Supporting My Son With Epilepsy

My son Riley was diagnosed with epilepsy in January 2023 at the age of 3. The first seizure my son had, I didn’t have any idea what was happening or what to do. It was in the middle of the night, so I called 911 because I wasn’t sure and was half awake. For the second one, I was more prepared because me and my family were educated about epilepsy and seizure control and monitoring.

Things were going well for a while once he got seizure medication. He went pretty much seizure-free besides a few brief ones from time to time. As of August 2023, though, he has had seizures almost every day. No treatment seems to work, and they seem to be getting longer and longer every day, sometimes he even has multiple seizures in one day. We got a referral to a children’s hospital and are hopefully moving in the right direction with a few different plans in play. I pray every day that my little boy will get the relief he needs to live a more normal life. He has missed so much school and parties, Halloween, and more. 

As parents and as a family, we have just tried to be strong for Riley and give him the best on his good days and comfort and love him on his bad days. We try to remember epilepsy is out of our control, and the best thing we can do is to be there for him and comfort him when he needs us most. If you support someone with epilepsy, it is also important to take care of yourself or let others take care of you. Epilepsy can be draining for caregivers as well, so take care of yourself so you can be there for your loved one.

I decided to tell our family’s story because I never knew much about epilepsy until my son was diagnosed. I encourage you and your family to educate anyone who is around your loved one with epilepsy to know what to look for and how to best assist in the event of a seizure emergency.