I thought that I would write a few paragraphs about where we are now with our new journey in the world of epilepsy.
If you didn’t know we are on that particular journey, read this: E is for Epilepsy
Jake has been on medication to control his seizures for a week now. We have started with a quarter dose, going up to a half dose after four days, etc. So far, he is tolerating life on medication very well. He always takes the medication without a fight, for which I am very thankful. This morning, he was a little sad about it and yesterday, he told me that he didn’t need to take it anymore because he was “all better”. One of those heart squeezing moments as a mom is when I had to tell my five year old that for a very, very long time, he is going to have to take medicine.
The bad news is that he is still having seizures. He is averaging about one a day. He knows when they are happening, so he can tell me for sure now that he had one. That is a huge help since I can only document the seizures that I can verify are happening, not the ones I just think are happening.
Our goal is still seizure free. I have now joined a few online groups and it gives me so much hope to see kids of varying ages holding signs that say “Seizure free for 378 days”. Hope is so essential these days.
The good news is that the medication might be working more than we thought. The problem with “absence seizures” is that they are hard to catch. While I would never in a bazillion years wish grand mal seizures, the kind of misfiring in the part of the brain that cause people to fall on the ground and shake, they are very obvious when they are happening. The neurologist told us that she suspected that he is having many more than we realized. Since you have to be literally looking at him when they happen, they are hard to see and document.
The reason I think that the medication might already be working and slowing some of those absence seizures is because his behavior has changed quite a bit. He has been much calmer, he is sometimes back to his funny and easy going self, he has been able to “listen and obey” with greater frequency, and there are fewer meltdowns and crying jags. I feel like I’m seeing a glimpse of the old Jake on his return journey to us. Since he is quite a verbal child, he was able to tell us exactly how he feels during a seizure. He describes it as his brain going to sleep or sometimes like it is raining inside his head. And, they hurt him. So, the logic would go that if he is having those nasty feelings subside, his behavior will probably get better. I can’t remember the last time I had the flu and was super fun to be around, so I can only imagine that the way he is feeling has been a major contributing factor for his rough behavior.
His teacher has given me more good reports than bad, which all by itself is enough to make me plan a trip to Disneyland to celebrate.
Jake is still tired and a little cranky and sometimes a little green around the edges, but I know all too well that medication is hard to adjust to, even if it is overall doing it’s job.
I’ve been really sick for the last two weeks and have been watching a couple shows on Netflix about medicine in the early 1900’s. I am so thankful that we live in an era where epilepsy is not something that would have sent Jake to an institution. It’s no longer something to be ashamed of or to hide. We have come such a long way in the last 100 years and I’m truly thankful that there are doctors who understand epilepsy as best as they can and that there are 15+ medications for us to try if the one he is on right now doesn’t end up working.
I still haven’t had enough time to work through the emotions of all of this. I’ve had glimpses of that particular carnival fun house and I’m not looking forward to it.
But, as I recently told my mom, our family can be summed up this way: We are the ones who know all too well that it is darkest before dawn but we really can’t stop laughing at the dark.
It seems that Jake has inherited my sense of humor because when I asked him what he wanted to take to Show and Tell this Friday, he said he wants to take his MRI film so he can show everyone that he has a brain.