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The term “seizure” can sound frightening and intense, but Boy1’s seizures are surprisingly subtle and gentle.

Over the summer, I took the boys to a birthday party at a park. One moment, Boy1 was happily playing with the other kids, and the next, he walked away with a determined stride. I called out to him, but he didn’t respond. I raised my voice, but there was still no reaction. He seemed completely focused on something only he could see. Eventually, I caught up with him, and he appeared disoriented, as if he was unsure of what had just happened.

Another time at dinner, Boy1 stared off into the distance, blinking intermittently and making unusual mouth movements while rubbing his face. Despite actively chewing his food, he didn’t respond when we called his name or snapped our fingers in front of him. After a few moments, he came back to the present, seemingly unaware of the brief lapse.

These occurrences have become more frequent over the past few months. We weren’t sure if the frequency had increased or if we were just more attuned to noticing them. They didn’t seem to disturb him, and he didn’t remember what happened. These episodes were unlike any seizures I had previously known—no convulsions, no signs of distress—just puzzling, brief absences. We wondered if they might be related to past trauma or if they could be linked to hunger or low blood sugar. We played detective, trying to connect the dots, until we could see the pediatrician.

Dr. T, our pediatrician, referred us to a neurologist for further evaluation.

The neurologist we saw was exceptional—thorough and proactive. During our appointment, Boy1 actually had an episode, which was incredibly helpful for her to observe. She promptly referred us for genetic testing, an EEG, and an audiology test. We managed to complete all of these the very next day—this kid has certainly had his share of delays in life.

The audiologist confirmed that Boy1’s hearing is perfectly fine. However, the blood test was a different story; he was not thrilled about being poked and insisted on returning to school (he was so mad at me), thanks to his augmentative communication device. During the one-hour EEG, he experienced four episodes, though I only noticed one myself. That’s how subtle these episodes can be.

The following day, the neurologist called to discuss the diagnosis of epilepsy. She prescribed daily medication and a rescue medication for any severe episodes with convulsions lasting longer than five minutes. Since starting the meds, Boy1 has not had a single episode, and he also seems to have had no issues with urinary incontinence—a problem he’d had since before coming to us. This makes me wonder if the incontinence was related to the seizures, which could have been going on for years.

While it’s a relief to finally have some answers, it’s also a bit heartbreaking and frustrating. It’s tough to think that it took us nearly a year to identify these issues, especially since Boy1 had been in a previous foster home for over two years without anyone noticing. He’s one of those kids who can easily slip under the radar—quiet, eager to please, and not causing trouble.

Looking ahead, we have more genetic testing and an MRI scheduled. The MRI will require sedation, which is especially tough for me to think about. He was so distressed by the blood draw that I can only imagine how he’ll react to needing an IV for anesthesia. I’m hoping there might be a less invasive sedation option available. Regardless, I know I’m going to owe him something major for this.

Featured image courtesy of Deposit Photos artist creativedia.studio.