“Our Life with Epilepsy” – Nathan

Hello again, CCDS family, sorry it has been a while since I have contributed to the blog, but I am thankful to have the chance to be talking to you again. As this is Epilepsy Awareness Month, I wanted to share some of my thoughts, feeling, and, most importantly, the lessons I am learning along the way. I tried to keep this blog post short but that didn’t work. I also tried to keep it honest, so I did not hold back.

Let me start by telling everyone what our journey with Epilepsy has looked like so far. Elijah, Simon, and Ezra started out with a few, relatively minor seizures between one and three-years-old. While these seizures, at least for Elijah, were initially considered febrile, their frequency in all three boys was enough to warrant the start of medication and a closer following by a neurologist. In all, these early seizures were nothing too bad. They scared us, but in the overall scheme of things, they were relatively short-lived and infrequent. After a few months, each boy seemed to grow out of them and move on to bigger and better things, though we did keep them on anti-seizure meds, just in case. We had no real worries. Then Elijah hit seven-years-old, and we met the monster. Ironically, on the way home from a neurology appointment, Elijah’s seizures returned, after just being told that Elijah seemed to be doing just great. We got our first good look at the monster we had previously ignored.

That year he had several seizures that got longer and longer. The first ones were thirty minutes to an hour, then multiple hours. Throughout half a dozen seizures, he was having single seizures lasting well over eighteen hours. I will be honest—we weren’t ready for this. When they started, I was out of town, and all we wanted to do was just get through it. In mid-November 2013, I made the two-and-a-half-hour drive home from the hospital after Simon got his G-tube placed. Ezra would be born in a matter of days, and things were a bit hectic. As we drove, I got the call that Elijah was in a seizure again, so I dropped off Simon with a neighbor and then went up to take over for the very pregnant Jennifer.

I remember sitting for hours in the Pediatric Intensive care unit as Elijah continued to seize and the medicine continued to be ineffective. It was calm and surreal. There was no screaming or panic, I just watched him, suctioned his mouth, and held his hand. But I know something now that I did not know then, something I didn’t learn until recently. I was doing it all wrong. I misjudged Epilepsy and was approaching it in the wrong way. I was lulled into a sense of security from the early minor seizures, so I took the doctor’s advice to just ride it out. Elijah recovered, and before much longer, the seizures stopped. We thought we had done it right, that this had finally passed, but in reality, we had not won the fight. We lost and didn’t realize it. Before his seizures, Elijah was making strides in his learning. He was vocalizing, outgoing, and a complete ball of unstoppable energy, but in the months after those prolonged seizures, that Elijah faded away from us. The best we can tell, the parts of his brain causing the seizures were just so damaged by the prolonged stress that they simply died. The monster we didn’t even recognize had taken the Elijah we knew, it had won. Since then, Elijah has done relatively well with his seizures, with only minor blips to keep us on our toes, but there are still times that we wonder what if we could have stopped them?

How then did we come to recognize the monster for what it was? That is thanks entirely to Simon. Simon’s seizure journey started just like Elijah’s. Minor seizure at a young age, and at seven came the real deal. Like Elijah, Simon’s seizures were incredibly prolonged and resistant to medication, but Simon had more of them. There was a month that Simon was transported to the hospital three times in a row, and, one time, he even started another seizure just as we were pulling up to the house after he was released. This was bad, and we knew it. But this time was different because we began to recognize the monster for what it was. We knew what it had done to Elijah. Now, seeing him with his brothers, who also have CTD, made Elijah’s losses abundantly clear. We knew this was not going to be a fairy tale fight, this was real. Over the next few months, Simon was transported to the hospital more times than we have actually kept track of. His breakthrough seizures went from monthly to twice a month, every other week, and then every week, with abnormal neurologic activity happening almost daily.

Simon is maxed out the few anti-seizure meds that actually seem to work, but even those are losing their effectiveness. The monster is winning, but we aren’t done. Right now, as I write this blog, Simon is at the hospital with Jennifer. He has EEG leads placed deep inside his brain as his seizure meds are removed. We are beckoning the monster. I am not saying we will win, because honestly, we may well lose this fight too, and with it the Simon that we know, but this time, one thing is for sure. I will be damned sure that we go down swinging rather than waiting and seeing. Epilepsy wants you to “wait and see”, it wants you to take a conservative approach because that is when it destroys, while you sleep and support, the monster steals.

Our story is not over. Simon, sword drawn, is in the fight like never before. He has already changed, and we face the genuine possibility that his battle may well be lost, and the old Simon may well be gone, but hope remains. Ezra stands just steps behind his brothers, not yet weary and not yet tested, but his seventh birthday is two days, in all reality, his test is at hand. But he is going into this fight better armed and better prepared than his brothers could possibly have been. Jennifer and I are steadying ourselves, the Epileptologists are already drawing up their plans, and Simon is gathering the information.

Monsters are real, my friends. They are real, and they are cruel, and they are heartless. They do want to take from us, and they will do so if we let them. I know this sounds dramatic, but it is absolutely true. I didn’t realize this until recently, and it is a critical lesson that I want everyone to learn. We can fight Epilepsy, and I honestly believe we can beat it, but we have to recognize it and start fighting early. Support CCDS testing as much as you can. Sign up for the CCDS Registry and help medical professionals learn and grow in their knowledge. Watch out for signs of a seizure and talk with a neurologist immediately if you are concerned. Once again, monsters are real, they must be confronted, and they will be destroyed. We can work together and end Epilepsy!

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