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.

Tuesday, August 31, 2010

Birthday, Medicine, and Sickness

Well my birthday party was Saturday. We had so much fun. The theme was 1st birthday barnyard. We had lots of animals to pet. We had ducks, chicks, a rabbit, and our pot belly pig. Everybody's favorite was the chicks. Amazingly they all survived and are currently back with their mommies and doing fine:) I was able to do all the things a 1 year old should on their birthday. I sat in my high chair and ate my birthday cake. Everybody loved watching me. I also sat on the ground with mommy and opened all my birthday presents. Mommy and daddy were so excited to get to see me enjoying my birthday. 6 months ago we didn't know if I would ever sit up and look at me today. I've come so far. Mommy says I'm her miracle baby. Yes I'm still having seizures but the miracle is that I'm developing so well. Now on to my medicines. We got my blood work back today. Everything was in the normal range and they are not changing any of my medicine. We did not talk to my neurologist because she is out for 3 months. We will miss her bunches but we are very happy for her. She just adopted a little baby girl. She is 1 week old and according to our nurse, she is beautiful. Congrats to her and her family!!! Now the sick part :( My daddy had to bring me to the pediatrician today. I have a nasal and throat infection. She put me on antibiotics. I took my first dose last night. I'm actually doing worse not better. I'm running a high fever now and am breathing really fast. Mommy is up with me watching me close though. My temporary neurologist wanted me to take some of that clonazepam to help with my seizures but mommy won't give it to me. She knows what that stuff does to me and we refuse to go backwards. So yes she is being rebellious. My seizures are increased due to me being sick. Hopefully I will get better soon. I'll keep you updated.

Thursday, August 26, 2010

I'm 1 :)

Sorry I haven't updated in a while. I have been very busy. Nothing much has changed. I'm still having 50-60 myoclonic jerks a day. I have to do blood work later today to check my medicine levels. We will then decide what to do from there. Please pray that they will be able to get my blood quickly. They always have a hard time finding a vein and I hate every minute of it. I have starting scooting backwards. I don't go very far but I'm so excited I can move around. Yesterday was my very 1st birthday. Can you believe I'm already 1? Time is going by so fast. It has been a rough year, but I have come so far. I can remember when I couldn't even lift up my head. Today I have complete head control. In fact, my pediatrician said that overall I'm only about 3 months delayed. This is the result of your prayers. My pediatrician could not believe how well I was doing when she saw me today. She said I am doing way more than she ever expected. She even said herself that that's the power of prayer. So thanks again to all of you who have been praying for me. I promise I will continue to amaze you. One day I'm going to beat this and we will celebrate my 1 year seizure free day :) I'm leaving you with some pics from my birthday. They will definitely put a smile on your face. My RaRa is putting a video together so I will post it in the next couple of days.

Monday, August 16, 2010

Neurologist visit

Nothing much new happened at my appointment. She said that I looked great and that I am definitely doing more than I was last time she saw me. She said my right hand was doing really well and she liked that I am able to transfer objects from one side to the other. The medicine is another issue. She is increasing my keppra to 4.5 ml. I have to have blood work done in about a week and a half to check my medicine levels. She does not want to start me on a new medicine until we check my levels. There really aren't that many more medicines for focal seizures that I have not already tried or that have been ruled out. She said that because the trileptal did not work then that rules out 2 other medicines. This is because they all do the same thing and if one increases seizures then the other two will more than likely increase them. This is a very rare side effect but leave it to me to have this effect. She did talk about a new medicine that is out for focal seizures but she does not want to start me on it yet. She said we will give it a month and see how it does before we start it. This is because I'm so young and it is new. Other than that she said she wants to see us September 23rd right before we leave for Boston. She will then see us shortly after we get back. So we did have a decent appointment. Not really the news we wanted to hear medicine wise but at least I continue to develop. I wanted to let you know that keto diet is still not out of the picture, we just are not ready to do that yet. It's hard enough to get me to eat right now. In fact I look healthy and I am healthy but I'm not gaining weight like I should. So we want to focus on getting me to eat foods before we start a diet. After the appointment we went to Chuck E Cheese. It was so much fun I slept the entire time. LOL My brother had lots of fun and he even got me a toy. He is just so sweet!! Thanks for praying and I will update you soon.

Sunday, August 15, 2010

Newspaper Article

Below is the article that will be in the newspaper. Just wanted to share with all of you.

Thank you to those who came out to support my cause last Saturday at Snow King, to those who donated to me personally, and to those who donated through my fund. Your generous donations will help in my journey to get well.I am very blessed to have so many people who love, care, and pray for me. I will travel to Boston Children's Hospital at the end of September. The out-pouring of donations will help me and my family with travel and medical expenses. My family and I could never thank you enough for all of your support. Thanks again for making my fundraiser a huge success!! Jadon Pailet

Saturday, August 14, 2010

Much better!!

I am doing much better now that they took me off the trileptal. In fact I have only had about 30 jerks this morning. Two days ago I had 75 before my mom left for work at 7:00 am. So you can see this is major improvement. I am also more alert and stronger. This makes my family so happy to see me be myself again. Sometimes I think the medicines do more damage than the seizures. This leaves us with question about what to do? Maybe we will get all this medicine figured out soon. I go back to see my neurologist Monday so we will see. Guess what? I got a new toy for the tub and I absolutely love it. It makes it much easier to take a bath and I don't slip and fall. I can just sit there and play and suck on the rag. I've always loved bath time but now its one of my favorite things to do. I suggest that anyone who is having a little trouble sitting in the tub get one. It's great!!! It's called an aquababy bath ring. They come in all colors. I left you a few pics of me playing with mine. I also left a pic of my brother, me, and daddy. It was his birthday yesterday. Mommy gave me my medicine in the icing off the cake. I never knew it was in there. Daddy said he was getting me some to take my medicine in every night. LOL Well everyone have a great weekend and I will update you Monday. Thanks for your prayers.

Thursday, August 12, 2010

Lots of seizures :(

I have been having lots of seizures. They are getting worse everyday. I had about 100 yesterday. I woke up last night and had about 40 and have had several today. Mommy called my neurologist and she said to stop the trileptal(the new medicine). The medicine is actually increasing my seizures instead of decreasing them. Sometimes the meds do this. I have to stay on my keppra, topamax, and clobazam. We have an appointment at childrens on Monday so we will decide what to do then. I will update you and let you know if my seizures decrease tomorrow. Right now I'm going to get ready to cheer for the New Orleans Saints :)

Tuesday, August 10, 2010

New Schedule

Well we have been very busy. Mommy went back to work and Jacob started MMO(preschool). I've been trying to sleep good for mommy since she has to work. The first night I went to sleep around 930 and woke up at 430. I went back to sleep at 530 but mommy had to wake up at 600. Last night I did really good. We all went to bed around 830 and slept until 530. I woke up around 2 but I went right back to sleep. I now have therapy every Monday,Tuesday, Wednesday, and Thursday. I'm sure going to be working hard. I didn't get to start decreasing my keppra yet. My seizures increased this weekend so we are trying to see if I was just having a bad couple of days or if the new medicine is having the opposite effect. I seem to be doing a little better today with the seizures. Sometimes I wonder if any of this medicine is doing any good. I have a neurologist appointment on Monday so we will see what she says. I don't have much time to update but I promise I will do my best to keep you informed on my progress. Thanks for loving me, Jadon

Sunday, August 8, 2010

Fundraiser and Medicine Update

My fundraiser was a huge success. Sorry I didn't get see everyone. I was there at 12:00 and stayed until about 1:30 but I didn't make it back for 4:00. It was just way to hot for me to be out there. My mommy and daddy said that lots of people came though. Thank you so much for caring for me. I really appreciate everything all of you are doing for me. I am one lucky little boy :) I left you a few pictures from yesterday and again I thank you so very much. You have blessed my family more than you know.

So now to update you on how I've been doing. I have been great. I'm sitting up a little better. We still have not noticed that the medicine has helped any. In fact I have had about 70 myoclonic jerks today. This is an increase so my mommy is going to call my neurologist in the morning. I'm suppose to start weaning off my keppra but I don't know what she will do since I'm having this increase. My mommy has to go back to work tomorrow. We are all very sad about this. It's going to be hard but I know we will get in a routine soon. My brother starts his preschool tomorrow too. He is very excited about going back to school. As for me I will be staying with my aunt, grandparents, and dad on his days off. I will try to update you sometime before Wednesday:)

Thursday, August 5, 2010

Trying to be patient

I am now on my full dose of trileptal. We still haven't noticed that it is helping me but we are trying to be patient. Hopefully we will see some improvement within the next week. I am still much weaker than I was a week ago. Uggh we hate regression due to medicines. Again we are trying to be patient with all these changes. Speaking of patience my mommy lost all of hers with the insurance company. They wouldn't approve my topamax and were going to charge us 450 dollars for it. They said it would take 3-5 days to get it approved. Well sure enough mommy got it approved in 1. Mom said she has learned to demand what she wants through all of this. Most of the time she wins. LOL Other than that not much has changed around here. My fundraiser is Saturday. I know some of you want to know when I'm going to be there. So I'm going to be there at 12:00 when it starts. I will stay for at least an hour, hopefully longer if possible. I'm then going back around 4:00 to stay another hour or so. I wish I could stay all day but it is just way to hot for me. I hope to see you there and thanks everyone for doing this for me. It really means alot to me and my family. If you have a minute listen to my new song. This song has lots of meaning to it but to me its a reminder that I am always safe in the arms of Jesus no matter what I'm going through. I continue to develop even though I'm having all these seizures so we know that He is with me always and holding my heart!!! It also talks about His healing powers and the mighty things He can do. We don't know why God has chosen our family to go through this but we do know that I have touched many many lives and I'm not even 1 year old. So He does has a plan for me and just knowing that gives my family peace. I'm not saying it's easy but it's easier knowing that God is with us always. Love ya all, Jadon

Monday, August 2, 2010

Neurologist Report

My appointment went great today. She is going to take me off of keppa but I have to be on the full dose of trileptal. We will start weaning me off on august 9. So until then I have to be on all these medicines. The bad thing about that is that it is making me very tired. I also can not sit as long as I was a couple of days ago. We just have to be patient during this medicine change. We also talked about Boston and she said go. So we have booked our flight tickets there. We have to wait for them to review my case to know when to schedule the flight home. There is going to be a fundraiser for me this Saturday at Snow King in Amite. This is the snowball stand located right next to the dollar general. Here is the link that has all the information about it. http://www.facebook.com/#!/event.php?eid=147433648601624&ref=mf
Thank you Dana, Tamie, and all others who are helping put this fundraiser together to help me. Also thanks to all who have already donated to my fund. We are so blessed to have people that truley care about me. I really appreciate all of your love, support, and prayers that you give me. I love you all!!!!