My Son has Epilepsy

Okay, here we go.

From my Wife

Friday afternoon, Everett woke up from a nap and was immediately unresponsive to me. Still breathing but head was locked to the side, eyes glazed over, and not responding to anything. Immediately I knew this was a seizure. We called for an ambulance and when we got to Kosair, he had another seizure. This time, just like the ones you see in movies, with convulsions and twitching. He finally stopped after the doctors gave him three rounds of medicine.

This was an hour total of two seizures and being in an unresponsive postictal state. We were at the hospital for the next 24 hours. He had blood work, CT scan, EEG, and an MRI. His blood work was clean meaning he didn't get into any medicine or anything to make him seize. He did not have a fever so it was not a febrile seizure. He has no allergies aside from seasonal. There is purely no known cause for what happened.

Therefore, our sweet, beautiful, perfect baby boy was diagnosed with Epilepsy. His EEG showed that his brain is making a lot of potential seizure activity with no cause. Our miracle is that after seizing for way, way too long… his CT and MRI came back normal and the seizures did not seem to do any brain damage. My baby was been through so much the past three days and he is just worn out completely. Matt and I are beside ourselves with anxiety and worry as to what our life may look like now as we are now always on watch for a seizure with no known triggers at this time.

I'm absolutely terrified of seeing my son go through that again.. I honestly don't have a lot of words right now. I am just asking for anyone who believes in prayer, to put my boy in your prayers please. He does not deserve to go through this. And please, hug your babies for me. NOBODY deserves to see their happy, carefree child like this..

My thoughts

I am absolutely terrified. Everyday is going to be scary. The goal is to not change anything from what we were doing before, but it's very very difficult. At any point another seizure could happen - and that's the scary part. I'll never know when another would happen. I mean, what happened over the weekend was the first big seizure that was known to us and when Everett was taken to the hospital in an Ambulance, that was a real wake up call.

Through the stay at the hospital, I thought we'd get away with this being a one time thing.. but it seems that is not going to be the case. Our doctor's told us that this is something we're going deal with, probably for the rest of his life. And that was really hard to hear. Maybe it was naiveté on my part, but I thought this was just going to be a one time thing. That doesn't sound like that is going to be the case.

Everyday since that first seizure, I have struggled to keep calm. My anxiety is through the roof and I'm constantly checking on Everett to make sure tha the is okay.

THIS IS SO HARD.

It's so hard to see your son, who was doing great before and didn't have many things that were concerning. And now, we have to watch him more and more closely. Even sleeping is scary.

Everything is just scary, and I'm scared all the time.

That's the update.

I love you so much Everett, you're our baby boy, and you're so special. We are going to get through this. You're an amazing boy.