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.

Wednesday, March 17, 2010

This blog is to let you know what has been going on the past 3 weeks in my life.

So the past 3 weeks have been very busy for me. I have been in the hospital 3 times which is no fun. Here is my story of how I was diagnosed. On Tuesday, February 23 my mommy took me to see my pediatrician. My mommy and daddy were worried about my development and these crazy movements I was making. You see I met all of my developmental milestone until I was 4 months of age. Once I turned 4 months I stopped doing the things I was previously doing. One of them included rolling over, so you can see why my mommy and daddy were worried. My pediatrician looked at my video and was very concerned. She sent us to childrens hospital where I had an EEG and was diagnosed with IS. Once I was diagnosed with IS I was put on clonazepan. A medicine to help decrease seizure activity. After my MRI came back normal my doctor said she wanted to put me on ACTH steriods. This steriod is very expensive so it was going to take several days for it to come in. We were released from the hospital and had to wait for the medicine. Well the medicine finally came in about a week later. Once we got to the hospital to start it the doctor realized that they did not send us enough medication. The insurance company didn't approve the right amount. Well my doctors called the insurance company again and they would not approve my medicine. My doctor decided it would be better to go ahead and start me on some type of therapy so they put me on an oral steriod called prednisolone. We were discharged from the hospital the next day. My spasms got better but they never went away. I was able to do more things physically. I could sit in my bumbo seat and was holding my head up on my own. I had another EEG a week later. They could see improvement but it was still abnormal. My doctor decided to admit me again for the 3rd time. They doubled the amount of prednisolone that I was taken in hopes that it would work. Well it surely did not work. In fact, it stopped working all together. My spasms were increasing instead of decreasing. So that meant we had to fight the insurance company. This time they did not give us any problems thanks to my wonderful neurologist and her staff. We received the medicine and started the ACTH therapy. I am still having spasms but they are decreasing every day. I had 161 spasms this past Saturday and 187 on Sunday. They started me on ATCH Sunday. On Monday I had 147 spasms and Tuesday only 81. Wow what a big improvement. I have only had 12 today but its only 10:30. Still this is wonderful for me!!!!I know that God is watching out for me and my family and I know we will get through this. Please take a minute to watch my slideshow above to see my new tricks. I can sit in my bumbo seat, I can put my hands together, I can grab my frog when sitting in my seat and I just love looking at my fist. I am also more alert and getting stronger every day. After watching it you will be able to see the miracles that God has done for me over the past 3 weeks. My doctors are amazed at how far my physical abilities have come in just 3 weeks.

1 comment:

Betty Rainey said...

Jadon you are an amazing little boy and I can't wait to see what miracle God is going to work in your life. You are going to have a great testimony one day. Thank you for sharing your story with us. We will keep praying for you and your family.