The Chronicles of Her Epilepsy: Part 1
The first time my daughter, Aubrey, told me she thought she was having seizures in her arms three years ago, I didn’t know how to take it. Initially, I thought she was exaggerating or trying to get attention. After all, she was a new teenager and very hormonal. We hadn’t been in Georgia for too long; just moved from the only place she and my son, Abbott, had ever known as home. Leaving West Virginia was very difficult for my family. We (me, Aubrey and Abbott) left our friends, our comforts, my job, their school, the mountains–we left home. Aubrey was very angry with me when we first moved to Georgia, so her lashing out was expected, and her exaggerating of having seizures seemed justifiable.
Over the next couple of years, Aubrey’s arm convulsions began to get more frequent and I had actually started to witness them. The first time I had witnessed her arm’s convulsing, she was sitting at the kitchen table in the morning eating a bowl of cereal. Suddenly, the bowl of cereal flipped out of her hands spilling down the front of her shirt and falling on the floor. She just looked at me, and said, “See, I told you something was wrong with me.”
I still didn’t know what was going on, nor did I understand it. A couple of months later, she was walking to the refrigerator to get some water and her legs gave out and she fell on the floor. She knocked her knees a bit which caused them to be bruised, but she got back up and gave me a look that seemed to be asking for help. Still, I did not understand what was going on and thought that maybe she was tired. Still, even at this point, I thought she had exaggerated her fall to get attention. This time, though, I did give her the attention she was looking for and told her I would schedule her an appointment with a doctor.
The first doctor she was taken to was a family practice doctor. After a $20 co-pay and five minutes of consultation, the doctor said that she just needed to eat better and sent us on our merry way. I convinced myself that these arm and now leg convulsions were common occurrences and she would grow out of them. I guess, in a way, I didn’t want to deal with the issue. I was beginning to get scared, and for the first time, my seemingly perfect daughter was facing a potentially serious situation.
In March 2014, Aubrey had gotten caught doing something she should not have done. She and her friend decided to take my car in the middle of the night and go cruising around. After they got caught, I sent her friend home to explain the situation to her father, and I began to reprimand Aubrey. I called the police to my house for auto theft, mainly just to scare her, and as we were talking to the police, her arms began to convulse significantly. The officer asked her what she was doing, and I asked her to stop acting like that. She said she couldn’t help it, and after the officer had words with Aubrey about her poor decision to take my car and explained she had escaped from what could have been a devastating consequence, she went inside and I continued to talk to the officer.
After ten minutes or so, the officer left and I went inside to continue the conversation with my daughter. I went up to her room but she was not there. I went into the bathroom, my bedroom, down the hall, but she was no where to be found. As I walked into the kitchen, I saw something out of the corner of my eye. I proceeded towards the dining room and behind the table I saw her body lying on the floor. I ran over to where she was laying, and tried to wake her up. Her purse is on the floor, with all of its contents sprayed across the carpet. She is unresponsive; eyes closed. After what seemed like several minutes, she awakens and tries to sit up.
Aubrey was very disoriented and confused as to why she was in the dining room. I brushed it off and began to explain why I was angry with her for taking my car, and how that decision could have led to a much more serious circumstance. I continue to talk to her for another ten minutes, and finally get her up off the floor and tell her to go to her room–I’d figure out her punishment after I calmed down.
A couple hours later, she came downstairs to apologize for her actions from the evening before. When I attempted to reiterate our conversation from just a couple of hours ago, she seemed surprised that we had even talked prior to that moment. She had absolutely no recollection of our time together, the police officer coming to the house, and definitely no recollection of me finding her on the floor of the dining room or how she got there to begin with.
That was her first tonic-clonic seizure, otherwise known as a grand mal. But even then, I had no idea what a tonic-clonic seizure was, and assumed she had passed out due to the amount of stress she was under. She showed me that she had bitten her tongue pretty bad, so at that point, I decided to take her back to the doctor.
The doctor said that seizures were common in teenagers and not to worry about it because she would grow out of it. He said to feed her better, and make sure she got adequate sleep.
By October of 2013, I had begun to search for neurologists because the focal or partial seizures were not stopping, but instead becoming more frequent, and almost a daily occurrence. I had also noticed she was having what are called absence seizures, where she would stare off into space and stop mid-sentence if she was talking. Sometimes she would remember what she was saying prior the absence seizure, and sometimes not and I would have to remind her. They never last very long–anywhere between five to ten seconds. Her focal seizures, the arms jerking and convulsing, would last about the same amount of time but would happen multiple times per day.
In November 2014, I finally got an appointment at Georgia Neurology. Her new doctor, Dr. Rahman, was very thorough and asked a lot of questions about when Aubrey’s seizures started, what happens during each seizure, her daily life schedule and about our family history. He prescribed Aubrey with Klonopin initially to help with her poor sleeping and stress until we figured out what was going on with her brain. At this point, she could not be officially diagnosed with epilepsy, let alone a particular type.
By the first of December 2014, Dr. Rahman had scheduled Aubrey a 20-minute EEG, but because those results were inconclusive, he scheduled her a 72-hour EEG over Christmas break. I was thankful he didn’t just write her off because the first EEG was inconclusive, and for the first time, I felt we were beginning to get the help we needed. For three days beginning December 22 through December 24, Aubrey wore a head-full of wires that recorded her brain waves and kept track of each seizure.
In early January 2015, my Grandpa Plank had fallen very ill. The kids stayed back home with their step-father, and because they were in school. We hadn’t heard from Dr. Rahman about the results of Aubrey’s 72-hour EEG yet, although I called a couple times about them, so I assumed everything was okay, and made the trip back to Ohio, my home state, alone.
It was a very stressful week. My grandpa’s health was worsening, my dad and family were all very emotional, I had missed my son’s ninth birthday, and was more than 10 hours away from my kids. But keeping strong, I trucked along taking care of whoever or whatever I needed to in Ohio. My grandpa passed away peacefully on Friday, January 9. The next day I was scheduled to make the drive back home to Georgia.
About two hours into my drive home that next day, I received a phone call from my husband. He was hysterical on the other end; I could barely understand the words that were coming from his mouth. All I caught was, “Aubrey is having a bad seizure! Oh, my god, babe, I am so scared! Oh, my god!” Instantly, I pull over to the side of the road and hear in the background a mixture of Abbott crying asking if his sister is going to die, and a woman saying, “I’m right here, Aubrey. It’s going to be okay. I’m right here.”
Here I was, still eight hours from home, and my daughter was having a seizure and I wasn’t there to help or protect her.
My husband had taken the kids to the T-Mobile Store to pick out new cell phones for each of their birthdays. He said that one second he was having a conversation with Aubrey about the phone she had chosen, and the next she was on the cold, hard floor having an intense seizure. Thankfully, a woman had walked into the store right after Aubrey had fallen, and because she was an RN, she knew exactly what to do and how to handle the situation.
I’m crying on the other end of the phone asking my husband if he or anyone else had called 911. I then hear the sirens in the background, and telling the medics to hurry up in my mind…drive faster…don’t stop…my baby is on that floor…what is happening to her…is she breathing? After several minutes, the RN gets on the phone with me and explains everything that had just happened, and assured me that Aubrey was okay. Aubrey was on the gurney, ready to head to the Children’s Hospital of Gwinnett for evaluation.
I don’t remember being that afraid, ever. Needless to say, the rest of the drive home was excruciating.
The following Monday, I called Dr. Rahman’s office to inform him of what had happened to Aubrey over the weekend. The paperwork from the hospital was faxed to his office, and after his review, he asked for me and Aubrey to come to his office. The results of her 72-hour EEG were in, and in his words, “was highly active, even during periods of rest.”
Aubrey was diagnosed as having juvenile myoclonic epilepsy, and was placed on an anti-convulsant medication along with the anxiety medication. Myoclonic epilepsy can also turn into generalized seizures, which Aubrey also has. Generalized seizures, also called tonic-clonic and grand mal seizures, affect the entire body and are the types seizures that people generally think of when they hear the word seizure.
Most recently, Aubrey has changed doctors again and is now a patient of the Children’s Epilepsy Center of Atlanta, and part of Emory Hospital. Her new doctor, Dr. Kim, is an epileptologist, which is a neurologist who specializes in epilepsy and neurosurgery. We have basically started from the beginning again, but we are hopeful that we will get some real answers now. She’s in good hands with Emory.