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.
Thursday, October 7, 2010
We don't have the official results of the SPECT scan. He did say that it didn't turn out as well as expected. The first test was not great due to the shortness of my seizures. The medicine is suppose to be injected at the start of a seizure. Well mine was injected at the start but the seizure was so short they didn't get the full effect. The second wasn't that great because I can't go long enough without having seizures. With that being said, he did say that all my seizures are coming from the left hemisphere of my brain. That is also what my EEG is showing. So he seems to think that the PET scan will give us the information we need to determine if I'm a candidate for surgery. We will not know this information for several weeks. The entire neurology team has to study all the test results and then they have a big meeting on just me. It is about 20 people in the meeting which means 20 opinions. I think we are definitely in good hands. So now on to medication. We will not start the new medication until we get back home. I have to be monitored when I start the medicine and I have to have eye exams. I also have to be off the clobazam. The neurologist was going to wean me off by Thursday but he said my EEG looked alot better today since we stopped the meds. Unbelievable another seizure med that was increasing my seizures. Since this is the case, I will be completely off of it Monday. Mommy has to call my neurologist tomorrow and get me an appointment ASAP so we can start the new medicine. Please pray for tomorrow's test and for the doctor's who are studying my case. We love you all!!!