Keppra Caleb: Dealing with Childhood Epilepsy
I took this photo a few minutes after Caleb had his very first documented seizure. This was three years ago, in our backyard wading pool.
I firmly believe that God often prepares us for future events. Ever since college, I have witnessed lots of different kinds of seizures in many different people. There are so many different kinds of seizures that a person can have!! The full-body convulsions that most of us think of are just one of the many ways that people can experience seizures. I have seen those, but I’ve also known a couple of people that just passed out. I’ve even had a friend that had such short seizures, you barely even noticed that it had happened. Then there are absence seizures, where a person just stares off into space. There are partial seizures, where only part of the body convulses. The list goes on and on.
That day, in the pool, Caleb was standing next to me, and I suddenly noticed that his eyes were crossed, as he stared off into space. “Caleb,” I said, “Caleb, Caleb!” and I snapped my fingers in front of his face.
I was very puzzled, when suddenly, he came to, and his eyes uncrossed. For the next 10 or so minutes, he was an extraordinarily hyper version of himself, acting super, super silly. Of course, he was 4 years old, so you expect a little silly, but the thing is Caleb has always, even before medication, had a somewhat nonchalant personality. That day he was climbing the walls and dancing all over the place.
Relieved that he had snapped out of it, I moved on, but it took me a while to admit to myself that Caleb had had a seizure.
Later, after I’d gotten the three boys dried off and squared away, Caleb settled down into a recliner for a nap, in the living room. Caleb was always an excellent napper. He has always, even before medication, required more sleep than Joshua did. Caleb is a huge kid, in the 95th percentile for height, and about that for weight.
While Caleb was napping on the recliner, I heard a strange, choking type noise, and I looked over at Caleb. He was gagging or something. Then his head started shaking, in a rhythmic pattern. Then his entire body started shaking. I stared at him in horror and fear for a few minutes, but I knew there was really nothing I could do.
Alan was in the basement with Joshua, and I kept calling him, but by the time he came upstairs, I was holding Caleb in my arms, but the seizure was over.
We were both sort of in a state of disbelief. In hindsight, I can’t believe I didn’t take him to the ER. They might could have identified a trigger that was causing two seizures, of two different types, in one day.
And no, Caleb was not sick, nor did he have a fever. Fevers can cause anyone to have a seizure, but that was not the case here.
This all happened on the weekend. By Monday, I made him an appointment with his regular doctor. I wasn’t even sure if what Caleb had had was a seizure. I guess I was just in denial.
You can imagine the sinking feeling I got when Caleb’s first pediatric neurologist explained to me that two or more unexplained seizures is considered epilepsy.
4 year old Caleb
I never knew anything about epilepsy when we started this process. I feel like it carries a lot of stigmas with it.
Caleb had both an MRI and an EEG, and in the process, I witnessed several more seizures that first year. All of Caleb’s seizures, except for that first one in the pool, have happened during Caleb’s sleep.
Epilespy simply designates a person that has seizures for an unknown reason.
If someone says their seizures are ‘non-epileptic’, that simply means that they have found the source or cause of their seizures.
Once we had the diagnosis, I read everything that I could get my hands on about epilepsy and the many different kinds of seizures and seizure medications!
Alan and I pushed back when they wanted to put Caleb on Keppra to prevent more seizures, in the beginning. What parent wants to have their precious child on brain medication? Meanwhile, Caleb kept having sleep seizures.
Caleb’s neurologist threw a fit and let us know that if Caleb wasn’t medicated, he could not be our doctor. Meanwhile, Alan was in Afghanistan, feeling powerless to support Caleb and me during all the testing and such.
Caleb, in his hospital bracelets and hospital gown, and Joshua, supporting his brother by dressing as alike as possible!
Caleb was such a tough little trooper through all of this. When they took out his IV, they’d warned me that most four-year-olds would be screaming and crying and unconsolable about it. Caleb simply sat still, watching the nurse intently, and asking to see and know about every thing that was going on. I’ve told him he should be a doctor ever since!
Once Caleb’s neurologist explained to me that without medication, the seizures could cause permanent brain damage from the electrical signals going haywire in his brain, I wholeheartedly agreed to faithfully give Caleb his medication!!!
This was all during Pre-K 4, and his teacher believed that she had seen him have an absence seizure or two at school as well. He was having a little trouble focusing at school, probably because of the seizures. We started the medication, Keppra, also called Levetiracetam, in very gradual doses. Even now, he takes a super low dose for his size.
In the beginning, we noticed two major side effects: drowsiness and headaches. The key to curbing the headaches is to make sure Caleb is well fed. The boy can now eat 2 hamburgers in one sitting! Wow! Once we knew to fill up his tummy with good food anytime he asks, the headaches subsided. Sounds like a no-brainer, right? We weren’t purposefully starving the kid, I promise! Apparently, he just needed a little extra.
The drowsiness got better as his body got used to it.
His doctors also keep telling us that lethargy, anger, and being easily irritated are also Keppra side effects. He does display those traits, though we never know how much of that is from Keppra, and how much of that is just Caleb.
In the moving process, Alan talked to a nurse at our upcoming duty station that is a subject matter expert on Epilepsy and Keppra. She recommended that we give Caleb Vitamin B6 to help him handle the Keppra better. We’ve been trying everything to get Caleb to swallow the B6 pill but have had zero success.
Can anyone tell us how to get a kid to swallow pills or an alternative method?? We could use some help here!
Caleb, age 6, at the Smithsonian Museum, with John David. They say that Caleb’s low energy level could also be a result of the Keppra. I hate that, but I figure low energy is better than having seizures.
Once Caleb started Keppra, he went one whole year without any documented seizures. Then he had a “breakthrough seizure” a year ago, that Joshua witnessed. It was so bad that Caleb actually fell out of his bed in convulsions, in the middle of the night. He was also sick with a cough and cold at the time, which may have aggravated his condition.
Now he has gone another year with no seizures! Wahooooo!
If Caleb can make it one more year with no seizures, we can start trying to wean him off of the medication, and if successful, he will no longer be considered epileptic. Many children grow out of this, and we hope that Caleb will too! That is our prayer!
For more information on epilepsy:http://www.healthline.com/