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.

Thursday, December 30, 2010

Christmas and more






I hope everyone had a great Christmas. I sure did. It was definitely much better than last year. Last year my brother and I were both in the hospital with RSV and my brother had pneumonia so this Christmas was much better. I went to my Mar and Paw's house Christmas eve. After we opened presents and ate we went to Paw Paw Ike's house. I even watched fire works. Can you believe I liked these? They are so loud and I was laughing and having a great time. I left a picture of me watching the fireworks. The other pictures are of Christmas morning. I love my new car and I liked the paper the best. After we had Christmas at our house we went to Aunt Rae Rae's house in New Orleans. Uncle Michael cooked lunch for us and we got to see my Mimi and her side of the family. It was really a great Christmas. Now on to my seizures. We have noticed a little decrease. I'm having about 100 seizures a day. Yesterday morning I woke up and only had 32 by lunch. Well after lunch I had a cluster of 60. Yes VERY upsetting and disappointing. Today I've already had about 40 and it's only 8:00. My seizures are so unpredictable and so random. We have done nothing different the last two days but my seizures are so different. Basically we celebrated me only have 32 yesterday morning and then the disappointment but we will celebrate the good times even if it's followed by disappointment. I got my new meals from Boston and feeding time is much easier. I now each a meat and then a baby food vegetable or fruit. I love eating them and the portion size is much better. We so wish we would have been able to do this two months ago. I also got my new stuff from my herbologist. I started it yesterday so I will let you know how I do on the new stuff. I have gotten the ok from our dietitian to use these supplements so we know they are not messing up the diet. I gotta go because I have blood work today to make sure my carbon dioxide level is better. I will update you very soon. Thanks for praying for me!!!

Thursday, December 23, 2010

Boston Results.


We are now home and finally get to relax and spend time with family. Our appointment went really well in Boston. We are making a few changes to my diet. We are going to spread my meals out so that I get to eat 5 times a day. Hopefully that will help me eat my food. We are also getting some meals planned that have baby food vegetables and fruits. By doing this we hope to get me to eat some more fruits and vegetables. Right now I'm only eating apple sauce. We still haven't noticed any change in my seizures. The neurologist want to give it another 2-3 months. If we don't see any change we will stop the diet. I have been on it for about 2 month already. They said the diet just doesn't work on some people. We are not giving up yet though. We will continue to try and pray that we can get these seizures down. I did go a little over a week without seizures at night but they came back a couple of nights ago. We got some more test results that they did back in October. The genetic test that we did came back normal. Now we are just waiting on the CDKL 5 genetic test to come back. We got the official results of my 3T MRI. While we were there they said everything looked normal. Well when the neurologist got together and studied it they found a POSSIBLE malformation in the left post lobe of my brain. They are not sure what this is because I'm so little. They want to repeat the 3T MRI sometime in April once my brain has grown some more. They are hoping it will be clearer then and then they will be able to determine what the are seeing. They also want me to go see an orthopedic for my feet. My toes turn down a little and they want us to get it checked out. While I was in Boston they did more blood work. My blood work showed that my CO2 level is low so they started me on PolyCitra to help regulate my CO2. They said this is common when babies are on the ketogenic diet and take topamax. My blood sugar was also a little low but nothing to be concerned about. So, so far all this diet has done is cause more problems. All you keto fans don't get mad at me. I know you have to give it time but its been horrible for us. We are working on making it better. I am still on the new medicine Vimpat. It has not helped yet but my neurologist still want to give it some more time. So it looks like we have another failed medication. Here is the list of failed medicines:
1. klonopin
2. prednisolone
3. ACTH (2 rounds)- didn't help seizures but helped EEG
4. keppra
5. topamax
6. trileptal
7. clobazam
8. vimpat
9. banzel
All of these helped at first and then stopped. I'm still on keppra, topamax, banzel, and vimpat. We are slowly getting rid of the ones that aren't working. So I think I have updated you on everything. Please continue to pray for me. I keep thinking that we didn't get our miracle in 2010 but the more I thought about it, I think we really did. I went from not being able to hold my head up to sitting up and being just as alert as a normal 15 month old. So no we didn't get our seizure miracle but we came farther than anyone expected. I still believe we will get our seizure miracle one day. I'm leaving you with a picture of me trying to catch the snow at the airport in Boston. It was absolutely beautiful. Everyone have a great Christmas.

Tuesday, December 14, 2010

Alot of catching up

Sorry I haven't updated but I have not been able to get to a computer. I've been really busy. Let me go back about a week ago. We were scheduled to go to Boston and we never made it due to the weather. We did get to go to Houston Thursday. We saw the herbologist. She showed us some different massages to do to help stimulate my brain. She also showed my mommy how to use the creams and supplements that she sent. She wants to train my brain to ignore the seizure area. If we can do this, then the seizures will slow down. She showed us a 14 point pressure point routine that helps send messages to my brain. It basically helps the brain to work. We are very impressed with the knowledge that this herbologist has and we believe she can help me get better. While we were in Houston we stayed with Mr. Andy and Mrs. Rhonda Cobb. We were so thankful to get to stay and visit with them. We even had time to go see Santa while we were there. We also got lots of good information from the herbologist. We got home Friday night and left again today. We are now in Boston. We are staying at the Devin Nicole house tonight and our appointment is in the morning. We will see a neurologist, dietitian, and nurse. We are excited about seeing this keto team and we hope they can help me with this diet. Please pray that we have a great appointment tomorrow. Now a quick update on my seizures. My seizures are a little better. I haven't had any at night in over a week. I'm still having alot during the day. Somewhere between 70-90. So they are better but still way to many. I'm definitely more alert since I started the supplements from the herbologist so that is great news. I'm also almost completely off my keppra. We think the keppra was increasing my seizures. As soon as we lowered it I stopped having seizures at night. So as you can see we have been very busy. Sorry I haven't update my prayer warriors. I'll try to do better :) We love all of you and please continue to pray for me!!!

Wednesday, December 8, 2010

Home

I made it home this afternoon. The main reason for my admission was to get the medicine in my system quickly. That way we didn't have to wait a month to see if it works. So far we haven't noticed a difference in seizures. I started the medicine orally tonight. I will be on it for a week and if we do not see any change we will stop it. This new medicine is called Vimpat (Lacosamide). They are also taking me off of keppra. I'm on too many medicines and they are not working, so we are slowly getting rid of the ones that are not working. Our neurologist is back and says we have other medicines we can try before we have to try Sabril. The bad news is with each medicine that doesn't work there is a less chance that the next one will work. The other bad thing is we have tried the meds with few side effects. Out of the three she wants to try one can effect the liver, another bone marrow, and of course the sabril which can effect the vision. So how do you pick which one you want to try with those kinds of side effects. Basically we are all very sad that we are in this situation. This includes my neurologist. She is really trying to get these seizures under control. It's very frustrating. My brother even says "Aww Jadon don't do that". It's very sad that a 3 year old can recognize them. It makes my mom mad now. She use to say well we will try this or do this. We don't know what else to do and it makes us mad. I'm sure this feeling will go away but I can tell you its very rough on my family right now. We are having to make decisions that no one should have to make. We know God has a plan but it is hard. We have been patient for almost a year and it's horrible to watch me have hundreds of seizures a day. We will remain faithful, continue to trust him, and pray. He is the best medicine for me right now. We will also thank him for allowing me to be so alert, happy, and developing even if its at a slow rate. Thanks for all your prayers. My family appreciates them more than you know. We do leave Sunday for Boston. We will see the ketogenic diet team. So please pray for our trip. Love you all, Jadon

Monday, December 6, 2010

I'm updating from my phone so hopefully this works. I was admitted to
childrens hospital to start iv medicines to help lower my seizures. I
don't know how long we will be here. The neurologist said probably a
couple of days. I'll keep you updated. Please pray for me.
Sent from my iPhoner

Sunday, December 5, 2010

I just love this picture :)


Well mommy and daddy got a new puppy for my brother and I. My brother loves to play with him and me, I love to snuggle. I know this sounds weird but its like he is protecting me. He sits at my feet if I'm in my chair, comes and plays with me in my play area, and sits in my lap. This is a picture of us snuggling. My mommy just loves this picture. She said they mainly got the puppy for my older brother to play with and I'm stealing all the loving..LOL My seizures are still the same. I'm having way to many. Even though I'm having so many, I'm very alert. In fact I'm more alert than I usually am when I'm having this many. Seizures, I will never understand them. We still don't know what is making them so increased right now. I have to do blood work Monday, so maybe that will reveal something. I did get to have some fun last night. I went to my cousins wedding. Mommy did the hokie pokie with me, and I just laughed. This is so exciting because I used to not be able to handle loud noise at all. Well the music was definitely loud and there were lots of people there. I was very content and we got to stay until almost 9:00. Well I will let everyone know how my blood work goes Monday. Thanks for praying for me. I love you all!!! Jadon

Friday, December 3, 2010

Seizures, seizures, and more seizures

I don't have much to report. My seizures haven't gotten any better. I'm having them during the night again. I'm also having many intense ones all during the day. We don't know an exact amount, but we do know its well over 100. It's just impossible to count them every day. My mommy is off of work for the weekend so she is going to get a good count on them. All I can say is please continue to pray for me. My mommy called our neurologist and they said there isn't anything that needs to be done right now. We just have to wait. Well waiting is horrible, especially when your having seizures all day and all night. Thank you all very much for praying for me. It's the only thing that keeps us going.

Wednesday, December 1, 2010

Well check but not so well with seizures

So today has not been a great day for me. I had about 150 spasms. We really don't know why. Mommy called my neurologist and she said to give it a couple of days. We did increase my diet yesterday and we increased my banzel. It shouldn't be the banzel because it decreased my seizures to 40-60. The neurologist said it shouldn't be the diet but I'm not so sure yet. We will just have to wait and see what the next couple of days bring. I pray that it's not the diet. I've read that about 10% of patients seizures increase on the diet and again I pray I'm not in that 10%. Now you see why I don't want to try vigabatrin. Yes vision loss is only in 15% of patients but I'm always in that rare category. I had my well check today at my pediatrician's office. She said my nose looks much better. So the antibiotic is working. I am now 21 pounds and 31 1/2 inches long. Yes I'm very long for my age. We decided not to do any vaccinations. My mommy doesn't want them done and my pediatrician agreed with her. So no shots for me at this time. I really need your prayers right now. This increase in seizures is very discouraging for me and my family.

Tuesday, November 30, 2010

Neurologist visit

My appointment went great today. The blood work before my appointment not so good. It took them 3 times before they were able to draw blood. Once we were done with that I was much better. My neurologist is back and we are very excited about that. She increased my banzel because my medicine levels showed we could go up on it and because it helped so much when I started it. Hopefully the increase in banzel will help these seizures go down. I'm having about 80 a day now. I've been sick so that's why they are increased. I started another antibiotic yesterday. This is my 3rd one in the last month. This one is suppose to knock all this infection out. Time will tell. My neurologist also said once we are finished increasing banzel we will decrease topamax. I have to get more lab work done next Monday to see if my medicine levels are better. She said that I look great and she can tell I'm doing more. The dietitian saw us while we were there. My ketones were at 1.7 which means they are elevated but still low. She increased my ketogenic diet to the 3:1 ratio. I was on the 2:1 ratio. We are praying that these 2 changes will help control these seizures. They are starting me on carnitine because my blood work showed that mine is low. Carnitine helps the body metabolize fatty acids. Please pray that these changes will help control my seizures. It's really time for these to go away. If you look at the bottom right hand side of my webpage, you will notice that I have reached over 10,000 views. How awesome is that. That means I have been prayed for thousands of time just from my webpage :)

Thursday, November 25, 2010

An angel to watch over me.


Happy Thanksgiving. I am 15 months old today. I finally got my blood work back. My keppra level was double what it is suppose to be. My mommy was so mad that it took them so long to figure out why I was sleeping so much. We aren't 100% sure but that was probably causing more seizures as well as me being sick and getting another tooth. Well we decreased the keppra Tuesday night and guess what I'm a different baby today. It will take a couple of days to level out but I look much better finally. I had to get an antibiotic shot yesterday too. I can't get over this congestion and cough. They also changed my antibiotic so hopefully I will get well. We finally heard back from Boston. They said my recommended calories, fats, and carbs are correct for the diet but my serving size of foods is off. They just said they are not planned out well and they agree that it would be hard to feed a 15 month old those servings. So we are in the process of finding a dietitian here. In the meantime we have an appointment in Boston December 13. We will go and see their keto team and get this diet fixed. Instead of working with 1 dietitian, we will get to work with a team of 4 people. I just have so much going on right now. Many of you know I lost my great grandmother yesterday. She was 90 years old. Mommy said to not be sad. I now have another angel to watch over me and help me get better. We love you Dot Dot and you will be missed by all of us. Mommy said she will teach me to make your stuffed peppers and king cakes when I get big enough. You were an amazing person and we love you very much.

Sunday, November 21, 2010

Slowly getting better.


I am doing much better. I still have a cough but my sinus infection is starting to clear up. Thank you God. My brother is feeling better too. Hopefully we can stay well now. We still haven't heard back from Boston yet. My mommy is going to call them Monday. No one ever wants to call you back. You have to aggravate them until they do. So as soon as we hear from them I will let you know. We haven't gotten all my blood work back yet. We should get everything Monday. I'm not nearly as tired anymore. I was probably so tired because I was getting sick. My seizures are better too. I'm still having them but they are so little that you have to be holding me to know I'm having them. My eyes are also barely rolling back in my head when I have them. I still have a few hard ones during the day but no more than 10. We noticed a difference shortly after starting the supplements from the herbologist. We believe that if I wasn't sick we would have seen an even more decrease. So this is fabulous news and we pray that this continues. I'm leaving you a picture of a typical keto meal. I eat this every morning for breakfast. It consist of eggs with cream and butter, applesauce with cinnamon, cream with water and one of my supplements, and my medicines. The hardest part about this diet is the medicine. Mommy started putting cinnamon in my applesauce and now I'm taking them better. Thank you so much for praying for me. I just know God is going to heal me. We will NEVER give up!!! It may take years, days, or weeks but we will keep fighting.

Wednesday, November 17, 2010

Busy, busy, busy!!!

I know I have really been bad about keeping you updated. I just don't have time anymore. So here is a quick update. My mommy has sent all my diet information to Boston. They are suppose to call us back Thursday or Friday. She also spoke to a Herbologist Monday. The herbologist is sending us some supplements to try. Guess what they have 0 side effects. Yes that's right no side effects. So I will let you know how I do once I start these supplements. The best part about the herbologist is she believes I can get better. She is the first doctor that has every said we will work on this until I'm better. Mommy really likes her because she believes that I can win this fight. I have to have blood work in the morning. I have been so tired since starting the diet and its only getting worse. I slept for 4 hours this afternoon. I will let you know the results of that. Also my brother is still sick. Mar took him to the doctor yesterday. He had ear infections in both ears and a sinus infection. He had to get two antibiotic shots and is antibiotic now. Now you see why I have no time to update my page. Hopefully things will slow down for us soon.

Sunday, November 14, 2010

It's going to get better

The goods news is I'm tolerating the keto meals much better now. I haven't vomited since Friday. My mommy has been feeding me eggs, applesauce, and cream for breakfast and supper. For lunch, I've been drinking a keto shake. That's been keeping me full with much better results. We will probably have to adjust my meals. The amount of vegetable that I'm suppose to eat is unreal. It's more than what my mommy would eat. We still haven't seen any changes in my seizures. Just trying to be patient with that. I have read other stories where their child didn't respond to the diet until 3 months in. We just have to be patient. Now for the bad news. My brother has been sick since Friday night. He has been running a high fever. Mommy has been alternating motrin and tylenol just to keep his fever down. He is a little better today. I have been staying with my Paw and Mar. We really do not need me to get sick. That would be really bad. My mommy has been bringing my meals at meal time and coming to see me when she gets a chance. It has not been fun. Well my mommy goes back to work tomorrow. She is not very happy about that. At least she only has 1 more week and then she is off for the Thanksgiving break. Please pray for us. This must be the dark before the morning.

Friday, November 12, 2010

Keto Day 5

Well we made it home and things haven't been that great. The actual preparation for my meals isn't nearly as hard as my mommy expected. The hard part is getting me to eat which we never thought would be the problem. We actually thought I wouldn't get enough to eat. Well we were very wrong. I don't want to eat now. In fact, I gag and sometimes vomit. I have really had a rough start. Hopefully I will get use to it and stop gagging. We have not noticed a change in my seizures. Yes it is very early but we were hoping to see a little change. We are not giving up yet. My mom has a phone conference Monday with the herbologist. We are hoping she can help us in some way. When you pray for me tonight, please pray that we will not get discouraged. We are doing everything possible and we just can't get relief for me. It's very hard to stay positive at times like this but we are trying our best. We know God will help us through this and that everything will happen in his timing.

Wednesday, November 10, 2010

Hospital Update

Sorry I did not have time to update yesterday. My mommy has been very busy studying this new diet, plus we had a very bad day yesterday. First of all, they had to wake me up during the night to check my blood sugar. Well this messed with my sleeping pattern and of course every time you mess with my sleep my seizures go up. So I had a lot of seizures yesterday. Then they tried to give me my medicines in water. Come on, do you know how disgusting that is? Can you guess what I did? Your right I vomited them right up. My mommy tried to tell them but once again they don't like to listen to her. Well once that happened they finally decided they were going to have to give my medicines with my meals. All of this so could have been prevented. After that I wouldn't eat my lunch. I mean who would want to eat after that dramatic experience. I finally ate around 2:30. My blood sugar also dropped yesterday morning to 49 so they had to give me apple juice. This messed my ketones up which was so discouraging to us. My mommy called one of her friends who lives in NOLA whose daughter is on the ketogenic diet. She came to the hospital and talked to my mommy which helped a lot. My mommy has a phone call in to an herbologist who specializes in the keto diet. The herbologist is going to look at my meal plans and help us with the diet. We don't feel like they are doing enough here for me. Mommy and daddy said they will fight for me and make sure we are doing this diet correctly. The good news is my seizures are back to normal and my ketones are higher today. They are still not at my goal, but they are higher. Other than that, I am very tired and ready to get out of here. I don't know when I will get to go home but hopefully it will be sometime this afternoon. I will keep you all updated. Please pray for us, we are very exhausted and very stressed right now. We can do this though.

Monday, November 8, 2010

Keto Diet Day 1


I have done really well today. I ate my lunch and my dinner without any problems. I don't really like the whipping cream but I'm drinking it out of my bottle. The dietician gave us some fun ways to eat it once we get home. They are checking my blood sugar every four hours. I don't mind it at all. I don't even cry. They did have to do blood work this morning. The first lady couldn't get it so she called her supervisor. The supervisor came and was able to get my labs. Unfortunately I have to have labs Tuesday and Wednesday morning:( They are also checking my ketone levels by taking urine samples. The doctors said that if I continue to do this well, I will get to come home Wednesday. Thank you all for praying for me today. This is a major change for my family and your prayers are helping. The picture of me is me playing in my bed. I'm still very happy as you can tell. Please continue to pray for my healing. I'll keep you update!!!

Saturday, November 6, 2010

Fasting and prayer!!


I'm feeling a little better finally. Mommy had to take me back to the pediatrician Thursday because I wasn't getting any better. They put me on antibiotic because I have bronchitis. I just can't get a break right now. My brother is sick too. He has an ear infection and a sinus infection. He is feeling better today too. We are 2 days away from starting the ketogenic diet. I will be admitted to New Orleans Children's Hospital Monday and will have to stay until Thursday. I have to fast for 18 hours. This should be no problem for me. I've gone longer than that when I have been put to sleep for testing. We would like for anyone who wants to fast with me to do so. We will use this as a time of fasting and praying for healing. The fast and praying will start at 6:00 pm Sunday night and will continue until 12:00 p.m. Monday. If you really thing about it, its not that bad. During this time, I will be aloud to drink water with sugar free crystal light in it. We are also asking everyone to wear their Jadon's journey shirt or purple Monday to support me. I left a picture of my mommies work people showing their support for me. Thank you all for supporting me and taking care of my mommy. She couldn't do it without you. Please continue to pray that God will continue to heal me. I really have come a long way. Also pray for my family. We are anxious about starting a new diet. We know it will be hard, but as I've said before nothing can be harder than having seizures everyday. We love all of you and we will keep you posted while we are in the hospital.

Sunday, October 31, 2010

Sick for Halloween

I have been sick all weekend. I started wheezing Thursday night. Mommy and daddy took me to the doctor Friday. They started me on breathing treatments. The breathing treatments helped with my breathing but they caused my seizures to be very strong. So I could only take a half of dose of the medicine and only when needed. I haven't needed a treatment since Saturday. Yesterday my fever was 103.4 and today it is only 100 so I'm doing much better. As far as my seizures, I had a really good day Thursday. I only had about 30 spasms all day. I'm also not having them at night anymore. Of course now that I'm sick they are up but I'm sure they will go down once I'm better. We are 1 week away from starting the ketogenic diet. This week we are going to eat everything I can't have on the diet..LOL Please pray for us as we are nervous about starting something new. Everyone keeps saying that its hard but hey what can be harder than watching me have seizures everyday. There is not a day that goes by that my family doesn't hurt for me. Maybe this diet will be the answer we have been waiting for so long. I have been seizing everyday for 8 months now and that's not counting the 2 months before I was diagnosed. I did have 2 days of seizure freedom during the 1st dose of ACTH but that's it. Please continue to pray for me. Your prayers are working and I'm on my way to being healed.


FYI
If you haven't seen the movie "First do no harm". It's definitely worth watching. It's about a mother and her son who had epilepsy during the early 90s. None of the medicine they tried worked so she starting researching herself. She read about the ketogenic diet and fought to get her son on it. It made me very thankful for the resources we have today.

Thursday, October 28, 2010

Neurologist visit


I know I haven't updated in a long time. We have been super busy with all the fall activities. We have actually just been enjoying me having less seizures. I'm having about 40-60 a day. Even though I'm still having this many I'm doing lots of new things. I'm clapping, I said ma ma, and I'm holding my bottle and cup. Just imagine what I could do if we could get them down to 20. I saw my neurologist today. She is looking into trying to increase my banzel if possible. She said since it has decreased my seizures so much she would like to increase it if possible. Other than that she said I look fantastic. We are still scheduled to start the ketogenic diet November 8. She is hoping that between the diet and the banzel that will we get these under control. Please continue to pray for me. Your prayers are helping me more than you know!!!! I'm leaving you a picture of my brother and I playing this morning. He loves me so much. Mommy doesn't have to tell him to tell me bye in the mornings. He always gives me a kiss before he goes to school. So sweet :)

Wednesday, October 20, 2010

Ketogenic Diet

My seizures are staying about the same now. I'm only having about 20 during the night and then about 40 during the day. So the medicine is definitely working. We are very thankful that my seizures are down. We still aren't satisfied with 60-80 a day though. Mommy talked to my neurologist in New Orleans today and we are going to start the ketogenic diet. Mommy and daddy have been researching between Vagabatrin and the keto diet since we left Boston. They both think that it is less risky to do the keto diet. We know that it is going to be hard, but we would rather start this diet while I'm still young. The diet has a very high success rate. We went and got my vision checked and talked to the eye doctor about the medicine and we just don't want to risk vision loss right now. My strengths are my vision and my personality. I already have so many issues and we think its too risky. So we are waiting for the neurologist to call us back with a date to start the diet. I will have to start it in the hospital and stay for 4 days. We are not looking forward to the hospital stay but we believe that this is the next step that we should take. In Boston we had decided to go with Vagabatrin, at the last minute the doctor came in and said try Banzel first. We believe this happened for a reason and that the diet is the right way to go. Hopefully the combination of the diet and the meds that I'm on will give us seizure control. If the diet works, I will be on it for two years. Two years is also when Boston wants to see us back to repeat the test that they did recently. Please continue to pray for me. I've really come a long way in the last week.

Monday, October 18, 2010

Great Day!!!

I was hesitant to post this because it seems like everytime I post good news we have days of bad. I finally decide that I was because today was a great day. I don't have many great days so we are just going to praise God for today and pray that we will have more good days than bad. I made it all night without having any spasms. When I woke up this morning, I had a bad cluster of around 35. Since then I have only had about 25 more spasms. This is a huge improvement. Thank you God!!! Maybe this medicine with the help of your prayers is working better than we thought. We will definitely know in the next couple of days. Thanks you God for this great day and thank you all for your prayers!!!!

Sunday, October 17, 2010

I just don't know


After mommy increased my medicine Thursday night. I had a great night. I slept the entire night. I can't remember the last time if ever that has happened. Well when I woke up that morning, I had a cluster of over 90. I had a pretty good day after that with very few spasms. I'm having less clusters throughout the day but I'm having so many spasms in each cluster. I'm actually having more spasms than before. So we really don't know what is better. We increased the medicine again this morning for the last time. Mommy and daddy are going to see how I do the next couple of days and then call my doctor. So we will see how I do on the increased dose. We are thinking I was doing better at the beginning of the week because they took me off the clobazam. I'm still more vocal and staying awake more. I have learned to hold my own sippie cup. I used to could hold it while laying down but now I can do it in any position. So mommy took my bottle away and I get everything through my sippie cup. I don't miss my bottle at all. I'm satisfied to drink out of my sippie cup. I'll update in a couple of days and let you know what my seizures are doing. Please continue to pray!!!

Thursday, October 14, 2010

Still improving :)

My seizures continue to get better. They are still not controlled but they are better. I'm only having them when I go to sleep, when I wake up, and then just a few here and there. I'm also sleeping much better. In fact, last night I only woke up 1 time. I had 15 spasms and then went right back to sleep. That is a significant decrease at night. I'm also still only taking two naps a day. I sleep about 2 hours in the morning and 2 hours in the afternoon. This makes us so happy :) We will increase the banzel again tonight. Please continue to pray for improvement. Your prayers are working. We are praying that once I get on the full dose we will have control of these spasms. Thanks for caring and praying, Jadon

Tuesday, October 12, 2010

A little better.

So my seizures are a little better. I'm still having alot but they are better. I was having them all day long. Now I'm only having them when I go to sleep and wake up. I had one bad cluster of 30 this morning but the other clusters were only about 12. I had a few single spasms here and there but overall they are better. I'm estimating about 70. I was having over 100 in Boston. We still have to increase the medicine two more times. So maybe this medicine will work. We will continue to pray that it will be our miracle drug. I am totally off my clobazam and I can't tell you how excited I am. I am not tired all the time. I am napping just like a normal 1 year old now. I have never done this. I have always slept like an infant. Now I'm taking only two naps a day. I'm also more vocal and I'm moving around more. I just wish we could have stopped that clobazam earlier. I will keep you updated. Please continue to pray for me. I love you, Jadon

Sunday, October 10, 2010

My trip home and a little more info


I first want to thank everyone who is following my story and praying for me. No we did not find a cause for my seizures in Boston, but we do know what kind of seizures I'm having. We also have a plan to try to control these seizures that are so hard to control. I know this sounds crazy but to not have a cause is atually the best thing that we could hope for. Now on to the last two days. We had a great flight yesterday. We left at 8:30 and landed at 11:00. I was so excited to finally get home and see my big brother. I did have an increase in seizures yesterday. It was probably due to the horrible day I had Friday. Right before they took me for my PET scan, I lost my IV. Well our IV luck had ran out. They could not get a vein. It took them 5 times to get me. In fact, I almost missed my PET scan. The medicine that they have to inject expires after so long. Mommy and daddy ran downstairs to necleur medicine and we made it in time. I was totally exhausted and then they gave me meds to make me sleep. We are asuming that is why I had an increase. My seizures have been pretty normal today. About the same as I was having in Boston. I have only been on the banzel for 2 days. We will not know if it is working or not for about 9 days. It takes 9 days to get on the full dose. Now we just have to wait and see what happens. That is the hardest part. We are trying to stay positive and look at the good in all this. One good thing is that since I'm having IS and not myoclonic jerks there is a 10% chance that I will outgrow this. We are also very excited that it is not affecting my entire brain. We don't know what the long term effects will be, but we have to believe that one day I will catch up. Please continue to pray that we will get these seizures under control. I'm leaving you a picture of me playing outside with my brother yesterday. I missed playing with him so bad and you can tell how happy I am.

Friday, October 8, 2010

We are coming home tomorrow :)


I'm finally finished with all my test. The leads that were on my head have left sores because they were on so long. Mommy and daddy are putting medicine on it so hopefully they will heal quickly. I was discharched from the hospital around 6:00 pm. Mommy and daddy brought me to an italian restaurant across the street from the hospital. I loved it and ate a lot of food. I was so hungry after they starved me all week for all those test. After that daddy surprised us with a hotel room. Now we get to sleep in a comfortable bed and we have our own bathroom. LOL On to my PET scan results. The PET scan gave the same information as the other test did. My seizures are coming from the left hemiphere but they can not find a focal point. So I do not qualify for surgery at this time. As my brain develops I might qualify in the future. So far now we have to try and control these seizures. Dr. Bourgeois came to visit me this morning. He said he wants to try Banzel before Vagabatrin. So I started Banzel tonight. I will continue to have my eye exam so I will be ready to start the Vagabatrin in case the Banzel doesn't work. Hopefully the Banzel will work and then I won't have to be on the Vagabatrin. So please pray that it will work!!! Our flight leaves at 8:30 in the morning and we will be back in NOLA at 11:00. I can't wait to see my brother Jacob.

Thursday, October 7, 2010

More results


We don't have the official results of the SPECT scan. He did say that it didn't turn out as well as expected. The first test was not great due to the shortness of my seizures. The medicine is suppose to be injected at the start of a seizure. Well mine was injected at the start but the seizure was so short they didn't get the full effect. The second wasn't that great because I can't go long enough without having seizures. With that being said, he did say that all my seizures are coming from the left hemisphere of my brain. That is also what my EEG is showing. So he seems to think that the PET scan will give us the information we need to determine if I'm a candidate for surgery. We will not know this information for several weeks. The entire neurology team has to study all the test results and then they have a big meeting on just me. It is about 20 people in the meeting which means 20 opinions. I think we are definitely in good hands. So now on to medication. We will not start the new medication until we get back home. I have to be monitored when I start the medicine and I have to have eye exams. I also have to be off the clobazam. The neurologist was going to wean me off by Thursday but he said my EEG looked alot better today since we stopped the meds. Unbelievable another seizure med that was increasing my seizures. Since this is the case, I will be completely off of it Monday. Mommy has to call my neurologist tomorrow and get me an appointment ASAP so we can start the new medicine. Please pray for tomorrow's test and for the doctor's who are studying my case. We love you all!!!

Wednesday, October 6, 2010

A few results


We have not received all of my test results back but here is what we know so far. My MRI is normal. I am sad to say that my IS is back. These seizures that we thought were myoclonic are actually spasms. That is why I'm regressing. So of course the way we treat them is totally different now. After alot of studying, praying, and talking to the neurologist we have decided to go with Vigabatrin(Sabril). This is a risky medication because it can cause vision loss. My vision will have to be monitored real close. If the medicine does not work then we will discontinue it within a week. The neurologist thinks that we should give it a try because I'm having so many spasms and we need to stop them. Please, please, please pray that this will be our miracle medicine and that I will not have any side effects from it. Also pray for my family as the thought of vision loss scares them really bad. We do believe that God has us here for a reason and we have faith that this is what we are suppose to do next. We stopped the clobazam today and we will start the vigabatrin soon. The doctors are saying as long as we watch my vision closely we can stop at the first sign of visual change not causing too much damage. We should know the results of my SPECT scan tomorrow. We don't know how well it will turn out because you are suppose to go 2 hours without having a seizure. Well I can't make it more than 45 minutes. So we will see what the test results say tomorrow. I don't have any testing tomorrow so I can eat whatever I want. It has been very hard the last 3 days. Being sedated for 3 days in a row is absolutely terrible. At least we get a break tomorrow and then the PET scan Friday. As you can tell from my picture, I am still just as happy as can be. I will upate you as we get more information. Thanks for praying for us. We miss all of you!!

Monday, October 4, 2010

Very long day.


It's been a very long day and a very tough one for me. I couldn't eat this morning which made me very irritable. I did enjoy riding to the hospital in my stroller. I love watching all the people. The hospital is absolutely amazing. It is huge. It even has a CVS pharmacy and food court. The hospital staff is very nice and they are treating me well. When I got here this morning they took me back for my MRI. Mommy and daddy got to stay with me the entire time. Mommy loved that she did not have to leave me. After the MRI, I stayed in recovery for about two hours. They then sent me up to my room. Once we got to the room, they came to put my leads on. It was horrible. I screamed so much that I made myself hoarse. It didn't hurt, I just don't like anyone messing with my head. I have been fine ever since then. All smiles :) I have my SPECT scan in the morning so I will have to be sedated again. Hopefully we will have some info to give you tomorrow. All the neurologist said today was that they were testing to see if I'm a surgery candidate. I'll update when we get more info. Please continue to pray. That's the best thing you can do for my family and me.

Sunday, October 3, 2010

We made it.


We made it to Boston. I did wonderful on the flight. The people on my flight told my mommy and daddy that I was such a beautiful and good baby. Once we landed we took a taxi to the House on Autumn Street. The house is called the Devon Nicole House. It is set up like a dorm. Its perfect for what we need. Everyone in the house is nice. It's sad to see the sick kids staying here. We did get to go do a few things today in this cold weather. We went on a duck tour which was lots of fun. It was a vehicle that was built during World War II. It drives on the road and then turns into a boat for water. I slept through most of the tour. After the tour we ate lunch at the prudential center. We then went to Bunker Hill, the USS Constitution, and finally Fenway Park. We had lots of fun but we sure were tired after all that walking. I did get to ride the subway several times today. It took mommy and daddy a little while to figure out all the routes. We made it all over town without taking the wrong train. We also went out to eat tonight. Eating is not a priority over here like at home. We have asked 3 people about a good restaurant to go eat and they all say "well there is a food court right up the road". LOL We found a longhorn to eat at with sweet tea. It has definitely been a fun day. Tomorrow starts all the not fun stuff. I have my MRI at 10:30 which is 9:30 our time. I then have to be hooked up to the EEG. Please pray for me as tomorrow is going to be a hard day for me. I will update you once we get settled tomorrow. Thanks for praying and I love you all.

Wednesday, September 29, 2010

3 more days

Sorry I haven't updated in a couple of days. It's just hard to update when things are not to good. I still continue to regress. This makes us so sad. I worked so hard to get to where I am and now I'm losing it. I am still able to sit up and I am still grabbing things. So that is great. The increase in topamax has helped my seizures. I'm not having nearly as many. Still alot but better. So things are getting a little better. I didn't get my blood work done Monday. My mom gave me my medicine so we couldn't go. It's very hard when you give medicine every day at a certain time. It throws mommy off when they say don't give meds. She said it must have happened for a reason. They are going to check everything when we go to Boston so we will just wait until then. No need to put me in pain twice right. Speaking of Boston we leave in 3 days. We are very anxious, scared, etc. Please pray for us as we prepare to go. The shirts that everyone ordered will be ready tomorrow. I will try my best to get them delivered to everyone by Friday afternoon. I may need some of you to meet me. I will let you know. I want to thank everyone at my church. You have blessed us more than you will ever know. We are so blessed to have such a great church family. We love you all!!!!

Sunday, September 26, 2010

Busy weekend!!!

We have had a very busy weekend. Yesterday we went to my cousin Allie's birthday. She turned 2 years old. It was a very special party. She told everyone to please bring me a donation instead of bringing her a present. Isn't that just too sweet. We raised lots of money at the party. I want to say thank you to my very sweet cousin Allie and her family. I love you!!!
After the party we went to the healing mass in Tickfaw. It was great and they prayed for me after the mass. Thank you Ms. Birdie for inviting us. Today we went to our church. Lots of people prayed for me and then they took up a love offering. I just know good things are to come for me. I know that God hears our prayers and we have lots of people praying for us. Our God is a great God!!! As far as my seizures go I'm still having alot. I'm also still very tired. I'm suppose to have blood work in the morning to check my medicine levels. They increased my topamax Friday because I was having so many seizures. Now they want to check my levels. Please continue to pray for me. The anxiety is starting to build as we prepare to leave Saturday. Check out the bible verse I added to my page. We know nothing is impossible with God and we know He will heal me in His time.

Thursday, September 23, 2010

Seizures leave me alone.

The shirts are all ordered and will be ready next Friday. My mommy will try to deliver them to everybody on Friday. That is fair day so we will be off of school. I haven't updated you on how I'm doing in a couple of post so here it is. I'm not doing to great. I'm having lots and lots of seizures. They are very intense and making me very tired. We thought they would get better since I'm not sick anymore but they really aren't. They had already started increasing before I got sick. During therapy today I had 7 seizures. They all knocked me to the ground. I lost total control of my entire body. Most of the time when I have seizures others barely recognize them. Well the ones I'm having now are very recognizable and my eyes are rolling farther back. My arms and legs are moving during them also. We are praying that this is not a different type of seizure. We leave for Boston 1 week from Saturday. I hope I can make it until then. I hate these seizures and the way they make me feel. I'm also starting to regress developmentally. My therapist said that my muscle tone is weaker too. All of this because I'm having so many seizures. We just can't get to Boston quick enough. Please continue to pray for me and I will update you soon.

Tuesday, September 21, 2010

Finally an answer from medicaid.

So we put in an application for the medicaid buy in program 4 months ago. It basically helps pay co-pays, private therapy, and medicine for me. It took them 4 months to answer but they approved me. Yay!!!! We are so excited. This is going to help me alot. We really didn't think we would get approved but we did. Thank you Lord. Other than that we are still taking orders for t-shirts. The color of the shirts will be purple with white writing. Thank you Ms. Betty for helping my mommy find the color for epilepsy. Purple represents a cure for epilepsy so that is why we are using this color. I'm really excited about this. Several people have asked about paying for the shirts. I will collect your money when I deliver the shirts. Right now all I need is your size. I will place the order on Thursday. Thanks everyone for praying for me. Check out the video and song below. It's about how God gives us strength and with Him all things are possibe. It's a pretty awesome song. You will have to go pause my playlist at the bottom of the screen so you can hear the video without my page music playing. I love you, Jadon

Monday, September 20, 2010

T shirts and prayer

So several people have asked my mommy about getting a shirt like the ones we wore to my fundraiser. Well my mommy talked to Ms. Connie today. She said that she can make some as long as we have an order of at least 12 shirts. I left a picture of us wearing the shirt. The back says follow Jadon at, and it gives my website. To keep things simple we are asking $10 for each shirt. If you are interested please email my mommy at monica.pailet@gmail.com with your order. You can also message her facebook account. She will place the order this Wednesday. So you have to order pretty quickly. We are asking that you wear the shirt on October 4. This is the day that I will be admitted to Boston Childrens Hospital. We hope that the shirt will be a reminder to pray for me and the doctors. While I'm talking about prayer, we are asking for everyone to start praying for me at 12:00 noon or 9:00 pm whatever is better for your schedule. We are asking that you start now and continue while we are in Boston. We believe in the power of prayer. We also know that God hears the prayers of the righteous. If we all come together and pray imagine what we can do. Thanks everyone for your prayers and thank you for caring for me and my family. Many people tell my mommy and daddy "I don't know how you are doing it" Well it's because of your prayers and your words of encouragement. I found this prayer online about praying for sick children. If you would like to use it when you pray feel free.

Lord, you love Jadon as you love all children,

Bring healing to him who is not well.

Stay by his side and comfort him through this trying time.

Keep his family ever mindful of your loving presence.

Bless Jadon with your powerful healing and comfort him also.

Thank you for hearing our prayer!!!

Saturday, September 18, 2010

In the hospital again :(

It has been absolutely crazy around here. My mommy had to leave work Thursday because my brother was just laying around and had no energy. She brought him to the doctor and he was severly dehydrated. Our pediatrician sent him to the hospital for what we thought would be an overnight stay. He was so sick he had to stay two nights. He didn't make it very long without me. I got sick around 5:30 Thursday night. I was staying with my Mar and Paw. They could not get me to keep my seizure meds down. So off to the ER we went. My mommy was waiting for me when I got there and my daddy stayed with my brother in the room. They gave me some zofran and it settled my stomach and I was abe to take my medicines. They admitted me because my vital signs were not to great and my blood work said I was already dehydrated. Once I got my IV meds my vitals got much better. We called my neurologist yesterday and they said to give me an extra dose of my keppra. It has help with my seizures. I'm still having alot but less than I did yesterday. I also look alot better. My brother is much better. He has been playing and back to his old self. The doctor just came in and said we get to go home. I'll keep you updated. Thanks for all your prayers.

Wednesday, September 15, 2010

Not Good :(

Things are not to good at my house. My brother and I both have fever. My brother has the stomach bug and mommy thinks my fever is because I'm teething. I'm having about 80 myoclonic jerks a day. I'm very fussy and tired. Mommy called my neurologist yesterday. We are having to see another neurologist because mine is off on maternity leave. The neurologist said to increase my clobazam. Yes the medicine that I'm still on that has not helped at all. Well it didn't help at all. Can you believe that? I'm not a neurologist but come on. So they will probably be getting another call from my mommy tomorrow. Please pray that we get better around here. All this sickness is no fun.

Monday, September 13, 2010

Application approved!!!!

So we heard back from Boston today. Our application for housing was approved. We will be staying at the House of Autumn which is right across the street from the hospital. We will be able to walk there from the hospital. We did have a little issue with the flights. We will be flying into Boston on the 2nd instead of the 3rd. It is going to save us $450 by flying in a day early. Mommy and daddy said it will give us a day to go see some things in Boston. We also got a call from the hospital today. They got all my information for my MRI testing. They said we should be getting another phone call within the next few days with all the final information. My seizures continue to increase. They are also getting stronger. It's still the myoclonic jerks but they are more intense. Mommy won't call my neurologist because their answer is always clonazapam which is worse than the seizures. Please pray that I can make it 3 more weeks. Pray that these seizures will stop increasing. I am getting 4 new teeth so maybe that's why I'm having more seizures. Who knows with these crazy things. Please keep praying and I will update you later in the week :)

Saturday, September 11, 2010

Medicine reaction, Seizures, and Final Dates for Boston

It's been an eventful last couple of days. I'll begin with my antibiotic reaction. I have been sick with a sinus infection for almost 2 weeks now. My Mimi and Aunt Mendy took my brother and I back to the doctor Tuesday because we were not getting any better. The doctor put us both on augmentin. Well I broke out in a rash all over my body. I had little red dots everywhere and then huge red dots on my back and stomach. Mommy called the doctor and they said to stop the augmentin, give me benadryl, and call them back in the morning and give them an update. My rash got better so mommy called them the next day. They said give me half the dose of medicine and call them back a 2. Guess what happened? Yes I broke out again. So the doctor had to change my medicine. The rash went away and I'm feeling much better. In fact, my nose has finally stopped running. Seizure wise I'm not doing to good. My seizures seem to be increasing daily. I'm still doing well developmentally just having lots of seizures. We are so ready to go to Boston. They have changed our date to October 4th. We will fly out October 3rd and come home October 8th. The doctor said he will just do everything while we are in the hospital. That way we don't have to go on the 29th and wait until the 3rd for admission. My mommy is trying to reschedule our flights. They have doubled in price but thanks to all of you we have the money to make up the difference. Mommy also put in for the house across the street from the hospital. That way mommy and daddy will be able to go take a shower and all that good stuff. The hospital rooms only accommodate for 1 parent but mommy and daddy always make it work some kind of way. If not we will have this room to stay and keep our belongings. We will all stay there on October 3rd and 7th. It will only cost $30 a night if they accept our application. Hopefully they will. This house is for families that travel more than 50 miles and have patients in the hospital. We should get it being that we are well over 50 miles away. Please continue to pray for me and my trip. Love ya, Jadon

Tuesday, September 7, 2010

Boston here we come!!!

My mommy spoke with the neurologist in Boston today. The first question out of his mouth was how long are you planning to stay in Boston. My mommy said as long as you want me to. So this is the plan. After reviewing my case he wants to admit us to Boston Children's Hospital for 3 or 4 days for testing. They will do a 3D MRI of my brain as well as a SPECT scan. I have posted the link that describes the SPECT scan. It is basically a test that will monitor my seizures, my nerves, and tell us what parts of the brain are active. Pretty cool right. My mommy and daddy are excited about this and we are looking forward to maybe finding some answers while in Boston. Our travel dates will be changing but we will not have definite dates until tomorrow. We will either be admitted on September 26 or we will have to wait until the following week October 4. The SPECT scan takes 3 to 4 days so I have to be admitted on a Monday. If they can't take us on the 26 then we will have to wait in Boston after our appointment on the 29 until October 4 for the admission. I am asking that you start praying for our trip, the doctors, and that we will get some answers. Hopefully we will be able to get the seizures under control in my near future. Thank you all who donated and made this possible for me. It really means everything to my family. Thanks again for your prayers. I'm leaving you a picture of me swinging. Paw put it up yesterday and I just love it as you can tell. I love you Jadon!!

Monday, September 6, 2010

I will never understand.

I will never understand why children have to get sick. I will never understand why a seizure medicine can have the opposite effect. I will never never understand why so many children have to suffer from sickness. I will definitely never understand why God needs a child in heaven more than a mother needs her child. Yesterday our Amite family lost a beautiful, brave, and loving little girl. She was one of the bravest people I know. I am asking that you please pray for this family. I can't imagine the heartache they are going through. They need strength right now. Also pray for this little girls friends. Friends shouldn't have to lose friends at such a young age. Though I will never understand these things I know God has a reason for them. I also know that God received a beautiful angel yesterday. She is now pain free. So today I'm leaving you a picture of this beautiful little girl and her family. Please pray for them. Caroline you will never be forgotten. You touched many lives while you were here. Rest in peace beautiful girl.

Wednesday, September 1, 2010

Much better :)

I'm feeling much better today. I gave my mommy and daddy a real good scare Monday night. My fever shot up to 103 and I was screaming crying. This caused me to start having trouble breathing which scared them very much. Mommy gave me some medicine and rocked me. I finally settled down. Once I settled down I started breathing better. It took about an hour and half for my fever to go down. Once it went down it never returned thank God. I still have a yucky cough but I look and feel much better. My seizures are also better. They are back to about 40-50 a day. My mom never gave me the clonazepam and would you know my seizures got better without it. Sometimes mommies know better than the doctors. I mean they are the ones that watch you all day long. My mommy and daddy have decided to cancel my private therapy at North Oaks. We are very sad about this. We love our therapist at North Oaks. It is just way to much for my mommy to handle right now. We have no one to bring me to therapy during the day and North Oaks doesn't have anything in the afternoons. So I had therapy 4 days a week now I will have it 2 times a week with early steps. Even though we canceled therapy my mommy will continue to do therapy with me daily.So I will still get my therapy and trust me mommy has learned what she needs to know to do therapy with me. My mommy feels really bad about this but now that she is working she just can't bring me. Other than that we are waiting to hear from the doctor in Boston. He is suppose to call my mommy tomorrow. He is looking at all my test that we sent over. I will let you know what he says. Please pray that he will call with good news. If he can't do anything different I don't know what we are going to do. We are running out of options. In fact my neurologist at childrens in New Orleans said we are not going to try anything new right now. So you can see we are stuck. Mommy and daddy refuse to give up though. We believe that we can control these and that God will heal me in his time. He has already healed part of my brain. When my seizures first started, they were all over my brain. Now they are just in the back left part of the brain. So we will get there. Thanks for your praying for me!! Jadon

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!!!!

Saturday, July 31, 2010

New medicine=No sleep :(

Well I don't know if it was the new medicine or if I just had a bad night but I did not sleep last night. I have only had 1 dose of the medicine so I'm not convinced it is the medicine yet. I sure hope it isn't because my mommy goes back to work in 1 week plus I need my sleep. The new medicine I'm taking is trileptal. My mom had a hard time finding a pharmacy that had this medicine. Our local pharmacy didn't have it and couldn't get it until Monday. Well I can't wait until Monday because I have a neurologist appointment and the whole point of her starting me on it on Friday was so she could see how I'm doing Monday. Well we finally found it at a pharmacy at Independence. Mommy has 2 friends that are the pharmacist at this pharmacy so she did enjoy getting to see them. It's still too early to tell if the medicine is working. In fact I'm on a small dose for 5 days and then we double the dose. It will be about a week before we know if it is working or not. We do have a few fundraiser that my friends are working on for me. As soon as I have the details I will let you know. The 1st one is going to be next weekend at the snowball stand. It's going to be a blast. I'm so thankful that I have people that want to help me get to Boston. Well I'm off to Hammond today with mommy, Jacob, and Mar to go shopping. Can't you tell I'm just estatic...lol I hope everyone has a great weekend and I will update you after my neurologist appointment on Monday. Please pray that it goes well!!!

Thursday, July 29, 2010

Back Home!!!

We made it back home shortly after lunch this afternoon. I had so much fun on our short little get away. I even learned to do some new tricks. I sat in a high chair for the first time ever. I'm also putting weight on my feet. I have also mastered sitting. All mommy has to do is put me on the ground and she can walk away and not have to worry about me falling. My mommy says I just keep amazing her everyday. I'm doing so many new things each day. I am so much stronger than I was just a week ago. Our God is totally awesome and is doing so many good things in me. Thank you so much for praying for me. I believe that the only reason I'm progressing so well is because I have so many people praying for me so please please keep praying. I wish everyone could see me and see how well I'm doing. My friends that haven't seen me in a couple of weeks are in total amazement at my progress. I left a few new pics of my new tricks. I will add the beach pics to my slideshow sometime tomorrow. Thanks again for praying and I love you all, Jadon

Wednesday, July 28, 2010

Quick beach update!!!

I'm having a blast at the beach. We went early this morning so it wouldn't be so hot. I played in the sand and took a nap on my mommy. Later today we are going swimming in the hotel pool. Then its putt putt golf tonight. As far as my seizure, I'm still having about the same. We have not seen any increase. So that is wonderful. I'm leaving you a few pictures from this morning. I'll upload more when I get home.

Tuesday, July 27, 2010

Bye bye we are off to the beach!!!

We are off to the beach for some much needed relaxing with family. We are leaving when my daddy gets off work today. We will be in Biloxi until Thursday. We don't want to go too far and mommy found a room for real cheap at the palace. My big brother Jacob is so excited. He has never been to the beach before either. It's going to be so much fun. I will try to post some pictures one day while we are there. Please pray that I will do ok with my seizures while gone. This is the first trip we have taken since I got sick. I left a video of me waving bye bye. I just started doing this yesterday. I'm getting so smart :)

Monday, July 26, 2010

Neurologist Report and Look What I can Do!!!


I first want to tell you my good news. Yesterday I started sitting up. I would sit while playing with a toy for about 1 minute. Today when my therapist came, I sat up for 4 whole minutes all by myself while playing with toys. My therapist was amazed at what I'm doing. I'm also putting some weight on my arms. Only about 3 seconds with my right hand but longer with my left. My new therapy mat is definitely working. I left you a picture of me sitting up like a big boy. You can see how proud I am. Now on to my neurologist report. My neurologist called this morning. She was out on vacation last week so she just saw all my results this morning. She said that since the EEG showed that all of my seizures are coming from one area she feels like I am having focal seizures. This means all my myoclonus seizures are coming from one spot. This makes her believe that there is something abnormal with the left side of my brain its just to small to see on MRI. So she is not going to start me on banzel. She wants to start me on trileptal. Trileptal is a seizure medication used to treat focal seizures. We will not start it for a week. She wants to decrease my clobazam and give it a week to make sure my seizures don't increase. Once I'm on a full dose of trileptal we will begin to wean me off of keppra. So I have lots of medicine changes coming up. Please pray that I will have a good transition of medication. Also pray that these changes will control my seizures. I will update you and let you know how I'm doing. Love ya, Jadon

Sunday, July 25, 2010

11 months old


I'm 11 months old today. I can't believe that I am already 11 months old. Only 1 more month until my farm birthday party. I can't wait:) Time is surely going by very fast. I've been fighting seizures for 5 months now. We have come a long way but we hoped they would have stopped by now. Maybe one day soon. We must be patient and know that God is in control. The older I get the more obvious it is that I'm developmentally delayed. I'm still having trouble sitting for more than 10 seconds, I can't put weight on my feet, and I can only say the g,m,and vowel sounds. Even though it gets harder as I get older my mommy and daddy are very thankful for how far I have come. I'm very alert,determined, and happy. I can grab objects and blow bubbles with my mouth. I'm doing so good considering all that I am going through. All it takes is one smile from me and I can just make any ones day better. Thank you God for everything you have done for me. I'm leaving a picture of me on my new therapy toy. I was suppose to get it for my birthday but mommy didn't want to wait. She found it online and knew it would be perfect to help build my arm strength. I have already figured out how to go in a complete circle. The mat also has different textures. It crinkles and honks when you press Pooh's nose. I love it!! If anyone is looking for one wal mart has them for only $30. If anyone has any other interesting therapy toys let me know. I hate therapy so my mommy and my therapist try to be creative so I can enjoy it :)


Happy 11 month old day my sweet little boy. Mommy and daddy love you so very much!!!!

Thursday, July 22, 2010

We are going to Boston.

I've been doing great since I got home. In fact I slept all night long last night. Mommy let me sleep next to her and I slept so good. I went to sleep at 9:00 and didn't wake up until 7:00 this morning. This is the first time I've done this in a long time. Usually the seizures wake me up and I can't sleep. Mommy said I can sleep by her every night if I sleep all night. Mommy and Daddy have been looking at many epilepsy specialist. We finally made our decision and mommy made an appointment for me to go to Boston Childrens Hospital. Boston is the #1 pediatric neurology hospital in the world. We will be seeing the head neurologist who also specializies in epilepsy. So I will be going with my mommy and daddy to Boston on September 29. We are hoping we can get some answers. We have to send all of my testing that has been done in New Orleans. I want to say that we love Children's in New Orleans. They have gone out of their way to help us. We just want another opinion. We want the best outcome and I think any good mommy and daddy would want to do everything possible to help their child. So thats what is going on with me. I will keep you all updated. Please continue to pray for me as I fight to overcome epilepsy. I also added the share buttons to each post. You are more than welcome to share my story. The more prayers the better :)

Tuesday, July 20, 2010

I'm going home:)


I am on my way home from Children's. Today was a very stressful day but I'm happy now that I'm out of that hospital room. They unhooked me from the VEEG around 9:30. I hated having that cap and leads on my head. When they first hooked me up they said I would probably forget about it. Well I surely didn't forget about it. I scratched and pulled at it until they took it off. I was happy when they finally took it off but I screamed the entire time she took them off. I still have glue in my hair. My mommy washed it for me this afternoon and its almost all gone. They were suppose to come get me for my MRI between 10-11. Well it was 12:00 before we went down to MRI and 12:30 before they took me back. Yes I was starving but mommy and daddy played with me and entertained me. My mommy and daddy were not real happy with this because I could have eaten at 6:30 instead of 4:00am big difference. I did much better coming off the anesthetic this time. I didn't cry and started eating and drinking right away. So now for the results. My MRI is perfectly normal. They can not find anything abnormal. My EEG is showing that all my seizures are coming from the back left of my brain. So we do know there is some type of abnorality with the left side of my brain. It's just not showing up on MRI. As my brain develops we may be able to see it in the future or we may never see it. For some reason my neurons are not communicating correctly on that side of my brain causing some background slowing. The good news is I'm only having one type of seizure and that is myoclonics. These seizures are not causing any damage to the other parts of my brain. In fact the right side of my brain is perfect in every way. I'm also not having as many seizures as we thought. Probably around 40-60 a day. The EEG proved that some of my head dropping is not seizures its just me losing control for a moment. This is all great news. So what do we do next? I have to stay on the clobazam until next week. We are then looking at starting banzel. So we basically have to try another medication. In the meantime we are looking at seeing an epilespy specialist to see if they can find something. We are very grateful for the results we got today, but we are still left with what is causing these seizures and how do we fix it. Oh how we long for the day we can say I'm seizure free. I left you a picture of me smiling and being good for my mommy and daddy :)