I thought I would share

Since people haven't really said much I thought I would share part of my story with some of you who may not know about me. So here it goes....

Local News Monday, March 8th, 1999


Like most 14 year olds, Katrin Petka of West Chester looks forward to the kinds of activities that are typically enjoyed as part of teenage life.
Participating in school concerts, going to parties with friends, and eventually getting her drivers’ license are all things she now looks forward to
But until recently, these kinds of activities seemed to be unattainable dreams. Since age 5, Katrin has suffered from epileptic seizures, attacks that grew more frequent as she grew older and kept her from a normal life.
Now, based on her experience with a surgical form of treatment, Petka seems on the road to recovery.
Her parents, Nancy and Ed Petka, said they first noticed her epilepsy while on a family trip to Arizona. "We stopped to get something to drink on the way to the hotel and Katrin kind of lost her balance. She did that a couple of times on the trip, but we thought it might be something like an inner ear problem from the flight." Her mother recalled in a recent interview.
Back at their West Goshen home, they learned that her teacher had noticed similar episodes and so they scheduled an appointment with Katrin’s pediatrician. Through a series of exams it was determined that Katrin suffered from epilepsy, a condition that according to information on the Epilepsy Foundation of America’s website, effects about 2.3 million Americans.
In many cases, it is unknown what causes the seizure activity.
There are many different kinds of seizures. Katrin experiences what are called partial complex seizures. Some lasted only about 25 seconds during which her vision became blurry, but she was aware of what was happening was able to continue what she was doing.
Longer seizure lasted up to two minutes, during which Katrin sometimes pulled at her clothing or climbed. After the longer seizures, she experienced fatigue and memory loss making certain tasks like learning the multiplication tables impossible.
In ancient times, epilepsy was believed to be caused by a deity and was therefore sometimes called "a sacred disease." Later, it became associated with people of high intelligence. The list of those known to have suffered with epilepsy includes Alexander the Great, Julius Caesar, Lewis Carroll, James Madison, Napoleon, Edgar Allen Poe, Sir Isaac Newton, and Alfred Nobel.
But throughout most of history, epilepsy has been misunderstood and often feared.
Epilepsy is not a disease itself, but a symptom of some other neurological disorder. Information from the EFA says "normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and to all parts of the body. When someone has epilepsy, the normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual" sometimes effecting "a person’s consciousness, bodily movements or sensations for a short time."
Since her diagnosis, the Petkas have worked closely with Katrin’s physicians at Hershey Medical Center, and were able to obtain a degree of control of her attacks through medication.
An athlete, Katrin played on a travel soccer team during her elementary school years. She studies piano through the Suzuki method and could play "by ear", even though she could not read music.
At school, she was allowed to take open book tests, use a calculator or math table during math, and take the time she needed to complete assignments. Now in eighth grade, she has been an honor roll student every semester at Pierce Middle School.
But as Katrin entered her teenage years, the frequency of seizures increased despite higher doses of medication.
"As she’s matured she’s had seizures daily and then every three weeks they would cluster," explained her mother, Nancy. "By that I mean she would have seizure, then five minutes later she would have another and then five minutes she would have another. The only way we could stop them was to give her Adivan, which is a tranquilizer. That would be the only time we wouldn’t see a seizure for about a week."
Unfortunately, she has also had to endure insensitive teasing from some classmates.
In the summer of 1997, Katrin checked in to Hershey Medical Center for round-the-clock electroencephalograph (EEG) monitoring in an attempt to identify the focal point of the seizures. The Petkas and Katrin’s physicians hoped she might be a candidate for brain surgery.
Over a period of days, Katrin’s medications were gradually reduced. The seizures began to cluster and Katrin stopped breathing. The scan had revealed activity emanating from both sides of her brain.
"Basically, they concluded that they couldn’t do surgery and the only thing we could do was go back on the medicines," said Katrin’s father, Ed.
Because of the clustering, Katrin has no memory of this two-week period she spent at Hershey.
Last spring, the need to investigate alternative treatments because more evident. "At Pierce Middle School the big thing is a school trip to Cape Henlopen in Delaware. They fundraise for it all year," Nancy said. With so many of the activities taking place around water, the school even arranged for a college student to accompany Katrin During the week.
"She left on Monday morning. On Tuesday they called and said she was sick." Katrin had become toxic from and ingredient in on of her medications. She was unable to keep anything down including the antiepileptic medications.
"Now we had to readjust all her medicines because of the risk of clustering. There were a lot of tears, but we drove down to pick her up."
Through a physician member of the Hershey team, the Petkas were referred to the Comprehensive Epilepsy Program of the Neuroscience Center at Miami Children’s Hospital in Florida. The center has gained an international reputation for the surgical and non-surgical treatment of pediatric epilepsy.
Katrin’s records were forwarded to the center, and in July, the family was notified that Katrin looked like a good candidate for surgery.
Last August, the Petkas flew to Miami for a three-part procedure during which a team of specialists led by neurosurgeon Dr. Glen Morrison (originally from Havertown), Dr. Michael Duchowny, head of pediatric neurology and Pat Dean, clinical nurse specialist, mapped out the electrical activity in Katrin’s brain and then removed the areas of seizure activity.
Portions from three areas of the left side of Katrin’s brain were removed. The team determined that the right side of her brain actually copies seizure activity on the left side and required no surgery.
"I had 92 stitches," Katrin announced.
Katrin had been given a 65 to 75 percent chance of being seizure-free after surgery. The Petkas were told that if seizure were to recur, they would probably do so within the first six months after surgery, a date that was successfully reached on Feb. 24. Her only side-effect is a minimal loss of her peripheral vision.
Katrin will remain on a low dosage of medication for one year. If she experiences no seizures in that time, they anticipate that she will be weaned from all medication.
She resumed a full schedule at school almost immediately in the fall. Still on the honor roll, she’s relying less and less on the learning adaptations.
Recently, Katrin had her first baby sitting job and her parents enjoyed going out to dinner alone, things most of us take for granted.
Nancy still keeps a daily count of the days her golden-haired daughter has been seizure free. "We met other children who weren’t good candidates for surgery. We can’t believe how lucky we were," she said.

Note from Nancy Petka:
The procedure that Katrin had done was called "a craniotomy for tempoccipital lobectomy". I copied this off the papers that I signed for Katrin’s surgery. Today is Day # 229 since her last seizure which was the day after her intercranial electrodes were put in and she had to have seizures at this point to locate the seizing area. Needless to say, we still keep our fingers crossed that we continue to do so well!
To be off of her daily dose of 4275 milligrams of 3 seizure medicines has given us a new child.
The confidence of the doctors at Miami is amazing and they helped to make our decisions easy.
We hope that the enclosed article will be an inspiration to someone else.


Email Ed & Nancy Petka at: epetka@verizon.net
Post your comments to this story by emailing: motzko@ix.netcom.com


From reading this I hope you do realize that you can overcome things in life that some people think you might never be able to do!