Honoring Jax Through Raising SUDEP Awareness
By Caren Coleson
My 8-year-old grandson, Jax, had an infectious smile, gave the biggest and best hugs to everyone, and considered everyone he met family. He loved BIG! He loved his family, he loved animals, he loved being outside, and he grew to love being in the water. Jax was diagnosed with epilepsy at the age of 4 after continuous days of seizures. He began having seizures at 2 years old and had them on and off for nearly 2 years. His pediatrician told us they were febrile seizures because they generally happened when Jax was experiencing an ear infection, had the flu or a virus; however, they did not necessarily happen when he had a fever.
Getting a diagnosis for his seizures was a big challenge for Jax. One day, he had a tonic-clonic seizure in the emergency room and the ER doctor who witnessed it referred him to a pediatric neurologist. His parents continued to seek answers from doctors and found a doctor who would listen and finally diagnosed him with epilepsy. Getting the diagnosis was almost a relief because we now had a name for his seizures and knew they could be treated. Finding the right medicines that worked best for Jax and being open with the doctor when the side effects were not good were things his parents relentlessly advocated for Jax.
Besides tonic-clonic seizures, he was also having drop seizures and some sensory and anxiety issues, which caused him to be fearful about many things. He had to change seizure medicines several times. But, with the right combination of medications and his strong determination, he overcame so much during the last year of his life, including becoming seizure-free for nearly two years.
He went from eating bits of food to eating everything you gave him. He went from being scared of getting in a boat or the water, to swimming like a fish, and even gave wakeboarding and knee boarding a try. He learned to ride his bike and his motorized scooter, which seemed impossible at one time. He was a joy to his entire family and will always be loved, missed and remembered.
A piece of advice I would tell newly diagnosed individuals is to work with your doctor to find what medicine is the best fit for you. Don't be afraid to learn about Sudden Unexpected Death in Epilepsy (SUDEP) and find ways to reduce risks. No one in our family had ever heard of SUDEP until after the death of our grandson. While knowing the risk of SUDEP exists is scary, it is necessary to learn about it so that you can find ways to reduce the risk of it happening. The medical community needs to talk about it more. As a family we did everything we knew to help Jax with his seizures but if we had known about SUDEP then, we would have taken some additional steps to try to prevent SUDEP.
Another piece of advice is to explore ways to minimize your risk, such as a smart watch with seizure monitoring app, right pillow to sleep on, etc., and make sure your family and friends know what to do and how to help you in the event of a seizure. Most importantly, however, is to take the Seizure First Aid Certification training to learn how to recognize a seizure and provide seizure first aid to someone having a seizure.
The Epilepsy Foundation of Alabama has been a tremendous source of support to our entire family since our grandson passed away from SUDEP. They have called and checked on us, offering encouragement and bereavement support and helped us to find ways to honor his memory while raising awareness for epilepsy and SUDEP. They also honored his memory at the Walk to END EPILEPSY® Mobile. Learn about the different kinds of seizures. Learn what triggers your loved one’s seizures so you can help them minimize the risk of seizures. Be their advocate!
Reviewed By: Sara Wyen