My 10-year old is the youngest of three – intelligent, loving, and a raging social butterfly. At the start of last summer, she began to mention that there were times when she didn’t know what was going on, or when she felt “strange.” I thought she was overtired and brushed her comments off - but the episodes continued.
That October, after she stared at the LG heater on the dining room wall of our home for about 10 seconds, wandered out of the room, and then called out to me in a disturbed voice, I finally conceded that something may be going on. I brought her in to have a preliminary electroencephalogram - a test that evaluates the electrical activity in the brain via electrodes on the scalp (“EEG”) - done at a nearby neurologist’s office, and scheduled a follow-up new patient appointment for soon after. Her EEG included the standard protocol – a photic test (flashing light), an HV test (hyperventilation), and then quiet rest.
At her visit, the neurologist questioned my daughter and myself, let us know she had read the scan and saw abnormal activity, and prescribed her a titration of Lamictal, 6 month visits, and a follow-up EEG in at least a year. Pretty standard stuff for the Epilepsy community, but a brand new world to us.
I was suspicious of such a quick and seemingly “easy” diagnosis, and am not the biggest fan of prescriptions, so I got a second opinion from a well-known pediatric neurologist who had been practicing for over 30 years. After examining and questioning my daughter, reviewing her EEG and giving her yet another EEG, not only did he second the first neurologist’s opinion, but he added that he would’ve followed the same exact treatment plan.
I realized that together these two specialists had over 50 years of experience in their field, and they were saying the same exact thing. I will never forget how I felt in his office that afternoon as he, in between jokes with my daughter, gave me more information on her diagnosis. I nodded and smiled, but inside I was sinking into despair. I was one of those moms who tried to do “everything right.” She was the only one of my three children whom I was able to nurse, and I nursed her for 9 months, supplementing with iron-rich baby cereal and ground proteins, fruits and vegetables starting at 6 months of age as her pediatrician and all the child-rearing books said to do. Just as I did with my older two children, I fed her as much organic food as I could, padded sharp corners in the house, kept an eagle eye out for danger while she played nearby, sang to her, recited rhymes, used descriptive words in conversation, read to her, bought her brightly colored toys, made sure to spend time playing with her while also making sure she spent time playing alone to teach autonomy, encouraged her talents, used positive reinforcement and redirection when she was misbehaving, and...and here were two neurologists telling me that something was wrong with my sweet girl’s brain.
I remember thinking defiantly - and feeling stupid while I thought it: “But she was the one I was able to breastfeed!” I was so angry. Tears waited in the wings; I had done everything right that I knew of and it didn’t matter because nature clearly does what it wants. I sternly told myself “Enough!” and “There are worse things!” I asked him if he thought she would “outgrow” epilepsy. I had heard of kids struggling with it in childhood and having no problems in adulthood. He laughed and said that while many things can bring on epilepsy, he’d given up trying to make those kinds of predictions. Verbally patting my back, he assured me she was in good hands with both himself and her first neurologist, and that they would make sure she was following the plan that was the best for her.
I walked out subdued and in deep thought, while my daughter bounced out cheerfully, glad that her appointment was over. My mind was dark with frustrated thoughts, but it was a mild, sunny day and she happily practiced “Eight Days a Week” by The Beatles on her recorder while we sat in traffic trying to leave the city to go home.
Now I have an alarm on my phone for her morning and evening med doses, but we are not a family who is used to these timed, absolutely necessary type of meds. More than once I’ve grabbed her medicine and raced downstairs to her room in the evening, gently shaking her awake so she can sleepily swallow her Lamictal. I’m apprehensive about her sticking to her medicine routine when she and her sisters visit their father in Germany during the summer. I wonder if this will be a problem for the rest of her life. I mentally bite my nails as I worry about it getting worse as she gets older. I had read about people not being able to drive or seizing to death at night while sleeping.
But I also know that as much as the bad is possible, so is the good. And while I hate for her to be stuck on a medicine schedule, I am thankful. So far, Lamictal has given me back my happy, carefree girl who just wants to be a kid. She has not had one episode since starting it (knock on wood), but I know this is only step one of her epilepsy journey and is only one of many different kinds of steps in her lifetime. Epilepsy may play a prominent role and it may very well not. My job is to do my best, focus on the good, remain grateful, and to teach her to do the same.
Kimberly K. was born in Wisconsin, has moved over 30 times, lived abroad, and is married with three children. She has a BS in Health Services Administration from Drexel University and works in the medical field. Her interests include languages, writing, traveling, video editing, and making memories with family and friends.