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, November 30, 2010

Neurologist visit

My appointment went great today. The blood work before my appointment not so good. It took them 3 times before they were able to draw blood. Once we were done with that I was much better. My neurologist is back and we are very excited about that. She increased my banzel because my medicine levels showed we could go up on it and because it helped so much when I started it. Hopefully the increase in banzel will help these seizures go down. I'm having about 80 a day now. I've been sick so that's why they are increased. I started another antibiotic yesterday. This is my 3rd one in the last month. This one is suppose to knock all this infection out. Time will tell. My neurologist also said once we are finished increasing banzel we will decrease topamax. I have to get more lab work done next Monday to see if my medicine levels are better. She said that I look great and she can tell I'm doing more. The dietitian saw us while we were there. My ketones were at 1.7 which means they are elevated but still low. She increased my ketogenic diet to the 3:1 ratio. I was on the 2:1 ratio. We are praying that these 2 changes will help control these seizures. They are starting me on carnitine because my blood work showed that mine is low. Carnitine helps the body metabolize fatty acids. Please pray that these changes will help control my seizures. It's really time for these to go away. If you look at the bottom right hand side of my webpage, you will notice that I have reached over 10,000 views. How awesome is that. That means I have been prayed for thousands of time just from my webpage :)

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