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.

24 Hour EEG

Friday, we headed down to Primary Children's for Abigayle's "BIG" 24 hour Video EEG. The nurses were quick with getting the electrodes placed & having her head wrapped so we could get going with the testing. Abi cooperated really well, & we were able to catch all 4 different types of seizures (I think). I was a bit surprised at how many seizures Abi had while we were down there. When she would have a seizure we would push a button and then write down the date, time started & time ended of the seizures. Also we had to describe what her seizures looked like. She had a total of 6 seizures during her testing that we seen or caught. (She could have easily had more during the night or ones that were absent & we didn't notice.) If you count how many she had Friday morning before the test, & then the time she spent testing, along with Saturday after the test, Abi had a whopping 10 seizures!!! I am shocked! I have not seen Abi have over 3 seizure a day in such a long time. And for her to be totaling 5 a day, is frustrating. Today I have not seen her have a single one. It would be nice for her to be seizure free! One day that will happen! We will get the results from Dr. L by the end of the week. Hopefully by then, we can figure out what is going on in her little head & somehow find the medication to help stop the seizures. We took quite a few pictures of our long & eventful days spent down at Primary Children's. (Really it was boring.) But we are glad that Abi cooperated & had a successful testing experience!

Photo and video editing at www.OneTrueMedia.com

***Abi just started to do this with her tongue. She watches us do it, & then she does it. It's so fun to watch her do these silly things. She also started giving kisses this week!***

What's going on with Abi?

As some of you have asked...how is Abigayle doing? I thought it was time to post a little update on her. Things with Abi have definitely been exciting & frustrating. To start out, Dr. L had increased Abi's dose some more about a month ago, because she was still having 1 seizure a day. The increased dose seemed to help & Abi was seizure free for 5 DAYS!!! She then had gone back to having 1 a day, and we increased her dose again. Again, it helped & she went 3 days without having a seizure. The seizures came back 2 Sundays ago, and have increased in number from 1 to about 2-3 a day. I am a bit frustrated to see her have more than 1 seizure a day. It seemed like things were going good when we were down to 1. With her seizures coming back & increasing by number so are different types of seizures. The type of seizure Abi has is called {Partial Complex Seizures}. So on top of those I feel like she is having Absent seizures, which the only way I can tell is her breathing gets heavy & she has a blank look about her. She also is having a seizure that her left eye will slowly close and sometimes she does not respond but other times, she responds. I feel like these are her old Infantile Spasms that have come back.... YUCK!!! It makes me sick to think about. Most of the time she doesn't act bothered, but there are the few times she is. After she has a seizure, she is of coarse exhausted & falls asleep for about an hour or so. She also has had a few where her eyes will bounce... I call them her "crazy eyes". She's only had 2 or 3 of those. I get so bummed out when I see her have a seizure, but when I see a new one on top of the regular seizure she has, then I find myself depressed and scared for the unknown. This past week Abi has been sick with a horrible cold. I did not know your nose could produce that much snot. Poor Abi has such a raw nose now & is still trying to get rid of the cold. On Wednesday, Abi's worst day, she ran a low grade fever & had 2 REALLY strong seizures. This seizure was the kind where her whole body shook & her eyes rolled in the back of her head. We have never seen her have this type & so, to see it, Dave & I were a bit shaken up. She seized for about 1-2 minutes & then took about 30 seconds for her to come to, when she came to, she acted like nothing happened. But then 30 seconds later, she went back into another seizure. I immediately called her Neurologist, & was told that being sick & running a fever can definitely bring on seizures. We are hoping that those seizures will NEVER come back. Abi is still sick, & I am afraid she might have strep throat. Lyvie is just getting over strep, so it wouldn't surprise me if she caught it. So, I will call the Dr. tomorrow & hopefully get her on an antibiotic.
On a happier note. Abi can sit on her own. Dave & I no longer hover her when she is sitting. We can leave the room, & come back to find her in the same position! And, this past Tuesday, I was in my bathroom doing my hair, while Abi was laying on the bedroom floor, I heard her grunt. So I looked down, & she had rolled to her belly! Great Job Abi!!! She has rolled a few times now & each time I see her do it, I can't help but smile! She is slowly rolling, but with each day, she'll get better & faster at it. Her Physical Therapist came this past week and complimented on how much stronger she is. Her legs are so strong, & she seems to enjoy being on her feet. She also is rolling to her side & reaching for toys. And, bringing BOTH hands together. These things may be little for some, but to us, they are huge milestones. We don't take them for granted. They are great accomplishments & we are so pleased!!!
This coming Friday, we are taking Abi down to Primary Children's to have a 24 Hours EEG Test done. The reason why Abi is having this done is due to all the types of seizures she is having. Dr. L & I felt like it was the right thing to do, before we made another increase in her medication. Hopefully they will find what they are looking for and be able to fix or treat the seizures. Thank you everyone for your thoughtfulness & for your prayers. We couldn't thank you enough!