"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Tuesday, December 20, 2011

December 20, 2011

Benjamin's almost 6 weeks into the Ketogenic diet and we've seen no improvement. The first couple of weeks were hellish. He was up to 90 seizures a day, the reflux was horrific, and he was just plain miserable. We were told his seizures could increase for about two weeks so we were prepared for it, but had high hopes we would see a significant decrease after that time. The hardest part was the follow-up appointment we had with Dr. Thiele. The whole team was as defeated as we were!

He's still on the diet, but probably not for much longer. Benjamin will most likely start a new drug called Banzel within the next few days. Banzel is the only drug left to try that has been found to effectively manager the types of seizures he's having. His epilepsy is difficult to treat because the seizures are firing from multiple spots in his brain. If this drug doesn't work, there are two left (both of which have scary side effects) that aren't as promising, and then it's back to square one... meaning we revisit all the drugs he's already tried.

Despite the seizures, Ben's had some great days. He's my little cuddlebug and his smiles melt my heart. Usually during the early hours of the morning, Ryan and I end up with both kiddos in our bed and I love waking up and hearing Jadyn say "Good morning Ben Ben! Awww... Mom, he's smiling!" We are so blessed.