11/5-6 Update

So yesterday was one of the more intense days we have had. We started Amanda's new seizure med (Vimpat) and it is not the med for her, or at least not in combination with her other current meds. She got dizzy and lost her equilibrium and was unable to sit or walk for most of the day. It also made her extremely emotional, primarily on the agitated side. She would go through peaks of crazy happiness (about 10% of the time) followed by long times of extreme unhappiness with non-stop crying (about 80% of the time) with about 10% of the time being in between those two extremes. I felt horrible because I sat her on the floor for about 5 seconds to shift position on the couch and she crashed over sideways and smacked her head on the floor. Luckily, she quickly shook it off and seems no worse off for the experience.

Today is a MUCH better day. She has regained her equilibrium and can sit and skooch around without falling over. She is actively playing and is happy! It is so good to have our typically happy Amanda back! She has been building towers and knocking them over all day, and is giggling a lot. Throughout the day so far, she has gotten better and better. She also has a hollow leg and has already eaten a bowl of cereal, peace of toast, 2 eggs, hash browns, bacon, chips, OJ, and water and it is only noon. And yes, she is super skinny despite her less than low calorie diet (41 lbs at 7.5 years old). She is telling me she is hungry again so off to cook I go in a few.

We watched the VNS video last night and it seems like it might be a good option for her. It is kind of like a pace maker for the brain. The unit would go in her left chest and it would be connected to a wire that would wrap around her left vagus nerve in her neck. Thankfully it does not involve brain surgery, although it does involve surgery (about an hour - an hour and 15 minutes long). The unit is particularly effective for her type of seizures and many patients have had significant seizure improvement and lowering of meds. Basically, the way it works is that an electrical stimulus is sent up the vagus nerve into the brain at short intervals throughout the day. Those impulses keep the brain from creating the big electrical spikes that result in seizures. Most patients see some benefit although the degree of benefit varies. I will keep you posted on what we decide but right now the long range potential benefits of lower seizure meds and better seizure control sound appealing.

This is the day that the Lord has made. Let us rejoice and be glad in it. We are truly rejoicing that Amanda is having a good, happy day today with fewer seizures! Have a great Sunday! God Bless!
Susan