The results of our 24 hour EEG showed that Matthew is having a lot of seizures. We already knew that, however, we learned that his seizures are all over the brain. They used to be mostly in the visual part of his brain.
The doctor suggested that we follow up with an Epilepsy doctor instead of a regular Ped. Neurologist. Epilepsy doctors mostly deal with seizures, Ped. Neuro's deal with anything brain related (headaches, Cerebal Paulsy, etc). He said that Matthew may have to deal with seizures the rest of his life. The dr took him off his Tegatrol. He said that Tegatrol may increase seizures, especially the type that Matthew has. We are also discontinuing the medication that he was put on when we got here from the Ped. Neuro at Children's (Depakote). He said that it doesn't seem to be working and it has bad side effects (1 in 600 get liver damage). We have started a new medication called Banzel. It has been FDA approved for about 1 year now.
The doctor gave us options about a Vagus Nerve Stimulator implant and discussed the Ketogenic Diet. The doctor was very good, I feel very comfortable with him, but he suggested that whom ever we decide to see long term work with us on those options.
The doctor used to work in Birmingham, AL. He was familiar with our Ped. Neuro in Pensacola because Birmingham was the closest Epilepsy doctor to Pensacola. That's a 41/2 drive each way. We are looking into our options about seeing what we can do so Matthew can be followed up by a Ep dr and not have to drive 9 hours round trip, especially because if we do the Vegus nerve or diet, he will have to be monitored very closely.
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