Parents and Epilepsy

May 30, 2020

Parents and Epilepsy

As frightened as a child is when finding out they are diagnosed with epilepsy, it is scarier for the parents of that child. When the parent(s) are sitting there in the emergency room and not sure what is going on with their child, all they can do is start praying when their son or daughter is experiencing a tonic-clonic seizure that has lasted more than five minutes.

When the doctor finally comes in and tells them what is happening, the parent(s) have so many questions: “Are they going to grow out of it?” “How is my son going to be when he has to go back to school?” “Will my daughter’s friends still be there for her because of this?”

Parents are always making sure their child’s teachers and school nurses know what to do and what not to do in the event their son or daughter has a seizure in the classroom or anywhere on the school’s campus. Parents are also making sure that their son or daughter who has been diagnosed with epilepsy has it in their IEP, especially if their child already has one for their learning disabilities. Having epilepsy, I know my mom made sure of that with me.

I think about the time when my mom and I found out I have epilepsy. It was Presidents’ Day weekend and I remember going into my parents’ bedroom and telling my mom I was having a migraine. My mom told me to come lay next to her in bed. The next thing I knew, I woke up at the Robert Wood Johnson Hospital in New Brunswick, NJ, with my mom next to me on the hospital bed while my sister, who was 13 at the time, was sitting in a nearby chair.

My mom has spent countless hours learning about epilepsy. She wanted to know what to do and what not to do when I was having a seizure. She made sure that I had the best doctor(s) in town taking care of my case. The pediatric neurologist I saw at Robert Wood Johnson Hospital was Dr. David Mandelbaum. Dr. Mandelbaum was the chief pediatric neurologist at the hospital; he always told my mom and I that my case was a tough one to crack.

My mom made sure I never worried about anything when it came to this. She kept me focused on my schoolwork and after-school activities, like wrestling, karate, and my bar mitzvah studies so I didn’t have to think about my epilepsy diagnosis.

I believe that parents are so crucial to their child’s epilepsy life, from youth to adulthood. You never know when you will need your parents, especially your mother. Your mom will always be in your corner when your epilepsy is involved. I know my mom is. She will always be there for me and I am almost 36-years-old.

By: Danny Rosenfeld

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