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.

Tuesday, June 8, 2010

EEG results(unofficial)


Ok so this is not official news, but my neurologist looked at my EEG and it is better. We will get the official results in the next 2 days. She said she did not see any seizure activity during my test. I was having what my mommy thought was spasms but she did not see any seizure activity while I was doing this. She said it is me trying to pull myself up. Can you believe that? Its very hard to tell what is seizure and what is not. That's why we have done so many EEGs. My mommy and daddy are so excited but they don't want to get their hopes up yet. Please pray that the other neurologist doesn't see any seizure activity. I am still having about 5-10 head drop seizures or what we think are head drop seizures. This is where my head drops and I lose control of my body muscles. My neurologist said that is fine. If they increase or if my spasms come back we are going to do a 24 hour EEG to see what is going on in my brain. During my EEG today my heart rate was really fast. It was about 145-160 while I was sleeping. They sent me up to cardiology where they did an EKG. The EKG came back abnormal so we have to go see a cardiologist next Monday at Childrens. My doctor said that this is nothing to really worry about. They see this abnorality in infants all the time. They just want to check it out and make sure that everything is ok. I have a virus and thats probably why my heart rate is up. We really love Children's Hospital in New Orleans. They do everything for me to make sure that I am ok. We are very fortunate to be so close to a good hospital. My neurologist was a little concerned about my appetite. I am not eating or drinking like I am suppose to. In fact I have lost 1 pound in just 10 days. This is a side effect of the topamax. We are hoping that I start eating more because we do not want to decrease my topamax. I am doing to good on this dose of medicine with the seizures. She also said that me not sleeping at night is just from the ACTH. We are hoping that I start sleeping better within the next two weeks. If not she will put me on some medicine to help me sleep. As far as scratching my head, its just me trying to soothe myself. So now we need your prayers. We need you to pray that my seizures stay away and not increase. We also need you to pray that I continue to develop. I have come so far in the past 3 months. Yes I am still delayed but I am making tremendous progress. Just this week I starting saying Ma. No its not momma but hey its a start and its babbling :) Thank you all so much for caring about me and I will let you know the official results when we receive them. I left a picture of me during my EEG today. I am such a good boy during my test as long as my mommy is holding me. Just look how sweet I am being :)

No comments: