In November of 2008, I was out shopping with my mother when my son went limp in his stroller and began to foam at the mouth. I LOST IT!!! My mother screamed, “Call 911!” and had a lady take me into the hallway as she attended to my son. There was another lady walking by the store and yelled she was a nurse. I don’t remember what she did, but she helped my mom take care of him until the Paramedics came. By this time my son was alert and crying, but we still had him rushed to the hospital. That’s when we were told he had had a febrile seizure.
According to the Epilepsy Foundation, children aged three months to five or six years may have tonic-clonic (tonic means stiffening, and clonic means rhythmical jerking) seizures when they have a high fever. These are called febrile seizures (pronounced FEB-rile) and occur in 2% to 5% of all children. There is a slight tendency for them to run in families. If a child’s parents, brothers or sisters, or other close relatives have had febrile seizures, the child is a bit more likely to have them. Sometimes the seizure comes “out of the blue”. A fever may begin silently in a previously healthy child and a seizure can be the first sign that alerts the family that the child is ill.
My son continued to experience febrile seizures over the next few years with no warning. We took him to see a neurologist and were told he should grow out of them. Then in November of 2013, another febrile seizure occurred. This time was a little different as he had two back to back. We took him to Children’s of Alabama and waited a few hours as usual. The doctor came in and told us my son was being admitted due to low oxygen levels. Day 2 came and I began to ask when we would be going home. The doctor told us to settle in because we would not be going anywhere until his oxygen reached 98% (89-90% at admission) and that children are not released with oxygen. One of the requirements during our stay was to attend a class on seizures. The class covered an overview of epilepsy, along with all types of seizures, and gave tips as well as other information. I had no idea at the time that this video would prepare me for my daughter’s diagnosis in the future. His oxygen increased and we were released on Day 4.
Fast forward to 2015, and again we were in Cleveland visiting family. I called my daughter’s name a few times and she didn’t respond. I thought she was being disobedient and when I grabbed her arm to turn her around, the look on her face was that of confusion, shock, and fear. Throughout the day she continued to gaze off, not responding to us, and then she would come back like nothing ever happened. At that moment I knew something was wrong. We continued to observe her, and the video from the hospital stay with my son popped in my mind. Immediately I called her doctor and described the symptoms, and although we were out of town, he made the referral to the pediatric neurologist and an appointment was scheduled the day we returned.
Her first appointment included an EEG, and that same day she was diagnosed with absence seizures (formerly known as petit mal seizures), a form of epilepsy. An absence seizure causes a short period of “blanking out” or staring into space. Like other kinds of seizures, they are caused by brief abnormal electrical activity in a person’s brain.
Most people are shocked to learn that she has epilepsy because they are only familiar with the kind that involves some motion (jerking, stiffness, etc.). Three and a half years later, she continues to take medicine and sees the neurologist for care. We were hesitant for her to participate in sports or play on the monkey bars but decided the diagnosis would not define her. She lives a full life as a seven year old, has played multiple team sports, loves swimming, and engages in most of the same activities as other children. Her EEGs must be free of seizure activity for two years before we can begin the process of slowing taking her off the medicine.
I often wonder how many other children suffer from this type of epilepsy without their parents being aware and treat it as disobedient behavior or a lack of focus. We are thankful that God prepared us in advance through the experience with my son.
Please consult your pediatrician if you think your child may be experiencing symptoms of seizures. For additional information on epilepsy and the different types of seizures, please visit the Epilepsy Foundation website. To learn about local resources, visit the Epilepsy Foundation of Alabama.