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.

Friday, June 11, 2010

EEG results not as good as expected :(

I got my EEG results back today. It wasn't as good as expected. The movements my mommy has been seeing is seizures. Its just a different kind of seizure. Moms always know when something isn't right. My EEG did not show any infantile spasms and thats what my neurologist was looking for. When the neurologist that reads the EEGs read mine she saw seizure activity. I am having myoclonic seizures now. So this is my new diagnosis. We really don't know alot about it as we just found out today. I will update when I have more information. The good news about my EEG was that my background was normal. That is great because my background had started to slow. Thats why I had to do another round of ACTH. Other than that we are just trying to deal with more seizures. I have had 3 cluster of about 20 movements today. This is an increase in my seizures but my mom really doesn't know how to count them. Did I have 3 seizures or 60? Big difference I will find out Monday when I talk to my neurologist again. Hopefully it was only 3. Please pray for me and my family as we really don't know what to think of all this. We know that God has a plan for me and we are just trying to trust Him.


Anonymous said...

Jadon, sorry to hear about this. I know from my life that it sometimes get hard to trust but it will work out for the best. God does have plans for you, that is the hardest not knowing the plan. It is hard as being a parent to see this happening to your child but have Faith, God will help parents and well as the children. We will pray for you and your parents to give you the strength that you need at this time.

Love Ya'll

Anonymous said...

I just wanted to let you know that I follow your story on fb and on the blog, and I am praying for you and your family. Your strength is amazing!

Robin Legendre Skinner