In Which Connor's Neurologist Calls, And We Are At Our Next To Last Resort

So we heard back from the neurologist today.

Not fantastic news.

Connor is maxed out on his current seizure medications.  Currently he's taking Keppra and Trileptal, which have been really nice because he's had zero side effects from them.  However, they just aren't controlling Connor's seizures effectively, and the more of them he has the greater possibility we have for him to sustain brain damage due to the whole not-breathing thing.  Currently Connor's seizures are falling into a pattern where he has one about every ten to fourteen days.  He's had nine in the past four months, and during those four months his seizure meds have been upped six times.

So the neurologist is going to try adding a third seizure medication.  I'm not sure exactly what medication that will be yet-- we'll find out at his appointment this Thursday (made today; normally it's at least a month waiting time for an appointment, but they aren't messing around with him).  And unfortunately, if this third medication doesn't work the plan is to refer him to what they call the "Epilepsy Program."

That would be the program with the neurosurgeons.

Connor probably isn't a candidate for the traditional brain surgery for partial seizures-- where they remove the part of the brain where the seizures start.  This is because Connor's seizures start in the brainstem, which is kind of essential for various things like, oh, breathing.  Now I'm not a neurosurgeon by any means, but since the whole not-breathing thing is the reason the little guy's seizures are such a big deal in the first place, it might be a good idea not to give him any more reasons to not breathe. 

However, he might be a candidate for a vagus nerve stimulator, provided his cardiologist doesn't think it would interfere with his heart function.  You can read more about what exactly a vagus nerve stimulator is here, if you are so inclined. 

But I'm really, really hoping that this third medication does the trick, because quite frankly even though it isn't technically brain surgery I'm not excited about the idea of Connor undergoing a surgical procedure to implant a device that's going to be shocking his brain on a regular basis.  For one thing, the little guy has already been through so many surgeries.  If he had this done, he would have to have surgery again every six years to replace the battery and every twelve years for a replacement device, and any time Connor goes under anesthesia there's a risk.  For another, this is such a new treatment, and doctors aren't sure why it (sometimes) works.  Connor's extremely young to have this sort of surgery done; most of the studies have been done on patients twelve and older.  The brain is a mysterious thing in typical people-- let alone a kid like Connor.  And the thought of having an experimental surgical procedure done on him with no real guarantee that it will help makes me have this kind of knee-jerk terrified reaction.  Seriously-- just thinking about it makes me hyperventilate.

But if this next medication doesn't work, we may be out of other options.  If Connor's seizures quit responding to medicine, having an implant that only has a 40-60% chance of helping stop the seizures would still be better than not having the implant and having a 100% chance of continuing the seizures.  And if that's where we end up going, well, I'll suck it up and get over it, because we need to do what's best for Connor and not what I'm most comfortable with. 

Let's hope it doesn't come to that.

~Jess