Jadon's Infantile Spasms Story
I created this blog so that our friends and family will be able to follow Jadon as he fights to overcome Infantile Spasms. I also hope that if anyone else is going through this, they will find this site helpful. I have posted a video of what infantile spasms look like, as well as everything we are going through. I hope by posting this I am able to get help for other children who are having these spasms. The earlier this is diagnosed the better. Feel free to leave me comments. I love to hear from you. If you have any questions just email my mommy. She likes to help people in any way she can.
Friday, September 23, 2011
After a year and a half, we FINALLY know why I'm having seizures.
We spent alot of time with the neurologist today. (By the way he is absolutely fabulous. He knew everything about me. It was very impressive.) We FINALLY know why I'm having seizures. I have something called cortical dysplasia. We have always assumed this is what I have but now we know. It has shown up on images of my brain. So what does this mean. I have 4 spots on the left side of my brain that didn't form correctly. There is no reason why but it happened very early on in the womb. There was a spot on my right side that was questionable but once the doctor examined me he was not worried about it at all. He said I'm considered one of the high functioning children with seizures considering how many seizures I have and that most of the left side of my brain is not working. The reason I'm doing so well is because everything is transferring to my right side. This is great news but what it means is my right side of my brain is working at least 3 times harder than your brain is suppose to work. Plus on top of that my left side is giving it all kinds of problems because I have so many seizures. The problem with this is that my right side can not continue to work this hard. Eventually it will say enough I can't do all this. The doctor said it is usually around the age of 4 or 5 but he can't give us an exact timing. So what is the plan. He wants us to try a medicine called vigabatrin. You have heard me talk about this medicine. It's the one that can effect my vision. We will try it for 1 month. The doctor said that there is very little chance that it will effect my vision in 1 month. He has never seen it and doesn't know any neurologist that has. The problem comes when you have to be on it for a long time. So we are going to give it a try. If the seizure stop then we will be extremely happy. If they do not stop then he said I'm ready for surgery. He has everything he needs to remove the parts of my brain that are not working. Yes this is very scary but if it could fix it and give me seizure freedom it will be worth it. The doctor said today that if we can stop these seizure then I have the ability to do really well and live a normal life. So we will see how I do with the new medicine. I start it tomorrow. Please pray for me and my family. We have so many feelings going through us right now. We are happy that we may can get rid of these seizures, worried about brain surgery, and scared about the decisions we will have to make. We believe that God sent us here for a reason and we know that he will show us what we need to do. I love you all very much and thanks for all you do for me and my family.