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, March 28, 2011

Medicine changes and new tricks

The increase in vimpat has made my seizures worse. They are more
intense and they are waking me up at night. We are going to decrease
my vimpat and increase my banzel some more. Hopefully this will help.
So here we go again. Please pray that they decrease. On a good note
I'm saying bye bye now. I'm more vocal than ever. I'm saying dada one
minute and bye bye the next. I'm also blowing kisses. Im just too
sweet. Love ya and thanks for praying.
Sent from my iPhoner

Saturday, March 26, 2011

I'm so sorry I haven't posted in so long. I've been very busy and I
haven't had much time for computers. I'm feeling much better but my
seizures aren't any better. In fact they are more intense:( We don't
know why. We had blood work done Monday but we still don't have the
results. We increased my vimpat some more but it hasn't helped any.
I'm sure we will make some more changes on Monday. We have also
completed the paperwork to try and get a nurse to come watch me while
my mommy works. I stay with my Mimi right now but I'll need someone to
watch me next year. Please pray that we get this approved. It would
surely make things less stressful. We got my early steps yearly
evaluation back. My lowest scores were in motor and speech but we knew
this. This best news is my social/emotional scores were normal. This
means my alertness and interaction with others is normal. I also show
appropriate emotions to the situation. So that is great news. Last
year I didn't score very high in this area and this year normal. So we
are very happy about this. I'm a fighter and I will keep fighting this
horrible monster. Don't forget today is purple day. So wear your
purple for me today. Love you and please continue to pray for me.

Monday, March 14, 2011

Quick update and taking orders for purple ribbons

I'm feeling much better but I'm still not myself. I'm very fussy and irritable. My seizures are back to where they were before I got sick. So I'm having about 80 a day. Some are more intense than others but overall I'm having more less intense seizures than intense ones. Please pray that my seizures will get better.

March 26th is Purple Day! A girl named Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy's goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. We are in the process of making purple ribbons with my name on them for you to wear that day. If you are interested please email my mommy the number of ribbons you would like. Her email is monica.pailet@gmail.com The ribbons will be $1 each. We are asking that everyone wear their purple shirt and/or ribbon that day to support me and all the people who live with epilepsy on a daily basis.

Wednesday, March 9, 2011

Feeling better :)

I'm finally starting to feel better. I had 101.8 fever last night and then today at 11:00 I had 100.8. My mom just gave me some motrin because my fever is at 100 so I'm definitely getting better. I'm smiling again and not crying anytime someone looks at me. I started doing my tricks again and talking again :) Thanks for praying for me. It has been a long week. I'm just thankful my mommy was off of work while I was sick. I left you a picture of me eating chocolate cake last night. I actually started getting better after I ate this. Notice my mardi gras shirt. I didnt' get to go to the parade yesterday but I wore my shirt anyway :) As far as seizure, they have been a little better today. Please continue to pray that we will find the right medicine and right dose to control these seizures.

Monday, March 7, 2011

Still Sick :(

I'm still not feeling good today. I woke up with 103 fever but it hasn't gone above 102.5 since then. My pediatrician ordered some blood work to make sure it was a virus. So yes I have a virus on top of the sinus infection. She said I should start feeling better tomorrow. I sure hope so and mommy does too. Mommy says she thinks I am because my seizures have been better today. Still not good but better than the last couple of days. If I could just get better maybe we could try to get some more control over the seizures. We are so tired of watching me have seizures everyday. I will let you know how I feel tomorrow. Everybody have a great mardi gras.

Sunday, March 6, 2011

I'm still sick :(

I'm still not feeling good. I've been running a high fever since Friday. I had to go back to the pediatrician yesterday. They said my antibiotic wasn't working so they put me on another one. I'm still running a high fever. We are hoping this antibiotic starts working soon. My seizures have also been pretty intense. We don't know if the increase in banzel has helped or not. We will have to wait until I get better to see. So things are not to great for me right now. Please pray that I get to feeling better soon!!!!

Thursday, March 3, 2011

The past couple of days.

My neurologist called first thing Wednesday morning. She didn't want to increase my vimpat. She wanted to increase my banzel. So that's what we did. The past two days haven't been the best for me. Yesterday my mommy had to come home from work. I was crying, having seizures, and just miserable. We went to the pediatrician and I have a nasal and throat infection. She put me on antibiotics. She also gave me a cream to help my rash that I just can't seem to get rid of. My seizures have not been good either. I'm having about 80 a day. I have done a little better this afternoon. My mommy has only seen about 10 small spasms. I've also been saying da da da all afternoon. So hopefully I will get to feeling better and my seizures will go down. I will keep you update. I love you and please continue to pray for me.

Tuesday, March 1, 2011

Appointment info

I know it's been a couple of days but we have just been trying to enjoy things and not think about seizures. I don't have a real good count on how many I'm having because we haven't been counting. We've been counting for over a year and we needed a break. I'm estimating about 60-80. We do know they have increased :( The good news is we haven't seen any like the ones we had to go to the hospital for. We are seeing that type of seizure, it's just not as long or intense as before. I went to the neurologist today. I didn't get to see my neurologist because she had to leave due to a family emergency right before we got there. The neurologist that we saw increased my vimpat some more. We will see how I do. It's almost like the vimpat is making one type of seizure better and my spasms worse. I really don't know yet. We will definitely know in a few days. My neurologist is going to call me when she gets back so we will see what she has to say. So not much information today. I will keep you posted on how I do this week. Please continue to pray for me. I left you a picture of me at the mardi gras parade. I loved it!!!!