Sick for Halloween

I have been sick all weekend. I started wheezing Thursday night. Mommy and daddy took me to the doctor Friday. They started me on breathing treatments. The breathing treatments helped with my breathing but they caused my seizures to be very strong. So I could only take a half of dose of the medicine and only when needed. I haven't needed a treatment since Saturday. Yesterday my fever was 103.4 and today it is only 100 so I'm doing much better. As far as my seizures, I had a really good day Thursday. I only had about 30 spasms all day. I'm also not having them at night anymore. Of course now that I'm sick they are up but I'm sure they will go down once I'm better. We are 1 week away from starting the ketogenic diet. This week we are going to eat everything I can't have on the diet..LOL Please pray for us as we are nervous about starting something new. Everyone keeps saying that its hard but hey what can be harder than watching me have seizures everyday. There is not a day that goes by that my family doesn't hurt for me. Maybe this diet will be the answer we have been waiting for so long. I have been seizing everyday for 8 months now and that's not counting the 2 months before I was diagnosed. I did have 2 days of seizure freedom during the 1st dose of ACTH but that's it. Please continue to pray for me. Your prayers are working and I'm on my way to being healed.


FYI
If you haven't seen the movie "First do no harm". It's definitely worth watching. It's about a mother and her son who had epilepsy during the early 90s. None of the medicine they tried worked so she starting researching herself. She read about the ketogenic diet and fought to get her son on it. It made me very thankful for the resources we have today.

Neurologist visit

I know I haven't updated in a long time. We have been super busy with all the fall activities. We have actually just been enjoying me having less seizures. I'm having about 40-60 a day. Even though I'm still having this many I'm doing lots of new things. I'm clapping, I said ma ma, and I'm holding my bottle and cup. Just imagine what I could do if we could get them down to 20. I saw my neurologist today. She is looking into trying to increase my banzel if possible. She said since it has decreased my seizures so much she would like to increase it if possible. Other than that she said I look fantastic. We are still scheduled to start the ketogenic diet November 8. She is hoping that between the diet and the banzel that will we get these under control. Please continue to pray for me. Your prayers are helping me more than you know!!!! I'm leaving you a picture of my brother and I playing this morning. He loves me so much. Mommy doesn't have to tell him to tell me bye in the mornings. He always gives me a kiss before he goes to school. So sweet :)

Ketogenic Diet

My seizures are staying about the same now. I'm only having about 20 during the night and then about 40 during the day. So the medicine is definitely working. We are very thankful that my seizures are down. We still aren't satisfied with 60-80 a day though. Mommy talked to my neurologist in New Orleans today and we are going to start the ketogenic diet. Mommy and daddy have been researching between Vagabatrin and the keto diet since we left Boston. They both think that it is less risky to do the keto diet. We know that it is going to be hard, but we would rather start this diet while I'm still young. The diet has a very high success rate. We went and got my vision checked and talked to the eye doctor about the medicine and we just don't want to risk vision loss right now. My strengths are my vision and my personality. I already have so many issues and we think its too risky. So we are waiting for the neurologist to call us back with a date to start the diet. I will have to start it in the hospital and stay for 4 days. We are not looking forward to the hospital stay but we believe that this is the next step that we should take. In Boston we had decided to go with Vagabatrin, at the last minute the doctor came in and said try Banzel first. We believe this happened for a reason and that the diet is the right way to go. Hopefully the combination of the diet and the meds that I'm on will give us seizure control. If the diet works, I will be on it for two years. Two years is also when Boston wants to see us back to repeat the test that they did recently. Please continue to pray for me. I've really come a long way in the last week.

Great Day!!!

I was hesitant to post this because it seems like everytime I post good news we have days of bad. I finally decide that I was because today was a great day. I don't have many great days so we are just going to praise God for today and pray that we will have more good days than bad. I made it all night without having any spasms. When I woke up this morning, I had a bad cluster of around 35. Since then I have only had about 25 more spasms. This is a huge improvement. Thank you God!!! Maybe this medicine with the help of your prayers is working better than we thought. We will definitely know in the next couple of days. Thanks you God for this great day and thank you all for your prayers!!!!

I just don't know

After mommy increased my medicine Thursday night. I had a great night. I slept the entire night. I can't remember the last time if ever that has happened. Well when I woke up that morning, I had a cluster of over 90. I had a pretty good day after that with very few spasms. I'm having less clusters throughout the day but I'm having so many spasms in each cluster. I'm actually having more spasms than before. So we really don't know what is better. We increased the medicine again this morning for the last time. Mommy and daddy are going to see how I do the next couple of days and then call my doctor. So we will see how I do on the increased dose. We are thinking I was doing better at the beginning of the week because they took me off the clobazam. I'm still more vocal and staying awake more. I have learned to hold my own sippie cup. I used to could hold it while laying down but now I can do it in any position. So mommy took my bottle away and I get everything through my sippie cup. I don't miss my bottle at all. I'm satisfied to drink out of my sippie cup. I'll update in a couple of days and let you know what my seizures are doing. Please continue to pray!!!

Still improving :)

My seizures continue to get better. They are still not controlled but they are better. I'm only having them when I go to sleep, when I wake up, and then just a few here and there. I'm also sleeping much better. In fact, last night I only woke up 1 time. I had 15 spasms and then went right back to sleep. That is a significant decrease at night. I'm also still only taking two naps a day. I sleep about 2 hours in the morning and 2 hours in the afternoon. This makes us so happy :) We will increase the banzel again tonight. Please continue to pray for improvement. Your prayers are working. We are praying that once I get on the full dose we will have control of these spasms. Thanks for caring and praying, Jadon

A little better.

So my seizures are a little better. I'm still having alot but they are better. I was having them all day long. Now I'm only having them when I go to sleep and wake up. I had one bad cluster of 30 this morning but the other clusters were only about 12. I had a few single spasms here and there but overall they are better. I'm estimating about 70. I was having over 100 in Boston. We still have to increase the medicine two more times. So maybe this medicine will work. We will continue to pray that it will be our miracle drug. I am totally off my clobazam and I can't tell you how excited I am. I am not tired all the time. I am napping just like a normal 1 year old now. I have never done this. I have always slept like an infant. Now I'm taking only two naps a day. I'm also more vocal and I'm moving around more. I just wish we could have stopped that clobazam earlier. I will keep you updated. Please continue to pray for me. I love you, Jadon

My trip home and a little more info

I first want to thank everyone who is following my story and praying for me. No we did not find a cause for my seizures in Boston, but we do know what kind of seizures I'm having. We also have a plan to try to control these seizures that are so hard to control. I know this sounds crazy but to not have a cause is atually the best thing that we could hope for. Now on to the last two days. We had a great flight yesterday. We left at 8:30 and landed at 11:00. I was so excited to finally get home and see my big brother. I did have an increase in seizures yesterday. It was probably due to the horrible day I had Friday. Right before they took me for my PET scan, I lost my IV. Well our IV luck had ran out. They could not get a vein. It took them 5 times to get me. In fact, I almost missed my PET scan. The medicine that they have to inject expires after so long. Mommy and daddy ran downstairs to necleur medicine and we made it in time. I was totally exhausted and then they gave me meds to make me sleep. We are asuming that is why I had an increase. My seizures have been pretty normal today. About the same as I was having in Boston. I have only been on the banzel for 2 days. We will not know if it is working or not for about 9 days. It takes 9 days to get on the full dose. Now we just have to wait and see what happens. That is the hardest part. We are trying to stay positive and look at the good in all this. One good thing is that since I'm having IS and not myoclonic jerks there is a 10% chance that I will outgrow this. We are also very excited that it is not affecting my entire brain. We don't know what the long term effects will be, but we have to believe that one day I will catch up. Please continue to pray that we will get these seizures under control. I'm leaving you a picture of me playing outside with my brother yesterday. I missed playing with him so bad and you can tell how happy I am.

We are coming home tomorrow :)

I'm finally finished with all my test. The leads that were on my head have left sores because they were on so long. Mommy and daddy are putting medicine on it so hopefully they will heal quickly. I was discharched from the hospital around 6:00 pm. Mommy and daddy brought me to an italian restaurant across the street from the hospital. I loved it and ate a lot of food. I was so hungry after they starved me all week for all those test. After that daddy surprised us with a hotel room. Now we get to sleep in a comfortable bed and we have our own bathroom. LOL On to my PET scan results. The PET scan gave the same information as the other test did. My seizures are coming from the left hemiphere but they can not find a focal point. So I do not qualify for surgery at this time. As my brain develops I might qualify in the future. So far now we have to try and control these seizures. Dr. Bourgeois came to visit me this morning. He said he wants to try Banzel before Vagabatrin. So I started Banzel tonight. I will continue to have my eye exam so I will be ready to start the Vagabatrin in case the Banzel doesn't work. Hopefully the Banzel will work and then I won't have to be on the Vagabatrin. So please pray that it will work!!! Our flight leaves at 8:30 in the morning and we will be back in NOLA at 11:00. I can't wait to see my brother Jacob.

More results

We don't have the official results of the SPECT scan. He did say that it didn't turn out as well as expected. The first test was not great due to the shortness of my seizures. The medicine is suppose to be injected at the start of a seizure. Well mine was injected at the start but the seizure was so short they didn't get the full effect. The second wasn't that great because I can't go long enough without having seizures. With that being said, he did say that all my seizures are coming from the left hemisphere of my brain. That is also what my EEG is showing. So he seems to think that the PET scan will give us the information we need to determine if I'm a candidate for surgery. We will not know this information for several weeks. The entire neurology team has to study all the test results and then they have a big meeting on just me. It is about 20 people in the meeting which means 20 opinions. I think we are definitely in good hands. So now on to medication. We will not start the new medication until we get back home. I have to be monitored when I start the medicine and I have to have eye exams. I also have to be off the clobazam. The neurologist was going to wean me off by Thursday but he said my EEG looked alot better today since we stopped the meds. Unbelievable another seizure med that was increasing my seizures. Since this is the case, I will be completely off of it Monday. Mommy has to call my neurologist tomorrow and get me an appointment ASAP so we can start the new medicine. Please pray for tomorrow's test and for the doctor's who are studying my case. We love you all!!!

A few results

We have not received all of my test results back but here is what we know so far. My MRI is normal. I am sad to say that my IS is back. These seizures that we thought were myoclonic are actually spasms. That is why I'm regressing. So of course the way we treat them is totally different now. After alot of studying, praying, and talking to the neurologist we have decided to go with Vigabatrin(Sabril). This is a risky medication because it can cause vision loss. My vision will have to be monitored real close. If the medicine does not work then we will discontinue it within a week. The neurologist thinks that we should give it a try because I'm having so many spasms and we need to stop them. Please, please, please pray that this will be our miracle medicine and that I will not have any side effects from it. Also pray for my family as the thought of vision loss scares them really bad. We do believe that God has us here for a reason and we have faith that this is what we are suppose to do next. We stopped the clobazam today and we will start the vigabatrin soon. The doctors are saying as long as we watch my vision closely we can stop at the first sign of visual change not causing too much damage. We should know the results of my SPECT scan tomorrow. We don't know how well it will turn out because you are suppose to go 2 hours without having a seizure. Well I can't make it more than 45 minutes. So we will see what the test results say tomorrow. I don't have any testing tomorrow so I can eat whatever I want. It has been very hard the last 3 days. Being sedated for 3 days in a row is absolutely terrible. At least we get a break tomorrow and then the PET scan Friday. As you can tell from my picture, I am still just as happy as can be. I will upate you as we get more information. Thanks for praying for us. We miss all of you!!

Very long day.

It's been a very long day and a very tough one for me. I couldn't eat this morning which made me very irritable. I did enjoy riding to the hospital in my stroller. I love watching all the people. The hospital is absolutely amazing. It is huge. It even has a CVS pharmacy and food court. The hospital staff is very nice and they are treating me well. When I got here this morning they took me back for my MRI. Mommy and daddy got to stay with me the entire time. Mommy loved that she did not have to leave me. After the MRI, I stayed in recovery for about two hours. They then sent me up to my room. Once we got to the room, they came to put my leads on. It was horrible. I screamed so much that I made myself hoarse. It didn't hurt, I just don't like anyone messing with my head. I have been fine ever since then. All smiles :) I have my SPECT scan in the morning so I will have to be sedated again. Hopefully we will have some info to give you tomorrow. All the neurologist said today was that they were testing to see if I'm a surgery candidate. I'll update when we get more info. Please continue to pray. That's the best thing you can do for my family and me.

We made it.

We made it to Boston. I did wonderful on the flight. The people on my flight told my mommy and daddy that I was such a beautiful and good baby. Once we landed we took a taxi to the House on Autumn Street. The house is called the Devon Nicole House. It is set up like a dorm. Its perfect for what we need. Everyone in the house is nice. It's sad to see the sick kids staying here. We did get to go do a few things today in this cold weather. We went on a duck tour which was lots of fun. It was a vehicle that was built during World War II. It drives on the road and then turns into a boat for water. I slept through most of the tour. After the tour we ate lunch at the prudential center. We then went to Bunker Hill, the USS Constitution, and finally Fenway Park. We had lots of fun but we sure were tired after all that walking. I did get to ride the subway several times today. It took mommy and daddy a little while to figure out all the routes. We made it all over town without taking the wrong train. We also went out to eat tonight. Eating is not a priority over here like at home. We have asked 3 people about a good restaurant to go eat and they all say "well there is a food court right up the road". LOL We found a longhorn to eat at with sweet tea. It has definitely been a fun day. Tomorrow starts all the not fun stuff. I have my MRI at 10:30 which is 9:30 our time. I then have to be hooked up to the EEG. Please pray for me as tomorrow is going to be a hard day for me. I will update you once we get settled tomorrow. Thanks for praying and I love you all.