Epilepsy Through A Child's Eyes - Rachel Skaug - ebook

Epilepsy Through A Child's Eyes ebook

Rachel Skaug

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Opis

This is a story about a personal 10-year long childhood journey on living with epilepsy. After trying numerous medications and a special diet, brain surgeries played a significant role in beating epilepsy for good. Overcoming a battle like this gives her hope to inspire others with her story and encourages others to never stop fighting your battles

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Rachel Skaug

Epilepsy Through A Child's Eyes

BookRix GmbH & Co. KG80331 Munich

Chapter 1

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 the nurse led us back to a private room. When the doctor came in, they saw firsthand what this strange thing was that I was doing. It was then that Mom learned that I was having a seizure. This was the first time my doctor had seen this and he made a phone call to a neurologist, whom I saw the next day. Mom thought right away that it must be very serious if he scheduled an appointment. Mom went home and cried and thought, “How could this be happening to my perfect little baby?”

On November 19, we went to see the neurologist in Madison, Wisconsin named Dr. Frederick Edelman. He did an EEG (electroencephalogram) on my head. An EEG is a test that detects electrical activity in the brain using small, flat metal discs (electrodes) attached to the scalp. The brain cells communicate via electrical impulses and are active all the time, even when sleeping. This activity shows up as wavy lines on an EEG recording. Mom had to hold my arms to restrain me and hold me as still as possible.

I had to stay overnight at the Madison General Hospital to do this recording and they started me on anti-seizure medication called phenobarbital. The doctors also did blood tests and a CT scan, a computerized tomography that uses digital geometry processing to generate a three-dimensional image of the inside of an object. The CT scan showed something on the left half of my brain. My parents were scared but eager to find out how we could stop my seizures.

A few days later, on November 23, I had an MRI test done and rode in an ambulance from the clinic to the location where the MRI was performed. (An MRI, or magnetic resonance imaging, is a powerful medical diagnostic tool that uses a strong magnetic field to produce high-quality images in multiple planes or directions.) A nurse went with my parents and me on the ambulance because sedation was involved and I was only four months old. During the MRI, I had issues with sedation and the monitor unit and could not continue then. I had another MRI done on November 30, and the results were reviewed a few days later.

On December 2, my parents and I went over the MRI test results with Dr. Edelman and he said my brain was normal. There were no spots on my brain, as previously thought from the results of the CT scan earlier. I was prescribed the anti-seizure medication phenobarbital. My parents administered the liquid medicine by measuring an amount in a small syringe, cradling my small body, wrapping my arms behind my back and forcing it down my throat. I soon became quite used to this process. On December 16, I had another EEG done and met with my neurologist. I was still seizing, so my medication was increased.

It was now clear that I had epilepsy, a medical condition that produces seizures affecting a variety of metal and physical functions. It is also called a seizure disorder. When a person has two or more seizures, they are considered to have epilepsy. A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain. One in ten adults will have a seizure in their life. One in twenty-six people will develop Epilepsy in their lifetime. Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures, such as blank staring, lip smacking, or jerking movements of arms and legs. Epilepsy cannot be cured, but seizures are controllable with medication in about 70 percent of cases. In those whose seizures do not respond to medication, other treatments that may be considered include surgery, neurostimulation, or dietary changes. Not all epilepsy syndromes are life-long, and a substantial number of people improve to the point that medication is no longer needed.

My parents worked full time and all these doctor appointments and testing were taking a toll on them, especially my mom. Mom was always the one who took me to all my appointments. Whenever she was gone from work, she would have to make up that time. It was a real balancing act for her between working and taking care of a small baby with serious medical issues. It was important to her to work full time, as she was the insurance carrier for our family.