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.

Facing a Learning Disability

My parents watched me blossom both physically and intellectually. Until I was on a heavy dose of medicine, I excelled in all that I did. A learning disability did not occur to my parents.  

I was initially evaluated as a first grader in the regular education program. At the time I was only receiving remediation with the reading specialist and attended chapter I reading (small group reading instruction). I was considered “at risk” academically, but overall I did well like the other kids in the classroom.

As I got older the seizures became more frequent and more severe, it made retaining information difficult. Not only di the seizures have an impact on my learning, but the heavy dose of medications didn’t help much either. I was at a point in life that I could not do my own work independently without teacher support. At this time, cognitive problems started to occur that it caused me to have slow responses.

When I entered the fourth grade, I was given a psychological test to see where I stood overall on grade level. As a result, it was determined that I was qualified for specially designed instruction also known as Special Education.

Although, I was functioning in the average range of cognition I just had a weaker processing speed than my peers. My greatest difficulties at this time were reading comprehension and putting my thoughts together into a written form. This meant that I only got pulled out of the classroom for extra help with language arts, test taking and study skills. All the other subjects I would be in the regular education classroom with my peers.

While I was continually getting tests done for my seizure disorder, MRI findings and results of psychological testing found that the cyst had altered my ability to understanding reading comprehension and complex language processing skills. This area acts as a convergence where a high degree of specificity in perceptual recognition and associative processing is managed by the nervous system.  This would require teachers to identify strategies for organizing assignments, breaking them down into component parts, setting up regular visual and auditory vocabulary review cards, and strategies on how to read through several pages of test.

Elementary school did not seem to be too difficult for me. When it came time to going to middle school my parents did not only have concerns about my reading comprehension and language processing, but concerns about my self-esteem. As a child, I was extremely shy, but adventurous and a hard worker. However, I was starting to realize that I was somewhat different. At this age, people thought it was cool to make fun of others, and as a result, I was an easy target. Also, at this age people realized there were different groups to be apart of and I was not apart of any of those groups.

I had a good sense of self when apart from the family, especially when surrounded by others who were knowledgeable about me and accepted me for my epilepsy. Some of my friends I enjoyed spending time with were the girls on my soccer team and others that had similar learning situations like me. As I look back now, I wonder did the girls on my soccer team accept me because they had to since I was part of that team or did they genuinely like me? That is something I will never know. Sometimes I also wonder if I scared others because of my seizures that occurred.

Since I was shy and felt different from others, having friendships with others was difficult. Did I not have as many friends because of my shyness, or was it simply that they did not want to be seen with someone who could suddenly start climbing and pulling at their clothing. This is again something I will never know. Due to my feelings of being different I felt more comfortable seeking out and receiving help from the adults at school.

Feeling different was hard enough, that I worked hard at being an A student. With the homework that I would receive in middle school, it would take me 3 hours/night just to complete my work for the next day. Also, if retaining information wasn’t as hard for me like my peers I would be lucky if I did not have a seizure that day because if a seizure happened there was a good chance that I did not remember the information that was just taught to me. In order to keep things in my short-term memory, I had to implement many strategies to compensate for it. More accommodations and modifications were needed as I learned harder material. Extra time on test was not enough. Since, remembering material was difficult I was given the ability to use open book test just so I could be successful.

As part of being eligible for learning support, they had to test you every 3 years, and when I was tested in 7^th grade scores had shown that verbal IQ, Performance IQ and Full scale IQ had dropped since previous testing. This was proof that my seizures were beginning to take over my life as I was not recalling information that I was being taught.

Changing Neurologist

From 1991-1998, I was on 7 different types of seizure medication. (Phenobarbital, Tegretol, Diamox, Dilantin, Topamax, Lamictal and Depekote). Whether they were combined with another seizure medication or taken several times a day nothing seemed to stop the seizures from coming.  The seizures had been occurring more frequently, and the neurologist at CHOP thought there was nothing significantly wrong with me and that I would be ok with medical intervention. However, my parents disagreed and decided it was time to find a new neurologist.

In 1996, my parents had switched neurologist from CHOP to Penn State Hershey Milton S. Medical Center. The doctors at Hershey were delighted to have me as a patient and took my medical condition serious.  As the new neurologist learned more about me, they assumed that the medication changes, adolescent developmental, hormonal and maturational changes had some affects on the seizures presenting at this time as well as my ability to learn and attain information. Also, due to the heavy amounts of medication load I was on, I occasionally have toxicity symptoms, which included nausea, vomiting, vertigo and dry mouth that required occasional trips to the hospital.

At this point in my life, my mom had to start documenting the kinds of seizures I had and the frequency of these seizures for my physicians. My parents also asked my teachers to keep track of any seizure activity that might occur as well, but since the teachers were so comfortable with my seizures they would forget to give my parents this information.

Types of Seizures I Experienced

When I would have Complex Partial seizures, they would last for about a minute and to two minutes long. Teachers would have to bring me to the nurse for observation. When I suffered from this type of seizure I would mumble, have clumsy movements, climb, pull at my clothing and have no awareness of my surroundings. The nurse needed to make sure that I was in a safe place in case I fell.

If I had to describe what my seizures did to me, I would have to say that having a seizure was like erasing what had just happened.  Imagine knowing what you were doing prior to having a seizure, but once that seizure occurred it wiped you out. So maybe about half an hour later I would know what was going on, but would be exhausted that sometimes I needed a nap just to feel better and more alert. This is what a complex partial seizure felt like.

 However, if I had an absence seizure it was not as bad as a complex partial seizure since the seizure only lasted about 45 seconds to a minute long. I then continue on with my day. Picture having 1 to 3 seizures each day and how exhausted I would be right after one and what it did to my brain.

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. 

My First Seizure

Although I had shown signs of having a febrile seizure when I was a toddler, little did we know there would be more ahead of us. During February of 1991 Bredt had been on the Delco traveling soccer team that was heading to Phoenix, Arizona for a tournament. As we were headed to the hotel, we had stopped at a Utotem (like a Wawa) for snacks. All of us were in the store when suddenly I stopped and just stood there staring. My body looked like I could lose my balance, but luckily I was next to Bredt. So Bredt held onto me so I would not fall. At this time, there were no other signs of anything wrong. My parents had no clue that this was the first sign of a seizure. Later that same day when we got to our hotel room the same thing had happened.

My parents simply thought that perhaps it was an ear infection since I was prone to them, knowing that ear infections can affect a persons balance. So as soon as we got home to Pennsylvania my parents made an appointment for me to see the pediatrician.  While my mom had scheduled the doctor’s appointment, I went back to school.

At this time, I was in Kindergarten, so my mom let my teacher know that I was showing signs of having difficulty keeping my balance and staring into space. She had also let her know that she had scheduled an appointment with the doctor. That same week I went back to school, the teacher had noticed that what my parents described to her were similar events to what had happened when we were in Arizona.

Later that week as my mom and I sat waiting in the pediatrician’s office, the doctors said that I suffered an atonic seizure accompanied by rapid eye blinking. The doctor suggested getting an EEG (Electroencephalography). The scan was obtained on March 5, 1991, which demonstrated an abnormal EEG because of focal left occipital and posterior temporal sharp waves, spikes and slow waves of high voltage through the tracing. Due to the abnormal waves and spikes that showed up, this led to getting a CT Scan (Computed Tomograhy Scan).

 On March 7, 1991, a CT scan was done, and results showed that there was a large cystic lesion in the left temporal fossa, which replaced most of the left temporal lobe.  It could not be determined whether it was a porencephalic cyst or an arachnoid cyst.  At the time, I was on no medications, but from the testing and what my parents described my pediatrician, they suggested that we see a neurologist.

 

 

Life Without Seizures

When I was three years old I started preschool at the YMCA.  At this age, I loved writing my mommy notes. I remembered my address, my phone number and my birthday. I had excellent fine motor and gross motor skills.

My First Day of Preschool

As I was developing normally like any other child my age, I was also trying to keep up with sister and brother who were in high school at this time.  Kirsten was “Miss Popular” as she was captain of her cheerleading squad. Bredt, on the other hand was busy with his travel soccer team and high school soccer. As the little sister, I would be at every game that Bredt played soccer, wearing my tee-shirt that said “My Big Bro is number 15.” Also, as we would show up for Kirsten’s cheerleading events, I would at times, join in her cheers and participate with the team. I had a garnet and white shirt that said “HHS Warriors” (Henderson High School) and sometimes I even had my face painted just like them. The girls loved me so much that they considered me their little mascot.Meanwhile, when they were at home and had friends over, I would be all up in their business trying to act just like them. Not a day went by when I would try to get their friends attention while they were over. When Kirsten and Bredt were watching grown up shows, I would be there to enjoy it as well and constantly
interrupting them trying to get them to play with me. There would be were plenty of times when Kirsten or Bredt would say, “leave us alone Katrin.” when they were out side I would go outside to go see what they were doing! There was never a day that I did not bug them.

Being like my sister using her pom-poms

I wanted to be just like Kirsten and Bredt. I worked hard at doing everything they could do.  By the time that I was 3 years old I was swimming like a fish. When I was old enough to join a sports team, I played soccer just like Bredt. In my eyes, life seemed perfect.