Jul 29, 2010
My nephew Alex is 6 years old and has suffered terribly with epilepsy since before two years of age. There were some odd signs that something was amiss since the day he was born. He would occasionally "space out" for a few seconds and then go back to being his typically curious and active self. No harm done. The pediatrician thought nothing of it so life went on.
Just before he turned 2, a rash of grand mal seizures struck. He was hospitalized for two weeks with uncontrollable and constant seizure activity. I can't even count the number of times he's had to be an inpatient. This poor kid's body and mind have been ravaged by seizures and medication so badly that his physical and mental growth have been noticeably retarded. Even worse, his seizures include drop attacks. They hit with no warning whatsoever and the risk of physical injury is high. Through it all, Alex has remained Alex and he takes it all in stride. His sunny personality is fully intact and he still gets into the usual trouble that little boys get into.
The doctors have tried meds, a vagus nerve stimulator and protective devices such as a helmet to deal with the drop attacks. EEG testing shows constant, generalized seizures so there is still no telling exactly what area of the brain is shorting out. There was some improvement with meds a couple years ago, but now even meds aren't slowing the seizures. I can't tell you how heartbreaking it is to see what epilepsy and meds both have done to this child.
The only hope left for Alex to live a normal life is brain surgery called a corpus callostomy. The surgeon will sever the corpus callosum which is the area of the brain that allows the two halves to communicate. About 10% of patients are cured outright with another 25% showing significant improvement. Results vary for the remainder, but most patients have less severe seizures since only one half of the brain remains affected. A second surgery may be necessary if followup EEGs can identify the specific source of the brain in which the seizures reside.
He'll be in the hospital for at least 3 days. If the surgery results in physical stroke-like symptoms, he'll have to stay in the hospital for a few weeks of rehab. I understand this surgery is only performed on young children while it is still possible for the two brain hemispheres to learn to communicate through the cerebral cortex. That process apparently does not occur in teens or adults, so Alex is up against a time limit. It's now or never.
This little boy has suffered so much in his short life and the decision to do the surgery has been agonizing for his parents. Please keep Alex in your prayers for a successful outcome of this surgery on August 2.