Neurology Visit

So on Wednesday of last week we had our routine visit with our fantastic neurologist, Dr. Joshi.  We were actually excited for this appointment because of how well Beau had been doing.  After all, it had been since the end of October that he'd had a seizure and his balance and overall brain clarity seemed to be awesome!  The doctor, also excited, was cautious and told us that she didn't want to be a downer, but eventually the seizures would break through again.  The Depakote was doing it's job though and she figured it might buy us a few months of time.  Since his brain has seemed "clearer" (if that makes sense) she figured, as well as we did, that the electrical impulses that were constantly firing in the brain on the last EEG, must be slowing down thanks to the Depakote.  After all, wouldn't you be able to think clearer if your brain wasn't firing every second!  Because of that, she ordered an overnight EEG to get a comparison to his EEG he had in April of this year.  This test is scheduled for Monday and Tuesday of next week in Iowa City.  No medication changes were made and she discussed that we still have room to increase the Depakote if needed or there is a drug called Lamictal that she could slowly add if needed.  He is already on Kepra, so nothing would change with that. 

The discussion was also had about the possibility of brain surgery which she likes to do before the age of 5 on children because of the brain's incredible ability to "re-wire" itself, so to speak.  Dr. Joshi explained to us the complexity of Beau's case.  A few more drugs would need to be exhausted - proving that they are no help for Beau.  The abnormality that she sees on PET scan as well as activity on his EEG, shows that the abnormality is located on the left side of the frontal portion of the brain, near the midline.  She has always noted that his right leg is weaker and doesn't work as well as Beau's left leg.  This would make sense since the abnormality or damaged area of the brain is on the left side = right sided problems.  The complexity happens when, we as parents describe how a majority of Beau's seizures have affected his left side of his body - meaning the trigger came from the right side of the brain.  Many of his early seizures in fact would involve the left side, leg and arm, and for at least 2 hours after the seizure, he would be paralyzed on the left side.  Because of this, Dr. Joshi is thinking that because the abnormality is so close to the midline, it may be "bouncing" back and forth, resulting in both sides being affected.  To properly determine if surgery is an option for Beau, they would have to place EEG electrodes subdural.  That involves the horrible process of opening up the brain and placing the electrodes directly on the brain itself - which is much more specific than a regular EEG.  It carries it's own risks of course and the whole process makes me want to vomit.  Andy and I both just cringed when she spoke about it.  If the test determined there was activity bouncing back and forth it wouldn't be worth the risk to do surgery.  You certainly can't take out areas on both sides of the brain.  At this point in time I chose not to think any more about it - thinking that "we'll cross that bridge when we get there". 

As our luck would have it, that very same night (the day of our appointment) Beau suffered a small seizure after falling asleep.  This seizure affected the right side of his body and was short - only 25 seconds in length.  His evening dose of Depakote was then increased and since then we have been seizure free.  Since he's been seizure free, he will still have his overnight EEG next week.  He has been very moody though since increasing the dose, so I'm hoping that once his system adjusts, the moodiness will drop. 

Time will tell how his body is going to handle the Depakote.  I just wish this poor kid could catch a break.  I guess we need to be grateful that he had over a month without seizure activity and what an awesome month it was for Beau!