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.

Monday, July 26, 2010

Neurologist Report and Look What I can Do!!!


I first want to tell you my good news. Yesterday I started sitting up. I would sit while playing with a toy for about 1 minute. Today when my therapist came, I sat up for 4 whole minutes all by myself while playing with toys. My therapist was amazed at what I'm doing. I'm also putting some weight on my arms. Only about 3 seconds with my right hand but longer with my left. My new therapy mat is definitely working. I left you a picture of me sitting up like a big boy. You can see how proud I am. Now on to my neurologist report. My neurologist called this morning. She was out on vacation last week so she just saw all my results this morning. She said that since the EEG showed that all of my seizures are coming from one area she feels like I am having focal seizures. This means all my myoclonus seizures are coming from one spot. This makes her believe that there is something abnormal with the left side of my brain its just to small to see on MRI. So she is not going to start me on banzel. She wants to start me on trileptal. Trileptal is a seizure medication used to treat focal seizures. We will not start it for a week. She wants to decrease my clobazam and give it a week to make sure my seizures don't increase. Once I'm on a full dose of trileptal we will begin to wean me off of keppra. So I have lots of medicine changes coming up. Please pray that I will have a good transition of medication. Also pray that these changes will control my seizures. I will update you and let you know how I'm doing. Love ya, Jadon

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