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.
Sunday, October 10, 2010
My trip home and a little more info
I first want to thank everyone who is following my story and praying for me. No we did not find a cause for my seizures in Boston, but we do know what kind of seizures I'm having. We also have a plan to try to control these seizures that are so hard to control. I know this sounds crazy but to not have a cause is atually the best thing that we could hope for. Now on to the last two days. We had a great flight yesterday. We left at 8:30 and landed at 11:00. I was so excited to finally get home and see my big brother. I did have an increase in seizures yesterday. It was probably due to the horrible day I had Friday. Right before they took me for my PET scan, I lost my IV. Well our IV luck had ran out. They could not get a vein. It took them 5 times to get me. In fact, I almost missed my PET scan. The medicine that they have to inject expires after so long. Mommy and daddy ran downstairs to necleur medicine and we made it in time. I was totally exhausted and then they gave me meds to make me sleep. We are asuming that is why I had an increase. My seizures have been pretty normal today. About the same as I was having in Boston. I have only been on the banzel for 2 days. We will not know if it is working or not for about 9 days. It takes 9 days to get on the full dose. Now we just have to wait and see what happens. That is the hardest part. We are trying to stay positive and look at the good in all this. One good thing is that since I'm having IS and not myoclonic jerks there is a 10% chance that I will outgrow this. We are also very excited that it is not affecting my entire brain. We don't know what the long term effects will be, but we have to believe that one day I will catch up. Please continue to pray that we will get these seizures under control. I'm leaving you a picture of me playing outside with my brother yesterday. I missed playing with him so bad and you can tell how happy I am.