I’ll never forget the words “The EEG shows your son has infantile spasms” but what came after is blurry. I remember crying but not feeling sure why. I had never heard of this before. I understood that the neurologist was telling me my son had epilepsy. Plenty of people have epilepsy, right? They live typical lives, right? So, why did I feel this deep sense of dread? It was only when I got home with my husband that we started to google what this meant and the words that jumped out at us filled us with terror:
“mental retardation”
“catastrophic”
“difficult to treat”
“medical emergency”
“brain damage”
“poor development”
“death rate: 17%”
The next two weeks make me well up just thinking about them. We had to write down every cluster of spasms, how long they lasted and what time they occurred while we upped the dose of the anti-seizure medication (Vigabatrin). We slowly saw our son slip away from us, becoming lethargic, sleepy and zombie-like yet on the 6th day of treatment the spasms abruptly stopped. My husband made the decision to rush back home to visit his dad who didn’t have long left and I stayed with my son to see the testing start. I’ll save that topic for another day though.
Even two years on this time in our lives is incredibly painful to think about. The fear, guilt and uncertainty were all terrifying. I thought I wouldn’t get through the day. I felt sick constantly. I would look at the blank eyes of my son and feel like I’d lost him while simultaneously feeling grateful to the doctors for treating my son with the right medication.
I won’t sugar coat things. This was a dark time in our lives but I know how important it is to share your story, no matter how dark it may be. If you’re reading this and you’re at the beginning of an infantile spasms diagnosis, it can feel extremely lonely and isolating. You probably feel as devastated and terrified as I did. I remember feeling like I was sitting at the bottom of a well, far from everyone and everything I knew. It felt like I didn’t have anyone to turn to until I found an incredible support group on Facebook. If you’re reading this and you need someone to talk to, please send me a message and I’ll try to help in any way I can. You are not alone.
