For the most part, Beau is doing well, we see little improvements here and there. To others raising "typical" children these improvements wouldn't even be noticed, but to us, they are huge accomplishments. Beau is adding more sign language to his vocabulary and a lot of it, he is creating on his own. We are working on teaching him the signs for"I want" and "I love" and then letting him fill in the blank at the end. He is currently on the max amount of Keppra and Depakote for his weight. If the seizures break through, or should I say, WHEN they break through, the next step is to add lamictal and wean off of Keppra, keeping him on the Depakote. After that there is another drug she has up her sleeve which he would be placed on. All in all, Dr. Joshi said she doesn't want to see a plateau; she wants to continue to see improvements.
Here is what Dr. Joshi tells us: According to the "criteria" (not sure whose criteria - I suppose the University of Iowa) Beau is a candidate for the brain/grid mapping procedure to determine if he could have surgery to attempt to eliminate the seizures. Subdural grid electrodes would be placed directly on the brain. Beau has had the inpatient EEG's and the PET scan (while being placed under anesthesia he had a seizure). The exact location of his seizures can't be determined with 100% certainty from those tests. They are showing really close to midline and that could indicate the activity traveling back and forth between both halves of the brain. That would mean Beau wouldn't be a surgical candidate to have the abnormal section removed. She is also concerned with the fact that the area she thinks may be causing the seizures is located just to the left of midline extremely close to the function of his right leg. Remove a section in that area and if you go too far one way or the other he looses function in his right leg. In order to determine whether surgery is an option, he would have to have "surgery" to have the grid electrodes placed directly on his brain. Google the pictures, think about it and know it seems like a very scary thing to see your child go through. His head would then be wrapped after the procedure and he would remain in the PICU until (after being removed from his medications) he had a seizure. Having the seizure would give the doctors the answers they need. If it is in an area that they don't feel can be removed, then he would be taken back to surgery, sewn back up and a VNS placed. A VNS is a vagal nerve stimulator. From www.epilepsy.com I found the following explanation of VNS:
Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.
The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck. The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.
IF it turned out Beau was a brain surgery candidate, he would be taken to the OR, the grids removed, the "bad" spot of the brain removed and then he would be closed back up. The hope would be the seizures would stop and that his right leg function would be maintained.
Here is my question - why the hell do Andy and I have to even think about this? Why should I have to make such a life changing decision for someone else? It feels almost as if you are playing God by choosing or not choosing grid mapping/surgery etc. Although Andy AND I really aren't thinking about it - Andy refuses to think about it and understandably so. I keep pushing it to the back of my mind as well. Dr. Joshi is ready to do this at any time because she knows, and so do we, that eventually we are going to run out of drug options for Beau. She assures me that his personality would not be affected if that particular portion of the brain had to be removed. But, what no one can assure me is that any of these procedures would go off without a hitch. So much to think about but we will continue to let this possibility sit at the back of our minds for right now, focusing on the here and now and the incredible little boy we affectionately refer to as Beau Beau.
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