Boston Results.

We are now home and finally get to relax and spend time with family. Our appointment went really well in Boston. We are making a few changes to my diet. We are going to spread my meals out so that I get to eat 5 times a day. Hopefully that will help me eat my food. We are also getting some meals planned that have baby food vegetables and fruits. By doing this we hope to get me to eat some more fruits and vegetables. Right now I'm only eating apple sauce. We still haven't noticed any change in my seizures. The neurologist want to give it another 2-3 months. If we don't see any change we will stop the diet. I have been on it for about 2 month already. They said the diet just doesn't work on some people. We are not giving up yet though. We will continue to try and pray that we can get these seizures down. I did go a little over a week without seizures at night but they came back a couple of nights ago. We got some more test results that they did back in October. The genetic test that we did came back normal. Now we are just waiting on the CDKL 5 genetic test to come back. We got the official results of my 3T MRI. While we were there they said everything looked normal. Well when the neurologist got together and studied it they found a POSSIBLE malformation in the left post lobe of my brain. They are not sure what this is because I'm so little. They want to repeat the 3T MRI sometime in April once my brain has grown some more. They are hoping it will be clearer then and then they will be able to determine what the are seeing. They also want me to go see an orthopedic for my feet. My toes turn down a little and they want us to get it checked out. While I was in Boston they did more blood work. My blood work showed that my CO2 level is low so they started me on PolyCitra to help regulate my CO2. They said this is common when babies are on the ketogenic diet and take topamax. My blood sugar was also a little low but nothing to be concerned about. So, so far all this diet has done is cause more problems. All you keto fans don't get mad at me. I know you have to give it time but its been horrible for us. We are working on making it better. I am still on the new medicine Vimpat. It has not helped yet but my neurologist still want to give it some more time. So it looks like we have another failed medication. Here is the list of failed medicines:
1. klonopin
2. prednisolone
3. ACTH (2 rounds)- didn't help seizures but helped EEG
4. keppra
5. topamax
6. trileptal
7. clobazam
8. vimpat
9. banzel
All of these helped at first and then stopped. I'm still on keppra, topamax, banzel, and vimpat. We are slowly getting rid of the ones that aren't working. So I think I have updated you on everything. Please continue to pray for me. I keep thinking that we didn't get our miracle in 2010 but the more I thought about it, I think we really did. I went from not being able to hold my head up to sitting up and being just as alert as a normal 15 month old. So no we didn't get our seizure miracle but we came farther than anyone expected. I still believe we will get our seizure miracle one day. I'm leaving you with a picture of me trying to catch the snow at the airport in Boston. It was absolutely beautiful. Everyone have a great Christmas.