Final Results and Neurology Appointment

So UCLA gave us their final results and they were basically the same as the preliminary results. Surgery is not an option because the seizures are coming from her good hemisphere (the right side). The PET, MRI, and EEG validate eachother showing this finding.

Today we met with Amanda's NC neurologist. We are increasing her meds, adding a new one and hopefully removing one once we regain seizure control. We are also looking into a VNS (Vagus Nerve Stimulator), which has been found to be fairly helpful in treating patients with Amanda's type of seizures. If we decide to do this, it would be inserted by her Duke neurosurgeon. It is a longer run treatment as it takes time to get up to therapeutic levels of stimulation so we still need to hit the seizures hard in the short run to try to get them back under control. (Seizures are ranging from 3-4 a day to more than I can count). Her neurologist still felt like there is a lot of hope because she held steady for 6 years on most of her current meds and there are a lot of other meds and treatments out there that we haven't tried yet. It might just be a matter of changing some meds and possibly adding the VNS.

Amanda is hanging in there pretty well in typical Amanda fashion. She is totally wild and silly during the parts of the day that are not interrupted by seizure activity and is still into everything and pulling everyone's chains as much as possible. She did pretty well on the trip today despite rain, cool weather, and wind. We are blessed that she has such a generally happy disposition and sense of humor. She definitely lives life to the fullest and enjoys herself as much as possible. I think the favorite part of her day so far was the wrestling match surrounding changing her clothes. I am happy to report that while she definitely won several rounds, her clothes were eventually changed and I kept all of my teeth. Unfortunately, she did catch Nana with a sneak attack in the car and broke skin. As the late Chris Farley would have said, "That is going to leave a mark!" And it did...

Anyway, thanks for all the love, support and prayers. Amanda is a tough little girl and she is going to get through this bumpy part of the road to enjoy smoother travels in the future. I was frustrated yesterday and twice came across the verse "let not your heart be troubled" as I was reading. I know He is in control and I just have to trust and continue to have faith. He who is in her is stronger than he who is in the world. God Bless!