Status-It's Effects and Push Towards Surgery

According to the Epilepsy Foundation of America, status epilepticus is defined as a prolonged or clustered seizures sometimes develop into non-stop seizures. However, the Epilepsy Foundation advises parents and the public to call for emergency assistance when a convulsion continues for more than 5 minutes without signs of stopping.  In some cases status epilepticus can cause death or brain damage.

I started experiencing status epilepticus at the age 11 years old. My parents and doctors assumed that because of medication changes and adolescent developmental hormonal and maturational changes it was affecting the seizure presentations at this time.

When status occurred I started out by having a complex partial seizure. When I had a complex partial seizure know one knew if it was just going to be one seizure or if it would lead into another seizure. When complex partial seizures occurred the teacher would bring me to the nurse for monitoring. Should I display a cluster of this variety it would be considered status epilepticus. When I would go into status I would have a complex partial seizure and then 5 minutes later have another one. This would continue every 5 minutes until I was given a Lorazepam (Ativan). This eventually stopped me from clustering.

If I were to go into status at school, the nurse had orders to give me Lorazepam. Not only did the Lorazepam stop me from having a cluster of this type, but also it would prevent me from having any type of seizure for a whole week. Should I not come out of the seizure with the help of taking a Lorazepam the nurse had a copy of emergency room protocol from the doctor to send with me to Chester County Hospital. Luckily, I never went into status at school, and they never needed to give me a Lorazepam or send me to the hospital. I would go into status every 3 weeks, and when I came out of experiencing status I would be tired and unaware of what happened.

With the seizures becoming more frequent and more severe, my parents began to worry about what my future would hold for me. Every seizure was destroying healthy little brain cells. Learning was beginning to get extremely difficult for me, and the seizures were interfering with my life. The change in medications were not helping and with puberty affecting the seizure activity, my parents knew that something had to be done. My hormones would be increasing as my body was maturing, and learning material would continue to get more difficult as I moved up in grade level. The doctors did not see my seizures getting any better but worse as I continued to grow older.

My parents talked to my neurologist and nurse practitioner at Penn State Hersey Medical Center to discuss future options. One of the choices was to be hospitalized to see what part of the brain was causing the seizures and if surgery was an option to control the seizures. The other choice would be to continue playing around with medications until they figured out what the right medication(s) and dosage would work for me. This was not a hard decision for my parents as they decided the best thing was to figure out if I was a candidate for brain surgery.

During the summer of 1997, my parents took me to Hersey Medical Center where my neurologist and other doctors would see if I would be a candidate for brain surgery. I would be there over a three-week period to have medical and psychological testing done. When the medical testing occurred I was connected to an EEG. The EEG would record any electrical activity along the scalp that was produced by the firing of neurons within my brain. This would help pinpoint the region of the brain from which the seizures were coming from to see if brain surgery was an option to control the seizures.

Throughout the time that I was hooked up to an EEG the medical staff slowly weaned me off all my anti-convulsant medications so that I would have a seizure. Oddly enough, my brain was being exceedingly stubborn, and I was not having any seizures. They tried many ways for me to have a seizure such as having me ride a stationary bicycle to increase my body temperature. They did this because my seizures usually occurred when I was over heated, but this did not work. Since I had wires attached to my head from the EEG machine, this made it extremely difficult. Eventually, the attending physician decided that the next thing to do to make me have a seizure would be to completely stop all my medications.

As I was gradually coming off my anti-convulsants, nothing happened. Once I was completely off the medications I still showed no signs of any seizures. After 3 days of being on no medications, the doctor called it quits and removed all the electrodes.

However, within hours of being disconnected from the EEG machine I had one big seizure. This seizure was no ordinary complex partial seizure, but status epilepticus.

Although going into status was nothing new, this time I stopped breathing, and the doctors had to call a code blue (generally used to indicate a patient requiring immediate resuscitation) to bring the situation under control. It was a very difficult situation for my family. My parents immediately called Kirsten and Bredt who arrived from West Chester, Pa that day. The doctors instantaneously put me back on my full dose of seizure medications and as a result I became sick from over consumption of medicines.

Once I was stabilized after 24-48 hours later the staff decided to give me an injection to trace my brain waves. Of course right after the study ended and everything was disconnected, I had a seizure. As a result of the medical testing and going into status the doctors concluded that my seizures were coming from both sides of the brain. They told my parents that I would not be a candidate for brain surgery.

At this point my parents were frustrated. They left Hershey with no answers and a higher dose of seizure medication for me. They were determined not to give up. Even though the doctors at Hershey Medical Center thought that I was not a candidate for brain surgery my parents wanted to get a second opinion. They did not want to see me like this for the rest of life.

Mean while my parents talked with the nurse practitioner at Hershey Medical Center. She told them that another physician from Miami Children’s Hospital of Florida had been to Hershey in an exchange of information.  The nurse practitioner from Hershey asked my parents if it would be okay if she sent my medical records to Miami Children’s Hospital to get their opinion. The nurse practitioner said that she had heard great things that they were doing there with patients who had seizures. She also felt that if anyone could help me, their staff would be the ones who could help. My parents were elated that someone else cared so much about their daughter to do this and agreed immediately, so the nurse practitioner sent my medical records to Miami Children’s Hospital for there opinion. 

After the doctors from Miami Children’s Hospital took a look at the medical information that Hershey Medical Center had provided to them, they said that I would be a good candidate for brain surgery. However, this would not mean that I could possibly become seizure free, but it might prevent the seizures from worsening. So in the summer of 1998 we would fly down to Miami, Florida to see what they could do for me.