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, November 30, 2010
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
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
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
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
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
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
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
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
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.