Rachel’s Story

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, including 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.

My book is called “Epilepsy Through A Child’s Eyes” and is available on Amazon and many ebook sites.

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