Seizure Update

Facebook reminded me that it was a year ago that we learned that Emmie wasn't having the few seizures a day we were seeing but was in fact having a LOT of seizures every morning that we weren't seeing.  It has also been 2 years since she was diagnosed with her seizures.(You can read more about her seizures and diagnosis here.) So I thought it was about time to do an update. We so appreciate all those who have supported us, prayed for Emmie, and looked out for Emmie during what has been a roller coaster 2 years.
So a quick recap. We started on medicine#1 which works for most people with her type of seizure. It helped a little but didn't completely control them and turned her into a zombie. She spent most of 2nd grade exhausted and unable to focus. In April of 2nd grade we switched to medicine #2. Good news! She had NO side effects from this medicine. We thought we had the same level of seizure control as we did with medicine #1. The summer between 2nd and 3rd grade (last summer) the neurologist put her in the hospital to do a 24hr EEG to hopefully get a better picture of what we were dealing with.

It turns out she was having a LOT of subclinical seizures (once you can't see because they are so fast) in the mornings. He said he had no idea how she managed to function in the mornings. We opted to increase medicine #2 and hope that helped. So school started back and she had a really, really hard time getting out of the door in the morning and even her teacher was seeing lots of seizures. So we decided to switch to medicine #3. Happy Day! The seizures stopped! This was super exciting. For a  moment. Then we realized the medicine caused horrible behavioral side effects. It was heartbreaking and there were many times we felt like we were losing our child. It was such a catch 22 too because we had seizure control so we didn't want to come off of the medicine. Third grade was a really rough year. She couldn't focus, was very hyperactive, and couldn't see past the moment she was in. She was also dealing with major anxiety. We did see some breakthrough seizures every few months, all of which were triggered by some outside factor.
So that brings us to the end of May when we saw the neurologist again. He was in agreement that the medicine was probably our culprit for the behavioral problems and so we decided to try medicine #4. We're all still holding our breath as she's only been on it about 6 weeks but right now we have NO seizures and NO side effects. This summer has been so wonderful. We have our Emmie back. As soon as she came off of medicine #3 we could tell a HUGE difference. You can tell that she is so much happier too. We are SO hopeful that this medicine will be the one we have been looking for!