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.
Sunday, May 30, 2010
Well I had to stay with my Mar and Paw last night. It was the first time I have stayed away from my mommy since I was born, except for the 2 nights I spent in the NICU at birth. I had to stay with them because my brother is sick. He is running a very high fever and my mommy doesn't want me to get sick because I'm still on these steriods. Well I did very good. I woke up around 1:30 and played until 3:30 and then went back to sleep. I do this every night though. I just like to get in some play time in the middle of the night. LOL!!! My mommy bought me some new shoes to wear. My PT wants me to wear some walking shoes. I'm not ready to walk yet but the shoes will help with the way I hold my feet. I keep wanting to turn them in so we are working on keeping them straight. I actually like my shoes. I usually cry when my mom puts shoes on me but I will wear these for hours at a time:) Guess what tomorrow is my last day to have to do weekly blood work. I can't tell you how excited I am. I also get my last steriod injection Wednesday. I hope everyone has a good Memorial Day and I will update you later this week. Please continue to pray for me and pray that I don't get sick. This would be very bad. Love ya, Jadon
Friday, May 28, 2010
So my neurologist was very impressed with my development. She talked about how aware and alert I am. She was happy to see that I have such great head control and that I am able to sit some now. I showed her all my new tricks. I even grabbed my toes for her. Now for the seizure part. I am still having 30-50 a day. They are not as intense so that is great. My doctor increased my topamax to see if that will help some. She is not starting me on anything new until we see what my EEG looks like June 8. She said it is ok for me to have spasms throughout the day as long as I am developing. This is very hard for my mommy and daddy to understand because we just want them to stop. So as of now we really just need me to continue to develop. Thats the most important part. Its crazy to think that way but as long as I develop its ok that I'm having little spasms as long as they do not get more intense. The EEG will tell us alot. Our greatest fear is that my EEG will start reversing again. We just have to pray that it doesn't because I can't be on steriods for a long period and that is all that seems to work for me. My neurologist also said that we are probably going to do some more testing on me. She wants to talk to the other neurologist in the department so that they can come up with the best plan for me. We will probably do a spinal tap and a test to check to see that my nerves are communicationg correctly. My mommy did talk to her about the keto diet. She said that is an option but she would rather wait and see how I do this next month. So it looks like more test in the near future and more EEG's to see how my brain is doing. A good thing is that my head is growing appropriately. That is excellent for a nero patient. Another good thing is that she said I am developing better than any other baby that she has seen that has gone through 2 rounds of ACTH. That just tells me that all your prayers are working. Thanks for caring so much about me and for praying for me. Love ya, Jadon
Monday, May 24, 2010
It's been a very long day. I had my weekly blood work done this morning. Thank goodness it only took them two sticks this time. My blood pressure was great. After that I went to Target and JcPenny with my mommy. I was such a good boy. I sat in my stroller the entire time. Then it was time for PT at North Oaks. I did ok. I was a little fussy but I worked real hard. When we got home mom went to Big Bad Bens. Oh I did not like that at all I screamed. Mom said she would never go o the car wash with me again. Boy am I glad. We did stop by and see PaPa afterward so I felt much better when we left. Well I have a busy week. I have speech therapy tomorrow, blood pressure check Wednesday, OT and PT Thursday, and a meeting with early steps Friday morning and then its off to Childrens Friday afternoon. I'm still having the same amount of spasms so we will see what my neurologist says. We are hoping she will put me on the keto diet. Maybe that will help control my seizures. We will see. Please pray that God will work through my neurologist to lead us in the right direction.
Friday, May 21, 2010
Look at me!!! I am able to ride in a buggy now. If you notice I have a pillow in front of me just in case I have a seizure. That way I will not hit my mouth on the buggy. I was just so excited to get to ride in the buggy and not my infant seat. Can you tell? Just look at that smile. Well my blood pressure was great today. I have had about 20 spasms. They are worse in the mornings and then they get better after lunch. Don't really know why but thats what is happening. God is truly amazing and he is blessing me daily. Even though I am having that many seizures a day I am still developing. Isn't that awesome!!!:) Thank you so much for praying for me. I truly believe that I am doing so well because I have so many people praying for me. I am one blessed little boy. Please pray that I continue to develop and that I will be able to get rid of these seizures. I take my last high dose of ACTH tomorrow. I then take lower doses for the next two weeks until I'm totally off of this medicine. I really don't know what our next step will be. We see our neurologist next Friday so I will let you know. Well everyone have a great weekened. Love ya, Jadon
Wednesday, May 19, 2010
My blood work was normal today. Thank you God for answering our prayers. My blood pressure was also good. I did not have to take my clonazepam today. Yay I'm so excited I'm totally off that medicine. I did have to start taking some medicine for my mouth. I have thrush and it doesn't feel good at all. I was having trouble sucking my nunu the last couple of days but it seems to be better today. I have been sleeping in the bed with mommy, daddy, and Jacob. It is crowded but I'm sleeping much better in the bed. My mommy said I can sleep wherever I want as long as I sleep.lol I put some new pics on my slide show so check them out if you get a chance. I'm still having anywhere from 30-50 spasms a day. This is very disappointing because we really hoped the steroids would help more than that. There is still time and we know that God has a plan. Love ya, Jadon
Monday, May 17, 2010
My baby dedications was great yesterday. Thank you FBC for making it so special for me. After the service I got to go eat with my family. It was lots of fun. I went to my pediatrician today. My blood pressure was good. I will find out the results of my blood work Wednesday. Hopefully my carbon dioxide level will be back to normal. It took them 4 times before they were able to get blood. It was horrible my mommy and I were both crying before it was over with. After that my mommy made me go to PT. I did not want to go at all I was tired. I fussed during therapy but I did show them how I can sit up. They were very proud of me. They said my upper body muscles are getting stronger. I'm still being pretty good for mommy. I just want her to hold me all day. Good thing I have lots of family that love me who can hold me. Guess what today is my Uncle Marks birthday so we are going to eat with him. Happy 21st Birthday Uncle Mark!!! I have PT tomorrow so I will let you know how it goes. I will also update you when I get my blood work back. I am having about 20-30 spasms now. A little less but we need them to go down alot more. Other than that I am hating these shots. I start crying as soon as mom grabs my leg now :( Please pray for me. Love ya, Jadon
Saturday, May 15, 2010
Well good news is I'm handling the steriods a little better this go round. I am starting to have side effects. My checks are getting bigger, I'm hot all the time, and I want to be held. As long as someone is holding me and I am very content. I'm eating more than usually and waking up throughout the night. If I'm having trouble sleeping my mommy lets me sleep on her chest. As long as I'm there I sleep like a sweet baby. It's been one week since I started this medicine so if I can get through one more week we will start decreasing it. It will take over two weeks to get me off of it though. I can't wait I hate getting shots. As soon as my mom grabs my leg I start crying. I know exactly what is fixing to happen. This makes everyone sad. My big brother even crys. He is so sweet and he loves me very much. I am still having about 30-40 spasms a day. We seem to be stuck at that number. We are very thankful that they are not going up but we sure do wish they would go down. Talk to ya later and thanks for praying!!
Thursday, May 13, 2010
So they decreased my medicines yesterday and I can sit today. I'm able to hold myself up for about 15 seconds. Wow!!!!!!! This is huge progress for me. I have only taken two naps today. A 30 minute nap this morning and and hour and a half this afternoon. I am so glad I have more energy. That clonazepam is so hard on my little body and I'm almost off of it. My mommy has been telling them I'm on too much medicine. Well once my bloodwork showed it they finally decreased it. My family is so proud of me. I have had about 30 spasms today so that is less than yesterday. Maybe this steriod will work this time. I sure hope so. Thanks for all your prayers!!!!!
Wednesday, May 12, 2010
Well its been a crazy day. I had to go to my pediatricians to get my blood pressure checked. I tried to do it here but for some reason automatic blood pressure machines do not work on me. Its always to high even at childrens. It's probably because I move to much. Well once I got to my pediatricians my blood pressure was ok, but there was another problem. My blood work was abnormal. Well they sent all my information to my neurologist and she changed my medicines. I am retaining to much carbon dioxide. We think it because I'm sleeping to much due to all the medicine I'm on. We decreased my topamax and my clonazepam. Hopefully this will help me stay awake because I sure am sleeping alot. I'm also having about 40 spasms a day. This is still way to many. Please pray that they will decrease and that my carbon dioxide level will normalize. Thanks for all your prayers. If you get a chance listen to the song thats on my page. The doctors keep telling us we just have to wait and see. We have heard this many many times. So while we wait we will serve Him for we know he has a plan for me. I love you!! Jadon
Monday, May 10, 2010
I am not feeling to good today. I had to start doing my weekly blood work. It took them 3 times before they were able to get a vein. My blood pressure was also a little high. Please pray that it will not increase. I have to get it checked again on Wednesday. I also had therapy today and I did not cooperate. I was worn out from having blood work done. All I wanted to do was sleep so we left early. I'm still having many spasms. They have decreased some. We have been on the go alot today so my mommy hasn't been able to count them. I will give you a better count tomorrow. Please continue to pray for me. I'm smiling less and less each day:(
Saturday, May 8, 2010
Well you would never guess what happened. My ACTH medicine came today. The fed ex man just left it outside. Luckily my Mar came to the house and saw it out there before it got to hot. Crazy fed ex guy must not have read anything on the box or in the notes. Oh well at least we got it and it was the right amount. I got my first injection tonight. I will be on this medicine for the next 5 weeks. I'm also still on my keppra, topamax, and clonazepan. I started zantac too to help with my stomach because this steroid upset your stomach. I'm still having lots of spasms so hopefully they will get better soon. I sure hope so because I'm on alot of medicine. I did get to go take my pictures today before I started the new meds. I did great considering I'm drowsy. I attached a picture of my session today. I'm such a happy baby!!!!
Thursday, May 6, 2010
Well we got my EEG results back finally and it was not good. My EEG is getting worse. I am having lots of problems with the left side of my brain. My background on the left side is getting worse. My sleep spindles are getting worse. My seizure activity is increased. Basically my EEG is taking a reverse effect and going back to where we started. It is not nearly as bad as when I was first diagnosed but my doctors are saying its going in that direction. So now I have to do another round of ACTH injections. My mommy and daddy's hearts are broken. They hate having to give me shots and watch me go through this treatment. I am just miserable when I'm on these steroids. Please pray for my mommy and daddy as they are having a hard time dealing with this. I keep smiling to let them know that its going to be ok. My mommy scheduled my 9 month pictures on Monday. I will not be 9 months until the 25 but we don't want to do pictures when I'm miserable. I will be starting my injections on Tuesday. You will never believe this but my insurance company is giving me trouble again. They were suppose to ship my medicine today but that didn't happen. Mommy was on the phone with them for about an hour and they finally approved it but it was to late to ship it by then . Now they will not be able to ship it until Monday because it has to be delivered within 24 hours because it comes on ice. In the meantime my spasms are getting worse. I am having about 100 a day and each day that goes by they get more intense. Please pray for me as things are not going to be good for me this next month.
Tuesday, May 4, 2010
I'm still having lots of spasms. I am having about 70-100 a day. I wish they would just leave me alone. We did increase my topamax yesterday so hopefully they will decrease over the next couple of days. The spasms are not as intense so that is a good thing. Well I had PT and OT yesterday. I did much better this week. I actually stayed awake for both therapies. I was tired during OT but I managed to get through it. I'm definitely more alert and my eyes are looking less drowsy everyday. My mommy got a phone call from my early steps PT today so I will start that on Thursday. My mommy and daddy are so excited because we have been waiting for about 2 months for that to start. I am very excited to meet my new therapist and very thankful that she has chosen to work with me. Ok well I'll update you later and let you know how my spasms are doing. Please continue to pray for me. Love ya, Jadon
Sunday, May 2, 2010
I am already doing better with my spasms. I have had about 50 today. That is just an estimate because my mommy has been cleaning and washing clothes, so she probably missed some while I was playing on my mat. My mommy and daddy are very excited that they have gone down since yesterday. We weren't expecting to see a change until tomorrow, but we are already seeing a change. Hopefully this medicine will work because we are running out of options. We know that God has a plan so we are putting all our trust in Him. I did get to go eat with PaPa, RaRa, Shannon, and PawPaw(my great grandpa). It was lots of fun. Everybody was saying how much better I look. My eyes do not look as weak because I am on about half of the clonazepam that I was on. I'm so glad they are taking me off that medicine. I have been on it since February and all it does it make me so very tired. Hopefully when I get off of it totally I will be able to build my muscles strength up some more. Please continue to pray for me. I love you all very much!!!
Saturday, May 1, 2010
I am on my way home from the hospital. My seizures are not any better. They let me go since they are not any worse and my vital signs are good. It will take a few days for this medicine to get in my system. My mommy and daddy also have to slowly increase my dose every three days until we see improvement. We are hoping to see some improvement by Monday. I am more active because they are taking me off of my clonazepam. They started decreasing it yesterday and will slowly take me off of it within the next month. Well I can't wait to get home and I will keep you updated on how I am doing. Please pray that these spasms will stop and that my EEG will not get worse. I am so thankful to have all of you praying for me to get all better!!
Sorry I haven't updated you but I have been having a rough couple of days. My spasms have been increasing more and more everyday. My doctors tried increasing my medicines but it did not help at all. In fact my spasms just kept getting worse. I had over 150 spasms today so they had to admit me to the hospital. They started me on a high dose of topamax and we are praying that this helps. My poor little body is so tired from all the medicine and seizures. They just wear me out. On a good note it is 3:00 am and I have more energy than I have had all day. Just look at my picture. I am such a happy little boy. My mommy said she will stay up with me as long as I keep laughing and talking to her. The doctors haven't said to much about my EEG that I had Thursday. All we know is that it didn't look much different than the previous one. The doctor who reads the EEGs is out until next week so we will not get a full report until then. This is very good that it hasn't changed much. This means that the steriods did what they were suppose to do to my brain waves. The bad news is I'm still having way to many seizures and my EEG is showing seizure activity. So now we are just trying to see what medicine will help control these mean seizures. Please pray that we can get these under control quickly because we don't need them to do any more damage to me. I love you and will update you again as soon as possible.