Don't Worry (Be Happy) -- It's Friday!

Yes, yes, we're still here, we're fine, and we're elated that it's finally Friday! It's been a looonnnnngggggggggg week.

Over the last few weeks Jordan's seizures have been increasing in frequency and duration. We finally had an appointment with the pediatric neurologist on Wednesday to discuss what to do next. And, as expected, the options are wide open. For the short term we're increasing her Keppra & Tranxene, and it seems to be helping (yeah). These are pretty "mild" drugs in the seizure arena, and Jordan doesn't seem to have any negative side effects from them, so that's a good thing. But unless her seizures stop completely over the next couple of weeks, we will continue to experiment with medicines & therapies to control them.

There are about 10-15 standard seizure medications out there, and each person reacts very differently to each one. Unlike some of the more standard medicines that work basically the same for everyone (e.g. Tylenol for pain, antibiotics for infections, etc), it's a bit of a crapshoot getting seizure control with medicine. Some people respond well to one drug, but most need two or three if they are to become seizure free (SF). Some people need high doses of one drug and lower doses of another. And some of the drugs, besides affecting brain chemistry, can have really nasty side effects like loss of sweating, extreme lethargy, loss of appetite, aggression, kidney stones, liver failure, etc, and many are toxic at level just slightly above their maximum dose. So, in general the idea is to try to get seizure control with some of the more benign drugs (like Keppra & Tranxene), and save the nasty ones as a last resort (like Depakote & Felbatol).

Well, of course, Jordan's diagnosis of Lennox-Gastaut Syndrome, a particularly nasty form of epilepsy, seems to respond fairly well to Depakote & Felbatol, but I admit I'm a little worried to go there. Other things with fairly good success for LGS include the Ketogenic Diet, and, as we learned on Wednesday from the neurologist, a vagal nerve stimulator (VNS). It is very similar to a pacemaker, and is implanted into the chest during surgery. It stays there until the batteries run out (2 to 8 years), and is then replaced. It tends to take 6 to 9 months to "fine tune" the settings, but in 65-70% of the cases of LGS, it is quite successful in gaining seizure control. The nice thing about the VNS is that it is not any more "work" for us -- whereas the Ketogenic Diet and medications are a lot of work (strict schedules, constant lab draws & doctor or dietician appointments, etc). So, now I have a new pile of homework -- investigate VNS and decide if that should be something we consider for Jordan.

In a way it's nice to have a neurologist who is so easy to work with and open to our ideas, but in another way it's difficult in that it puts the pressure on us to decide what is best. Of course this is what we always want, to be in control and to decide what is best for our own children, but on the other hand it is also indicative of the massive unknown surrounding the brain and seizure control. I mean, if the neurologist, with 30 years of experience, doesn't have a strong opinion about what to do, it must mean that there isn't a clear path to follow for any of us.

So now, without a local dietician to partner with for the Ketogenic Diet, I am on a mission to learn all I need to know about VNS. And most importantly we will need to remember those words of wisdom from Angel: Any decision made out of love is the right decision. With that we can't go wrong.