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.

Wednesday, February 22, 2012

2 years ago our lives changed forever.

Today makes 2 years since I was diagnosed with Infantile Spasms. I can not believe its been that long. I'm so excited that today after my 2 year fight, I can say I'm no longer having seizures. My mommy and daddy say I'm the strongest little boy they know. I don't know how to give up. I fought around 200 seizures a day for almost 2 years before they stopped. Doctors were amazed at how well I was doing. God has been right by my side the entire time. When I wasn't strong enough he carried me. His arms have been around me and comforting me through this all. I would not be able to be so strong if it wasn't for God's loving arms around me and my family. I'm so thankful to have a family that has fought for me and trusted in God's plan. If they would have given up at any moment we would not be where we are today. So today we are crying tears of joy and shouting our praises to the Lord who has taken these seizures away. I'm leaving a timeline of pictures and major events that have happened to me the last 2 years if anyone is interested. This timeline is only a small piece of what we have been through. As I was creating this and looking back through everything we have been through I honestly do not know how we made it through everything. All I can say is God has carried us through the tough times and continues to guide us on my journey!!! My mommy and daddy realize how blessed they are to have me. They say not everyone gets to witness a miracle from God like the one we have witnessed. I have taught them so much about life. They say they are both better people because of me. My smile will make the problems you think you have go away. If I could pass anything on to my readers, I hope that it is love. I hope that you have become a better person and realized what is important in life. I hope that you have grown closer to God by seeing my strength and what He has done in my life. My journey and my struggles are not over but I can't wait to see what God is going to do next. I love each and everyone of you!!
August 25, 2009- I was born. I had to go the NICU for oxygen for a day but I went home a healthy 8lb 12oz baby.
November 25, 2009- My 3 month picture. So strong and meeting all my developmental milestones. In fact I rolled over at only 5 weeks old.
December 2009- I had RSV and was in the hospital with my brother for 5 days. This was on the way home from the hospital. This was the first time I was in the hospital with my brother.
January 2010- We started noticing these movements I was making. Little did we know our world world was fixing to be turned upside down. I was still such a happy baby. It didn't look like anything was wrong at all.
February 24, 2010- I was diagnosed with IS just before I turned 6 months old. Our world was changed forever that day. My mommy told me she would do everything possible to help me get better. She also said that her and daddy would stand by me and help me through every step of my journey. This picture was taking the day after my diagnosis and I'm still smiling even though my development had stopped.
February 28, 2010- I was put on klonopin on my diagnosis day. It made me so tired and weak. I couldn't even hold my head up.
March 2010 - I was put on prednisolone for a few weeks. It was not helping any. They increased my dose but it still did not help. My insurance finally approved my ACTH medication and I started ACTH. I went 2 days with no seizures but they started back. My EEG did clear up. The medicine made me swell so much. Again I still remained happy and smiling.
April 2010- I was put on another round of ACTH because my IS was coming back and my EEG was looking worse. I didn't swell as much this round and this round cleared up my hypsarrhythmia. Once the hypsarrhythmia was gone I started to develop again even though it was very slowly.
May 2010- I was put back in the hospital to try more medication. I did learn to sit this month at 8 months old.
Summer 2010- That summer brought many hospital stays and many medication changes. We did get to go to the beach for about 2 days. It was about 2 hours away because we didn't want to be to far away from our hospital. Mommy and daddy started researching other places in desperation to get some help for me. We decided to go to Boston but we couldn't get an appointment until September.
August 25, 2010- I turned 1 and was doing pretty well developmentally considering what I was going through. I could sit up by myself. I was making some babbling noises. I could say dada. I could play with my toys. I could use my fingers to eat. I was crossing midline. I could stand if someone was holding my hands. I was very attentative and loved to smile at others.
September 2010- My brother and I got sick and were put in the hospital. This was the second time that we were both in the hospital. The hospital was great and let us stay in the same room with mommy.
October 2010- We visited Boston for the first time. They did lots of test and we still didn't have any answers. They gave us more treatment options to try and said to come back in a year. We started Banzel which was the only medicine that helped my seizures for any amount of time.
November 2010- I started the keto diet. That same month my grandmother died. I know she has been watching over me ever since.
December 2010- I was having lots of problems with the keto diet so we went back to Boston to see their specialist. We made some changes and my seizures continued to get worse so we stopped the diet. They told me to come back in June to repeat my MRI because it was showing slowed development. We also went to Houston to see an herbologist to see if she could help. We visited Santa while we were there.
January to May 2011- We made lots of medicine changes to try to stop my seizures. I was in and out of the hospital. I got sick and was put on steroids. My seizures got better but they didn't stop. We decided to do IV steroids to try to stop my seizures but it didn't help at all. Through it all I'm still smiling.
June 2011- We went back to Boston to repeat my MRI. They said that my left side was developing slower than my right and to come back in August to repeat all my test. Especially because we were seeing right sided weakness and the seizures were making the right side of my body move. This was the appointment that we were told that surgery would be my only option but they didn't know if I would qualify.
July 2011- My family collected money and gave me an ipad. It has been the best therapy tool. I have learned so much from it. I will never be able to thank them enough for giving this to me.
August 2011- We went back to Boston again. They repeated all the testing but said I was not a surgical candidate. Our neurologist in Boston referred us to Detroit children's to see a specialist there. My mommy already new the doctors name because you know my mommy researches everything. The neurologist in Boston said that if anyone could help me it would be this doctor. I will always be thankful for this neurologist in Boston who was not afraid to send me somewhere else.
September 2011- We met the doctor that saved me from these seizure. We loved him from the start. He knew that the left side of my brain had 4 spots that were not working. He wanted us to try one more medication before he did surgery on me. My mommy and daddy were shocked. Could this be true. Can this doctor actually give us the answer we had been looking for for so long? We were scared to death of surgery but excited to have some hope to stop these seizures.
October 2011- We started the medicine but it didn't stop my seizures. It did help a little but the seizures slowly came back. We contacted our neurologist in Detroit to set me surgery date. It was a very sad month as we new what we were fixing to have to face.
November 2011- We went back to Detroit to meet my neurosurgeon and to update my MRI. We didn't have to but mommy said no surgeon is cutting into my head before she gets a chance to meet him and ask some questions. Turns out she didn't have to ask any questions, the surgeon answered them all when he explained the procedure. This made my mommy feel much better about my surgery. This same month I had an allergic reaction to lamictal. Seizure medicines are so hard on your body. Not only did I have an allergic reaction to lamictal but we also found out that I'm allergic to ants. See the last picture under this post. Wow what a crazy and busy month.
December 2011- We enjoyed family time. We made the most of every moment and spent alot of time on our knees praying.
January 2012- I had my surgery that relieved me from these seizures. We had to remove more than what we wanted but God had a plan and we followed. This surgery has turned out to be my miracle. Yes it was the scariest thing we have ever had to go through but I'm strong and with the help of God I have beaten the seizure monster.
A big thanks goes to my brother Jacob. This has been very tough on him. Its something a four year old shouldn't have to see but he has been there for me through it all. I love you so much Jacob!!!! This is me today February 24, 2012. Just look how happy I am :) I have come so far in the last 2 years. Thank you all so much for your prayers. Please continue to pray because I still have a long way to go.

Saturday, February 18, 2012

Another amazing update!!!!

I didn't have my EEG done Thursday. We emailed my doctor in Detroit and he said the sedated EEG would not give him the information he needed so my mommy canceled my appointment. We didn't want to do more testing than necessary. We will now wait and get my EEG done when I'm in Detroit. I know that's a few weeks away but I would rather wait than be poked for IVs again. I have made amazing progress the last couple of days. I'm learning to crawl again. I'm starting to do it on my own some but my mommy has to make me most of the time. I'm climbing up on the couch. I'm also walking along the couch while holding on to it. I can also pick up a ball using both hands and then throw it with both my hands. The new words continue daily. I learned to say Mickey when I want to watch T.V. Yesterday I said french fry. Just this morning mommy was calling my puppy Jet and I said Jet. My mommy and daddy can tell me to do something or get something and I do it. I can understand much better than before surgery. I'm saying several animal sounds. You have to say them first but then I say them after you. I can also point to my head, eyes, nose, ears, mouth, tongue, belly and toes. I do get confused at times but I can do it. I'm clapping my hands. Yes you can see that right sided weakness in everything I do but the important thing is I'm doing it even it if isn't a good as it was before. I'm getting there and doing amazingly well. My neurologist in Detroit is very pleased with my progress. Do you know what all this progress means? It means I'm doing everything I was doing before surgery except walking with my walker. I can stand in my walker but I can't hold on with that right hand. That's the only reason I'm not doing this skill. Wow, Amazing, Unbelievable, etc. Thank you, thank you, thank you GOD!!!! I will update you next week. Next Saturday will make 2 years since I was diagnosed with IS. It's been a rough 2 years but with the help of GOD look how far we have come in my journey. I'm leaving you a picture of me standing against the wall. Look how tall and strong I'm getting :)

Wednesday, February 15, 2012

Brain study results

I've been doing great the last couple of days. I'm still saying new words daily. The three main news ones are bubble, pop, and cat. I'm also using that right arm more and more each day. My mommy finally captured the movements that I do at night on video. She emailed it to my neurologist in Detroit around 5:30 am after she recorded them. He emailed us back within an hour to let us know that it was not seizures. How awesome is he? He said one of his children made these same movements at night. We didn't think it was seizures but it feels good to know for sure now. I have my EEG tomorrow at 12 noon so please pray that it is normal for someone with only half a brain. We did get some new results this week. My mommy and daddy decided to donate the half of my brain that they removed to epilepsy research. That way they would study to see if they could find a definite reason for why I had these seizures. They also did it to try and help others with epilepsy. The results were not what we expected at all. We knew from my PET scan that there were 4 big places that were not working on my left side of my brain. We assumed it was some kind of cortical dysplasia. Well it was not. In fact, my brain was formed perfectly fine. There was no malformation at all. What the study did find was scar tissue throughout my left side of my brain. This scar tissue was causing short circulation in my brain which was causing the seizures. That is why no medication helped me. So how did the scar tissue get there. We are not 100% sure. We do know that at some point I developed a brain infection. This infection caused my brain to swell. When the swelling went down it left all this scar tissue. The neurologist said it could have happened when I was still in my mommies tummy or sometime once I was born. There is no way to ever know. He said we were very fortunate that it only affected my left side. He said there may be some scar tissue on my right but he said it's really great news that I'm developing so well. He also said that we were fortunate that the infection came and went and didn't do any more damage. We are thanking God for taking care of me when I had this infection. My mommy and daddy are feeling guilty right now. They know there is nothing they could have done to prevent this but that guilt is there. All of my problems are due to an infection. You can't help but wonder if you could have done something different to prevent it. The good news is all the scar tissue has been removed and I'm not having seizures anymore. We have SO MUCH to be thankful for today. Please continue to pray for me and I will let you know the results of my EEG when I find something out. Love ya, Jadon

Friday, February 10, 2012

Celebrating 1 month of seizure freedom :)

It was exactly one month ago today that I had my last seizure. My mom and dad were kissing me goodbye so I could go back to the OR. Its something that we will never forget. In fact, the seizures that I had from January 5 to January 10 were so bad and so hard. Its a fear that you just can't forget. Today I'm celebrating one month of seizure freedom. Please take a minute and thank God for what He has done. It's been the best month of my life. I don't have to have seizures when I hear a loud noise or when I'm going to sleep and waking up. I don't have seizures when I get scared or overstimulated. I'm not having them when I'm running a high fever. I'm sleeping the entire night now. My mommy really doesn't know how to act. She keeps waking up and making sure I'm breathing. I'm ok the seizures just are not waking me up. We don't have to worry about me hitting my head due to seizures. We are still trying to get use to the new normal of 0 seizures. I will tell you that every sudden move I make we are watching and wondering. It's been so long we don't know what is normal and what is not. I do know that my eyes are not rolling back and my eyes always rolled back with my seizures. It's still a fear that we live with. Everytime we feel this fear we just pray and God says its ok, l'm taking care of you. Since I'm not having seizures I have progressed more than we ever thought I would. It took us 2 years to get me to say 10 words. Now I'm saying over 20 and attempting to say more than that in just 1 month. We did a speech test on me and I'm only about 8 months behind in speech. Its really amazing. I'm still very behind with motor skills. Right now we are trying to get me back to where I was before surgery. Though I'm still behind we are amazed at my progress. I can move my right arm without hesitation. I love giving high fives with my right hand. I'm also starting to move my fingers a little. This is a skill we thought I may never do and if I did it would take a long time for me to do it. Well I'm doing it in 4 weeks. I also started scooting around on my belly. I have to use my right arm to pull my body and I'm doing it. Last night my mommy and daddy were trying to get me to do the touchdown sign. Well I pulled my right arm up as high as my ear. My mommy and daddy were totally amazed. It's so great to get to see me progress. This entire process has really been our miracle nightmare. It's been the hardest thing we have every had to do. My mommy and daddy have had to make decisions that no parent should ever have to make but the reward that we have today is so amazing that I can't even begin to describe it. I know that God has been with me this entire time and I'm so thankful for what He has done. I thank Him everyday for helping me. Thank you to all my prayer warrior, you have been a big part in my progress. Next week is a big week for me. We will see how my EEG looks. So please pray that it is normal. Oh and I got my dates for Detroit. I will be traveling back March 11-14 for my follow up appointments. I have a CT scan and an appointment with my neurosurgeon on the 12 and then a 2 hour EEG and appointment with my neurologist on the 13. Please continue to pray for me as I still have a long way to go. Love you all, Jadon

Wednesday, February 8, 2012

The question everyone keeps asking and my hospital results.

So we made it home from the hospital. My second set of blood cultures came back negative. They really do not know why I was so sick. They do know the antibiotics knocked it out. They contacted infectious diesease and they decided I probably had some kind of blood infection. We spoke with my neurosurgeon and he said that this happens sometimes after surgery. The reason I got so sick was because I picked up adno virus along with the infection. So after lots of sticks, lots of test, and lots of antibiotic I am better. They sent me home on two very strong antibiotics. We did have a scare when we got home. I started vomitting. They wanted my mommy to bring me back in for IV zofran but she said no way. She gave me oral zofran that she had left over from my surgery. After 4 doses I was finally able to hold my meds down. I am just picking up every little thing. They said I must have caught a stomach bug while in the hospital. We are praying that I stay well and out of hospitals for a very long time. The great news is I still have not had a single seizure through all of this. My neurologist said this is great news for me. I have made it 4 weeks with no seizures. Again, its totally amazing. My life is so much better. I continue to make huge progress. My speech is my biggest gain so far. My speech therapist came yesterday and could not believe what I was doing. She said she had been working on all of these things and I wouldn't do any of it. Well yesterday, I did every sound she asked. I said almost every word and if I couldn't say it I sure did try. My therapist said I'm doing so well with speech that we do not need to do sign language any more. I need to use my words to speak. WOW, WOW, WOW!!!!! That is so exciting. It took us over 2 years to get me to say 10 words and now I'm saying over 20 in just 4 weeks. Our God is so awesome!!!
I'm going to try to answer the number 1 question I get asked. What do they think my outcome is going to be since I had the surgery? Well in order to answer I have to go back to a month ago. At the time I just couldn't tell anyone, it hit me way to hard. Once they got the leads placed on my head and saw just how many seizures I was having we got horrible news. The doctors told us that my seizures were continuing to get worse. They said there are no other medication to try. We had tried everything. They told us that children who have that many seizures and continue to get worse usually don't make it past 10 years old. Talk about scare you to death. With that said we really didn't have much of a choice but to do the surgery. My family wanted to give me my last chance at getting better. We knew God had sent us to Detroit for a reason and I think everyone who has been keeping up with me knows that this was all God's doing. So to answer the question. It looks very great for me. They said I will learn to walk, to talk, to interact with people, I will be able to learn, my cognitive skills will increase, and I will live much longer than 10 years. They do not know how much damage these seizure did to me the first two years of my life but it looks very promising that it didn't damage my right side. The doctor told us that we just have to hope that the right side doesn't come back to haunt us. He did say that he did not think that it would but we need to keep a close watch on it. My family believes that God has healed me and that I'm going to be just fine. So I hope that kinda answers the question. We really don't know the entire long time results but we do know that I will have a much better life now that the seizures are not getting in the way. I have my first post surgery EEG on February the 16th so please beginning praying that it will be normal. Please continue to pray for me. I'm so blessed to have so many prayer warriors :) I'm leaving you a picture so you can see how great and happy I look :) Love ya, Jadon

Friday, February 3, 2012

:( In the hospital yet again.

I just can't seem to stay out of hospitals. We got a call from children's Thursday saying that my blood cultures were positive and we needed to come back to the ER. Well it has been horrible since we got here. They ordered a spinal tap to test for meningitis. They had to poke me three times before they got me. They then had to start an IV. I have been poked 11 times in the last 3 days due to IV issues. My mommy said her heart is just breaking for me. We were hoping to stay out of hospitals for a long time but oh well. The only good thing about this is I'm not having any seizures. Praise God. So now to the culture results. We still do not really know what is wrong. We have to let the cultures grow another day. They thought that they may have just been contaminated because the bacteria that is growing usually is a skin bacteria but it can get into the blood. The reason they think it is in my blood is because I'm much better today from the antibiotics. My fever has not gotten above 100.8 which is a huge difference compared to 104 yesterday. They did say that it is not meningitis. Thank you God. That scared us really badly last night that they had to test for that. The plan now is to continue IV antibiotics until we get the results of tomorrow's cultures. They will then decide how long I will have to stay here. It could be up to 10 days so please pray that it will not be that long and that we will get great rest results back. Also pray that my fever doesn't spike. If it does they will have to get more doctors involved and more test. Thanks for praying for me its means so much to my family. I will beat this and get better!!
Love, Jadon

Thursday, February 2, 2012

23 Days and Two Little Words

I started saying love you. I sound so sweet when I say it. This brings so much happiness to my family. At one point it was two little words that they thought they may never hear. Well I finally said it and they said it was worth every minute they had to wait. Today we celebrate day 23 of no seizures :) Wow, it's so amazing. I can go to sleep without the seizure monster attacking me. I can wake up and not have any seizures. I'm still trying to get used to this. We have always had to be so careful with my 200 a day seizures and now it's none. Thank you so much God for guiding my parents to the right place to help me. You are an awesome God. I love being able to play and not hit my head on things due to a seizure. Now the not so good thing. I had to go to children's hospital yesterday. My blood work showed my hemoglobin was low and a few other things high so we had to go for a CT scan. It was awful. It took them four times to get an IV. I was scared to death during the CT scan. My mommy sang to me which helped me calm down some. Thankfully the CT was fine. No fluid build up and no infection. Praise God for that. I am feeling a little better today but not much. I'm just so sick and weak. Though I'm sick I continue to make progress. I'm such a warrior. I keep on fighting. I'm also not having seizures which is amazing because my seizures were always horrible when I was sick. Hopefully I'll get to feeling better soon. The has just been awful. Please continue to pray for me and that I will feel better soon. Also pray for my online friends. I have alot who are in the hospital. Some have started having new seizures and some are having increased seizures. I really wish we could find a way to stop their seizures too. My heart goes out to them. Oh and I haven't forgotten about the videos. My computer is broke and I can't upload them from my phone. Love ya, Jadon

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