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.
Monday, September 26, 2011
I have been an vigabatrin for 3 days now. My seizures are better. They are not nearly as intense as they have been. I'm also not having as many. I'm having about 80 a day instead of 150. Though we are seeing improvement, we have a long way to go. I need you to pray that these seizures will continue to decrease. We also need this medicine to continue to work. I've had success at first several times but the seizures have found a way around it. So please pray that the seizures stay down and continue to get better and GO AWAY forever.. Thanks for your support and prayers.
Friday, September 23, 2011
We spent alot of time with the neurologist today. (By the way he is absolutely fabulous. He knew everything about me. It was very impressive.) We FINALLY know why I'm having seizures. I have something called cortical dysplasia. We have always assumed this is what I have but now we know. It has shown up on images of my brain. So what does this mean. I have 4 spots on the left side of my brain that didn't form correctly. There is no reason why but it happened very early on in the womb. There was a spot on my right side that was questionable but once the doctor examined me he was not worried about it at all. He said I'm considered one of the high functioning children with seizures considering how many seizures I have and that most of the left side of my brain is not working. The reason I'm doing so well is because everything is transferring to my right side. This is great news but what it means is my right side of my brain is working at least 3 times harder than your brain is suppose to work. Plus on top of that my left side is giving it all kinds of problems because I have so many seizures. The problem with this is that my right side can not continue to work this hard. Eventually it will say enough I can't do all this. The doctor said it is usually around the age of 4 or 5 but he can't give us an exact timing. So what is the plan. He wants us to try a medicine called vigabatrin. You have heard me talk about this medicine. It's the one that can effect my vision. We will try it for 1 month. The doctor said that there is very little chance that it will effect my vision in 1 month. He has never seen it and doesn't know any neurologist that has. The problem comes when you have to be on it for a long time. So we are going to give it a try. If the seizure stop then we will be extremely happy. If they do not stop then he said I'm ready for surgery. He has everything he needs to remove the parts of my brain that are not working. Yes this is very scary but if it could fix it and give me seizure freedom it will be worth it. The doctor said today that if we can stop these seizure then I have the ability to do really well and live a normal life. So we will see how I do with the new medicine. I start it tomorrow. Please pray for me and my family. We have so many feelings going through us right now. We are happy that we may can get rid of these seizures, worried about brain surgery, and scared about the decisions we will have to make. We believe that God sent us here for a reason and we know that he will show us what we need to do. I love you all very much and thanks for all you do for me and my family.
Wednesday, September 21, 2011
Sorry I've been slacking on the updates. Just been a little busy. First I want to start by saying I'm standing up. I can only stand there for about 10 seconds but its a start. I also started saying no no no. I've been very talkative this past week. My favorite word right now is ma ma. You know she is my favorite person. LOL I love my daddy and brother too. Well on to my trip. We made it to Detroit yesterday around 3:30. I was wonderful on the flight. I slept most of the time and when I was awake I was smiling at people and trying to get all the attention. The best part of the plane ride was landing. I screamed really loud like I was on a roller coaster. I'm not sure if the people on the plane liked this but oh well I was having fun. Once we got here we took a taxi to the Ronald McDonald House. The house is awesome. We even have our own private bathroom. The people here are very friendly. Tonight the local electric company came and cooked supper for us. It was very delicious. One of the guys that cooked for us had his son with him who had epilepsy too. We talked to them for a while. He actually sees the same doctor as we are going to see Friday. They said he is wonderful. Another great thing about the house is it is only $10 a night. We will not be able to stay here Friday night but that's ok. We are very thankful to get to stay here the other days. The hospital is right next door to the house. I had my AMT PET scan done today. It went alot smoother than I expected. We got to the hospital around 8:00 this morning. We had to wait for the medicine to be made. You have to be at the hospital before it is made. We waited until about 9:30. They took me back and started my IV's. Yes that's right I had to have two IV's. One to put medicine in and the other to draw blood out of during the test. The two have to come out of separate veins, they can not cross. The nurses did a great job putting them in. I was kicking and screaming and giving them a hard time. It's amazing they got them in so quickly. I went into the PET scan around 10:15 and I was done by 11:30. The doctor wanted me to use the new scanner. That scanner is faster and was able to do the test in a little over an hour. We originally were told it would be over two hours. So this was a blessing that we were able to use the new scanner. Once the test was over, they woke me up and we were back at the house by 12:00. We took a long nap once we got there. When I woke up we walked to the market and bought some groceries to keep at the house. So thank you so much for your prayers. Today was much easier than expected. We do not have to go back for any testing tomorrow. We are going to try to go do something in the city. Just so you know, this is not the best city we have been to. It's a little scary. So glad my daddy is here with us. In fact we walked to a place to eat yesterday afternoon and turned around. We did find a better area to go today. I will keep you all posted. We see the neurologist Friday and we should have some results. Thanks again for praying for me and please continue to pray for good results Friday. I love you all very much!!!!
Tuesday, September 13, 2011
My appointment went well today. She is taking me off lamictal. It really hasn't helped and I have become so miserable on it. It will take about 4 weeks to get me off of it. We are also starting a new medicine called zonegran. I start it tonight and it will take about 4 weeks to get on a reasonable dose. Again we are praying that this medicine will help controll my seizures. We went over the seizure med list and there are only 4 that we havent tried. This is not good everyone. We are running out of options. We leave in a week to go to Detroit. We dont understand why I have to suffer but we are trusting God and we know he has a great plan for my life. Keep praying everyone. Love y'all, Jadon
Saturday, September 10, 2011
We increased my lamictal again. We have been thinking for several weeks that the lamictal was making things worse but in desperation to find a medicine that worked we wanted to be 100% sure. Well we now know that it is definitely making things worse. We increased it again and my seizures are out of control. It has also affected my personality. I'm very fussy and I want mommy or whoever is keeping me to hold me all day long. Some of the seizures are also making me cry. It's not very many maybe 5 a day but when I say cry I mean a terrified screaming with real tears. It's absolutely horrible for me and it's also horrible for my family to watch. Since it is the weekend and my neuro isn't on call, my mommy is just going to go back down on the lamictal. We will see our neuro Tuesday and I'm sure she will give us a plan to wean off the lamictal. I don't understand why these medicines make my seizures worse. They have all made them worse with the exception of vimpat and banzel. The banzel helped alot in the beginning but then stopped working. The vimpat has done absolutely nothing. The only other thing that has helped is steroids. I know it sounds crazy but last week when I pulled up and started crawling, I had just come off of steroids. I had to be put on them because of a bite I had on my leg. I was only on it for a week and look at the progress I made. Not only do I have a rare seizure disorder but I do not follow the books in any way. I'm very thankful for how far I've come. I know that it's our faith and prayers that have gotten us this far. I will win this battle one day. I'm too determined to give up now!!!
Sunday, September 4, 2011
We have been busy getting everything ready for Detroit. The hospital in Detroit wanted a copy of my 3T MRI and my 48 hour VEEG. We filled out all the paperwork to release this information so everthing has been done. Now we wait to leave. We were able to get in with family housing!!! We will be staying at the Ronald McDonald house which is right across the street from the hospital. We have to call 24 hours in advance to put our name on the list but the lady didn't see it being a problem. Other than that we increased my lamictal last week. We haven't noticed that it has helped any but I've been sick and running fever. My seizures are worse when I'm sick. We increase it again next weekened so we will see. We are still hopeful that one day we will get control of these 100 plus seizures that I'm having a day. I still continue to be a miracle. I started pulling up on the couch this week. It took me one time and now I'm doing it all the time. I attached the video so you can see me. Thanks for praying for me and I hope you enjoy the video!!! Jadon