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.
Tuesday, July 13, 2010
Everything went great at my appointment today. She increased my clobazam but doesn't want to start me on anything else until my 24 hour EEG. She is very concerned about my right side. This side of my body is very weak. She wants to repeat my MRI after my 24 hour EEG. She is doing this test since I am older now. She is thinking maybe we missed something the 1st time since I am having so much trouble with my right side. This test will be done on Tuesday once my EEG over. They will have to put me to sleep again :( The only other reason my right side may be struggling is because I'm having so many seizures on my left side that my right side doesn't have enough time to recover. If this is the case, the EEG will show it. After my test are complete next week we will decide what way to go based on the results. She told us about a new software they are installing that shows what parts of the brain are working and what parts are not. She said I will be a candidate for this new test once they get it installed since I am having so many seizures. So lost of new test and new decision to be made in my near future. Please pray that we find an answer to all of this and that we can fix it. She was amazed at my development and said that we should be very thankful for how much progress I am making. Thank you all so much for praying for me. Love ya, Jadon