Wow, first of all, I've never had as many commenters as I have in the last week. Wow. Honestly, I've never needed the voices of support like I have in the last week. So thanks, both old and new readers, and you lurkers out there, too. :)
Before all of the drama of this week, KayTar had had an "episode". The more we have discussed it and anazlyzed it, we have decided that it probably was NOT an episode. Unfortunately, we do think it was a seizure. We do not think it was an episode, because it did not include any episodic behaviors; no head tilt, vomiting, dizziness, pain, or light sensitivity. The only common factor between both events is that her behavior clearly showed something neurological was happening. There is a change in mental awareness and behavior when there is a neurological event in progress. The reason we are leaning more toward seizure is that she exhibited typical seizure behavior. And with KayTar, nothing has ever been typical. We've worried about seizures before, as a part of an episode...or at the beginning we thought the episodes might be a form of seizure, but they were NEVER typical. This one was. She had involuntary motor movement (jerking, rolling of the eyes), then she fell asleep suddenly and basically slept until morning. Episodes last for hours. This was only minutes.
I spoke with the pediatrician, and I said, "If I didn't know seizures were off the table, then that would have been my first thought..." and she said that seizures are not off the table. For some reason, I thought that this EEG had taken seizures off the table. Alas, it did not. An EEG is only a snapshot of her brain at a specific moment. The pediatrician said that is she was having some continuous focal seizure activity in the brain, it would be picked up...but random seizures would not be unless she was actively having one while the EEG was being recorded. The neurologist did tell us that at some point, whatever migraine syndrome they believe her to have could trasition to true seizures.
Where does that leave us? It leaves us where was always are, waiting and wondering. Are we glad there is a chance the episodes are becoming a thing of the past? Yes. Do we feel that seizures are a trade up? No. Episodes did not damage the brain, although they are horrid and incredibly painful. Seizures, while mild in comparison, do have the potential to damage her brain. Do we know for sure this is was a seizure? No. Do we feel like it is a strong possibility? Yes.
Are you ready to hear the amazing plan of action?
Here it is: Wait for something else to happen.
Even if it was a seizure, if they only happen once in a blue moon (or every 46 days), then preventative medication would not be worth it. If we do see a repeat performance in the near future and this becomes a trend, then we will have to discuss medication options. If we discover a trigger, like the fact that the windows were down, the wind was blowing, and the sun was behind the trees flickering in and out, then we should avoid it.
Yesterday, we had something else happen. KayTar was sitting with her daddy on the couch, and she tried to sign "Daddy", but she poked herself in the eye instead. She didn't do it very hard, in fact I can show you how hard it was.
Take your hand (whichever you would like) hold it in front of your face, thumb pointing towards your face, fingers fanned out, and tap it on your forehead. There! You signed "dad". Good for you!
Well, that is what she did, only she missed her forehead and caught her eye. She fussed a bit, and kept her eyes closed for a few seconds. When she reopened them, the eye she had poked was pointing inward to her nose and drifting. Her other eye was properly aligned. She blinked a few times, but it continued to point inward and move slightly. It lasted 1-2 minutes, and then she started gagging and almost vomited. We ran her to the bathroom, and then suddenly everything went back to normal. It was very strange, but strange doesn't necessarily mean anything...it is KayTar we are talking about.
Strange is almost normal here.