Our journey with epilepsy started in1984 when Caroline was 3 years old. I was reading a book to her when I looked down and noticed she was turning gray. Immediately, I ran with her limp body to lay her on my bed. I thought she was dying. We rushed her to the ER but by the time we got there she was coming around and seemed to be fine. They ran an EEG and it came out normal, so they sent us home. We saw a new neurologist and they started her on phenobarbital, even though her EEG’s continued to be normal. She described the feeling she had before having a seizure as her “funny feeling”, which is technically called an aura.
Eventually she had her first abnormal EEG. The elementary school experience was crazy, but we were fortunate to have amazing teachers and principals that worked well with us. We changed medications many times trying to get the right combination. During her 2nd – 3rd grade she was well controlled with medication. In the 4th grade she started having many different seizures, petit mal, complex partial and grand mal. Her aura served as a sort of warning for the teachers that another seizure was coming, which enabled them to take her away from the classroom to have her seizures. One issue we had to resolve was making them understand it was not necessary to call 911 after each seizure.
We talked to the neurologist about brain surgery and he did not recommend it. Her seizures continued to get worse and it took up most of the day when she had one. She would go into a deep sleep for hours after having a seizure. It was really making an impact on the whole family.
I called the Epilepsy Foundation and told them my story. They gave me information and encouraged us to contact Dr. Allen Wyler in Memphis. We did and went for Phase One testing. They took her off all meds and waited for her to have three seizures so they could record it with an EEG and video. She passed that phase and we came back for Phase Two the next month to see if she was a surgical candidate. They put the electrodes on the cortex of her brain via surgery. Again, we waited for three seizures with no medication. They told us her seizures start in one focal area but quickly spread to other parts of her brain. To guarantee seizure-free results, it must start and stay in one area. Though surgery could help her, we were told that she would never be seizure-free without medication. We did not rush into surgery at that time.
Caroline was in the summer daycare program at her school. They took field trips to Crystal Springs to swim and the lifeguards there knew she had seizures and kept a close watch on her. One day she went under water and did not come back up. The lifeguard pulled her out and revived her. They called an ambulance and took her to Rhea County Medical Center ER before she was eventually transferred to TC Thompson Children’s hospital. Her lungs were checked and, thankfully, she had not swallowed too much water. She was able to come back home later that night.
After that experience, there came a few more months of many seizures. We decided to risk brain surgery. After the surgery, the journey continued on as we changed medications and doctors multiple times over the years. She is now 39 years old and has had less than 10 seizures in the last decade. It brings me such joy to say that she has been seizure free for over 4 years now while taking her medication.
There is hope with epilepsy! My advice for parents is FIGHT FOR YOUR CHILD if they are not able to fight for themselves! You are their advocate, whether they are a child or an adult. Make sure that you are heard by the doctor if you think they are not listening. Your child is so special and was given to you for a reason. Love your child no matter what their disabilities are. They want to be treated like all other children or adults. Many thanks to the Epilepsy Foundation of SETN for giving us the courage to allow her to have epilepsy surgery. It changed our lives.