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.

Saturday, May 14, 2011

Has it really been a week?


Sorry I haven't updated you. I have been busy helping my daddy build a fence this week...LOL I had a really good week. My seizures are staying around 70 a day. We haven't noticed a huge increase since we weaned steriods. Hey we are still under 100. We were fighting 200 a one time. We are getting there. We stopped the banzel wean at 300 mg. We were trying to get down to 200 but my seizures increased when we lowered the dose to 200mg. We now know that 300mg is the dose I need to be on. We increased my lamictal yesterday. Of course I'm still not on enough of this to know if it is going to work. So far there has been no change, but we were expecting that. I started sneezing a lot today and my nose is running. I really hope I'm not getting sick again. Please pray that this cold will go away soon. We have an appointment with my neurologist on the 24 so I will let you know what they say. I'm leaving you a picture of me on my new wheels. I can go backwards really well. I can move forward, but I go really slow. This is going to be a great therapy toy for me. Thanks you Katie and Coye!! I love it!!!!

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