Sunday, October 23, 2011

I'll Have What He's Having

Last night, I was settling in to the chair next to Spike's bed, finishing off my dinner. I had a cheese covered breadstick in hand and suddenly realized that I could once again share my food with my best buddy. I asked him if he wanted a piece and his eyes just lit up. He returned the favor later today while eating his first McDonald's Happy Meal since February. As he tore into the food, he paused, held out a french fry to me and said, "We can share again!" Little things have big impact.

Little pills have big impacts too. Coming into Cleveland, Spike was on the ketogenic diet as well as four anti-epileptic drugs and countless supplements. We got him off the diet and down to just two medications. The happy effect of this was the return of his normal witty and calm (by four year old boy standards) demeanor.

Then one of the new doctors wanted to retry Keppra, the very first drug that Spike had sampled back in January. I was leery of this not only because the drugs seem to have no positive impact but also because I vaguely recalled strong behavioral side effects.

The doctor wanted to get Spike on a long term drug that would not have the some of the same problems with long term use of phenobarbital. I couldn't argue with that as I have come to despise phenobarbital for all its interactions and lack (in Spike) of efficacy. So we put him on a tiny but rapidly escalating dose of Keppra. The calm little boy promptly went and sat in the corner. In his place appeared an unstable little hellion with the ambitions of an acrobat and the coordination of a drunken monkey.

Spike has many drug personas and the one brought forward by Keppra certainly isn't the worst of the lot. Hyperactivity? Check. Sleeplessness? Check. Attention deficit? Double check. We are used to all of that. The one that is somewhat unique is a compulsion to put things in his mouth. Usually just his fingers but sometimes he'll bite down on toys. So what? Lots of little boys probably do that. It's really not a problem. Unless. Unless that little boy is prone to seizures without warning. Spike seized with his finger in his mouth the other day and bit it so hard that he very deeply broke the skin on both sides. Anything softer would been bit straight through and anything harder would have broken his teeth. Later, I saw a seizure start with his thumb in his mouth. I immediately grabbed his jaw and tried to open it. I would have had a better chance of flinging a satellite into orbit.

"Places objects in mouth" is probably listed somewhere on the side effects list for various drugs. That's nice for legal disclosures and medical checklists but it can be a VERY serious side effect for some people. We have agreed to give the Keppra a chance and see if his body adjusts to it. In the meantime it certainly increases everyone's stress level. Well, maybe not Spike's - he's high as a kite anyway. The worst part of playing with these drugs is that NO ONE expects them to have positive therapeutic effects. His epilepsy appears to everyone to be 100% drug resistant. I still have not gotten a satisfactory answer on why we are continuing drug therapy at all. I suspect that the doctors are uncomfortable not doing ANYTHING while his seizures spiral out of control but doing things that simply make the minute to minute struggle worse just doesn't make any sense to me.

I plan to finally draw a bright line before surgery. If his side effects are out of control then I am going to insist that the medications be withdrawn or dramatically reduced. Even if the surgery is successful in eliminating the seizures, his quality of life would still be dramatically compromised by the side effects if changes are not made.

On the other hand, maybe Spike really doesn't care. Right now he's bouncing off the walls instead of taking a nap. He's driving me crazy but he seems happy enough even if everyone else is at wit's end. Of course, the real problem is that some of this behavior can lead very easily to serious injuries.

Before we left the hospital yesterday, the neurologist asked just how bad the side effects are. As he asked, he was playing around with Spike who was energetic but otherwise well-behaved - as he usually is when some new stimulus arrives on the scene. I could tell the doctor was thinking "can't these parents just handle a little kid?" What I wanted to do was leave him alone with Spike for four hours and let him render a professional judgement. I know that his response would be "but I have work to do!" Well, so do I. In the end, I didn't say anything because I just wanted to get out of there.

Which reminds me, and I may have said this before. If you tie a kid to his bed, you'll have the police and family services all over you and you'll get three years in the Big House and your fifteen minutes of fame on the front page of the local paper. If you strap that same kid into a car set with three way harness, you are a Good Parent. I spend a lot of time being a Good Parent when Spike's meds kick in.

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