Continued from previous page…… Needless to say, I did not go to work, but called my employer and told them that I was driving straight to her college 4 hours away and probably would be out for a few days. I called Jill’s dad (we had been divorced for years) to let him know what was going on, and then called a friend to arrange for pet care, as I had two dogs and a couple cats at home that needed watching. Off I went, no change of clothes, no toiletries, do not pass go or collect $200. Nothing else mattered at that point.
I had made the trip to her school many times before, and the usual tedium of that 200+ mile drive was replaced with a whirlwind of thoughts and worry, and the time passed quickly. When I got to her college town, I wound my way through unfamiliar streets and found the hospital, then made a beeline to the emergency room where Jill was sitting up in bed, with her boyfriend in a bedside chair. She explained to me she woke up about 6am that morning and “felt funny.” Apparently, that “funny feeling” was the aura before a grand mal seizure, and those tingly feelings she had talked about the week prior were the early signs of what was yet to come. That day, we proceeded down a frustrating and emotional path for the next few weeks, and it would change her life forever.
At that point, they had done more blood work, did an MRI, conducted neurological exams, and could find nothing. Clearly something was going on, but they couldn’t find medical evidence, nor did they witness “the event.” She was released from the emergency room to my care and we went back to her student housing condo. I planned to stay with her for a couple days to monitor things and just be her mom.
An appointment with a local neurologist was made, during which an EEG was done to track her brain waves. No seizure activity was noted during this test or any of the subsequent ones. So far, they had not been able to definitively diagnose epilepsy because none of the seizures were captured. In the meantime, Jill was having what was later defined as “complex partial” seizures: seizures that occur in the temporal lobe, are somewhat brief (2-3 minutes), and during which she lost all awareness but was totally conscious. And they were occurring several times a day. It soon became clear that finishing out the semester (it was almost Thanksgiving) was not possible. Jill’s seizures were becoming more frequent and the medications she was on had undesirable side effects and were not managing the seizures. She withdrew from school with an ‘Incomplete’ and would have to make up the classes another time. I think the disruption of her studies and possibly graduating later than planned upset her almost more than her illness.
At this point Jill could not drive, so we packed up most of her things and piled them in her car and mine; her dad and she drove home in her car, while I drove solo. During the trip home, my ex was trying to track the numbers of seizures, as they were becoming alarmingly frequent. We made the decision to drive directly to Emory University Hospital, which has a dedicated Epilepsy Unit and top neurologists on staff. We spent several hours in the ER until very late at night, witnessing seizure after seizure, but the neuro resident would not admit her because of a policy which did not allow admissions to the Epilepsy Unit directly from the ER. Needless to say, this “policy” and the doctor’s refusal to admit Jill was an upsetting end to a very long day. We left the hospital exhausted and frustrated.
Over the next couple of days, we managed to secure an appointment with a well-known neurologist and director of the Epilepsy Unit. Jill went through more neurological tests, questions, and of course, more seizures. She was admitted that day and hooked up to a video-EEG monitoring. No medications were administered in these first few hours because they wanted to record the brain activity. We found out the next morning that Jill was actually having seizures every three minutes! Status Epilepticus. They immediately started a series of IV anti-seizure drugs and her seizures finally subsided after 4 hours. Jill stayed at Emory for a week, during which we “celebrated” Thanksgiving” and worried about her health, her studies, and how this would affect her life.
Over the course of the next few weeks, Jill remained seizure-free, but had terrible side effects for the drugs she was taking. The doctor weaned her down off of these, then switched her to a high dose of Keppra, which managed the seizures and eliminated the side effects with the exception of fatigue.
Jill went back to school before the next semester started, made up the classes she was not able to finish, then started the Spring semester right on time. Her determination and perseverance under these circumstances was incredible. She was tired most of the time and taking a tough curriculum. I still marvel at the fact she could do this, and especially so with impaired recall and constant fatigue.
Jill graduated in May 2016 from Georgia State College & University with a Masters of Science in Nursing and passed her Family Nurse Practitioner boards. She got married in June 2016 to a wonderful guy and they start a whole new chapter in their lives. Jill has learned that epilepsy is not going to hold her back from achieving her dreams.