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, July 1, 2011

Test Results

We got my test results back this morning. My MRI is not normal anymore. When we did it in October, they said it was normal but questionable in one area. Well like they expected my left hemisphere is were the problem is located. My right hemisphere is normal. My left hemisphere is significantly delayed with more water than I'm suppose to have and less fat. This means possible dysplasia but we can't see on MRI due to the excessive water blocking the white matter. So we are going to come home and get a PET scan done as well as a 24 hour video EEG to see if I qualify for surgery. The neurologist didn't give us much hope that medicine will ever help me. I have already had 2 rounds of ACTH, 2 rounds of prednisolone, IV steroids, topamax, keppra, clobazam, clonazepam, trileptal, vimpat, banzel,lamictal, and the ketogenic diet. Of those therapies 5 have increased seizures, others have done nothing, and one helped but then stopped after a while. So based on my history of anticonvulsant medicines, it is not likely that we will find one to control my seizures. We will continue to try though. With God all things are possible. He basically told us today that surgery would probably be my best option if the PET and 24 hour EEG reflect the MRI. We don't really know what to think about this. Yes it would be awesome if they could go in and remove the part of my brain that is causing all this but it is very scary. We know that God will continue to direct our path as I continue on my journey.

3 comments:

Anonymous said...

Thinking and praying for all of you. It's time like these we don't know which direction, but God does. He will let you know. Meanwhile there's ton's of love & prayer's being sent your way. God Bless ALL OF YOU!!LOVE & PRAYERS Wanda & Randy Cannon & Devin Conti

The Mustard Seed said...

Monica...

I can't possibly pretend to understand all that you are feeling right now. I know how relieving it can be to finally have an answer... even if it isn't the one we want, yet at the same time be so terrified and over the solution itself.

I will remember Jadon and your family in my prayers! I know our Father is still in the business of doing miracles!

Lots of love and hugs,
The Watts Family

Catherine Esser said...

Jadon, you are continually in my prayers. Catherine Esser