My Story Growing Up With Epilepsy

April 21, 2014

Body


I’ve been living with epilepsy since I was a small child. One thing that I learned early on was not to dwell on the “why.” That little word can drive a person crazy! So I always say, “why not me?” I am no different than anyone else.

I was just six years old when I was rushed to Texas Children’s Hospital after my brother told my mom that he saw my body jerking in my sleep one night.  I remember waking up in a hospital bed, confused, wondering where I was and who all of the people were around me. 

My mom explained that I had experienced a seizure. I didn’t know at the time that it would be just one of many…and that I would be hospitalized for months because doctors were trying to figure out how to control my seizures.

I remember spending a lot of time in my hospital bed and having two IVs in my hands, which prevented me from coloring or writing. I also wasn’t able to walk around because my doctors were afraid I would suffer another seizure. My mom ended up quitting her job at the bank where she worked to take care of me at the hospital.

I was given a lot of different medications to control my seizures. Unfortunately, I was allergic to Phenerbartal and Dilantin, the most common drugs used to treat seizures at the time. Eventually, a new drug called ClonazePam worked to control my seizures and I was discharged from the hospital.

My best memories of the hospital involve our family’s experience with the nurses. They were so kind and caring and I remember to this day how thoughtful they were. They would often stay with me so my mom had a chance to go to the cafeteria or simply go outside. This was time they took away from their own families and themselves by coming in early or leaving late. These nurses, techs and physicians left a huge impact on my life and I am eternally grateful to all of the wonderful people who worked so hard to save my life.

I knew after my experience at Texas Children’s as a young girl that when I grew up, I wanted to have a job where I could help others, the same way I had been cared for. I never thought of any other line of work that I wanted to be in other then the medical field. I am honored, privileged and blessed to work at the Blue Bird Circle Clinic for Pediatric Neurology at Texas Children’s. Every day, I feel fulfilled by the work that I do and I can relate to how our families feel. I understand the anxiety, frustrations and worries they have because I have walked in their shoes. I was once a child at Texas Children’s Hospital with a mother who was anxious and worried about me.

From the time I was a little girl to now, I feel like I’ve been watching history in the making. The Family Medical Leave Act was created and passed in 1993. This means that moms like mine are able to be absent from work without losing their job or needing to quit to look after a child. Other changes have occurred like pre-existing conditions no longer being excluded on insurance plans and there is no longer a life time maximum. Dr. Angus Wilfong and Dr. Daniel Curry pioneered a laser ablation surgery to stop epileptic seizures. There’s even a camp for our patients. So many things have changed for the better since I was a child.

The one message I hope families will take away from my experience is that today, children with seizures can have a life filled with endless possibilities. They are only limited by how far they can dream. Epilepsy has never stopped me from living or dreaming of what I could do in life. These wonderful people gave me a life that I might not have had.

To learn more about Texas Children's Epilepsy Clinic, visit here.

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