In his own words: living with epilepsy
Josh* is a 12-year-old sixth grader. He had his first seizure when he was 13 months old, and was officially diagnosed with epilepsy at age 5. Josh spent much of his second-grade year experimenting with various seizure medications, while breaking through with multiple seizures a day. At age 7, he had brain surgery to correct his condition, and has been seizure-free for the past two years. Josh has been very successful in school, earning all A’s and B’s on his report card. His busy lifestyle as a middle-school student includes basketball, track, cross-country, choir, and church youth group activities.
What was your first sign that something was wrong? What symptoms did you experience?
Josh: When I was 13 months old, I woke up in the middle of the night and started making noises, shaking, and I wouldn't answer my mom. They called the ambulance, but my seizure stopped by the time they got there. My mom and dad took me in to the hospital and they checked me out and sent me home. Later that day, I had another seizure, so they took me back to the hospital.
Josh’s Mom: It was early in the morning when we woke up to noises coming from Josh’s room. When we got to his room, he was on his back shaking violently. My husband laid him on the floor to begin administering CPR because he wasn't breathing. In the mean time, I called 911, but his seizure had stopped by the time the ambulance arrived. We then drove him to the emergency room to have him evaluated. They did a spinal tap, blood work, CT scan, and scheduled him for an EEG. He had been sick with a cold, so they thought the seizure was possibly caused by a fever related to the cold. Later that afternoon, Josh had another seizure. We called 911 again and they transported him by ambulance to the emergency room. At that point, they admitted him to the hospital for observation and put him on Phenobarbital.
What was the diagnosis experience like?
Josh: I don't really remember anything until I was in first grade.
Josh’s Mom: Josh had been on the Phenobarbital since he had his first seizure at 13 months old. He continued on the medication, but they never increased the amount. So, as he was growing, he had less medication in his system. During this time, he didn't have any more seizures. The doctor’s felt that we could begin weaning him off the medication. It had been two weeks without medication when he broke through with a seizure. He was five years old at the time. The doctor in the emergency room referred to Josh as having epilepsy.
What was your initial and then longer-term reaction to the diagnosis?
Josh: I felt nervous sometimes, and then sometimes I would just forget about it. I wasn't really concentrating on my seizures unless I was actually having one.
Josh’s Mom: We were devastated. I guess I thought all along that he would outgrow this and everything would be okay. Then we started thinking about what his limitations would be; like would he ever be able to drive? However, at that point we were hopeful that medication would be able to control it.
How is epilepsy treated?
Josh: They gave me medication, and every time I had a seizure, they would give me more medication or would change the medication. Once I had the surgery I didn't have to take the medications anymore. Now I'm fine.
Josh’s Mom: They were constantly experimenting with medications. They wanted to get him on the lowest dose that would control the seizures, but not have the side effects. There were lots of medications and lots of blood tests. He had been on Phenobarbital, Dilantin, Tegretol, and several others. Everything was always an unknown.
He was initially treated by our family physician, then he referred us to a neurologist at Riley Children’s Hospital in Indianapolis, Indiana. Then, when Josh was seven, we began seeing a neurologist in Elkhart, Indiana. It was this doctor that referred us to the Cleveland Clinic in Cleveland, Ohio.
At the Cleveland Clinic, Josh underwent a temporal lobe resection, parts of his hippocampus were removed. It's amazing, because for boys, this is the area that is involved with speech. But Josh has no problems with that at all. And the surgery has been very successful.
Did you have to make any lifestyle or dietary changes in response to epilepsy?
Josh: I wasn't really involved as much as I am now. I couldn't go away to basketball camp because we weren't sure what could happen. If I still had seizures, I wouldn't be able to play basketball or swim in a lake. I don't remember changing anything I ate.
Josh’s Mom: We tried very hard to make as little change as possible in Josh’s lifestyle. One thing we noticed is that he stopped being invited to birthday parties during his second-grade year. I think parents were afraid that something would happen. As far as the diet, we didn't really make any changes. We read about the ketogenic diet, but we didn't really try it.
Did you seek any type of emotional support?
Josh: My mom and dad did all that. They talked to my teachers and would tell them all about my epilepsy. If I would get nervous about my seizures, I would talk to my mom.
Josh’s Mom: Our family and friends were very supportive. Once we went to Cleveland, we were able to talk to people in the same situation. I didn't realize how encouraging that would be.
Does epilepsy have an impact on your family?
Josh: Well, it affected my family in that my mom couldn't be involved in much because my dad was at work. So my mom had to stop a lot of stuff. It didn't really affect my brothers much.
Josh’s Mom: When we started getting into all the testing, it became more consuming. Tyler, his older brother, was old enough to know what was going on. His two younger brothers were young enough that they didn't really understand what was happening.
What advice would you give to anyone living with epilepsy?
Josh: Be calm and patient. Expect the unexpected. I never knew when I was going to have a seizure. I also thought that I would be healed right after the surgery, but I remember feeling terrible right after my surgery. It took awhile before I started feeling better.
Josh’s Mom: I would educate yourself as much as you can about the options for treatment. Seek excellent medical treatment as early as possible. You don't want to overreact, but you have to ask lots of questions. Just be calm and kind in your approach. Surround yourself with good support.
*Not his real name