Have I ever mentioned how much we love Elijah's doctors? He has the BEST people looking out for him, and his neurologist is no exception. He is WONDERFUL! His easy manner calmed me instantly at this morning's appointment, even before he said a single word. We chatted about our recent concerns, E's tics and recent onset of eye twiching/fluttering. He reviewed the EEG results from last week and even showed them (along with portions of the video that was taken during the test) to Dan and me and explained everything to us really well.
They couldn't have gathered better information from the EEG. During the period where they flashed lights in E's eyes, he had no unusual brain activity. Then a minute later, when there were no lights present, his eyes fluttered and there was still no seizure-like activity. Then later, as he was drifting off to sleep, there was a brief snippet of seizure-like activity and no eye fluttering. From all of that, we can conclude that the eye fluttering that happens when he looks at lights (outside of the test) is not seizure activity. The seizure-like activity they detected during the test was not a full-blown seizure, but indicates that he could have seizure "tendencies." There we go with the word "tendencies" again. How many times have we heard that word when people describe Elijah?! That could be normal or it could mean that at some point Elijah might possibly develop seizures. He made it sound like it was nothing to worry about now, but that we should let him know if it ever gets to the full-blown point.
Tomorrow we will go back to the clinic to get Elijah hooked up to an ambulatory EEG that will monitor brain activity for 24 hours. Dr. J wants to rule out full-blown seizures first and foremost. Seizures can disturb sleep, so with Elijah's sleep issues it will be interesting to see what his brain activity is like while he is sleeping...and waking up in those early morning hours.
Dr. J believes that Elijah has a tic disorder and that the eye movements, along with the rest of his body movements, are part of that disorder. Assuming we rule out seizures, there is nothing to do about the tics and there is nothing to worry about. He said when he sees a kid with tics, he knows two things for certain: the child has ADD (or tendencies, ha!) and the child has OCD/anxiety. Uhhh, hello! These are the exact things I've been saying about E all along. As he spoke, he just continued to describe our boy, as if he has lived in our home with us for the past seven years. "...these kids tend to be able to focus very well with things they are interested in. They cannot focus at all when there is no interest. Outbursts and an inability to transition out of an enjoyed activity are major issues, as well. Also, extreme stubbornness is common in these children..." Seriously, I felt like maybe a secret camera has been rolling in our home for the past several years. Dr. J told us that he had tics as a kid, too, and that most specialists can say the same thing. Dr. J has had the ADD "tunnel vision" his whole life and that is why he became a specialist. He loves his profession and is able to focus on it well because he loves it. He would not be able to focus on a different job without being medicated.
Dr. J hadn't seen Elijah since he was 2, and was impressed with how far he has come given all of his challenges. He gave Dan and I kudos for doing a great job with him, which felt good. We all know Elijah's the awesome one, though.
Click, click...I feel like we clicked at least a couple puzzle pieces into place today. Next, we will see what tomorrow's EEG tells us. After that, we'll explore more options with the sleep specialist and also explore ADD/OCD/anxiety. We're getting there!