Epilepsy Through A Child's Eyes

By Rachel Skaug

My name is Rachel Skaug, formerly Rachel Kaalberg, and I used to have epileptic seizures as a child. My seizures started at four months old, which was in 1988, and lasted until I was 10 years old, in 1998.
I am from Madison, Wisconsin. Much of my testing happened at Mayo Clinic in Rochester, Minnesota. I had many tests such as blood tests, EEGs, PET scans and MRIs. I tried many medications. I also tried the Ketogenic Diet (a diet high in fat, low in protein and low in carbohydrates). The diet forces the body to burn fats rather than carbohydrates. It is sometimes used to help control seizures under strict medical supervision.
Medication and diet changes did not seem to work for me 100 percent. Therefore, I had to have surgery — I had five surgeries on the following dates: July 30, 1997; August 2, 1997; October 8, 1997; and June 8 and 10, 1998. The surgeries took place at Saint Mary’s Hospital in Rochester, Minnesota.
My parents stayed at the Ronald McDonald House in Rochester, Minnesota, during my hospital stays, and my younger brother stayed with numerous relatives during all of my hospital stays throughout the years.
The last surgery I had was the miracle that helped stop my seizures, and I was taken off all medications a year after my surgery. The doctors that I remember most are Dr. Zupanc and my surgeon Dr. Raffel. During the last surgery, they took a 50-cent-sized piece of my right temporal lobe out, which stopped my seizures. Today I have been seizure free since June 10, 1998, and still going strong.
After my surgeries, the doctors diagnosed me with tuberous sclerosis (a genetic disease that causes benign tumors to form in many different organs -- primarily in the brain, eyes, heart, kidney, skin, and lungs). I do have a few issues with comprehension, such as remembering what I read, but I work hard to remember things in picture format to understand what I read.
I am now a healthy adult with a family and no medical issues for me or my daughters. I continue to do checkups for lesions on my brain and in my kidneys about every two years. My experience at the Mayo Clinic was tremendous, and all the doctors and nurses that worked with me were great in helping me beat epilepsy. I am thankful and grateful for all the people involved that helped me try anything and everything to overcome my seizures.

• Language: English
• Publisher: Rachel Skaug
• Release date: Jun 16, 2019
• ISBN: 9780463073599

Rachel Skaug

I am from Madison, Wisconsin but currently live in northern Minnesota. I have one brother and no sisters. I had epilepsy for the first ten years of my life. I have been seizure free now since my last brain surgery in 1998. I have a book out called "Epilepsy Through A Child's Eyes" I now live a normal healthy life. I graduated high school in 2007 and got an associates degree in early childhood in 2012. I have also been married since 2010 and have two healthy daughters with no medical issues

Book preview

Cast all your worries on him, because he cares for you.

Peter 5:7

Chapter 1

Oh no, here it comes again—please, please, no, not another one. I spasm and cannot control my body. I tense up on the floor, arching my back and raising my arms while crying in fear. My mother comes running to my side and worry covers her face. My body loses control of its actions during the spasm as she tries to nurture her baby girl back to reality. Just one spasm has passed, with the rest of an intense and rough fight yet to come.

On a hot summer day in Madison, Wisconsin on July 15, 1988, I was born weighing 7 pounds, 6 ounces. My life started out like any other normal developing child. I was growing and gaining weight and even getting the required shots that every baby is supposed to get. I was born to two loving and caring parents. They were so proud to be new parents. In November, I went to my family doctor for my 4-month check-up. My mom had expressed some concerns she had that I sometimes made these strange body movements. It almost looked like I was straining to have a bowel movement. My doctor brushed it off, saying, Different babies do different funny things. Before I knew anything, I started having these spasms at about four months old.

At the time, I went to an in-home childcare provider, while my parents went to work during the day. The babysitter also noticed these strange movements I was making. My mom started referring to these strange movements as spasms. About two weeks later, the babysitter said I got really fussy after one of the spasms.

When the spasms started occurring, little did I know they would make my life very difficult for a long time. My mom started jotting down how often I was doing this and the characteristics of the episodes. Some of the characteristics were tensing up, arching back, eyes quivering, eyes rolling up, eyes reddening and watering, and raising arms. They start out gradually and then would intensify. My first recorded spastic episode was the night of November 14, 1988. The spasms lasted two to three seconds at first, and then became four to five seconds. I did not know what was happening and I cried during and after my spasms.

The next day, on November 15, I had three seizures (although my parents didn’t know yet what they were). By now, they had gotten stronger and more frequent. I was fussy after each seizure. There was no pattern to these seizures during the daytime hours. That night, I had two more seizures. At this point, my parents felt very tired and worried from all that was happening. On Wednesday the 16th, four more seizures happened, one during the day, two in the evening, and one during the night. On Thursday the 17th, I had five, three during the day and two in the evening. On Friday the 18th, I had four more seizures, two during the day, and two in the evening. Every day that these seizures went on, they would last two to three seconds and then build up to four to five seconds. Ten to twelve spasms happened during each episode and there would be a ten- to twenty-second gap between them. While all of this was going on, I had no consistent schedule to my day, while most babies by this age have a schedule of eating, sleeping, and diapering. After the first week of recording these seizures, my parents were tremendously worried and scared. They did not know what to do, where to go or who to turn to for help.

My mom called my doctor’s office and spoke to one of the nurses. Mom asked if she could come and wait in the waiting room until I had one of these spasms, so the doctor could see them. The doctor agreed. Mom sat in the waiting room at the doctor’s office, and when I started having one of these spasms, she got the nurse’s attention, and