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.

Wednesday, October 6, 2010

A few results

We have not received all of my test results back but here is what we know so far. My MRI is normal. I am sad to say that my IS is back. These seizures that we thought were myoclonic are actually spasms. That is why I'm regressing. So of course the way we treat them is totally different now. After alot of studying, praying, and talking to the neurologist we have decided to go with Vigabatrin(Sabril). This is a risky medication because it can cause vision loss. My vision will have to be monitored real close. If the medicine does not work then we will discontinue it within a week. The neurologist thinks that we should give it a try because I'm having so many spasms and we need to stop them. Please, please, please pray that this will be our miracle medicine and that I will not have any side effects from it. Also pray for my family as the thought of vision loss scares them really bad. We do believe that God has us here for a reason and we have faith that this is what we are suppose to do next. We stopped the clobazam today and we will start the vigabatrin soon. The doctors are saying as long as we watch my vision closely we can stop at the first sign of visual change not causing too much damage. We should know the results of my SPECT scan tomorrow. We don't know how well it will turn out because you are suppose to go 2 hours without having a seizure. Well I can't make it more than 45 minutes. So we will see what the test results say tomorrow. I don't have any testing tomorrow so I can eat whatever I want. It has been very hard the last 3 days. Being sedated for 3 days in a row is absolutely terrible. At least we get a break tomorrow and then the PET scan Friday. As you can tell from my picture, I am still just as happy as can be. I will upate you as we get more information. Thanks for praying for us. We miss all of you!!


erica said...

what a great pic!! We have been praying!!

Dawson said...

Plan on calling you sometime during the day tomorrow.. Hope thats ok

Mona Wilson said...

Hey there Jadon.Just want you to know that we are praying for you & your family.Praying for a miracle! You are just sooo Beautiful & your story has touched my heart! I know your family loves you so much & they will keep up their faith! Mona Wilson