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, December 8, 2010


I made it home this afternoon. The main reason for my admission was to get the medicine in my system quickly. That way we didn't have to wait a month to see if it works. So far we haven't noticed a difference in seizures. I started the medicine orally tonight. I will be on it for a week and if we do not see any change we will stop it. This new medicine is called Vimpat (Lacosamide). They are also taking me off of keppra. I'm on too many medicines and they are not working, so we are slowly getting rid of the ones that are not working. Our neurologist is back and says we have other medicines we can try before we have to try Sabril. The bad news is with each medicine that doesn't work there is a less chance that the next one will work. The other bad thing is we have tried the meds with few side effects. Out of the three she wants to try one can effect the liver, another bone marrow, and of course the sabril which can effect the vision. So how do you pick which one you want to try with those kinds of side effects. Basically we are all very sad that we are in this situation. This includes my neurologist. She is really trying to get these seizures under control. It's very frustrating. My brother even says "Aww Jadon don't do that". It's very sad that a 3 year old can recognize them. It makes my mom mad now. She use to say well we will try this or do this. We don't know what else to do and it makes us mad. I'm sure this feeling will go away but I can tell you its very rough on my family right now. We are having to make decisions that no one should have to make. We know God has a plan but it is hard. We have been patient for almost a year and it's horrible to watch me have hundreds of seizures a day. We will remain faithful, continue to trust him, and pray. He is the best medicine for me right now. We will also thank him for allowing me to be so alert, happy, and developing even if its at a slow rate. Thanks for all your prayers. My family appreciates them more than you know. We do leave Sunday for Boston. We will see the ketogenic diet team. So please pray for our trip. Love you all, Jadon

1 comment:

Anonymous said...

My heart breaks for the momma. I don't know you but I am overwhelmed with sadness for you. You are so right in saying that God is faithful and it is so great that you are remaining faithful to him. I too have had to deal with some very difficult things in life that have left me wondering why and thinking that this is unfair. I just wanted to take a chance to say that He really is right there with you and knows all and is all. I am ( and I really mean it) praying for you especially. I was directed to this site by a friend, Tabby. If you want to get in touch with me, my email is amycat70443@yahoo.com Sometimes talking to someone who has experienced trials helped me through the storm.

May God richly bless you and keep you and make his face SHINE upon YOU!

Amy Koch