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Karen’s Story

This is a story I never dreamed I would be sharing. This story is about my daughter Erin. Our story with epilepsy started on July 19, 2020. This day was nothing out of ordinary. We got up early (Erin, myself and her little sister). We went to a fundraiser for Erin’s best friend who got into a motorcycle accident, and made it back to town for a bridal shower we were going to. All was fine. We ate at the table, talking with another friend.

Gifts started opening and this will forever be in my head: As I was standing by Erin she made a sort of gasping noise. I turned to her and her head went back, and we laid her down on the bench she was sitting on. She started seizing. I had never witnessed a seizure before but it was obvious what was going on; thank goodness for the ladies who helped knowing what to do. Someone called for the ambulance. After what seemed like forever to me, which they tell me now was maybe 3 minutes, she started to come out of the seizure. By the time the ambulance came I had been able to get her awake. Naturally, she was scared and had no clue what happened.

We followed her to the emergency room, very thankful for a nurse at the ER who said Erin needed her mom (she was 19). Her father and I took turns going in with her. I was in the room when they came back with results from the CT scan, blood work, EKG … The doctor couldn’t find anything wrong. He said her EKG was a little off track and to follow up with the family doctor.

Two days after this big seizure we were home and had an appointment set to see her doctor. She suddenly drifts off in a way and I am trying to speak to her but she cannot get the words out, just sort of mumbles to me. I had been in constant contact with her doctor, who is also a dear friend. It didn’t last long and I asked her what happened. She was aware but she just couldn’t get words out to me. She called it déjà vu. She had experienced what she called déjà vu before sometimes when she would get anxious, but never having anymore than that. She had lost her stepsister 3 years ago, so yes, we have had very anxious moments.

Doctor day: We repeat the EKG, which is okay, and the blood work and we are referred to a neurologist to start seizure medication. Of course, with insurance you don’t get the MRI right away nor into the neurologist. Luckily we had a few connections.

We traveled to the neurologist. He was wonderful. He took so much time with her and answered and asked so many questions. From all of Erin’s symptoms and his belief he had a strong feeling she had Temporal Lobe Epilepsy. He wanted to do an EEG to confirm, and he also was so impressed her seizure medicine was working so well for her. Normally, he mentioned, we would have had to increase by now. Her levels were also checked and good after starting the medicine. So as long as she kept doing well, he agreed she could go back to college. I wanted the EEG done before that time came and she got it done just in time. All was going great. She went back to college ( I was nervous) but she had an awesome group of friends at everyone was aware including college of her newfound epilepsy.

We talked daily, almost every hour of everyday. She told me maybe about a week or so after being back at school that she had a feeling of déjà vu, so we contacted her doctor and they increased her seizure medication. And there were not any more issues after that.

She came home a couple different weekends and she was doing great, all was good. At the beginning of October her college shut down for a week due to COVID-19. On Saturday her dad went and got her and brought her home. The next day, her dad lost his taste and smell, as did his wife. We were sure they had COVID-19, and they did. Most of Erin’s friends at school had COVID-19. We talked daily multiple times and all was good; she was busy with her classes. On October 7, 2020 (Wednesday) she had a history test in the morning and classes all day. I talked with her after she finished her last class, and she was good. She said she was going to take a nap (not uncommon at all). She went outside and told her dad the same. This was close to 4 p.m. I remember we went to get pizza and came home.

I told my husband I am going to call Sis; she should have been up by now. I called and she didn’t answer, which I did not think anything of. A few minutes later, her step mother called me and told me she passed away, I didn’t believe it; she just laid down to take a nap. Well it was true. Erin’s dad went down to get her for dinner and it appeared she had a seizure.

Later that evening, the coroner called and told me Erin was positive for COVID-19. I believe he tested her two times. She had no symptoms, but as I said, her friends and college had a lot of cases at that time. So it was a little bit of a fight for an autopsy to be done because she was COVID-19 positive. Thankfully the coroner and local doctors found someone to do it. It was ruled a seizure, but basically nothing was found. Her medication was in the therapeutic range. All appeared just fine as she was that day.

That is my story. I do not understand and probably never will. We did everything right. She was on top of her medication: 7:55 a.m. & 7:55 p.m. Doctors have been over everything again and nothing makes sense. I wanted to share my daughter’s short story in hope of helping someone at least. I want to maybe try to help myself also, spreading her story, helping someone else because that is what my daughter did everyday.

Erin was a beautiful person and perfect daughter. She lit up any room and had a heart of gold. I miss her beyond belief. She touched everyone who knew her in some way. She excelled in college: all A’s & B’s, not a struggle at all. She had just turned 20 on August 22.