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, February 15, 2012

Brain study results

I've been doing great the last couple of days. I'm still saying new words daily. The three main news ones are bubble, pop, and cat. I'm also using that right arm more and more each day. My mommy finally captured the movements that I do at night on video. She emailed it to my neurologist in Detroit around 5:30 am after she recorded them. He emailed us back within an hour to let us know that it was not seizures. How awesome is he? He said one of his children made these same movements at night. We didn't think it was seizures but it feels good to know for sure now. I have my EEG tomorrow at 12 noon so please pray that it is normal for someone with only half a brain. We did get some new results this week. My mommy and daddy decided to donate the half of my brain that they removed to epilepsy research. That way they would study to see if they could find a definite reason for why I had these seizures. They also did it to try and help others with epilepsy. The results were not what we expected at all. We knew from my PET scan that there were 4 big places that were not working on my left side of my brain. We assumed it was some kind of cortical dysplasia. Well it was not. In fact, my brain was formed perfectly fine. There was no malformation at all. What the study did find was scar tissue throughout my left side of my brain. This scar tissue was causing short circulation in my brain which was causing the seizures. That is why no medication helped me. So how did the scar tissue get there. We are not 100% sure. We do know that at some point I developed a brain infection. This infection caused my brain to swell. When the swelling went down it left all this scar tissue. The neurologist said it could have happened when I was still in my mommies tummy or sometime once I was born. There is no way to ever know. He said we were very fortunate that it only affected my left side. He said there may be some scar tissue on my right but he said it's really great news that I'm developing so well. He also said that we were fortunate that the infection came and went and didn't do any more damage. We are thanking God for taking care of me when I had this infection. My mommy and daddy are feeling guilty right now. They know there is nothing they could have done to prevent this but that guilt is there. All of my problems are due to an infection. You can't help but wonder if you could have done something different to prevent it. The good news is all the scar tissue has been removed and I'm not having seizures anymore. We have SO MUCH to be thankful for today. Please continue to pray for me and I will let you know the results of my EEG when I find something out. Love ya, Jadon

3 comments:

Megan said...

Oh wow! That's really surprising. So glad you know what was causing those yucky seizures.

Don't feel guilty. If there were anything that could have kept Jadon from having that infection, you would have already been doing it.

Still so encouraged by all his progress.

jedjakemom said...

Great News!! You have wonderful and sweet parents!

Kathy said...

Great news, Jadon! Tell mommy and daddy not to feel guilty. Everything happens for a reason in God's world. Keep on truckin little feller. My prayers are with you. Kathy