The Role of Epilepsy in Our Lives
November is Epilepsy Awareness Month!
9 years ago I noticed my 18 month old son staring off, ears and face red and tongue clicking. It wasn't stopping and his dad and I panicked and got him into the car as I drove like a mad woman down the street not even really knowing where I was going while his dad sat in the back seat with him saying over and over again "breathe Jason! breathe!". His dad called 911 and and a fire engine met us down the street. His color had returned to normal by that point and he started responding to us again. It was by far one of the scariest moments of our lives. We then went to Rady's where not much was done. They thought maybe it was a freak incident or febrile seizure even though he didn't have a fever. We were then sent home hoping it wouldn’t happen again.
About 3 weeks later, he had 8 episodes in one day. While Jason was walking on the beach he fell to the ground. Again, terrifying. This time his doctor sent him in immediately for all kinds of testing. An EEG revealed seizure activity in the frontal lobe. He was given a medication called Keppra that is known to cause behavioral issues in children. It did seem to make him more difficult. An entire year went by on Keppra. His dad and I kept noticing these weird little jerks he would have randomly throughout the day. If he wasn’t your kid, you would never have noticed them. I mentioned them at every visit and kept being told they were probably just tics. I started seeing them more and more, up to 20 in an hour. I finally put my foot down and demanded they look further into it. He was ordered an overnight EEG. Every time we saw the “jerk” happen, we had to press a button. The EEG revealed that he was having mini seizures. Who knows what kind of damage that did to his developing brain. Jason’s initial diagnosis was partial complex seizures and then changed to generalized epilepsy. He was given a new medication called Lamitrogine. Weening off of the keppra and onto the Lamitrogine was not an easy process. Jason, who was already a very spirited kid became anxious and fearful. Over these several years, I spent every waking minute trying to find a solution to this issue. This was my first born child. I took amazing care of myself during the prenatal phase. How could this be happening to my child? I will never know the answer to that question. Jason’s birth was difficult. I pushed for over 3 hours and his shoulders were stuck. When he came out, he was blue and didn’t breathe right away. Maybe that is why? I don’t know and I have to accept that this is the way things are and embrace all of the positives of which there are many.
Since switching Jason’s medicine 6 years ago, he hasn’t had any major episodes. I have seen what I think to be an episode a total of 4 or 5 times over that time span. Luckily Jason loves acupuncture. This is so surprising because he is quite a stubborn kid. The times I think I have seen an episode which looked just like the original seizures, I get Jason on the couch and put needles in certain points. Immediately his ears and face turn back to his natural color as the energy is pulled down to his feet.
He is a vibrant, healthy boy in most every way but he does have some pretty major learning difficulties and lacks impulse control. I blame this entirely on the seizure activity that went on for a whole year undiagnosed. Once again, I will never know. There are no answers still. Hopefully with continued research we will learn more about epilepsy and find a way to cure this condition. Until then, i am grateful for the medication that has kept him seizure free and have great hopes of him coming off of it someday. As a holistic doctor, putting my child on a pharmaceutical at `18 months old was never in my parenting plan. I have learned that you can take your parenting plan and throw it out the window because each person enters this world ready to embark on their own journey that you as a parent have little control over.