Thursday, November 3, 2011

Kid, You Oughta Be In Pictures!

One of Spike's many neurologists stopped by tonight to check on him. He was pleasantly surprised to see a quiet, alert, happy kid just a day after surgery.

Yes, I said quiet.

The two days it takes for Keppra to clear out of his bloodstream have now passed and the real Spike has returned. What a delightful little kid. I swear I am never going to allow him to be over-medicated again without a very clear indication that the additional drugs are beneficial. I know the doctors are doing their very best to help him but there is more to the little guy than just seizure control.

The doctor also told us that this is Epilepsy Awareness Month (we are WAY ahead of the curve in being aware of epilepsy!) and that a local TV NEWS crew was going to be in the hospital in the morning to shoot a short segment. He wondered if the most handsome guy on the ward would like to be on TV. I demurred and suggested Spike should get some air time instead of me.

I think we could probably get a sponsorship deal for Spike if he wore lots of Popsicle stickers on his SEEG turban.

Spike had a relatively good day today. He was released from intensive care a few hours ahead of schedule Medically, he was strong but still fired enough seizures to please the monitoring crew. Emotionally he was close to being himself again and that is truly a delight.

His main neurologist also came by to confirm that they will hold an early patient conference on him Monday morning. Depending on the outcome of that discussion, he may go right into surgery Monday afternoon. Both the timing of the conference and the potential rapid surgery are not standard procedure but I have found that pushy parents and tons of seizures can create lots of medically sound flexibility.

Even so, Monday seems so far away right now...until I think of them actually removing part of his brain. Then Monday seems incredibly close and everything seems to be happening very, very quickly. Mixed emotions for sure but I know this needs doing and sooner is better than later.

Recently, many of his single seizures or the first in a cluster start with that evil, angelic smile and buoyant spirit. We can tell when the seizure is coming and can see him fighting it on the one hand and acting happy as can be on the other. The brain is a strange thing indeed. When those happy neurons are firing, it's not as if Spike is artificially happy, he truly IS happy, almost by definition. The false part of the happiness is that it comes from no particular stimulus other than a faulty firing of electricity in his head. So the cause is artificial but the effect is real - but fleeting. As you can imagine, this can really mess you up as you interact with him. You want to just accept the happiness and join him in his bliss but you also know that you must standby for the likely seizure.

This post was just rudely interrupted by a 10 seizure cluster. Monday can't come soon enough.

One thing I want to check carefully with the team is how close the "happy center" is to the source of seizures. I sure don't want them removing that! Generally, discussions about boundaries for resections involve sparing the motor and language skills areas. I've been told that cognitive function is somewhat malleable and removal of some zones results in other areas stepping up and taking over the functions formerly assigned to the resected area. I have not heard anything about areas of the brain responsible for emotions. I guess I have yet another night of heavy research ahead of me.

1 comment:

  1. Son had the left amygdala removed--no harm.

    If a 2nd proceedure was required, they would have removed his hippocampus. That controls flight/fight emotion, so we're happy he got to keep his.

    Hang in there. One day at a time. Relish the good times.