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, March 30, 2010

Sharing some smiles!!!

Well my spasms haven't stopped yet but I had a pretty good day today. Yesterday I had 50 spasms and today I only had 18. We don't really know why it's so up and down but we will take 18 over 50 any day. My mouth is a little better today. I can suck my nunu much better. Guess what I did today. I went and got my picture taken with the easter bunny. I had to take my picture by myself because my brother didn't want to get in it. We were at bass pro shop and all he wanted to do was go look at the fish. I wanted to share a few smiles with everyone tonight. I am finally starting to smile more. Yes I know I have gained some weight but I'll start losing it once I'm off these steriods. It makes my mommy and daddy very happy that I am smiling some.

Monday, March 29, 2010

I went to my pediatrician's office today. They did more blood work and checked my blood pressure. My bp was good and we will get the blood work back tomorrow. My main problem right now is that I have thrush in my mouth. This is a side effect of the medicine I am on. My pediatrician put me on some medicine that is suppose to help it. I sure hope it does because it hurts when I eat and when I suck my nunu. I am very fussy because my mouth hurts. I am still having spasms. I am having about 20-30 a day. Good new is they are not increasing. The bad news is they are not decreasing. They are also making me cry when I have them. I just wish they would stop. The lady from early steps came to my house today. She said I would definitely qualify so we should start therapy sometime after Easter. Well that is about it for now. I'll update again soon. Love ya!!!

Saturday, March 27, 2010

Sorry I haven't updated in a few days but its been a rough couple of days. I am still having spasms. I am having about 20-25 a day. They are not increasing or decreasing just staying about the same. My mommy starts lowering my dose of steriods tomorrow. I will get about 1/4 of the medicine that I was getting. I'm hoping that I will start to feel better once we lower the dose. My mom will slowlydecrease the dose for the next 12 days until I am off completely. Thats when I will have my next EEG and we will decide what to do from there. My doctor said there is still time for me to stop having these with the next 12 days. I sure hope they stop. I'm tired of being sick. I did get to stay with my Mar most of the day. My mommy had to go to Covington and then she brought Jacob to a birthday party. I loved getting to stay home. I even smiled and laughed some today. My mommy and daddy bought me a new infant carrier today. I love it!! It is much more comfortable than my old one. It will hold me until I'm 35 pounds. It is also longer so my legs have much more room. I posted a picture so everyone can see how much more comfortable I am in my new seat. Thanks everyone for continuing to pray for me. I am one special little boy who is loved very much!!!

Thursday, March 25, 2010

A not so good day.

Well my spasms are increasing. I have had 16 already today and it is only 2:45. Mommy talked to my doctor this morning and she wasn't too concerned unless they continue to increase. Well they are increasing and this is not good at all. Thank you all for your prayers and please pray that these spasms will stop. I am also hoarse from fussing so much and this medicine is just making me miserable. Even though I'm miserable I'm not screaming crying just making a someone help me noise. Well I wish I could tell you some good news but we are all very sad right now. We are not giving up though, we will continue to pray and I know we will get these under control.

Wednesday, March 24, 2010

I got my blood work back!!

I got all my blood work back today. Everything was ok except my sugar level. It was just a little high but nothing to worry about. My blood pressure was also ok. I have had 4 spasms today for some reason, but we are trying not to worry about it. Well I do not have a doctors appointment tomorrow and I'm very excited about that. Finally a day to just stay at home with mommy. Please pray that my spasms do not increase. We are trying not to be scared but it is very scary!!! My mommy is going to call my neurologist tomorrow and tell her about the increase today.

Tuesday, March 23, 2010

EEG results

Well my EEG was still abnormal but it was extremely better. They actually saw some acitivity that was normal. My neurologist said on a scale of 1-10. 1 being normal and 10 being the worst that my first EEG was a 10 and the one I had today was a 3. She was very pleased with the results. She said I am doing really well. I only had one somewhat of seizure activity but it leveled off and didn't cause me to have one. They could also see some background to my brain wave patterns. That is really awesome my doctor said. The first time they looked at my EEG they could not distiguish between the back and the front activity of my brain. Today they could!!! Her only concern today was the way I am holding my right hand. My mommy has to watch it and see how much I am using it. She said don't worry about it because the steroids make me do silly things, but they still want to watch it. So please pray that nothing is wrong with my hand. I have another EEG in 2 weeks to see how I am doing then. So for the next 2 weeks I will continue to have blood work on Mondays and blood pressure checks Monday, Wednesday, and Friday. Oh and they still haven't received my DNA test back. It just takes a long time but the doctor said it should not be much longer. As you can see God is slowly healing my brain. Please continue to pray for me and pray that this medicine continues to work!!! I do have to brag a little bit. I had two people tell me what a good baby I was today. One of them was my neurologist. They said that most babies on ACTH cry all day long and I am just a little fussy. They said I must be a good natured baby :)

Monday, March 22, 2010

Spasm free day!!!

Today I made it all day with no spasms!!!!! I am just so excited. I am still very fussy. I did get to stay with my Marna and Paw tonight while mommy and daddy went out for their anniversary. I was very good for them so that my mommy didn't have to worry about me. I went to the pediatricians office today and they had to stick me 3 times before they got a vein. I was not happy at all. My mom said next time she is going to request that the nurse who came in and got me on the first stick take my blood. Its just too hard on me to have to go through all that when someone can do it on the first try. The nurse told my mommy that she would be happy to take my blood from now on. All my mommy has to do is ask for her when we get there. We do not have the results back yet but my blood pressure was still perfect. Tomorrow is a big day for me. I have an EEG at childrens at 1:30. My mommy and daddy are very nervous about this but I know that it is going to be much better this time. As soon as we get the results I will let everybody know. Please pray that all goes well!!!

I want to thank Andy, Mary Margaret, Charles Russell, Leslie, Uncle Dominick, Aunt Linda, Ms. Veronica, and Ms. Josette for the gift they gave me today. It made my mommy cry. I can not thank you enough. I also want to thank Nan for the gift that she gave me and all of you who read my website and pray for me. I am so blessed to have such a wonderful family and friends who care about me very much. I love you all!!!

Sunday, March 21, 2010

I only had 2 spasms today!!!!

I have only had 2 spasms today. Can you believe that? God is answering our prayers. I am very fussy and will not let my mommy do anything but hold me. I feel bad from all this medicine plus I'm getting my very first tooth. So between all of this I really don't feel good. Gotta go get blood work done tomorrow so I'm not looking forward to that. I'll let everybody know what the doctor says. Good night everybody!!!

Saturday, March 20, 2010

My blood pressure was absolutely perfect when I got it checked yesterday. I also only had 15 spasms yesterday. I had a cluster of 6 in the morning and a cluster of 12 around 1:30. Today I have had 23 spasms. I had a bad cluster of 21 when I woke up this morning and have only had 2 since. I really wish these things would stop but I'm trying to be patient. My mom is getting really impatient but she knows its going to take a little while before I get all better. I am getting more irritable and not smiling as much. These steriods are making me feel bad. I'm also gaining lots of weight. Thats ok though because as soon as I get off this medicine I will go back to my normal weight. I did get to go to the oyster festival parade this morning. I slept in my stroller the entire parade. I didn't even wake up when the bands and fire trucks came by. I was really tired. My big brother Jacob caught lots of stuff for me though. Ok well I go back to the doctor Monday for blood work, urine test, and blood pressure checks so I will update sometime Monday afternoon. Please pray that God will heal my brain. Love you all very very much!!!!!

A few pics for you to enjoy! The first one is at the parade this morning and the other is at the St. Joseph's alter last night.

Thursday, March 18, 2010

I'm finally at my house!!!

The last two days have been good days for me. I had 36 spasms yesterday and I have had 20 today. Can you believe that? Your prayers are definitely working. I am finally back at my house. My brother was so excited to see me when I got home. Oh and was I excited to be home. I just love sleeping in my own bed. I went to sleep at 9:30 last night and slept until 8:00 this morning :) It felt good to get some rest and not have to worry about anyone messing with me. Now I get to enjoy being at my house. My big brother is definitely looking out for me. When mommy gives me my shots he says no mommy hurt. He is just so sweet. I'm still being good for my mommy and daddy. I don't like it when they put me down though. I fuss until someone picks me back up. I will let them put me in my swing sometimes but I don't always like that. I have a busy day tomorrow. First I'm going to Covington to get my blood pressure checked. I sure do hope it is not to high. Then tomorrow afternoon I'm going to the St. Joesph's alter. One of my mommy's friends is dedicating it to me. I also get to be the baby Jesus. I am so thankful that so many people are going to pray for me when they visit the alter. Thank you so much Ms. Claire!!! I want to thank all of you for visiting my page and leaving me comments. My website has received over 60 views in just 2 days. That means that lots of people are praying for me. God sure is good!!!!

Wednesday, March 17, 2010

This blog is to let you know what has been going on the past 3 weeks in my life.

So the past 3 weeks have been very busy for me. I have been in the hospital 3 times which is no fun. Here is my story of how I was diagnosed. On Tuesday, February 23 my mommy took me to see my pediatrician. My mommy and daddy were worried about my development and these crazy movements I was making. You see I met all of my developmental milestone until I was 4 months of age. Once I turned 4 months I stopped doing the things I was previously doing. One of them included rolling over, so you can see why my mommy and daddy were worried. My pediatrician looked at my video and was very concerned. She sent us to childrens hospital where I had an EEG and was diagnosed with IS. Once I was diagnosed with IS I was put on clonazepan. A medicine to help decrease seizure activity. After my MRI came back normal my doctor said she wanted to put me on ACTH steriods. This steriod is very expensive so it was going to take several days for it to come in. We were released from the hospital and had to wait for the medicine. Well the medicine finally came in about a week later. Once we got to the hospital to start it the doctor realized that they did not send us enough medication. The insurance company didn't approve the right amount. Well my doctors called the insurance company again and they would not approve my medicine. My doctor decided it would be better to go ahead and start me on some type of therapy so they put me on an oral steriod called prednisolone. We were discharged from the hospital the next day. My spasms got better but they never went away. I was able to do more things physically. I could sit in my bumbo seat and was holding my head up on my own. I had another EEG a week later. They could see improvement but it was still abnormal. My doctor decided to admit me again for the 3rd time. They doubled the amount of prednisolone that I was taken in hopes that it would work. Well it surely did not work. In fact, it stopped working all together. My spasms were increasing instead of decreasing. So that meant we had to fight the insurance company. This time they did not give us any problems thanks to my wonderful neurologist and her staff. We received the medicine and started the ACTH therapy. I am still having spasms but they are decreasing every day. I had 161 spasms this past Saturday and 187 on Sunday. They started me on ATCH Sunday. On Monday I had 147 spasms and Tuesday only 81. Wow what a big improvement. I have only had 12 today but its only 10:30. Still this is wonderful for me!!!!I know that God is watching out for me and my family and I know we will get through this. Please take a minute to watch my slideshow above to see my new tricks. I can sit in my bumbo seat, I can put my hands together, I can grab my frog when sitting in my seat and I just love looking at my fist. I am also more alert and getting stronger every day. After watching it you will be able to see the miracles that God has done for me over the past 3 weeks. My doctors are amazed at how far my physical abilities have come in just 3 weeks.

Tuesday, March 16, 2010

We are home!!

So we made it home from childrens around 5:00 today. I'm back in Amite but I still can not stay at my house. My older brother Jacob is sick and still has fever. My daddy is staying with him and I am staying at my Papa and RaRa's house with mommy. You see I can not get sick because I have a weak immune system right now. Hopefully tomorrow I will be able to stay at my house. My mom is giving me all my medicines now. I know its hard for her to give me those ACTH shots so I don't cry to bad for her. I have many many doctors appointments coming up. I have to have blood work done every Monday and I have to have my blood pressure checked every Monday, Wednesday, and Friday. I also have another EEG next Tuesday at Childrens Hospital. We will get to see my neurologist that day too. Ok well I gotta go night night so I will keep you updated. Please continue to pray for me. I love you all!!!!!