Sunday, October 23, 2011

All Is Not As It Seems

Spike's mornings are usually seizure free. We don't know why but it's a pattern he's held to since the seizures returned in August. Of course, doctors generally do rounds in the morning so they get to see an apparently happy, healthy, energetic little boy. I am sure that more than one has wondered if we exaggerate the seizure counts.

Earlier this week, a doctor happened to stop by around 4:30 in the afternoon. That's a highly variable time for Spike. Some days, the afternoon goes just fine. Other times, he'll spend hours in a cluster. On this particular day, things had been going well. The doctor sat down next to Spike and asked how he was feeling.

"Fine," Spike answered with the cutest grin you can imagine. Happiness just poured off of him and his eyes looked like every kid's on Christmas morning.

"He's about to have a seizure," I told the doctor.

"No, he looks fine."

"In three, two, one ... "and the primal scream covered my "now."

The smiling seizures are, perhaps, the cruelest. I don't know if the abnormal electrical activity is actually making him feel very happy and thus causing the smile or if the activity is simply affecting control of the smile muscles without effect on his pleasure center. I tend to think it's hitting the happy zone of the brain because the smile is always accompanied by bright eyes and he says that he feels really good.

The cruelty comes not only from the smile dissolving into a scream, though that would be bad enough, but also from the fact that we suspect EVERY smile is a precursor to a seizure. Therefore we cannot simply take joy in his happiness even when it is genuine.

There are other paradoxical combinations of pre and post seizure activity. For instance, he was just running around playing with nary a care in the world. Tons of energy. A cluster of four seizures knocked the energy right out of him and he is now sleeping soundly next to me. Other times, he'll be extremely lethargic and a rapid sequence of seizures will seem to reinvigorate him. At night, he may have a seizure that wakes him and leaves him alert and playful or he may sleep right through it and the two dozen to follow.

Although we become very attuned to signs of impending seizures, we cannot predict the final result of each one. If I pick him up and put him to bed so that he is safe when the next one hits and ready to sleep it all off, I may end up with a wild animal flying around the bedroom. If I just let him continue playing, he may land on his face 30 seconds later. There is no right answer.

Way back in January during his first stay at Duke, he become unresponsive for many hours. We do not know if it was medication or illness related but he faded so quickly and fully that I thought for sure he was going to die. Instead, he was practically in a coma for a whole day. I was lying next to him later that evening when he turned to me, opened his eyes, smiled and said "Hello Daddy." Not yet understanding his patterns, I was beside myself with joy, for all of three seconds, before a look of abject terror came into his eyes and he screamed loud enough to bring all the nurses running. He then passed out  and remained completely out of it overnight.

The next morning, during rounds, a dozen medical students filled the room as one of them presented the case. The air was thick with melancholy as everyone looked at this poor little kid who was just slipping away.

Spike then sat up, opened his eyes, looked around and said, "Hey! What's going on here? There's a LOT of doctors in my room!" He was happy, hungry and healthy looking the rest of the day.

The uncertainty, the deceptive patterns, the lack of anything stable tears me apart. I can't even imagine what it does to Spike.

1 comment:

  1. Hi Tom,

    Wow, just finished catching up on your past several days. It brings back such vivid memories for me as we went down a very similar road. Looking back once this is over, you will wonder how you survived; I know I do.
    You are focusing on what is important, doing the best for SMOOTH, the rest is just noise.

    I wish for you the same good outcome that we experienced following surgery. Allen likely will have to stay on anti-S meds forever, but his seizures have stopped. I hope Mr. Smooth has the same results.
    Take Care of yourself as well.
    Ron

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