Neuro appointment

We had a great appointment with our neurologist today. We are going to make several changes in the next month. The first thing we are going to do is lower my banzel medicine. The last couple of times we increased the dose, it didn't help the spasms. We are going to decrease it to a more reasonable dose for my weight and age. She said that alot of these drugs reach their maximum potential and do not work past that. Basically we are going back to the banzels maximum potential. We are also starting a new medicine called lamictal. It will take 2 months to get on the appropriate dose of lamictal. We decided not to go with zonegran since it is in the same family as topamax. Topamax did not help me so we decided lamictal. The main side effect of lamictal is a rash. If I get a rash and continue to take the lamictal it could burn my skin. So we have to be very carefully with this new medicine. Since I get rashes very easily, we are asking everyone to not wear perfume and make sure you wash your clothes with all free and clear if you are going to be around me. This is only for about a month or two until we know I'm not going to get a rash. No we aren't being overly protective, we have to make sure the rash is due to the medicine and not perfume. We are going back to see my neurologist in another month. At that point we will see how I'm doing. We will then start to wean vimpat since it hasn't helped much. We will also decide if we are going to do a round of high dose IV steroids. If we do this, I will be in the hospital for 5 days. My neurologist was impressed with how much the prednisolone helped this round. You see that was the first medicine that we tried and it didn't touch the spasms the first round. She also said it is a very low dose of steroid compared to the ACTH that I had in the beginning. In all reality it shouldn't have helped as much as it did and it helped tremendously. So she is thinking that we might can knock these spasms out with a high dose of IV steroids. She wants to give my body time to recover from prednisolone before we give more steroids. She said the reason I can't stay on steroids for a long period of time is due to all the side effects. Just a few are shrinking of the brain, fluid in the brain, diabetes, high blood pressure, wiping out your immune system, and bone weakness. As you can see we spent a long time discussing our new plan. I'm very satisfied with the new plan. We just have to wait and see now. Overall she was very impressed with how well I'm doing. I say it all the time but its totally amazing what I"m doing compared to all the seizures that I have on a daily basis. Notice my shirt in the picture. I will definitely stay strong, I will fight, and I will win!!! Thanks for praying for me. Your prayers are helping me become a miracle.