Learning to Live on Seizure Medications

On March 14, 1991, my parents and I would head down to Children’s Hospital of Philadelphia (CHOP) for a neurologist appointment.  After the doctor reviewed my records and my parents answered any question she might have had, she diagnosed me with epilepsy.

When I was diagnosed with epilepsy, they diagnosed me with having two types of seizures, Complex Partial seizures.

Absence seizures (also called Petit Mal seizures) according to the Epilepsy Foundation are lapses of awareness, sometimes with staring that begin and end abruptly, lasting only a few seconds.  Complex Partial seizures described by the Epilepsy Foundation as electrical disturbance that are limited to a specific area of one cerebral hemisphere (side of the brain) in which consciousness is impaired or lost.

To prevent the seizures from happening the doctor prescribed me an anticonvulsant, Phenobarbital. The doctor thought that the seizures would not get any worse, and they did not feel that shunting the cyst, was likely to benefit me. At this time, I was on grade level for my age and development. I was doing everything I should have been doing for my age.

After being on the Phenobarbital for some time, my parents had noticed it led to marked hyperactivity, so the doctor decided to substitute it with Tegretol. At this time, I was doing exceptionally well and was seizure free for a long period of time, but around May of 1992, the seizures reoccurred and gradually increased in frequency. Despite the increases in Tegretol, I would have 1-3 seizures per day, which occurred in the morning hours.

In the meantime, I was like any typical child. I enjoyed interacting with my peers with no signs of being different. I was playing soccer at the time and I loved playing it with Bredt. However, when I would play soccer on hot days the temperature changes seemed to cause an increase in seizure activity. 

 

Playing soccer

 

Since my seizure activity was increasing, my parents had taken me back to the neurologist to discuss the problems. In October 1992 when I went to see the doctor he had decided to take me off the Tegretol and put me on Diamox. However, within the next 7 months I had become a picky eater and I did not gain any weight. The only positive was that I was not have any seizures, so they decided to reduce the Diamox, but as a result, seizures recurred, so they increased the Diamox back to its normal dose. At this time in my life, (1994) I was in fourth grade, and I felt like a typical kid like everyone else.