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.
Monday, June 28, 2010
My mommy talked to the pharmacy in Canada today. They are shipping my clobazam tomorrow. It will take it anywhere from 5-10 buisness days. Please pray that we get it quickly. I then have to be on the medicine for a week before we do anything else. My neurologist wants to see if it helps any. Once I have been on it for about a week, I have to go back to childrens for a 24 hour EEG. This will tell us just how many seizures I am having a day as well as what type of seizures I am having. My neurologist seems to think they are all myoclonic but she said it is possible that my infantile spasms are back also. The only way to tell is the EEG. So we basically have to wait and see how this medicine works and then wait for the 24 hour EEG result. They were able to up my topamax some. Once she reviewed it and did some math she saw that there was some room to increase topamax but not keppra. She is taking me off of my clonazepam. Every since I had to start taking it again I have not been able to sit, I'm having trouble holding myself up, and I have less head control. We are almost certain that all of this is a side effect of the clonazepam and not because of the seizures. We will see how I do the next couple of days. Please pray that I get my strength back. A few of my neurotransmitter test came back. Your prayers for fast results are definitely working. She said she has never gotten results back this quick. In fact, the last time she did this test it took 6 weeks. God is awesome. The results that we got back were all normal. We are only waiting on a few more test and she said we should get those back pretty soon since we already got the others. Thanks for your prayers and I will keep you updated on my progress!!!
Sunday, June 27, 2010
Jadon had an ok weekend. Thursday he ended up having about 150-160 seizures. Friday was better he only had about 90. Saturday he about 60 and he has had about 70 today. So as you can see he is still having lots of seizures. Its very sad when you say he only had 60 today. Wow, sometimes we wonder if we will every get these under control. We just have to sit back and know that God is in control. I wish I could tell you that it was easy to just trust Him but you can't help but wonder why. Every since this has started we try not to say words like why and what if but watching your child have this many seizures a day just rips your heart right out of you. I'm not saying this because I want your sympathy. I'm saying this because I'm trying to be truthful. Anyone who really knows me knows that I don't try to get sympathy from others. All I want is your prayers and that is what you are giving me. So thank you very much. Jadon has his appointment tomorrow at 9:30. I will update you as soon as possible. We are hoping they do something for these seizures. We have to get these down. Thank you all so much for surrounding our little man in prayer. We love all of you!!! I'm attaching a few of my friends webpages is you would like to look at them and pray for them. The first one is connorsquestforsight.com This is Jadon's friend Connor who just got back from China. You can read and pray for him by visiting his sight. The next one is ourbeautifulemily.blogspot.com This is Jadon's friend Emily who has IS like him. Emily's mommy has been very nice and very helpful to us. You can visit and pray for her as well by visiting her sight. Well I will update you tomorrow with the info from my neurologist.
Thursday, June 24, 2010
My seizures have doubled today. I have had about 140 so far. So sad. My neurologist said she wants to see me Monday morning. I don't know if we will make it to Monday. If my seizures increase much more we will be going to the hospital. It's very hard to watch me have this many seizures a day. Please pray for my family as they are very sad. Also pray that my brain will be protected from all these seizures. They are still working on getting the new medicine for me. So now the good stuff. We went and watched Shannon dance this morning. I loved it. I watch and talked until I just couldn't hold my eyes open and then I went to sleep. I then went to therapy. I did good considering I am back on clonazepam. I don't have a much control as I did last week but I didn't cry at all during therapy. After therapy we met everyone and went to eat. I got to eat some mashed potatoes. I think I have found my new favorite food. Later today I got to eat my first snowball. I absolutely loved it. Here are a few pics of me enjoying my snowball. As you can see I am still very alert and very responsive. We are so thankful for this!!!!
Wednesday, June 23, 2010
I did great while in the hospital. In fact I slept from 7 pm to 5:30 am. My night nurse was great. She didn't come in and take my vitals because I was sleeping. We had several of the same nurses we have had in the past. They all talked about how much bigger and stronger I have gotten. It was good to see them but not fun to stay in the hospital. We made it home around 4:00 today. My daddy had to drive through that bad weather but we got home safely. I got some of my results from my spinal tap back. Now all we are waiting for is the neurotransmitter test . The other test came back normal. My keppra and topamax levels are also at their max so we can not increase them anymore. They did increase my clonazepam because I am having so many seizures. I had about 90 seizures today and I still haven't gone to bed:( My neurologist is trying to get me a new medicine. It is called clobazam but it is not a US drug. It has to come from Europe or Canada so it may take a few days for it to come in. It is also not covered by insurance. We really don't know how much it is going to be but it doesn't look that bad. Probably about $100 a month. They want to put me on this medication in hopes to decrease my seizures until I get the results of my spinal tap. We are kinda stuck until we get those results. There are several more options that the neurologist discussed with us but we just have to wait. When you pray for me today please pray that we will get the results back quickly. Pray that we will be able to get the new medicine quickly too. Also pray that God will continue to protect my brain during this time. Its so amazing that I am so alert and learning new things will having 90 seizures a day. We also ask that you thank God for the amazing things he is doing for me. I have to call the neurologist tomorrow so I will give you an update on the status of my clobazam as well as a seizure update. I left you a picture of me on my way home today. I am so happy even though I am going through so much. I amaze my mommy and daddy. Thanks again for caring for me, Jadon
Tuesday, June 22, 2010
I was such a good boy today for my procedure. We got stuck in traffic on the way here. I was so ready to get out of my seat but I played with mommy until we got here. We made it just in time. Good thing we left 2 1/2 hours early. Once we got here I was ready to eat but mommy said I couldn't until after my procedure. She walked me around and played with me to help keep my mind off of eating. I finally went to sleep around 11:30 and guess what they did. Came right in and woke me up for blood work. So then I fussed some more and finally went back to sleep. I slept until 1:00 and they finally took me back at 1:45. They were suppose to do the procedure at 12:30. Everything went great but I was crying for my mommy when I woke up. As soon as they went and got her I stopped crying. We then came to the room and I slept for 2 hours. I woke up and wouldn't eat or drink anything. I finally drank 5 ounces of milk about 30 minutes ago. I hope they come take my IV out soon since I'm drinking some. As far as my seizures I've only had about 10 since the procedure. I have been sleeping alot and I don't have them in my sleep. We don't know what they are going to do about my seizures yet. They are checking my keppra and topamax levels so we will see what that says. We will not get the results of the spinal tap for another 2-4 weeks. So we have to do something in the meantime. I will update you sometime tomorrow. Thanks for praying for me!!! Love, Jadon
Monday, June 21, 2010
Tomorrow is my spinal tap at Childrens. They are going to draw fluid from my spine and check to see if my neurotransmitters are communicating correctly as well as two other little test. I don't know how long it will be before we get the results. I'm assuming a few weeks. So please pray for me tonight and tomorrow. Pray that I will do well for my procedure. We will be staying the night at Childrens so I will update you sometime tomorrow afternoon. We have to be there at 10:30 and they are doing my spinal tap at 12:30. Thanks for praying for me!!
Thursday, June 17, 2010
I had OT therapy at North Oaks today. I did so good. I only fussed 1 time. My OT was very impressed at the things I am doing now. She said I have more control over my body. After therapy we went to Nagoya restaurant in Hammond. We ate the hibachi and I just loved it. I was watching the man cook the food and screaming and laughing at him. Mommy gave me some clear soup and I got really excited. The picture is my grin after I ate the soup. It was much better than the baby food mommy was feeding me. After that I took a nap and then had PT at my house. I did wonderful. I have the best PT, OT, and speech therapist. They really care about me alot. After therapy mommy made me get in the pool and do my water therapy. I didn't mind that though I love swimming. As far as my seizures go, I have had several today. Not nearly as many as yesterday but about 50 throughout the day. This is much better than yesterday. My neurologist called to check on me. She said that she is going to keep us overnight Tuesday. She wants to observe my seizures. So we will be staying the night at Children's Hospital Tuesday night. Hopefully we will find some answer. Please continue to pray for me!!
Wednesday, June 16, 2010
I'm having lots of seizures. I woke up during the night 3 times having seizures. When I woke up this morning I had over 40 seizures. So the total was over 50 by 6:30 am. Not good. In fact I almost earned me a trip to the hospital. Luckily they slowed down by lunch so my neurologist said I could stay home but I have to call and update her in the morning. She said to increase my keppra and to start giving me some clonazepam again. Mommy doesn't want to give me that medicine but if it keeps us out the hospital then that's what we will do. If this increase in medicines does not work then I will have to go to the hospital for IV medicines. So lets pray that these work. We really don't want to go to the hospital but I can't continue to have this many seizures. I have had a better afternoon. I've only had a few seizures so that is great. I will have to go back to Childrens on Tuesday. They are going to do some more test on me. They want to check to see if my neurotransmitters are communicating correctly. I will have to be put to sleep for this test but as long as I do ok I will be able to come home Tuesday. So thats what going on with me. Please pray that my seizures decrease tomorrow and that I don't have to go in the hospital. Thanks for your prayers, Jadon
Monday, June 14, 2010
So everything went great today at childrens. I saw my cardiologist and they did an EKG. It came back abnormal so she sent us for an echo. They didn't know if they were going to be able to do it because I am moving so much these days. She said we may have to come another day so they could put me to sleep in order to do the test. Well I proved them wrong. I was such a good boy. I slept through the entire test. Mommy was so proud of me. She didn't want me to have to go through all of that. Well after the echo the cardiologist came back in and said everything was great. She said sometimes the measurements are abnormal on the EKG but once they do the echo and measure everything is fine. Its just hard for the EKG to meausre the chambers correctly on infants. So that is great news. We do not have to see the cardiologist again. Thank you God!!! So on to my neurologist. I talked to her this morning and she increased my topamax. She wants to see if that will help control my seizures better. I will let you know in a day or two how I am doing. I did not have a good day as far as my seizures go. Still having lots and lots of them.
Sunday, June 13, 2010
I wish I could post better news but this is what is going on. My seizures continue to increase each day. I have them everytime I wake up now. This is about 4 to 5 clusters of 20 or more twitches. This does not include the ones I'm having at night. This morning I woke up at 8:00 and didn't stop having seizures until 9:30. This is very scary for my family to watch. I do continue to be very alert and very happy. I'm not sleeping again. I have been up the last two nights for about an hour or two at a time. You see I always wake up at night for my nunu. Usually mommy just gives it to me and I fall back asleep but now I'm having seizures and can't settle back down. My mom is calling my neurologist tomorrow so we will update you and let you know what she says. I also have my cardiologist appointment tomorrow. It's not until 2:30 so I will update you as soon as I can. You know I always like to leave you with good news so here it is. My mom has been letting me swim every afternoon. We wait until about 5:30 when there is shade on the pool. I absolutely love it. I get excited when mom puts on my ring because I know what is coming. Since I have been doing the water therapy I am rolling over like crazy. Mom says this therapy is better than any therapy she is paying for...lol
Friday, June 11, 2010
I got my EEG results back today. It wasn't as good as expected. The movements my mommy has been seeing is seizures. Its just a different kind of seizure. Moms always know when something isn't right. My EEG did not show any infantile spasms and thats what my neurologist was looking for. When the neurologist that reads the EEGs read mine she saw seizure activity. I am having myoclonic seizures now. So this is my new diagnosis. We really don't know alot about it as we just found out today. I will update when I have more information. The good news about my EEG was that my background was normal. That is great because my background had started to slow. Thats why I had to do another round of ACTH. Other than that we are just trying to deal with more seizures. I have had 3 cluster of about 20 movements today. This is an increase in my seizures but my mom really doesn't know how to count them. Did I have 3 seizures or 60? Big difference I will find out Monday when I talk to my neurologist again. Hopefully it was only 3. Please pray for me and my family as we really don't know what to think of all this. We know that God has a plan for me and we are just trying to trust Him.
Tuesday, June 8, 2010
Ok so this is not official news, but my neurologist looked at my EEG and it is better. We will get the official results in the next 2 days. She said she did not see any seizure activity during my test. I was having what my mommy thought was spasms but she did not see any seizure activity while I was doing this. She said it is me trying to pull myself up. Can you believe that? Its very hard to tell what is seizure and what is not. That's why we have done so many EEGs. My mommy and daddy are so excited but they don't want to get their hopes up yet. Please pray that the other neurologist doesn't see any seizure activity. I am still having about 5-10 head drop seizures or what we think are head drop seizures. This is where my head drops and I lose control of my body muscles. My neurologist said that is fine. If they increase or if my spasms come back we are going to do a 24 hour EEG to see what is going on in my brain. During my EEG today my heart rate was really fast. It was about 145-160 while I was sleeping. They sent me up to cardiology where they did an EKG. The EKG came back abnormal so we have to go see a cardiologist next Monday at Childrens. My doctor said that this is nothing to really worry about. They see this abnorality in infants all the time. They just want to check it out and make sure that everything is ok. I have a virus and thats probably why my heart rate is up. We really love Children's Hospital in New Orleans. They do everything for me to make sure that I am ok. We are very fortunate to be so close to a good hospital. My neurologist was a little concerned about my appetite. I am not eating or drinking like I am suppose to. In fact I have lost 1 pound in just 10 days. This is a side effect of the topamax. We are hoping that I start eating more because we do not want to decrease my topamax. I am doing to good on this dose of medicine with the seizures. She also said that me not sleeping at night is just from the ACTH. We are hoping that I start sleeping better within the next two weeks. If not she will put me on some medicine to help me sleep. As far as scratching my head, its just me trying to soothe myself. So now we need your prayers. We need you to pray that my seizures stay away and not increase. We also need you to pray that I continue to develop. I have come so far in the past 3 months. Yes I am still delayed but I am making tremendous progress. Just this week I starting saying Ma. No its not momma but hey its a start and its babbling :) Thank you all so much for caring about me and I will let you know the official results when we receive them. I left a picture of me during my EEG today. I am such a good boy during my test as long as my mommy is holding me. Just look how sweet I am being :)
Monday, June 7, 2010
Nothing much has changed in the last couple of days. I am still not eating very much and not sleeping. I wake up several times throughout the night and am up for 2-3 hours at a time during the night. I just scratch at my head like something is bothering me. My mommy is going to talk to my neurologist tomorrow and see what she thinks. My mommy thinks my seizures are keeping me from sleeping. I hope they find out soon so I can get some rest. I lay there with my eyes closed but fuss and move around. I do have a rash all over my body and an eye infection. I had to have blood work done to make sure it wasn't bacterial. Thank goodness it wasn't. My white blood count is down so I do have some kind of virus. It should go away in a few days. As for my eye my pediatrician gave me a prescription for some medicine to put in it. On a happy note, I did go swimming yesterday and guess what I loved it. The last two times I went I screamed. This time my mommy got in there with me and I was so relaxed and so happy. I posted a few pics for you to see. My big day is tomorrow. I have to be at childrens for 8:30 for my EEG and then I see my doctor at 10:00. I will update you as soon as possible. Don't forget to say an extra prayer for me. Love you all very much!!!! Jadon
Thursday, June 3, 2010
Well I got my last shot of ACTH yesterday. I am so excited that I do not have to get anymore of those shots. I am still having spasms. They are not that intense. In fact, they are very hard for my mommy to count. I am having about 10 more intense ones a day. We will see how I do with the spasms within the next 2 weeks. Hopefully they will not not get more intense. I am having trouble eating, sleeping, and drinking. I can't sleep more than 3 hours at a time. I usually go to be around 9:30 and I am awake by 12:30. I stay awake until 3:00-3:30 go back to sleep and am up by 6:00. I take a few little 30 minute naps during the day and then a 2 hour nap in the afternoon. I sure hope I start sleeping better soon. My mommy needs some sleep. She has been bringing me to my Mar's house in the morning so she can sleep some. I'm also only taking about 10 ounces of milk a day and I will not eat my baby food. My mommy is hoping I don't get dehydrated. I did this last time I was coming off the ACTH but not this bad. Well I have OT today at North Oaks and then my last blood pressure check tomorrow. My EEG is Tuesday so we are anxiously awaiting for that to see what we are going to do next. I am still smiling and getting stronger everyday. I'm even using my right hand to grab things:) I got my new shoes and they give me more support. I can even stand up in mommies lap. I will keep you updated on my progress. Please pray for me!!! Jadon
Tuesday, June 1, 2010
Several people have been asking if I have a donation fund. Well my mommy finally got one for me. It's called Jadon Pailet Benefit Fund. You can donate through my webpage or you can donate at Regions bank. I will use this money to help pay my medical bills, medicines, and equipment that I need. I will also use it to help pay for my private therapies and the things I need for therapy. A few examples are shoes to help my feet stay straight, tools to help stimulate my nerve endings, a chair to sit in, etc. Please do not feel like you have to donate just wanted to put it on here for those who have been asking. The thing we want more than anything is your prayers and that is the main purpose for this site. We know that God will provide for our family. Some people have been asking about fundraisers too. We have a few fundraiser in the making. I will let you know details later. Thank you all very much for caring about me. I love you, Jadon