Another afternoon crazy seizure

On our way home from Easter celebrations Jayen had another seizure in the car, another afternoon seizure. Thankfully Matt was with us and was able to help. This one wasn't nearly as long as the other one, about 8 minutes. I was ready to call Onstar to see where the nearest hospital was. Thankfully the seizure stopped and we were able to make it all the way home. I pray these stop!

The way WE see things

Today we were watching a movie at Grandma and Grandpa Kuchta's house with our cousins Madison, Hunter, Morgan, and Brooklyn. They bought us the movie "Rise of the Guardians" for Easter. It was such a cute movie, but the cutest part didn't even come from a line on the movie. It came from Dalan. He was laying beside his older cousin Madison and was asking her questions throughout, but one question broke my heart. The character Sandman didn't talk. Dalan leaned over to Madison and said, "Why doesn't Sandman talk?" Madison replied I don't know. Dalan's quick whitted answer shocked me and I broke into tears. He said, "Oh he must have seizures like Jayen!" WOW!!!
I love that he doesn't see his brother as different. Everyone else must be like his brother. I love that little boy and am so thankful that Jayen has him looking out for him for the rest of his life!

WTF was that???

On the way to mom and dad's tonight Jayen had a seizure in the car. I was on the interstate talking to Nikki Vaughan and noticed Jayen hunched over. This was so crazy!!! He was shaking in his arms and legs. 12 1/2 minute later he started coming to. I have never seen anything like it from him. And of course, daddy was gone. He was on a fishing trip with some friends.
I called Dr. Frost's office and they increase his trileptal and gave us a new seizure plan with his diastat. Now we need to have to give him a second diastat if the seizure lasts longer than 10 minutes. If we have to give him a second one then we need to call 911. A second diastat can cause respitory distress so we need to have emergency management available. This scares the crap out of me.
I emailed Jayen's teacher and realized there are so many people I need to share this new information with. Better get to work!

Started Trileptal

After seizures on Saturday and Monday, we needed to do some medicine changes. Today we are adding Trileptal. Still not the medicine mommy wants to try, but we will do what the doctor orders. Hoping this works and doesn't have a ton of side effects!!!

Noticable Improvement

Jayen's teacher stopped me after school today and asked if we have made any medicine changes lately. Wow, what a great sign! Yes we have! She stated that he has been a little more stable and attentive in class. I am so happy we get rid of the Felbamate!

off of Felbamate

Today is our first day completely off of the Felbamate. We have been sleeping great since we started tapering on Friday. I am so thankful! We are not sure what we will do next but we are excited to be on this path!