EEG results

Last month I posted about how we had gone Against Doctor's Orders by taking Nate off of his seizure medication last fall. The neurologist was not happy with me (even though we haven't seen a single staring spell since) and tried to reason with the defiant mom by saying we at least needed to do an EEG. If it came back normal or just slightly abnormal, no meds. If it came back like it did last year (no seizures but lots and lots of seizure activity that makes him highly susceptible to having a seizure), back on the meds he goes.

It was a "sleep deprived" EEG. And of course if the kid has to be sleep deprived, the parents do too. :) Actually, Blake kept him up until midnight, and I went to bed early and got him up a little after 4am. He was so confused and not happy with me. I just picked him up out of bed and carried him downstairs because I knew the screaming would commence and I didn't need both kids awake at 4am. He kept saying, "Wait! I'm not ready to wake up yet!" And for the next couple of hours, he said, "Oh, mama. I'm so sleepy." We watched a lot of train videos on my laptop. When I got him in the car to take him to the appointment, he said, "This car is so dark. Just right for a nap." I said, "Don't you fall asleep, mister!!!" I kept looking back at him in the rear view mirror, and one time he had his eyes closed. I said, "Nate!!! Wake up!" He said, "I'm awake. I'm just blinking, mama." No, he wasn't! The old "I'm just resting my eyes" excuse.

He sat in my lap in a big comfy recliner while she got all the glue and stuff on his head, and after she turned out the lights, he was out. I had nothing to do except watch the computer screen. I admit, I have no idea how to read an EEG (I'm pretty sure I can read a baby anatomy ultrasound and a CT scan though), but it didn't look good to me. There were lots of crazy looking lines, and every time the lines did something funny, the woman doing the test would look over at Nate, presumably to see if he was twitching or something. I never saw him do anything, but she looked like she was certain she would find something. Those blips happened a lot.

Of course she couldn't give me any results, and I had to wait a full week before calling for results. It turns out my subconscious really didn't want the results, because I forgot to call the next Monday. On Tuesday I left a message asking for the results. On Friday I realized I hadn't heard back so I called after hours and left another message. Then this morning I forgot my phone in the car when I went into work. I finally remembered it this afternoon, and when I went to get it, there was a voicemail. The voicemail was from Dr. Farber himself. Oh crap. It is never a good sign when the specialist himself calls you. I was certain he wanted to personally tell me, "Nanny nanny boo boo! Told ya so!"

I finally talked to him later this afternoon. He said .... the EEG looks the same as last year. Boo! BUT, he is fine with Nate not being on medication right now. Yay! He understands that we have not seen any seizures, and neither have his teachers. He wonders if this is just what Nate's brain looks like, with all the SB and hydro and all that stuff going on. I asked if it's possible that Nate is having mini-seizures all day long and that's what could be causing him to be so temperamental and agitated all the time. He said a) this is probably not what is making him agitated, and b) he was not saying that Nate was having seizures all day. His EEG's have not shown any seizures. They just show a lot of seizure "activity," which means he's highly susceptible to having seizures. So for now, no medication. But he has a "very low threshold" for putting Nate back on the meds. If we see anything twitchy, we are to let him know immediately, which of course I will do.

Of course I was hoping for a clean EEG, but I'm okay with this outcome.