24 Hour EEG Results:

On Friday, Dr. L called me with the results on Abigayle's 23 hour EEG. I don't know if I would call them results. They're more like a "mystery" if you ask me.
They found nothing! From the results of the test, it is showing NO seizure activity. I was extremely surprised by the results & am a bit frustrated. What we "thought" were seizures are not showing up as seizures. He did say she was having some misfires, but the times we pushed the button for the seizures, were nothing. Dave & I, along with Dr. L are so confused. He is unsure what is causing her eyes to do all the things they do, but wonders if we should go see her Ophthalmologist. I don't understand cause there were a few times that Abi would do the full on crunch & her eyes would look to the right (Partial Complex is what we were told before), and then her eyes would bounce or she would do the winking thing with her left eye. But they don't show up as seizures. WHAT??? I don't know what to think anymore. I am completely at a loss for words. I didn't even want to blog about this news, because it is so upsetting. Dave's dad said to me the other day, "Maybe she's tricking us." ha ha. It does not make any sense. Yes, what a blessing it is to hear that she is no longer having infantile spasms or seizures, but for some reason I do not believe that answer & will not accept the results until we find the "TRUE" reason for Abi's seizures. {Yes, I am going to call them seizures because #1 I do believe they ARE seizures, & #2 there is no other reason not to call them something different}. What is this new thing her eyes are doing? And when her eyes are doing these things, her breathing is labored, sometimes her eyes will water, & sometimes she is non responsive... all signs of a seizure!!! Now my other concern is, is the medication making her eyes worse and causing this to happen??? Or is it some type of tic she has picked up? Dr. L had a second Dr. look at the EEG results & he couldn't make out what to think of it either. They saw what we journaled while the tests was being performed. They saw how Abi's body would tense up & scrunch; saw her labored breathing, & saw her eyes do the things they did. How could the test not show up that anything was going on? Dr. L said he would review the video again, & call Abi's Ophthalmologists to get her in to see him. He also said he would do some more research on Aicardi Syndrome & on the medicines she is taking to see if these are side effects.
Am I wrong if I request another 24 hour EEG test to be done? Am I wrong to get a second opinion from another Dr? I am not mad or think less of Dr. L. He is just as frustrated as we are & wants to find the real reason for Abi's test results.
Since Abi was diagnosed with Aicardi Syndrome, we've had a father whose daughter has AS, email us. He keeps in contact with me & is very kind with his words of encouragement & support. It has been such a blessing to have contact with someone who has been through this with their own daughter. He & his family live in Texas. And there is a doctor in Dallas who is one of the top authorities in Aicardi Syndrome & has led many research projects for this disorder. We have talked about going down there to see him many times, but have never been for sure on it... until now. Dave & I really feel like we need a second opinion, & thought that he is somebody who can help us. As soon as I hear back from Dr. L, I hope to set up an appointment with Dr. E in Texas. Much thanks to Mike!!!
So there you have it, the results, or "mysteries" of Abi's EEG. For now we are at a stand still, but I know that there are answers, just not sure when we'll get them. Please pray for the Doctors & for Abigayle. We know there is something that the Lord is trying to teach us.