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, January 6, 2011

My computer is broken so that's why I haven't updated this week. I'm
sorry to have to say this but we are weaning me from the ketogenic
diet. I was having about 90 seizures a day before the diet. Each time
we went up on the ratio my seizures got worse. I was having over 200
spasms a day. We spoke with our doctors in Boston and new Orleans.
They both suggested that we wean the diet. Boston said it's uncommon
for this to happen but that they have had several children that had to
stop the diet for that reason. You know I always do the opposite of
what I'm suppose to. So now what? We don't know. Once I'm completely
off the diet we will decide. Please continue to pray for me. We are
very upset that the diet wasn't our answer. My seizures are better
today. I've stayed around 100. Wow I never thought I would say 100 is
better. Ugh I hate seizures. I don't understand how I've been fighting
these for 1 year and still have little control. We are just trying to
stay positive right now and praying that God will lead us to the next
step in my journey.

1 comment:

Mary said...

Hi Jadon, I sat next to you on the plane on the way home from Boston a few weeks ago. I am so sorry the diet isn't working and that you are still having lots of seizures. I hope that your team will find something wonderful that will help you soon. Your Christmas pictures are so adorable! Tell your mommy I said hi. Love, Mary