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.

Thursday, February 10, 2011

I've been doing great the last two days. I've had about 30 spasms if
that each day. The good thing is I'm only having them when I wake up.
So I have anywhere from 5-10 each time I wake up and then none
throughout the day. We decreased my topamax again Wednesday night.
It's so awesome to only have to take 1 topamax pill at night. I can't
wait to get off of it completely. We think the topamax was making my
seizures worse. You see we started it right after ACTH. We assumed my
seizures were going up bc I was done with the steroid. It's heart
breaking because I've been on topamax almost a year and we didn't know
it was making things worse. We know there was no way of knowing this
but it doesn't make it any easier. We are very thankful that I'm
getting some relief though. God is in control and we have to remember
that. Guess what? Tomorrow I'm getting a new cousin. My Aunt Rachael
is having her baby. I can't wait to meet him or her. I'll keep you all
updated. I love you and all your prayers :)
Sent from my iPhoner

No comments: