My brother was born with Hydrocephalus, three months premature. With that in the back of my mind, I was vigilant about the head to body ratio when Alex was born. The doctors confirmed that his head was larger than his body and that was enough for me to get a CAT scan. The results showed nothing abnormal and for that, I was thankful.
One summer we had a friend visit. He noticed that Alex would stare off and not pay attention quite often throughout the day. We, busy working parents that we were, never noticed it. Running him immediately to our pediatrician, they suggested we take him to a neurologist.
After an EEG, we were told that Alex had epilepsy. Petit mal seizures or absence seizures. They looked like staring spells, only you could tell these were different. He would sway slightly, lick his lips repeatedly and tug lightly on his shirt. These “ticks” were very, very slight. If you sat and watched him, for extended periods of time without interruption, you could see it. This happened at least 30 times a day by our count and they would last for 15-20 seconds at a time.
The EEG tested for his trigger. For some, the trigger is flashing strobe-lights, like in video games. For others, it’s hyperventilation. That was Alex’s trigger. So whenever he held his breath underwater, whenever he played tag with friends, blew bubbles, and especially during his one extracurricular activity, Karate, he would have seizures. I remember the Sensei telling us that little Alex was always off in dreamland, how he would be great at first, but would lose focus and zone out. I would talk with Alex and ask him if he just didn’t like Karate anymore. He would always tell me that he really was paying attention. He didn’t know. Mike didn’t know. I didn’t know. And when we found out it was all a part of epilepsy, we were riddled with guilt.
Every week, Alex had his blood drawn. The medication he was taking, Ethosuxemide, was the most trusted and commonly prescribed medication for his type of seizure. A side effect was possible decline in white blood cell count. Alex was doing well and had no side effects, at first. Soon, his blood tests showed that his white blood cell count was steadily getting lower and lower. The doctor assured me that it would be ok, that we had to monitor him, and the moment he had a fever, we had to rush him to the emergency room.
Low white blood cells meant low immune system. A cold or sinus infection could be very dangerous for him. I remember one day coming home and kneeling in front of Alex to check his temperature, like I did every day after I got home from work. I would do it in such a way that it wouldn’t alarm him. I would kiss his forehead and ask him how his day was. This kiss, on this day, at the doorway of my bedroom, came back hot. That was the last day Alex was home for the next month or so. He was immediately quarantined. I stayed with him. Every day and every night. It was a children’s hospital, so they had a sofabed for parents who had to stay with their children. I had a laptop and worked as Alex slept. Mike would come every day and then spend the evenings with our children.
Alex’s levels wouldn’t increase. Turned out that Alex was one case in a million cases of having an allergic reaction to the medication. I gave him that medication twice a day, for weeks. There was so much in him that he was practically depleted of white blood cells when he entered the ER. The doctor spoke with other neurologists around the country. They never heard of an allergic reaction to this medication, it was that trusted.
After a few weeks, the hospital was so concerned that his levels weren’t getting back to normal that they tested for Leukemia. My little 4 year old Alex had a bone marrow aspirate. His right arm was in a splint to keep it steady for the constant pokes, draws and IV drips. He tested negative for Leukemia, but the scare it instilled? I pray for parents, their families and the children that have to endure it.
Alex couldn’t get visits from the neighborhood kids, so it was just he and I mostly in the room with the nurses and doctors. Mike held down the fort at home, brought me food and time to take a shower and rest. It was then, I realized I couldn’t work full time anymore. Something had to be done. Alex needed care, a lot of care. Long story short, I became a stay at home mom.
It’s been two years and Alex is seizure free and I am back at work full-time. I still watch him like a hawk and when he daydreams, I panic. I will always panic. I will always worry. Day dreams are supposed to be fostered in children, and I have a hard time allowing him to daydream for very long. I always shout “Alex?! Alex?! Can you hear me?” When he had seizures, he couldn’t hear me, or see me until the seizure was over. It was like his brain was on a loop and he was stuck in limbo until the needle on the record player was moved to the next song. Snippets of his life, would just be missed.
He tells me that he doesn’t have brain freezes anymore. But with every fever, I am that mom again, on her knees with hot lips, remembering the look on his face, and his sweet, calm demeanor. Never worried about himself, and just wanting to make sure his “Favorite Mommy in the whole world is ok”.