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.

Saturday, July 31, 2010

New medicine=No sleep :(

Well I don't know if it was the new medicine or if I just had a bad night but I did not sleep last night. I have only had 1 dose of the medicine so I'm not convinced it is the medicine yet. I sure hope it isn't because my mommy goes back to work in 1 week plus I need my sleep. The new medicine I'm taking is trileptal. My mom had a hard time finding a pharmacy that had this medicine. Our local pharmacy didn't have it and couldn't get it until Monday. Well I can't wait until Monday because I have a neurologist appointment and the whole point of her starting me on it on Friday was so she could see how I'm doing Monday. Well we finally found it at a pharmacy at Independence. Mommy has 2 friends that are the pharmacist at this pharmacy so she did enjoy getting to see them. It's still too early to tell if the medicine is working. In fact I'm on a small dose for 5 days and then we double the dose. It will be about a week before we know if it is working or not. We do have a few fundraiser that my friends are working on for me. As soon as I have the details I will let you know. The 1st one is going to be next weekend at the snowball stand. It's going to be a blast. I'm so thankful that I have people that want to help me get to Boston. Well I'm off to Hammond today with mommy, Jacob, and Mar to go shopping. Can't you tell I'm just estatic...lol I hope everyone has a great weekend and I will update you after my neurologist appointment on Monday. Please pray that it goes well!!!

Thursday, July 29, 2010

Back Home!!!

We made it back home shortly after lunch this afternoon. I had so much fun on our short little get away. I even learned to do some new tricks. I sat in a high chair for the first time ever. I'm also putting weight on my feet. I have also mastered sitting. All mommy has to do is put me on the ground and she can walk away and not have to worry about me falling. My mommy says I just keep amazing her everyday. I'm doing so many new things each day. I am so much stronger than I was just a week ago. Our God is totally awesome and is doing so many good things in me. Thank you so much for praying for me. I believe that the only reason I'm progressing so well is because I have so many people praying for me so please please keep praying. I wish everyone could see me and see how well I'm doing. My friends that haven't seen me in a couple of weeks are in total amazement at my progress. I left a few new pics of my new tricks. I will add the beach pics to my slideshow sometime tomorrow. Thanks again for praying and I love you all, Jadon

Wednesday, July 28, 2010

Quick beach update!!!

I'm having a blast at the beach. We went early this morning so it wouldn't be so hot. I played in the sand and took a nap on my mommy. Later today we are going swimming in the hotel pool. Then its putt putt golf tonight. As far as my seizure, I'm still having about the same. We have not seen any increase. So that is wonderful. I'm leaving you a few pictures from this morning. I'll upload more when I get home.

Tuesday, July 27, 2010

Bye bye we are off to the beach!!!

We are off to the beach for some much needed relaxing with family. We are leaving when my daddy gets off work today. We will be in Biloxi until Thursday. We don't want to go too far and mommy found a room for real cheap at the palace. My big brother Jacob is so excited. He has never been to the beach before either. It's going to be so much fun. I will try to post some pictures one day while we are there. Please pray that I will do ok with my seizures while gone. This is the first trip we have taken since I got sick. I left a video of me waving bye bye. I just started doing this yesterday. I'm getting so smart :)

Monday, July 26, 2010

Neurologist Report and Look What I can Do!!!

I first want to tell you my good news. Yesterday I started sitting up. I would sit while playing with a toy for about 1 minute. Today when my therapist came, I sat up for 4 whole minutes all by myself while playing with toys. My therapist was amazed at what I'm doing. I'm also putting some weight on my arms. Only about 3 seconds with my right hand but longer with my left. My new therapy mat is definitely working. I left you a picture of me sitting up like a big boy. You can see how proud I am. Now on to my neurologist report. My neurologist called this morning. She was out on vacation last week so she just saw all my results this morning. She said that since the EEG showed that all of my seizures are coming from one area she feels like I am having focal seizures. This means all my myoclonus seizures are coming from one spot. This makes her believe that there is something abnormal with the left side of my brain its just to small to see on MRI. So she is not going to start me on banzel. She wants to start me on trileptal. Trileptal is a seizure medication used to treat focal seizures. We will not start it for a week. She wants to decrease my clobazam and give it a week to make sure my seizures don't increase. Once I'm on a full dose of trileptal we will begin to wean me off of keppra. So I have lots of medicine changes coming up. Please pray that I will have a good transition of medication. Also pray that these changes will control my seizures. I will update you and let you know how I'm doing. Love ya, Jadon

Sunday, July 25, 2010

11 months old

I'm 11 months old today. I can't believe that I am already 11 months old. Only 1 more month until my farm birthday party. I can't wait:) Time is surely going by very fast. I've been fighting seizures for 5 months now. We have come a long way but we hoped they would have stopped by now. Maybe one day soon. We must be patient and know that God is in control. The older I get the more obvious it is that I'm developmentally delayed. I'm still having trouble sitting for more than 10 seconds, I can't put weight on my feet, and I can only say the g,m,and vowel sounds. Even though it gets harder as I get older my mommy and daddy are very thankful for how far I have come. I'm very alert,determined, and happy. I can grab objects and blow bubbles with my mouth. I'm doing so good considering all that I am going through. All it takes is one smile from me and I can just make any ones day better. Thank you God for everything you have done for me. I'm leaving a picture of me on my new therapy toy. I was suppose to get it for my birthday but mommy didn't want to wait. She found it online and knew it would be perfect to help build my arm strength. I have already figured out how to go in a complete circle. The mat also has different textures. It crinkles and honks when you press Pooh's nose. I love it!! If anyone is looking for one wal mart has them for only $30. If anyone has any other interesting therapy toys let me know. I hate therapy so my mommy and my therapist try to be creative so I can enjoy it :)

Happy 11 month old day my sweet little boy. Mommy and daddy love you so very much!!!!

Thursday, July 22, 2010

We are going to Boston.

I've been doing great since I got home. In fact I slept all night long last night. Mommy let me sleep next to her and I slept so good. I went to sleep at 9:00 and didn't wake up until 7:00 this morning. This is the first time I've done this in a long time. Usually the seizures wake me up and I can't sleep. Mommy said I can sleep by her every night if I sleep all night. Mommy and Daddy have been looking at many epilepsy specialist. We finally made our decision and mommy made an appointment for me to go to Boston Childrens Hospital. Boston is the #1 pediatric neurology hospital in the world. We will be seeing the head neurologist who also specializies in epilepsy. So I will be going with my mommy and daddy to Boston on September 29. We are hoping we can get some answers. We have to send all of my testing that has been done in New Orleans. I want to say that we love Children's in New Orleans. They have gone out of their way to help us. We just want another opinion. We want the best outcome and I think any good mommy and daddy would want to do everything possible to help their child. So thats what is going on with me. I will keep you all updated. Please continue to pray for me as I fight to overcome epilepsy. I also added the share buttons to each post. You are more than welcome to share my story. The more prayers the better :)

Tuesday, July 20, 2010

I'm going home:)

I am on my way home from Children's. Today was a very stressful day but I'm happy now that I'm out of that hospital room. They unhooked me from the VEEG around 9:30. I hated having that cap and leads on my head. When they first hooked me up they said I would probably forget about it. Well I surely didn't forget about it. I scratched and pulled at it until they took it off. I was happy when they finally took it off but I screamed the entire time she took them off. I still have glue in my hair. My mommy washed it for me this afternoon and its almost all gone. They were suppose to come get me for my MRI between 10-11. Well it was 12:00 before we went down to MRI and 12:30 before they took me back. Yes I was starving but mommy and daddy played with me and entertained me. My mommy and daddy were not real happy with this because I could have eaten at 6:30 instead of 4:00am big difference. I did much better coming off the anesthetic this time. I didn't cry and started eating and drinking right away. So now for the results. My MRI is perfectly normal. They can not find anything abnormal. My EEG is showing that all my seizures are coming from the back left of my brain. So we do know there is some type of abnorality with the left side of my brain. It's just not showing up on MRI. As my brain develops we may be able to see it in the future or we may never see it. For some reason my neurons are not communicating correctly on that side of my brain causing some background slowing. The good news is I'm only having one type of seizure and that is myoclonics. These seizures are not causing any damage to the other parts of my brain. In fact the right side of my brain is perfect in every way. I'm also not having as many seizures as we thought. Probably around 40-60 a day. The EEG proved that some of my head dropping is not seizures its just me losing control for a moment. This is all great news. So what do we do next? I have to stay on the clobazam until next week. We are then looking at starting banzel. So we basically have to try another medication. In the meantime we are looking at seeing an epilespy specialist to see if they can find something. We are very grateful for the results we got today, but we are still left with what is causing these seizures and how do we fix it. Oh how we long for the day we can say I'm seizure free. I left you a picture of me smiling and being good for my mommy and daddy :)

Monday, July 19, 2010

Hospital Update

Daddy gave mommy a computer so now I can keep you updated. No need to have to mess with trying to update from the phone:) So we got here at 8:30 this morning. It was so nice to not have to drive over 2 hours to get here. Thank you Aunt Rachael and Uncle Michael for letting us stay at your house. They took us right back and started hooking me up. I did really good until about half way through. Then I had just had enough and I started screaming. It took them much longer to hook me up than the previous EEG. Since this is a 24 hour Video EEG they had to glue the leads down and then use a blowdryer to dry them. Well I will just tell you this made me mad. Once I was all ready we walked to our room. I loved walking in the halls and I was talking and smiling at everyone that passed. Once we got to the room I took a nap. Ever since then there have been lots of people in and out. I do like all the attention:) The nurses just love me and I laugh and talk to them. I definitely am showing them what I can do with my seizures. I have had plenty and I mean plenty.And yes everything is on video including everything we say. Kinda crazy to know your being videod 24/7 but we have gotten used to it. The neurologist will be here in the morning to give us some results. My MRI is scheduled for 11:00 in the morning. I don't know if we will get those results before we go home are not. We will find out tomorrow. Either way we should get to come home sometime late tomorrow afternoon as long as I do ok with the anesthetic. Thanks for praying for me and I will update you sometime tomorrow morning.

Sunday, July 18, 2010

Fridays post

This is Fridays post. I sent it to blogger via text message and it sent it in 6 different messages. Don't really know why, I can't figure it out. So I figured out how to email to blogger. It sent it as 1 message but did leave spaces. You can see what I'm talking about by reading my other post below titled trying to figure it out. Who knows at least I can update you while in the hospital now. If anyone knows the trick to fixing these two problems or if they know what I'm doing wrong please let me know. Fridays update is below:

So we do not have Internet at our house anymore. Luckily my mommy figured out how to update you from her iphone. I will be able to keep you updated from her phone now. I went to the dr. today. I still haven't gotten over this congestion. Hopefully I will feel better by Monday. (By the way I don't sound any better today) We have to be at childrens for 830 am. We are staying at Aunt Rachael's house Sunday night so we don't have to leave at 545 Monday morning. I will update you on how I'm doing once we get settled in. I am still having lots of seizures. We are hoping to catch everything on EEG. I did get all my neurotransmitter results back. Everything is absolutely normal. That is great news. Please pray that this hospital visit will lead us to some answers so that we can control these seizures. Also pray that I will be comfortable. I hate when they hook me up to the EEG for only 30 minutes. Imagine 24 hours:( Mommy and daddy are going to bring lots of toys and buy me a few new ones to help entertain me:) Yes I am spoiled..LOL Also pray that I will do great for my MRI test on Tuesday. I will have to be put to sleep and this always makes my mommy nervous. Talk to ya soon and thanks for praying!!!

Trying to figure it out.

Hopefully this works. I'm trying to figure out how to post from my
phone so I will be able to keep you updated while I'm in the hospital.
If you dont know we do not have internet at our house. So ive been
trying to post from my phone. It may take a couple of post but I'll
figure it out. Sorry for the 6 broken up messages that were posted
Friday. Don't know why it did that. I did delete them but it wouldn't
delete off his update page.

Tuesday, July 13, 2010

Neurologist Report

Everything went great at my appointment today. She increased my clobazam but doesn't want to start me on anything else until my 24 hour EEG. She is very concerned about my right side. This side of my body is very weak. She wants to repeat my MRI after my 24 hour EEG. She is doing this test since I am older now. She is thinking maybe we missed something the 1st time since I am having so much trouble with my right side. This test will be done on Tuesday once my EEG over. They will have to put me to sleep again :( The only other reason my right side may be struggling is because I'm having so many seizures on my left side that my right side doesn't have enough time to recover. If this is the case, the EEG will show it. After my test are complete next week we will decide what way to go based on the results. She told us about a new software they are installing that shows what parts of the brain are working and what parts are not. She said I will be a candidate for this new test once they get it installed since I am having so many seizures. So lost of new test and new decision to be made in my near future. Please pray that we find an answer to all of this and that we can fix it. She was amazed at my development and said that we should be very thankful for how much progress I am making. Thank you all so much for praying for me. Love ya, Jadon

Sunday, July 11, 2010

Fun weekend!!

I've had a busy and fun weekend. I went to two birthday parties in one day. I was such a good boy. I then got to go help daddy bale hay. The picture above is me in the hay. I loved it and kept picking it up and shaking it. After that I played with my friend Connor. Today I ate lunch at my Paw and Mar's house, went to see my Papa and RaRa, went swimming, and then hung out with MiMi. So you can see I was busy. I have been playing, playing, and playing. I am using my thumbs. I used to curl them up and just use my other four fingers but now I'm using them all. Since I'm using my thumbs I can grab big objects now. This makes me so happy!!! I will grab almost anthing you put close to me. This includes the remote, mommy's phone, the computer, and you know all those fun things that mommy and daddy play with...lol As far as my seizures I'm still having anywhere from 60-100 a day. I have a neurologist appointment Tuesday so I will update you on what she says. We are looking at going to see an epilepsy specialist in September. I will keep you all updated. Please pray that I continue to develop. This is so important for me right now.

Thursday, July 8, 2010

Rollie Pollie

I have been rolling everywhere. I can roll both left and right when on my stomach. I can also roll to the left when I'm on my back. I have learned how to put my nunu in my mouth. I don't get it all the time but when I do I get very excited. I'm showing some problem solving skills. For example when I can't get my right hand to do what I want it to, I take my left hand and move my right hand to where I want it to go. This is excellent that I'm showing these skill. As far as my seizures go I am still having lots of them. I had a cold earlier this week and I was having one seizure after another. They have decreased some since I am feeling better. My new medicine has not helped at all. I am still having about 60 spasms a day :( I see my neurologist Tuesday so we will see what she says. My mommy and daddy are anxiously awaiting my 24 hour EEG so we will know what type of seizures I'm having. Well I lost my favorite physical therapist today. She is having some medical issues and is taking a medical leave. Please pray for her to get better. I sure am going to miss her. Thanks for praying for me. I know that one day we will get these under control.

Friday, July 2, 2010

Finally some good news!!!

I have been doing really good this week. The increase in topamax has help decrease my seizures. I am only having about 50 a day now. I am waking up and having a few during the night. My mommy and daddy think the decrease is also due to not taking the clonazepam. We are not doctors but it seems like the more they increase that the more I have. This makes since because I have seizures when I am tired and the clonazepam makes me tired. Good thing is my neurologist said no more clonazepam ever. I am also doing better physically since I have been off clonazepam. I am even learning to do more things :) If you look at the picture you can see me eating a cookie all by myself. I was so proud of myself and so were my mommy and daddy. If you look real close you will notice I am eating with my right hand. This is the hand that I don't like to use. So this is great progress for me. I also rolled over from my back to my stomach. I am holding on to my toys more and I am banging on toys. I am just amazing everyone with my progress. Guess what my medicine from Canada came in today. It just shipped Tuesday and we got it in already. So 5-10 days only took 3. Yay!!! So my mommy just gave me my first dose. I will get another dose tonight. The neurologist said we should see results within 2-3 days. We are praying that this will be my magic medicine to stop these seizures. I will keep you update. Everybody have a great Fourth of July weekend. I love you and please continue to pray for me!!!! Every new thing I do is just proof that your prayers are working. So thank you all so much!!!