Poor Spike has been subjected to just about every chemical tht can be injected, infused or swallowed. The interactions between all the medications has made him drunk as a skunk, high as a kite, goofy as a Labrador and wild as a four year old boy. Quite often, all these conditions occur at the same time.
While he has been a model patient, the behavior induced by the drugs has been difficult to handle. In fact, over the past several months, these side effects have been, in many ways, the worst part of his illness. Although we try to exercise patience, it's impossible to keep up for long. Imagine trying to measure out heavy oil to the tenth of a gram while dodging flying cellphones. Now imagine that happening pretty much all the time. You can't help but yell at him even though he is blameless and truly can't control his actions. Not to say that he hasn't occasionally blamed conscious misbehavior on medication but what do you expect from a four year old?
On the drive North, I wondered how parents deal with years of this type of behavior without much hope for resolution. I thought specifically of parents with autistic children. How do they survive? As Spike was a little overactive (but charmingly so) on his first trip some sort of test yesterday, I mentioned this to the transportation staffer, more as a way of apologizing for Spike's behavior than anything else.
He surprised me by saying, "Well, my son is autistic and it's just something you learn to accept. You try to separate out the medical condition from just plain misbehavior and, honestly, you probably get it wrong quite a bit. You can't help that any more than the kid can stop himself from being wild. You are jsut as human as he is and will make mistakes. Stop blaming yourself."
He then told me that his wife used to hand out cards explaining their son's condition and behavior. If he acted out in a restaurant, for instance, she would simply lay one of the cards down on the table of anyone who seemed shocked or offended. That seems like a a nice way of getting the point across in an inoffensive way.
Those days may be behind us now. As of tomorrow morning, Spike's pharmaceutical cocktail will be reduced to just two drugs. That's down from a high of four simultaneous anti-epileptics with two emergency medicines, two behavioral drugs and countless supplements. I cannot adequately express my relief at this development. His behavior the last couple of days has been generally great and I really did not want to start any more experimentation when it is blindingly obvious that drugs are not going to control his seizures.
As mentioned in my previous post, the Cleveland team benefits from the experience gained at Duke. Normally, neurologists stop after two or three drugs and declare drug therapy a failure for a particular patient. Duke never gave up and tried just about everything possible. They had to do it in rapid succession which is not ideal but Spike's condition was far from ideal. Cleveland can now quickly check off the list and confidently declare his epilepsy extremely drug resistant. As a result, they agreed with my suggestion to drop nearly everything ahead of surgery. Along with the cessation of the ketogenic diet, this makes Spike's life immeasurably better - and that should always be a treatment goal.
Of course, Spike no longer has any excuse for misbehavior and I refuse to buy into the widely accepted "boys will be boys" excuse. Sorry buddy.