At age 9, we heard Caroline fall out of bed in the middle of the night. When we went to check on her, she was having a tonic-clonic seizure.
Caroline’s Epilepsy Diagnosis
We went to the ER and were told that the first seizure is a freebie and to follow up later with our pediatrician. He said it was probably nothing, but we should go have an EEG to rule things out. Immediately after the EEG, Caroline was diagnosed with epilepsy.
We had gone to the hospital for a "routine EEG" and didn't think anything about it because we expected clear results. The neurologist came into the EEG room at the end of the test and immediately took us to her office. As she was talking to us, I asked "why do you keep saying 'epilepsy'?" I was shocked. Caroline had several absence seizures during the EEG and was diagnosed immediately. I felt like a horrible mother because I didn't know.
Caroline’s Journey with Epilepsy
Caroline has photosensitive epilepsy and flashing lights can cause a seizure. She wanted to go to the school dance, but they were going to have flashing lights. Through the help of the Epilepsy Foundation, we were able to educate the school about the dangers to her and they were able to slow down the lights to a non-harmful frequency.
She has tonic-clonic seizures and juvenile myoclonic absence seizures. We have struggled with getting the right medicines and remembering to take them every day. Schoolwork is difficult and remains a struggle. Nine years later, she has graduated high school, drives, has a job, and is taking college classes with the goal of working with animals.
The Epilepsy Foundation has given my daughter the confidence to be able to talk to others about epilepsy and to advocate for herself. Through the Teens Speak Up! program, she had the courage to travel to Washington, D.C., and lobby for laws to help people with epilepsy.
Caroline had the honor of singing the national anthem on the National Mall for the Walk to End Epilepsy in DC in 2019. She also met actor Greg Grunberg who was there for the walk. She loves to meet people who have epilepsy and to educate others about epilepsy.
Advice for the Newly-Diagnosed
Learn what you can about epilepsy and your type of seizures and triggers. Take your medicine regularly. Get in touch with your local Epilepsy Foundation and reach out to a support group. And loved ones, don't be afraid to talk about it!