he laughs a lot in the middle of the night, and has done so since he was a baby. He is also prone to having seizures at night rather than during the day.
Sadly, I know I’m not alone in having the worry of sudden unexplained death in epilepsy (SUDEP) when he sleeps.
I have plenty of videos of Brody laughing at night on my phone going right back to when he was a baby, because I thought it was something cute he did. I took them to his neurologist who agreed it was unusual and an EEG followed, then a video telemetry EEG and then an MRI to check that he didn’t have hypothalamic harmartomas, which can cause gelastic seizures. The MRI didn’t show any evidence of them and as usual the EEGs didn’t provide any information — something that we’re used to happening, despite Brody having a diagnosis of epilepsy.
So we’re left in limbo, which is something we’re sadly used to, having a child with an undiagnosed genetic condition.
Brody still laughs most nights and we listen and watch his monitor, not knowing if he is laughing in his sleep or if it’s part of his epilepsy. Brody’s neurologist can’t say one way or the other — he just says that it’s suggestive of gelastic epilepsy.
Unfortunately, gelastic epilepsy isn’t easy to diagnose. We were offered the option recently of altering his medication to see if it stops the night time laughter but we have decided not to for now — because what if it’s not?
I hate the way epilepsy makes you question things that could be perfectly normal with your child. You can’t help it because a seizure can be something so subtle and you don’t want to miss it.
You want to know because you are all too aware of the harm they can cause.
The loss of skills.
But sometimes, it’s just so hard to know if it’s a seizure or not.
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