Well, we will start with the lows of the past week so that we end with the highs!! We had a trying week in our house with the return of Nolan's seizures. It has not been uncommon for his seizures to start to return in the past, but as soon as we increased his medication they quickly would cease. Unfortunately this past week that was not the case. We increased his one medication as well as gave him an additional booster and he was continuing to seize. We had an appointment with our neurologist on Thursday. At that time Jeff and I decided to go forward with all of the genetic testing as well as repeat his blood work to make sure all of his electrolytes were in the appropriate ranges. The genetic testing results will not be back for 6 weeks!! Here is a picture of Nolan after getting all of his blood drawn.
Needless to say, with my "problem solving" personality this past week has frustrated the heck out of me. I really want to figure out not only what is causing the seizures, but also what to expect moving forward. Benign neonatal epilepsy, Nolan's diagnosis, is a diagnosis of exclusion which means everything else that it could be has been ruled out. Not having a history of seizures in our families we have forgone doing the genetic testing until this point. Now we are wondering if Jeff and I together might have mutated a gene and passed it to Nolan. The genetic testing also checks for other forms of epilepsy that are not outgrown. The doctors involved do not feel Nolan will suffer from seizures for the rest of his life, but there is a small chance and the genetic testing will help to determine what to expect moving forward. We added the second medication back and now with both the Trileptal and the Keppra Nolan's seizures are under control.
Now onto the highs... Nolan had a great first Easter weekend! We had a great time with family and friends over the weekend. The weather was gorgeous and we spent a lot of time outside. Here are pictures of Nolan and girlfriend Isla and big sister Madelyn. They were so cute together!
Nolan met the Easter bunny and was able to see all of his family on Sunday! We had a great day with him. Very grateful for a break from the seizures for most of the weekend!
I hadn't looked at your blog in a while. You have lots of great posts. I love all the Easter pictures, esp. the one of Nolan with your mom & Jim. I can't believe Nolan is already 3 months old. Give Nolan lots of hugs & kisses for me. Xo
ReplyDeletep.s. Isla is really cute. I had not seen pictures of her, yet.