When Life Throws You a Curveball, You Hit It

"The weight of her diagnosis, the uncertainty of her future, hunched my shoulders and exhausted me while giving me energy all at once" - Unknown

For the first few years, up until very recently, I spent a lot of time trying to stop things from happening. I was certain that if I just read enough and researched enough, that I would uncover the magic ingredient. That ingredient could lead to no more constipation, no more vomiting, no more any symptoms that made Carter's life difficult. Summer 2018 made this obsession of mine even worse.

One of the most shared symptoms of GRIN1 children is epilepsy. It was something that was always top of mind, but until Carter was 2.5, it was also something we did not have to deal with. And I was so very thankful. We suspected seizures when he was first diagnosed, but we had no findings on a 45-minute EEG (something I would later find out is NOT at all the correct amount of time to diagnose). Unless you are constantly seizing, the 45-minute EEG is a waste of time and money.

Regardless of having no findings, I fixated on every one of his movements. If anything, it wasn't going to be something I missed because I wasn't paying attention. Summer 2018, I noticed a few instances of weird arm movements. Carter has what we lovingly call "Frankenstein Arms". If you have ever watched Frankenstein walk, he does so with his arms stretched out in front of him. That was how Carter first started moving his arms. He would stretch them out and move them up and down to hit his tray or toys. But they would constantly move up and down. A few times, watching him play, they would freeze for a millisecond and he would continue playing, up and down. If you weren't focusing on it, you never would have seen it. I decided to take a video and send to our neurologist. Especially because I felt like I was reliving Carter's birth year, and no one in my family believed me.

Besides the freezing for a millisecond, there were no other movements or signs suggesting something could be wrong. They also did not happen very regularly. We would go weeks not seeing any freezing. Still, I knew something was not right. At our visit with the neurologist, he could not be diagnosed from the video, though she agreed that something was off. She scheduled a 24-hour EEG at our local hospital and we prepared for our overnight stay.

We don't get hospitalized much, something I am grateful for, but when we do, our family comes out in the masses to support us. My mother typically stays with us during the day, my mother-in-law usually comes after work and lets Casey and I go to dinner. My dad, father-in-law and my grandmother visit when they can. We have a wonderful village. This particular stay, Casey and I stayed in the room together with Carter, which is incredibly uncomfortable. There is just not enough room for all of us even though we need each other throughout the night. My man was connected to all these wires and it is impossible to keep him still, which made keeping the damn thing on his head very difficult. I actually ended up sleeping in the crib next to him so he didn't get tangled up while he slept.

We received the results two days later. Though no actual seizures were detected, there were lots of epileptic spikes. Especially while he slept. As much as it was devastating to add this to our list of symptoms to manage, at least we found it quickly and could do as much as we could early on. We started a medication called Lamictal, which is also helpful for his mood. Long story short, though it tremendously helped him mood, the seizures were still happening. Same presentation, same length, no changes. After being on the medication for 2 months, we noticed a rash. A rash that you develop from taking a medication like Lamictal is deadly. Our neurologist had us cold turkey stop, which was the most horrible decision. Watching my child withdraw from a medication like this made us all miserable. He was vomiting, lethargic, not eating or sleeping. Being on the mediation seemed to give him worse side effects than these short seizures he was having.

At this point, I knew I had a choice to make. A large majority of my time researching was spent on CBD. If you are unaware of what CBD is, it is known as Cannabidiol. It is one of over 100 different cannabinoids found in the Marijuana plant. I knew it was something I was willing to try for Carter, originally for his mood, but now with epilepsy. I purchased a brand called Palmetto Harmony a few months before the epilepsy diagnosis and it sat in my cabinet because I was so scared to start it. The journey to find the right dose, the right brand, the right times to take, was so consuming. It was a commitment, and I was ready to make it. Before we started the new medication recommended to us, Zonegran, I started CBD on my own. We ended up using CBD in tandem with the Zonegran, but we immediately saw results. My irritable, agitated, ornery child was laughing and smiling and interacting with us.

I will add that this is not an easy process and it is VERY easy to get discouraged. Too much CBD can make him irritable, while not enough can also make him irritable. We pressed on for months until we found a dose that worked. My obsession started yet again. I was determined to stop these seizures from happening. Each time we hit a growth spurt, each runny nose, each day he was overtired, we had to adjust dosing and I KNEW that was the dose. They are DONE! I was wrong every single time. 

As tiring as this was, I felt in my heart that I made the right decision.

I cannot verbally explain the feeling of watching your child seize and knowing there is nothing you can do to stop it. You watch, you pray, you time it. His little body flings itself all over the place, it’s hard for him to catch his breath, his muscles unintentionally freeze every few minutes. And you can do nothing. 

He is trapped. For however long this seizure lasts, he is trapped. He sees you, you see him. He can’t tell you what he feels, you wonder if he even knows what’s happening. Is he scared? Does it hurt? 

It is one of the worst parts of this disorder and I intend to try anything within my power to make his life, not just livable, but enjoyable.