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, January 26, 2011

Orthopedic and Pediatrician Appointments

I went to the orthopedic this morning. He said that everything is absolutely fine. My feet curve in but he said that it is normal. When you are in the womb that is how you are positioned. Since I'm just putting weight on my feet, mine haven't straightened out yet. So no its not normal for a babies feet to look like that at my age but it is ok because of my situation. He said that now that I'm putting weight on my feet they should straighten out. He wants to see me again in 6 months but he thinks everything is going to be just fine. We are so glad that it wasn't a bone issues. He also checked my spine and hips while I was there. He said that both of them are normal too. So great news from that doctor. Now on to the pediatrician. We didn't get good results from her. She said that I'm wheezing pretty badly. So that means xopenex. I'm not going to get better until I take these breathing treatment. So my pediatrician called my neurologist. By the way, I just love that my pediatrician takes the time to consult with my neurologist. She always looks out for me. They decided to put me on xopenex and continue the steroids. We hope that the steroids keep my seizures down while I'm on the xopenex. I have only had about 30 spasms today. They are still very light and barely recognizable. I'm still doing new things. I'm using my right hand very consistently now. In fact you can barely tell that its my weaker side. I'm also moving all around. I don't move forward but I'm very good at moving backwards. If you look at the picture above, you will see me on the rug at Mar's house. My mommy put me on the blue pallet and look how far I moved. Now I just have to learn how to go forward. My mommy also has to watch me really closely. I can pick up all kinds of things off the floor and guess where they go. Yep straight to my mouth. Please pray that I will get rid of this RSV. We are so ready for it to go away. Also pray that the xopenex won't cause my seizures to go way up. I'll keep you updated.

Tuesday, January 25, 2011

Sick but fewer seizures??

Well I haven't updated because my computer is broken. I've had alot
going on though. Sunday my mommy and Aunt Mendy had to bring me to the
ER. I was having lots of trouble breathing and had a high fever. Long
story short. I found out I had RSV, bronchiolitis, and an ear
infections. They put me on steroids and antibiotic. I am feeling a
little better but I'm still not feeling good. My brother is sick too.
He has an ear and sinus infection. Hopefully we will feel better soon.
My seizures did go up Sunday. Once I started the steroid, they got
much better. I'm only having about 40 a day right now. The 40 that
I'm having are very little. In fact sometimes my eyes don't even roll
back. We know this is just temporary but we are going to enjoy less
seizures for now. Tomorrow I have my appointment with the orthapedic.
I then have to go to my pediatrician so she can see if I sound better.
I'll let you know how everything goes. Love ya, Jadon

Sent from my iPhoner

Thursday, January 20, 2011

Quick Update

The topamax wean is going great so far. I'm not having any increase in seizures. I'm now on 45mg in the morning and 45mg at night. We will decrease it again next Thursday. Please continue to pray that I can get off this medicine. Other than that my mommy and daddy are enjoying seeing me happy and more alert. They are also very thankful that my seizures are staying about the same. Obviously we would like them to decrease but we are very thankful that they are staying under 100. They are also very mild. I'm not losing control of my entire body like I was. In fact, I can have them and still remain sitting. I'm also not hitting my head on things. So this is all great news. Thanks for praying for me!! Love, Jadon

Thursday, January 13, 2011

Neurologist Appointment

Our appointment went really well today. They are taking me off of Topamax. We are very excited about this. It will take 7 weeks to wean me off this medicine. Please pray that my seizures will not increase. We really need to get me off some of these medicines. Once I'm off the topamax we will start a new medicine. It will either be zonegran or lamictal. I can't be on topamax and zonegran at the same time. So if we are able to totally wean the topamax, we will try zonegran. If not, we will try lamictal. So we are very excited about trying these two medicines rather than the others with the more severe side effects. It's basically try a medicine and if it doesn't work take me off and try another. Hopefully we will find a medicine that works quickly. My neurologist was amazed at the progress I'm making. She said I look better each time she sees me. Thanks for praying for me. Even though we don't have seizure control, I'm doing way better than expected :)

Wednesday, January 12, 2011

We finally got a PT!!!

So we finally got a PT. Of course we have to do the paper work with early steps before she can come see me. We are very excited about this. We had a wonderful PT several months ago but she got sick and was unable to service me. We have missed her tremendously. Now we finally got a new one. My seizures are between 60-80 spasms a day now. So not much change but as long as I'm not increasing we are ok with this. It's still way to many spasms to be having a day. We have a neurologist appointment tomorrow afternoon. I will let you know what she says. Please pray my doctors and I as we continue on my journey. I'm a fighter and I'm not giving up yet. Love you all, Jadon

Monday, January 10, 2011

Look at me

Well I'm doing better now that I'm off the diet. My seizures are staying anywhere from 80-100. I don't know how the diet was making my seizures worse but it definitely was. We are very sad about this. We really wanted the diet to work. We talked to my neurologist in Boston and New Orleans today. Of course Boston wants us to try Sabril. We have contacted a doctor in Philadelphia that sees patients that are on Sabril. He is a pediatric neuro ophthalmologist. We will probably go see him sometime in the near future. You know my mommy and daddy have to find the best doctors for me. My vision is kinda important though. In the meantime we are going to increase my Banzel. I will let you know how I do with the increase. Developmentally I'm doing some new things. I'm eating finger foods all by myself. I'm also putting weight on my legs. I stood for about 15 seconds yesterday as you can see in the picture. Please continue to pray for me. We really need to get these spasms down. Oh one more very important thing. When my mommy talked to Boston today they said that my CDKL 5 genetic test came back normal. Thank you God for another normal test. They also said that we need to repeat the 3T MRI and long term VEEG monitoring this summer. So we will be traveling back to Boston sometime this summer.

Thursday, January 6, 2011

My computer is broken so that's why I haven't updated this week. I'm
sorry to have to say this but we are weaning me from the ketogenic
diet. I was having about 90 seizures a day before the diet. Each time
we went up on the ratio my seizures got worse. I was having over 200
spasms a day. We spoke with our doctors in Boston and new Orleans.
They both suggested that we wean the diet. Boston said it's uncommon
for this to happen but that they have had several children that had to
stop the diet for that reason. You know I always do the opposite of
what I'm suppose to. So now what? We don't know. Once I'm completely
off the diet we will decide. Please continue to pray for me. We are
very upset that the diet wasn't our answer. My seizures are better
today. I've stayed around 100. Wow I never thought I would say 100 is
better. Ugh I hate seizures. I don't understand how I've been fighting
these for 1 year and still have little control. We are just trying to
stay positive right now and praying that God will lead us to the next
step in my journey.