“March 28th at 3:40 PM.”
The neurologist turned away from the computer where he had been entering notes and looked at me quizzically. “You remember the exact date AND time?”
I was surprised by his surprise. How could I NOT remember the specifics of watching my daughter have her first seizure? It was a traumatizing experience and a clearly defined beginning point on her epilepsy journey. My journey as her advocate began with realizing how little information we had been given to care for her well-being and safety.
On that March day, C had a tonic-clonic seizure that cycled through three terrifying phases of tonic, clonic, and then back to tonic. Time was suspended in a horribly twisted tension as I both prayed for whatever was happening to end; while also wanting to stay in that moment forever because I knew at least she was still alive. I was convinced I was watching something trying to kill her. By the time we arrived at the emergency department (“ED”) of the nearby children’s hospital, I was sick with fear. We were fortunate to have a sympathetic ED doctor who calmed many of our worst fears but could give few answers. She told us to see a neurologist in the next two to three days. We left the ED anxious for answers from the neurologist and completely unprepared for how comically unrealistic it was to get an appointment that quickly. Despite efforts from my husband’s human resources department and our family doctor, the earliest appointment we could get was two months out. We were told to be thankful we got one that quickly.
The electroencephalogram (“EEG”) captured several absence seizures. C was diagnosed with Childhood Absence Epilepsy (“CAE”) with idiopathic generalized tonic-clonic seizures and prescribed Depakote. The neurologist made it sound very easy: the medication almost always worked, it rarely had side effects, and the seizures would be gone in two years.
The nurse gave us a single sheet of paper to get us started. One side had some basic information from the Epilepsy Foundation of America. We were given a stern warning not to read anything about epilepsy except what was on that website. The other side had a list of famous people with epilepsy. As we gathered our things to leave, I asked the nurse if there were any things I should look out for as we started giving C the medication. “No, not really.”
These were the tools and the information we were sent home with. No rescue medications. No safety precautions, and an unrealistic certainty that neurology itself rarely warrants. I didn’t even know enough to realize how unprepared we were. I left the appointment thinking we had gotten off easy. We would hardly have to think about it! I texted everyone the good news. I tossed the list of side effects the pharmacy stapled to her first bag of meds - why needlessly scare myself, right? - and gave her the pills without a second thought.
Of course, things are rarely that easy. C was a zombie and frequently fell asleep sitting up. She had terrible mood swings and often cried with stomach pain. At one point, the pain was so severe I called the nurse hotline and was told to take her to the ED to rule out pancreatitis. This time, we did not see a sympathetic ED doctor. He scolded me for coming to the ED despite my repeated reminders that it was one of the hospital’s own nurses who told me to come. He lectured me for being an over-reactive mother who got too upset over a few seizures. “You know, some kids have grand-mal seizures every day. What are you so upset about?” He put his face inches from C’s face and said, “Have you ever heard of taking a Tylenol?” I left with lab work showing there were no signs of pancreatitis and a determination we would never be treated that way again.
I started reading research articles and neurology book chapters on Medscape and PubMed. I joined an amazing parent support group on Facebook. When her neurologist did not measure her drug levels with her first round of blood work, I got our family doctor to do it because I knew from other parents it needed to be done. I learned that her neurologist was wrong not to prescribe rescue meds and insisted he prescribe them. I started learning the different safety precautions that we were never told. When the neurologist insisted that Depakote could not cause the stomach pain that plagued C, I knew the patient insert had four different GI disturbances in its “most common” side effects list. I got information from our family doctor on adjusting her diet to reduce the GI issues. When we finally decided it was time to move to a new neurologist who better met my daughter’s needs, I was not surprised when he said her symptoms better matched the research on Juvenile Absence Epilepsy. I had seen the same research and had the same thoughts. Recently, when her neurologist decided it was time to change medications, we discussed research and the pros and cons of each medication together. I felt confident with the final decision.
The lack of information and education provided to newly diagnosed families is unacceptable. We must educate ourselves and advocate for our children. I worry about families who do not have the resources I have: graduate school training in reading and evaluating research as well as access to other parents who have more experience and can provide guidance and support. Eventually, I became a moderator in the Facebook support group that had helped me so much. I am heartbroken by the number of parents who have just heard the diagnosis of epilepsy and left that appointment without the basic information they need to care for their child. The medical community must do better. In the meantime, it will fall on parents to be the warriors their children need.
Susan is a pediatric speech-language pathologist who works for Communication Interventions in Atlanta, Georgia. Susan lives in Decatur with her husband and their 15-year-old son, 11-year-old daughter, and three dogs. She enjoys reading (education and psychology are favorite topics), knitting, cooking, and yoga.