A New Label

Seizure Disorder.

A form of epilepsy.

According to the doctor, either one is a new and accurate label for the abnormalities in Caleb's brain.

We all have labels, some just have more than others. Some define our strengths, others highlight our weaknesses. Some might cause a slightly higher raise of the eye-brow (good or bad),and others require most of the school staff be notified of the label.

Caleb's over-three-inches-thick school file full of labels just got thicker. And so did our medicine cabinet. But we're ready to face this beast head-on. Because we have to be.

Some of these are from the strep throat so we can do away with them shortly.

Another label Caleb has earned: model patient. He handled all that was asked of him like a superstar! The phlebotomist wanted Caleb to do advertisements for the lab when he enthusiastically declared that his blood draw was "no big deal."

An EEG is painless but certainly uncomfortable. Caleb did great while they methodically measured his head and then attached about 20 electrodes. They then wrap him up like a mummy.

The test is divided into three main parts: a strobe light section, a blowing-forcefully-on-a-pinwheel section, and a sleep section. With the strobe light, they place it inches from his face and turn it on in increasing frequencies and durations. With the pinwheel he has to bring himself near to hyperventilation by blowing continually for three minutes. That doesn't sound long, but it sure looks like torture. And finally, Caleb had to fall asleep so his brain waves could be monitored while sleeping. The test requires sleep deprivation, so in preparation, Caleb had to stay up until 1:00 am the night before the test and be awakened at 5:00 am morning of. So in other words, Mom and Dad were also sleep deprived.

Here's our champ, giving the thumb's-up. Cute, cute boy. If you look closely, you can see the indentations on his forehead and faint red marks from measurements. The tech did a pretty good job cleaning his hair for him. It doesn't look too goopy.

Caleb's first EEG, one year ago, was "minimally abnormal." It didn't warrant medication at that time. This year's results were still somewhat minor but "more abnormal" than last year and when coupled with a second, much larger seizure, medication was recommended. This time, the greatest abnormalities in his brain waves were noticed while he was sleeping. Maybe that explains why both of his seizures have happened after waking abruptly from a deep sleep.

Caleb has been started on an anti-seizure drug called Trileptal. We are on a schedule to build up his medication over the next two weeks. When he reaches full dosage, he'll be taking six pills a day. He's going to get good at swallowing pills!

The doctor stated that our odds of a repeat seizure are about 1 in 5 while on the medication. If we didn't medicate him, our odds would jump to a 70% chance of recurrence. If he can go two years on the meds without a seizure, he would repeat the EEG and if abnormalities have healed, he could be weaned off the medications. In other words, we have reason to hope that he could grow out of this label.

But until then, we've made sure all appropriate prescriptions are filled, a new days-of-the-week pill box purchased, and all the proper paper work distributed through the schools. The emergency plan is in place. Now let's just hope and pray that we never have to use it.