Focal Aware Epilepsy
**Side note: I’m refraining from using the Doctor’s names we work with from here on out as I’ve not consulted with them or requested to use their names in this blog.**
After the unremarkable EEG results, we continued with our normal life while we waited to see the CHOP Neurologist. The day of the appointment, we honestly went into it expecting to walk out and hear that nothing was wrong with Nate and his episode on Easter was a random occurrence just caused by a bit too much sugar.
We had heard from friends that the Neurologist we were seeing was good…a few friends had kids go to her for different reasons in the past and said she was thorough and good with the kids. Even if we were convinced that we would be in the clear, I still wanted to know that the docs we were seeing were knowledgeable, well-respected, and sought out as experts in the field of Neurology.
We arrived at our appointment without any anxiety but as we sat with our Neurologist, I started to feel uneasy. She was incredibly thorough, having Nate explain the seizure he’d had (which he couldn’t because he said he thought that he was speaking and acting normally). She had me explain what we saw, the duration of the aphasia, and our perception of how Nate seemed afterward. We relayed everything to her about Nate’s most recent seizure and she said that the symptoms did indicate that he had a focal-aware seizure, likely originating from the temporal lobe.
She then asked us about the past and if Nate had ever had anything out of the ordinary health-wise in the recent past. The previous school year, we had Nate into the pediatrician because he had complained often that his feet, legs, hands, and arms would sporadically feel tingly. It was something that happened regularly (as in multiple times a day) for a few months, and while we attributed it to growth spurts, wanted to proactively rule out anything else. Nate had stress tests, heart tests, and bloodwork done and the doctors ruled out any kind of heart, lung, or bloodwork issues. They told us to keep our eyes on it and if anything got worse or more frequent we could do some more testing to rule out other things. We told Nate to always tell an adult if he was having those feelings, and as we progressed after those tests, the frequency of those feelings ebbed off…Nate would only occasionally tell us he was having the “weird feeling”. However, in the weeks leading up to his Easter seizure, they started to crop up again and now he described the feeling as if he had been somewhere before but couldn’t remember when. We told the Neurologist about this “weird feeling” and she described to Nate what deja vu meant. He agreed it was very much a “deja vu” feeling.
What she said next was that oftentimes, deja vu could be an indicator or precursor to seizures, that Nate has likely had more of these than we are aware, and that they seem to be milder in nature as they are not convulsive and that he does not lose consciousness during them. She explained that any more than two seizures defines someone with an epilepsy diagnosis, so she would qualify Nate as epileptic. She recommended that we immediately start Nate on anti-seizure medication (Oxcarbazepine) at the lowest pediatric dose and get an MRI with and without contrast to see if there were any obvious reasons that triggered the start of Nate’s seizures. This is where I got really apprehensive, largely because Nate potentially had been having seizures for a long time unbeknownst to us and we don’t know what damage is done from the seizures, why he’s having them in the first place, what will work, and what danger will they hold for Nate moving forward.
Nate is and always has been the most free-spirited, happy-go-lucky, hilarious, unique, and creative kid. I am scared that he will lose some of that, whether it comes from actual damage to his brain from the seizures, or damage to his soul from medicines, testing, doctor visits, and the heavy load of having no control over how his brain is functioning. I don’t want him to lose who he is, I love every part of this little person so much that it’s hard to stomach the idea that he has to deal with such a big diagnosis at such a young age. I’m sure much the way every parent who ever gets a diagnosis other than healthy feels. It’s scary, uncertain, and out of our control, which doesn’t exactly facilitate warm fuzzy feelings.
