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.
No response.
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.
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!
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/
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I know this is a really old post but for anyone else looking for an answer to the question now to give a kid a vitamin b6 pill I can answer that. My daughter is 19 months old and has Dandy Walker syndrome and recently started having seizures (not uncommon with dandy Walker). She has only recently started eating off of a spoon and still gets most of her nutrition from a bottle of baby formula. She was prescribed keppra and B6. Her keppra is liquid and she gets it in a dropper. The vitamins we were told to crush with a pill crusher and put in her bottle or baby food. I imagine this method would work just fine for an older child who refuses to swallow a pill as well.
Thankyou so much for sharing your story. All the info I can get helps!
Wow. So scary to go through the unknown. Thanks for sharing. Praying for healing. Sick babies are the saddest for mamas (although the kiddos tend to power right through sickness).
Wow. So scary to go through the unknown. Thanks for sharing. Praying for healing. Sick babies are the saddest for mamas (although the kiddos tend to power right through sickness).
You have that right! Thank you for the prayers!
You are Super Mom to deal with all of this. We went through some similar stuff with Joy Lynn when she was less than 2 years old. Very scary and uneasy 2 weeks for us but she is fine now.
Thanks, Jamie. It is scary, isn't it? I'm so glad she is fine now. I'm hoping it was just growth-related for Caleb. If he can just go one more year, he will lose the epilepsy diagnosis. God is in control!
I forgot something important: If Caleb is rid of his auras while he's controlled on Keppra, he will experience them again as the first sign of a breakthrough. If you can nail down what his aura is, you may be able to keep him controlled without more serious seizure by getting him to the neurologist and adjusting his meds.
K I'm really done!
Oh wow what an experience your family has had with epilepsy. What a strong little boy you have. I have a Caleb as well. My mother is on Keppra and we are slowly learning how to deal with her seizures, they came on later in life. Thank you for sharing your story I learned a lot and much that I can use for my mother.
I'm sorry to hear this has happened to your mom. I hope the Keppra helps her as much as it has helped Caleb, but with less side effects. I'm so glad you were able to get some new info from this!!
Auras are very strange things. I wish I could nail down for you exactly what your son feels, but they can vary. What I can tell you for sure, is that an aura will hit your son during the few seconds before his seizure, although technically, an aura IS a seizure. Most epileptics (the ones who are lucky enough to experience an aura, I feel that an epileptic that has no aura also has no warning. An aura is precious seconds to train your body to make a sound, or in some way notify anyone around you of the aura) experience a tipping sensation like a stomach drop-
a ton of neurologists have compared it to going over the top of a roller coaster, but that's not it. It's more like catching some air when you hit a little hill you didn't happen to notice in the car. These things are somewhat alike, but.. not. It's a drop in the stomach, and for me, it's triggered by a smell or music. More often for epileptics it's triggered by lights. Not for me. Sometimes it's not triggered by anything at all.
It's a feeling, the one I thought everybody had when I was little, because it was just a part of me. If anyone had asked me about those feelings when I was Calebs age, I would have looked at them like they had three heads. It's not unpleasant at all, sometimes it's euphoric. Not like drug euphoric, more like out of body euphoric. You mentioned sinuses before-- if there weren't any pain involved in a sinusitis, that would be akin to that particular aura.I would ask caleb if there were any differences in how he felt, day to day, on medicine, and not on it. life with auras and life without them is a noticeable change. He might not be able to express it, but he should be able to feel the difference. If I had been able to see life with auras and life without, that would have been life changing.
Another aura: he might feel like he's somewhere else for a moment, or have a memory triggered and feel like he's back in that memory.
The only thing all of these different auras have in common is this "funny feeling" however it manifests for Caleb.
The only thing I ever remember after a more serious seizure is the grey/black out. The peripheral vision greys out, and moves into the
center. Then black. Then sleep.
As far as driving, the laws are different by the state. I live in NJ, and it's really strict here. I lost my license for 6 months after I broke through several years ago, the neurologists here are required to tattle to the DMV after any seizure activity, and he had to report back to them every 6 months after that stating that I was controlled for 3 years after. It SUCKED, but just because he has epilepsy doesn't mean he won't be able to drive.
The worst thing about epilepsy, well, really there are two, but this one is that your epilepsy changes. Just because Caleb has seizures in his sleep now, does not mean that that will be the way for him forever. He may grow out of it, or he may not. He may need medication, he may not, it's just an ever changing life partner that, personally, I'd rather live without. The only thing you can do is watch, and talk to him. try to understand how he describes his feelings.
I have a tee-ball game. Gotta go, but this subject is near and dear to me, especially in children. Let me know if anything I've said was helpful, and like I said, ANYTHING I can do.
Thank you so much. This was so helpful that I can't even think of more questions. I really appreciate you taking the time to write this out for me. Have fun at tee ball!
We did. Give your little Caleb a hug from me, and tell him, from me, that he's not alone. God bless.
Thank you!!
First off, I have epilepsy. I've had it for my entire life, but was not diagnosed until I had a grand mal seizure when I was 22. The partial seizures were so normal for me, that I thought everyone felt the auras and seizures I dealt with. I'm sorry for you guys, I'm petrified for my own children, I watch them constantly for any signs or symptoms.
What Caleb has, that I didn't in my own youth, is a baseline. He knows what it's like to feel "normal", and to feel ictal, or postictal. I didn't know what life was like without petit mal seizures, absence seizures, or what my family thought were "fainting spells", when I was a child, but caleb does. I don't know what you talk about with your son regarding his epilepsy, but if I can help you figure out what he's feeling, which is so hard to express and understand, please don't hesitate to ask.
Also, medication reactions. They all cause side effects. I can't imagine going through school on brain drugs. Yikes.
If you want a kid to take his medicine-- get it in capsule form, open the pill up, and dump it in a tablespoon of something good. We use strawberry yogurt.
Anything I can help with-- Please let me know. <3
Thank you so much for sharing!!! I'm always so interested to hear what adults with epilepsy can teach me!! My friend Amy just sent me a message with a link to a liquid form of B6 for Caleb, so I'm super excited about that. Is there anything you can tell me about the auras that you have experienced? That's something that is hard for me to grasp, since I've never experienced it myself.
Thank you so much for reading and sharing! I am always eager to learn more about this condition. Are you able to drive? I've had a lot of people warn me that Caleb won't be allowed to drive, which frustrates me because the medicine controls his seizures so well, and most of them happen in his sleep. Of course, I want his life to be as free and normal as possible.
Very good post to remind us about just what epilepsy is. Thanks April. Hope the moving plans are progressing.
moving right along
Bless your heart and his little heart! I certainly understand the weariness of medication, especially with those kind of side effects. Hopefully the California air will keep those seizures a thing of the past!
People tell me they had less sinus problems in California. Caleb has HORRIBLE sinus problems, so perhaps the air will help him. Have you found that to be true?