If you ask someone what they think of when they hear the word “epilepsy”, they will most likely answer “seizures”. That certainly would have been my answer if you had asked me even just three months ago.
Now, though, the seizures only scratch the surface.. They’re the easiest for us to identify and to label and put in to a box. What is harder to identify and harder to quantify are the many other symptoms and side effects of the seizures and of the medicines that are running rampant inside of his body, and for which we have no adequate words to describe to anyone else, never mind to him.
How do you explain to a five year old why he gets so sad that he wants to run away, hide, and cry? How do you explain why he can’t control his emotions and why we have to hold him down for an hour or more before bed when his impulses take over and he is hitting, and spitting, and biting? How do you explain why he can’t control his body, why he is always so tired and why he constantly trips and falls when he used to be so agile?
I can’t give him a reason when he asks why this is happening. I can’t fix him when he asks me to make him better. I can only tell him over and over that I love him when I am holding him down until his anger passes. I can only try to make those moments when he isn’t too tired to function feel a little more normal.
my son was 4 when he was diagnosed and the first few years were much like you are describing, as he got older ( he is 12 now) he became used to the regime of pills ( 17 a day currently) and is comfortable talking to his class about it, we even brought comic books in describing epilepsy. I have found some hreat on lone support through facebook e groups. hugs and love. You both will do well xoxoxo
Thank you for sharing your story, Danielle, and thanks for the well wishes. Your son sounds like a pretty strong kid to be able to talk about it! Inspirational!
My son, as well, has epilepsy, he started having seizures at 4 1/2 years old (he is now 9) and had multiple types of seizures and up to 120 seizures per day. It took a few years to find a mix of medicines he would respond to for seizure control and have the least amount of side effects. He was on 4 medicines and 17 pills per day, now down to 3 medicines and 9 pills per day. We tried 7 different medicines to find best control with least amount of side effects. Each medicine has so many different things, you know your child better than any doctor, keep in constant communication with the doctor about the side effects and try different medicines (and combinations) to get one that works best. Some side effects get better with time, their bodies seem to adapt. Our children’s quality of life and how they feel is almost as important as the seizure control. Also, we found two children’s books online and at the bookstore, “Taking Seizure Disrder to School” and “Mommy, I feel funny”, both books really helped us to describe to our son and his friends / classmates epilepsy and seizure disorders. Good luck to you and you family. The first year is so very rough, but your son (and you) will find strength and learn to fight and manage epilepsy until a cure is found for all of us, fingers crossed it’s soon!
Thank you for the comment and for sharing, Kim. If there is any silver lining for us right now, it’s that all of this happened after we moved to Philadelphia, right next to one of the top children’s hospital in the country. I absolutely agree about the quality of life. His track record for responding to meds has not been great with side effects, but the keto diet seems to be helping, now we just have to wait and see. Thanks for the book recommendations, too, I will check them out. Best to you and your son and family!
I can’t even start to imagine how you must feel to have a young child with Epilepsy. My daughter was 32 when she was diagnosed after 2 years of doctors missing what was really happening to her. She has gone from being a single, independent young woman to having her mother living with her and hasn’t been left alone for over three years now. The toll it takes emotionally on us as parents is more than I believe most can even start to comprehend. We belong to a local seizure support group (which we helped start) and she is the only adult there who experiences seizures. The parents of children of the group like the fact that they can get a better understanding of how their child feels by asking her many questions. She is highly educated (law degree) and can articulate to the parents the many different feelings their child might be feeling from physical pain caused from the seizure to emotional feelings. They have found no drug combinations that help her seizures but she remains optimistic. I pray for you little guy and for you….keep strong and carry on!
Thank you for sharing, Becky. I can imagine having an adult to talk to that has seizures can be insightful. One of our struggles with our son is that he doesn’t have the vocabulary necessary to describe what is happening or if he can tell when it’s going to happen…the “auras”. We also can’t really explain to him what is happening or why. Starting a group is an extremely generous act, and that you and your daughter are giving back to the others in the community is truly a gift. Thank you for your prayers, and our thoughts are with you and your daughter too.