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, September 10, 2011

Lamictal increase not so great:(

We increased my lamictal again. We have been thinking for several weeks that the lamictal was making things worse but in desperation to find a medicine that worked we wanted to be 100% sure. Well we now know that it is definitely making things worse. We increased it again and my seizures are out of control. It has also affected my personality. I'm very fussy and I want mommy or whoever is keeping me to hold me all day long. Some of the seizures are also making me cry. It's not very many maybe 5 a day but when I say cry I mean a terrified screaming with real tears. It's absolutely horrible for me and it's also horrible for my family to watch. Since it is the weekend and my neuro isn't on call, my mommy is just going to go back down on the lamictal. We will see our neuro Tuesday and I'm sure she will give us a plan to wean off the lamictal. I don't understand why these medicines make my seizures worse. They have all made them worse with the exception of vimpat and banzel. The banzel helped alot in the beginning but then stopped working. The vimpat has done absolutely nothing. The only other thing that has helped is steroids. I know it sounds crazy but last week when I pulled up and started crawling, I had just come off of steroids. I had to be put on them because of a bite I had on my leg. I was only on it for a week and look at the progress I made. Not only do I have a rare seizure disorder but I do not follow the books in any way. I'm very thankful for how far I've come. I know that it's our faith and prayers that have gotten us this far. I will win this battle one day. I'm too determined to give up now!!!

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