E is for Epilepsy

Stats and Experience

Epilepsy affects over 2 million in the U.S. (CDC)  and can be referred to as a seizure disorder. Seizures occur when there are disturbances in the brain; I like to think of it as if you were trying to hook up the connectors to jump-start a car battery. Our brain is a vast neuro-electric-pulsing machine that at times could spark and cause a seizure. There are many reasons why a person could have a seizure; reoccurring seizures are part of the definition of Epilepsy.

According to the Epilepsy Foundation, epilepsy is a  "condition which affects the nervous system." There are different types of seizures as well. My son Kaleb had epilepsy and suffered tonic seizures. Kaleb was diagnosed with Epilepsy after suffering severe dehydration, resulting in massive brain tissue loss, before he turned 2 years old. Kaleb was j-tube fed, not through his stomach, but through his jejunum. Because of this he was always nutrition sensitive. We were always concerned about keeping Kaleb hydrated. However, after his doctor's and nutritionist changed his formula, there were major complications that were severe and profound. As a result, never having seizures before, Kaleb was now diagnosed (adding to his other conditions) as having Epilepsy. His seizures would only last seconds, but there are seizures that last much longer within the spectrum and can have severe affects on the body. I have friends that are also diagnosed as having Epilepsy and you would never know. 

Me & K-man Summer 2013

Kaleb's seizures could be triggered by a number of things; a loud sound, lights, touch, heat, and sleep. When I was younger, I was once told that to interrupt a seizure, or seizure like activity, tap the person having a seizure on their nose (not too hard, just lightly). However, when I referred to this at Kaleb's Neurology appointment his doctor (who I never did like very much) informed me that the action would not stop a true seizure. Some say that the full moon will also increase seizure activity, although there are no scientific studies to suggest this is valid. But, I know from experience this to be true.  

His longest seizure was nearly 2 minutes long, he would get reddish in his face (most of the time this was due to him not breathing); not that he didn't always breath. He would draw his body in; meaning his body would stiffen and his arms would stretch out and then in toward one another. His legs would stretch and stiffen as well. Sometimes he would laugh during a seizure and sometimes when coming out of a seizure he would laugh, we referred to this as him "talking to the angels" or a "party seizure". Some seizures include other ticks, such as mouth and eye movements. As well, other seizures would cause Kaleb to become lethargic afterward and he would need to rest. 

While we do not know of what claimed Kaleb's life; his father and I are divorced and Kaleb had been with his father when Kaleb passed.  We still want to be beacons for people to understand his conditions, to spread the wealth of knowledge that we have obtained, and not only share his story but his love. 

To Learn More About Epilepsy, Click on the Links

Centers for Disease Control & Prevention - Epilepsy

Epilepsy Foundation

Mayo Clinic - Epilepsy