My son, David, is a typical 6-year-old boy. If you have spent any time with him, you may know that he loves all sports, playing with his friends, his 3-year-old sister, Emily, and spending time with his family. David also enjoys drawing pictures of superheroes and sketches of homes, playing with Legos, reading books and all things Star Wars. He has a silly sense of humor and his laughter is contagious.
What you may not know about David is that he is living with epilepsy.
In October of 2015, at the age of 4, David developed an odd rash and a low-grade fever. The pediatrician was unsure of what it was, but felt that he had just caught a virus. Less than a week later, David had his first nocturnal seizure. He continued to have seizures and in November was diagnosed with Partial Epilepsy (which means that the seizure is occurring in one part of the brain).
David was placed on Keppra and other than a cluster of seizures in February 2016, his epilepsy was controlled by the medication through 2016. David must be seizure-free for at least 2 years before the doctor will attempt to take him off medication.
In the fall of 2016, David started to exhibit symptoms of Obsessive Compulsive Disorder (OCD). His OCD symptoms became progressively worse and we later found out that a side effect of Keppra can be OCD. In January of 2017 David’s medication was switched to Trileptal and his daily OCD symptoms went away within a week. Unfortunately, the switch to Trileptal showed us that Keppra was controlling the seizures, and not that he had already grown out of epilepsy. David had seizures in January (while his dosage was being adjusted) and February (while he was sick with a fever) but was seizure-free from late February through most of May.
In late May, David started to have seizures again. For David, his seizures only occur at night, about 45 minutes to 1 hour after he goes to sleep. They typically last between 2-3 minutes. David’s eyes are open, but he cannot speak. His legs and arms jerk, he tries to sit up and he moans. During this, he responds to our voices by squeezing our hands when we ask him to. As soon as the seizure ends, he turns over and goes back to sleep. David does not remember the seizure the next day, but he wakes up tired.
In early June, his Trileptal was increased and he was seizure-free until July 15. From July 15-August 10, David had 10 seizures. His dosage of Trileptal was increased two more times, but the maximum dose did not stop his seizures and the side effects were not manageable (he became dizzy and agitated quickly).
David has recently been put on a new drug, Lamictal. We are hopeful this medication will control his seizures with little side effects. His last seizure was on August 28. If Lamtical does not control his seizures, we may have to explore other treatment options, including surgery. It is possible that David will one day grow out of his seizures.
As a member of Athletes vs. Epilepsy, and in honor of David, I am running in the Rothman 8k in Philadelphia on November 18, 2017 in an effort to raise awareness as well as funds to help find cures and overcome the challenges created by epilepsy.
Donations to the Epilepsy Foundation will help fund innovation in accelerating new treatments and therapies in a time frame that matters. By donating to the Epilepsy Foundation through this page, you will support my efforts with Athletes vs. Epilepsy to help ensure that people living with epilepsy have the opportunity to live their lives to their fullest potential. No donation is too big or too small, every dollar counts to people living with epilepsy.