Meeting with the Neurologist

Earlier today we met with our Neurologist; it was a good meeting. He listened to us. He agreed with us and he was willing and ready to do what ever we as the parents decided to do. As the doctor, he affirmed how incredibly challenging the diet can be. He also told us that technically Quinn has only "failed" one medication. This last medicine was not increased to a high enough level to prove that it had failed. Because it is so out-of-this-world hard, he doesn't normally start his patients on the ketogenic diet until they have failed at least 2 meds. So he left the decision up to us.

He listened to us regarding the Doose syndrome. He agreed with the findings that Quinn demonstrated the seizure type to claim doose. That being said he suggested we try a new medicine, depakote. He said that this particular medicine wouldn't be his next guess but he was willing to try it if indeed Quinn has the Doose syndrome. {There really isn't any testing that we would go through to diagnose him- we just can use it as a stepping stone in finding a medication that may work.}

The past 4 days have been THE most emotionally trying days I have had to date. Not only do I have to witness all of the seizures but now I have to deny my child food. He has been so tired and deprived. He just sits on the couch, doesn't talk, and hardly moves. Yesterday afternoon he finally took a bite of a carb-free {disgusting} muffin. I cried. I cried and cried and cried. These were tears of joy to see my child actually eating. As I was crying Quinn looked up at me and kissed my check. "Your going to be okay Mom," he assured.. Adam said, "Why do you say that Quinn?" "Because I got a blessing that my seizures would go away. Your going to be okay Mom!" I couldn't even speak. These are the little tender mercies that keep me going. I know my heavenly father is with me.

...So when the doctor suggested we try another medicine-I was game. Anything to ease the pain.

Adam and I still have a lot of decisions to make regarding his treatment and how we are going to proceed but today I feel good. After leaving the office I asked Quinn if he would like to go to In-n-Out. He said yes. He ate his entire burger with out hardly breathing. He ate some french fries and had a drink of water. This was the first real meal he has eaten in 4 days. Within minutes the smile that I love so much returned, he started to giggle and play. He got home and wanted to ride his bike and right now he is playing a game with Anna. The seizures are still here but at least my child can eat. That I can handle.