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, June 28, 2010

The plan

My mommy talked to the pharmacy in Canada today. They are shipping my clobazam tomorrow. It will take it anywhere from 5-10 buisness days. Please pray that we get it quickly. I then have to be on the medicine for a week before we do anything else. My neurologist wants to see if it helps any. Once I have been on it for about a week, I have to go back to childrens for a 24 hour EEG. This will tell us just how many seizures I am having a day as well as what type of seizures I am having. My neurologist seems to think they are all myoclonic but she said it is possible that my infantile spasms are back also. The only way to tell is the EEG. So we basically have to wait and see how this medicine works and then wait for the 24 hour EEG result. They were able to up my topamax some. Once she reviewed it and did some math she saw that there was some room to increase topamax but not keppra. She is taking me off of my clonazepam. Every since I had to start taking it again I have not been able to sit, I'm having trouble holding myself up, and I have less head control. We are almost certain that all of this is a side effect of the clonazepam and not because of the seizures. We will see how I do the next couple of days. Please pray that I get my strength back. A few of my neurotransmitter test came back. Your prayers for fast results are definitely working. She said she has never gotten results back this quick. In fact, the last time she did this test it took 6 weeks. God is awesome. The results that we got back were all normal. We are only waiting on a few more test and she said we should get those back pretty soon since we already got the others. Thanks for your prayers and I will keep you updated on my progress!!!

2 comments:

The Fuller Family said...

Thank you for the sweet comment about the girls...I know that we haven't really had a chance to meet, but we feel like we already know ya'll! Ya'll are in our prayers daily and we want ya'll to know we are here for you in any way you need us to be. Prayer is a powerful thing but sometimes you just need someone to come and lend a helping hand around the house or whatever (and we can do anything ya'll need). And we def. would love to get to know ya'll better! (my number, for anything, (662-554-038) and of course you can call the church to get a hold of trey for anything) And lastly, I just want to say that ya'll are remarkable parents, and a true blessing to me as a parent!

The Fuller Family said...

ashley (662)554-8038 sorry about that