Epilepsy Awareness Month

 November is Epilepsy Awareness Month. Teddy's seizure disorder means he fits into this month, another one to celebrate along with Rare Disease Day and World CDG Day. Epilepsy gets its own month, though, and certainly is deserving since it affects a large number of people in significant ways. 

Yet, strangely enough, I don't think of Teddy as someone with epilepsy most days. I think there's a level of denial for me despite the fact that he's had multiple seizures. I think perhaps it's because the seizures are the hardest aspect of his diagnosis. 

I know I've written recently about how life with Teddy is hard. The developmental and cognitive delays are tough, particularly on some days. But every seizure stops our world for as long as the seizure lasts, and the aftermath lasts days, if not longer. There are few things more terrifying that I can imagine occurring than watching your child losing control of their body, becoming unresponsive and sometimes failing to breath. Then picture that happening periodically, unpredictably.

For us, we know that illnesses, particularly with fevers, can trigger seizures. That means we're hypervigilant during flu season (or a pandemic) and any time Teddy is ill. We're on alert, watching for a fever, watching for signs of seizures. It's common for Dave to sleep with Teddy when he's ill, just in case, because there's always that fear of a seizure while he's sleeping that we don't catch.

Teddy recovers from most seizures remarkably well, bouncing back with no loss of skills or apparent lasting harm. However, he's stopped breathing during seizures. He's had multiple seizures last more than 5 minutes. He's been intubated because either the seizures disrupted his breathing or the medication to stop the seizures diminished his breathing to the point that was necessary ... to this day, I'm still not clear because he never became responsive from that series of seizures until hours later when he was quite agitated to discover a tube shoved down his throat. 

We're used to daily life with Teddy, and we're grateful that seizures aren't a part of daily life for Teddy. For others with his diagnosis, seizures are an every day occurrence. Rescue medications for them are a weekly or monthly need, as opposed to our rare times with Teddy. 

But we know seizure activity can change over time. The medications that work so well may not always work their magic for Teddy. Puberty is tough, with all the hormonal changes, and tends to increase seizure activity. 

I pray to God that seizures never become such a regular occurrence that they don't' phase me. We celebrate the periods between seizures, yet acknowledge that more are likely. Generally, we say, "It's really going to suck when he has a seizure again." It's been nearly 1.5 years without a seizure, and we're so grateful for that.

So what can you do during Epilepsy Awareness Month, instead of ignore it like I usually do? Check out: https://www.epilepsy.com/make-difference/public-awareness/national-epilepsy-awareness-month There's basic information on what a seizure looks like and how to respond if someone has a seizure. That basic information can be critically important, yet it's truly easy steps.