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.
Friday, January 18, 2013
We got our official EEG results today. After further evaluation they are not even concerned about the original possible spiking that they saw at first. So my EEG was fine and we are going to wean me off my last seizure medication. Oh what a glorious day this is...wow I thought I would be on seizure medication for the rest of my life. Please pray for me as we start this wean. We do not want any seizure to start. We really don't think they will because I have recently gain 12 pounds and have grown over 4 inches. So I'm not even on the correct dose of medication for my height and weight. This means the medicine probably isn't doing anything anyway. It will take about 2 months before I'm completely off the medication. Thanks for your prayers and thank God for this day that we never dreamed we would ever see!!! Love ya, Jadon
Thursday, January 10, 2013
First of all my EEG showed that I am not having any seizures. Praise GOD. My doctor did say my EEG is kind of confusing. I'm going to do my best to explain. First of all my background is normal and she isn't concerned at all. She said this is very good. There also isn't any slowing except for when I'm going to sleep. This is also very normal. She said overall my EEG looks great. Now for the confusing part. There is a small area that is spiking ever once in awhile. So what does that mean? Well it can mean two things. It could be absolutely normal. She said I could hook anyone up to an EEG and it could show some spiking. Some people have natural brain waves that just do this. The problem with me is that there is nothing to compare it too. If I had my left side we could look at the brain pattern and know if it was normal or not. So what are they going to do about it. They have to pull my EEGs that were done before my surgery and compare it to that EEG. They still don't know if that EEG will help because I was a lot younger then and brain wave patterns change as you get older. They are also going to look at my PET scan. If you remember there was an area of concern on my PET scan that was done in Detroit. We are not concerned about that area because I'm doing so well. If the area from the EEG and the PET correlate then we will know that it is possible an epileptic area. If not we will know it is not. I hope I explained it well enough for you to understand. When your talking about the brain things get complicated. The good news is I AM NOT HAVING SEIZURES and they DID NOT see any seizure activity during my EEG. As far as the medicine goes we are going to wait and see what the final findings reveal. We are also going to send my results to Dr. Chugani. He studies EEG with people with hemis all the time so he will probably know right away if this is a concern or not. I actually feel like making an appointment with him and flying to Detroit to discuss everything but that's just not possible right now. Overall we are pleased with the results we got and are excited to say I have been seizure free for 1 entire year today. I hope to see everyone this afternoon at my seizure free celebration!! We are asking that you continue to pray for me and that you thank GOD that I am seizure free!!! I'm leaving you a picture of me during my EEG. I was such a good and happy boy!!!
Sunday, January 6, 2013
I will be admitted to the hospital this Tuesday, January 8. They will hook me up to the EEG machine for a 24 hour EEG. This EEG is very important. It is the EEG that will tell us if I can stop taking my last seizure medication. I can not believe that I may be able to get off all seizure medication. I thought I would have to take seizure meds for the rest of my life. Its an amazing feeling to know that I have made it so far. Though we are excited about this EEG we know its not going to be fun. I do not like staying in one place. I use to sit in the bed and play with mommy before I could walk. Now that I'm walking my mommy doesn't think this is going to be easy. So please pray that I will leave the equipment on and that I will cooperate for my testing. The main thing I need you to pray for is that I will have a normal EEG for the entire 24 hours with no spiking and no seizures. We don't expect it to show anything but there is always fear when you have to go in for testing. Thanks for your prayers and I will keep you updated while in the hospital. I also want to remind everyone about my 1 year seizure free celebration. It is this Thursday, January 10 at 5:30 at the Baptist Church in Amite. I hope to see you there!!! Love ya, Jadon
Saturday, January 5, 2013
1 year ago today my mom laid me on the operating table to start the first of my two brain surgeries. This was the surgery where they put the electrodes on my brain in order to see exactly where the seizures were coming from. The surgery went well and I went to the PICU. It then turned into the worst day of my life. They had held my seizure meds and I was having lots of seizures. They were the worst seizures my mommy and daddy had ever seen me have. Not only was I having seizure but my mommy couldn't hold me. I had way to many wires coming from my head plus I had just come out of surgery. All she could do was lean over my bed and put her head as close to me as possible. Its a feeling my mom will never forget. It was honestly the worst thing we have been through as a family. Its so hard when your child is in pain and there is very little you can do. My seizure got so bad that the doctors immediately said they had enough information and to put me back on my seizure meds. For the next couple of days I stayed sedated most of the time. If I was awake I was having seizures, crying, and in lots of pain. It was at this point that we were wondering if we made the right decision. I can tell you 1 year later that it was definitely the right decision. I'm attaching a picture of me right before I fell asleep and we walked to the operating room. I'm sticking my tongue out to show them what I think about it.
Love ya, Jadon
Love ya, Jadon