Ahhhh....Refreshed!

It was so great to sleep in my own bed last night next to my love and I am sure when Jace wakes up he will be feeling the same way - refreshed! He is stirring right now but he needs to sleep a little longer :) 

Yesterday we met with the neurologists in the morning and they didn't have the official EEG report as of yet. One of the fellows said she would meet with me later to discuss it.  

The Neurological fellow came back after lunch time with the official EEG report. They said the EEGdid show that there was not much change but it was still better than the 23 hour vEEG on the 29th that showed him in status epilepticus. This shows us that the Banzel is helping but not completely doing the trick. JB and I have decided to start Jace on the vigabitrin and eventually remove the Banzel. I was given a huge starter packet for the Sabril (vigabitrin), complete with waivers to sign and all. The waivers basically were saying that we know about the potential vision loss which is permanent also that we agree to give him this medication in such a way that the doctors say to. It will take about 2 days to receive the vigabitrin in the mail. This is not a drug you can just go pick up from any pharmacy so a speciality pharmacy ships it to you. We will be considered in the evaluation phase for about 3 months. Once we know if it is working then we enter the maintenance phase - we will worry about this later. Our short time goal is to see improvement with the addition of Sabril to the Banzel. We should see an improvement in 2-4 weeks! I am so excited to see Jace back to his old self again. I am thanking God already that Jace will come out of this with no ill effects. He will be caught up and back on track with his development for his age in no time flat!
We will follow up with the TSC clinic again in November where we will also follow up with this neurology fellow. She does not have a practice yet but she can see patients. We will eventually see Dr. Butler who is the head of pedi neuro at Children's Memorial Hermann. It will take time to get in to see him so in the mean time Dr. Hall (the fellow) agreed to follow up with us. We like her and still may stay with her. She is not afraid to convene with other doctors to get ideas and other suggestions on whats going on with Jace.

We are also going to be seeing an epileptologist eventually. Dr.Hall said thats pretty much inevitable. The epileptologist is currently not taking new patients right this moment. This is ok since what we need to do with her is not going to start until December. We will be going to go back to the EMU (eplipesy monitoring unit) for Phase I of the epilepsy surgery. In Phase 1 they record the seizures with a continuous vEEG. It is during this initial phase that the seizures are identified and the specific area where the seizures are starting (seizure onset) is tentatively localized (if possible). With Jace I am pretty certain that he IS having localized or focal seizures but since they have progressed they are starting to do a secondary generalization. This means that they start off in once spot but then spread to the entire brain. To complete this phase the epileptologist will wean Jace off his currents meds just a little bit so that we can record and see seizures.
You can follow this link to learn more about this type of surgery:
http://www.tsalliance.org/pages.aspx?content=586
Even if the Sabril seems to work Dr. Hall said we should still do Phase I and get a focal point pinpointed.
She also pointed out that since Jace is young then the seizures presentation, type and how to control it will change. His brain is developing in overdrive right now. Human brains are 90% myelinated by the age of 3. Usually after the age of 3 the seizure types and presentation become "static" and easier to figure out from there on out.

Well it looks like Jace is waking up so I should go get breakfast started for him - I am sure he is HUNGRY! :) He has been eating very well in the hospital! HA! If I left anything out I will come back and and it later. I must go and be mommy. :)

Quick note: Now that I am home and posting I will attempt to keep my grammar and spelling corrected. The last posts were terrible. It is not my style at all to post something that has bad grammar/spelling.....or the unforgivable exchanging of words such as here for hear. SMH - I must have been in a rush! LOL