I scrolled through my posts this afternoon and clicked on Here we go again. I'm so glad I took the time to write all of that down. Those feelings and fears have somewhat faded. I don't flash to his tonic-clonic seizure when I sweep that part of the kitchen or put shoes in their cubby anymore. I leave him home now without too much thought. The thought is always, always there, but I pray every day to help keep him safe and allow him as much normal as possible at the same time. However, reading through it all brought me right back to that moment and reminded me of the emotional journey we've been all been on. That truly was just the beginning and I decided to take a minute and give a little update.
I'm happy to report Kaleb has not had any seizures since that night. He is just over eight months seizure free. I used to count the time Kaleb was seizure free as if it meant something. I felt the longer he went without a seizure, the chance of having another one went down. I learned the hard way that wasn't necessarily the case. Kaleb had been four years seizure free (two off meds). I thought he'd outgrown them. I thought we had gone through the seizure woods and stepped into the seizure-free-for-life sunshine. I was wrong. At one of our neuro appointments, our doctor told us that when it is someone's time to have a seizure they will have a seizure. To make matters worse, we never know if the meds worked and stopped working and a seizure occurred or if the meds never worked and it just wasn't that person's time to have a seizure. How am I supposed to wrap my head around that piece of information? I'm not sure I ever will. But, for now, he is seizure free and I'm grateful for that. He's driving again and living a normal life. I am terrified. Not gonna lie.
The road to now has not been easy. The meds the ER started Kaleb on is called Keppra. If you are in the epilepsy world at all, you've probably heard the term Keppra Rage. Our neurologist described it as an emotion magnifier. It took everything he was feeling and poured gasoline on it. He was hurting so much. It was heartbreaking and so very difficult for everyone. I won't go into details of that time here. It isn't really a place I want to revisit. However, I don't want to forget it either. It was such a difficult, dark time and some days I wasn't sure how we were all going to get through it. It. was. hard. But you know what? We made it through. We walked through it and I think we are all better for it. We spoke with our neurologist about changing his meds and began the switch. However, it ended up being a two-month process. You can't just stop one and start another. Slowly the rage left and he worked through what he was going through without the extra emotional fuel. He also reconnected with his birthmom during that time and I think it brought him a peace he really needed. That's an entirely different post that I most likely won't share--it's his story to tell.
Kaleb had six-month check with his neuro this week. I had six months worth of questions and one was if these new seizures were related to his first diagnosis or completely different. (He was diagnosed with childhood-onset absence seizures and in Feb 2018 he had partial complex and a tonic-clonic). He said Kaleb was just unlucky because most don't have both. That sucks. I'm really not complaining, though. So many live with uncontrolled seizures and deal with so much more. I keep you all in my prayers, by the way. I truly do. You fight the battle every single day and night. We call you warriors for a reason.
So, in our home, we live like epilepsy isn't hanging out in the closet, waiting for a moment to strike. We set alarms to help remember to take meds and send texts threatening to call 911 if he doesn't respond. Seriously, kid. You need to respond! ;) We make plans to go to the beach and spend hours attempting to figure out geometry while we countdown to the end of high school math! We watch for signs, hug our children tight, and pray our epilepsy guest stays comfortable in the closet.
