Epilepsy, or seizure disorder, is diagnosed when an individual has had 2 or more seizures…ever. Often the cause of epilepsy in an individual is unknown, in our case, it’s due to brain injury. Others can have hereditary epilepsy. A seizure is a sudden jolt of electricity in a person’s brain. Some seizures are hardly noticed, while others will completely disable a person for a short time. People who have had one seizure are more likely to have another if they have experienced some kind of brain injury. One way for a doctor to tell if one might have another seizure, or develop epilepsy, is to do an EEG (electroencephalogram: electro= electricity, encephalo= brain, gram= chart/reading). So, when you hear me talk about Sadie’s EEG, you know that it’s a way for her neurologist to look at her brain waves to determine the likelihood of continued seizure activity. In the NICU (neonatal/newborn intensive care unit), Sadie’s EEG showed continuous seizure activity, even when medicated with Phenobarbital and Keppra. This is why Sadie has continued her dose of Phenobarb upon coming home. However, her EEG done at 10.5 weeks showed no seizures, but a tendency for them. This probably means that Sadie’s brain waves on her EEG showed patterns that a person who isn’t prone to epilepsy wouldn’t have. According to research done by epilepsy.com, .5%-2% of people will develop some kind of epilepsy during their lifetime, about 2.7 million Americans have been treated for epilepsy in the last 5 years, and it occurs more often in men than in women.
The most common to develop epilepsy are children, and often in the first year of their life. How scary is that?! To bring your baby home, only to witness a seizure in him/her months later? I am so thankful we have never witness Sadie having a seizure. But in reality, anybody can develop epilepsy. Up to 70% of children with epilepsy can find relief in medication, however, they often experience side effects of these medications. I also read on epilepsy.com that about 80% of people treated for seizures with medication will be seizure free for at least 2 years, many never have another seizure again. This, in children, is referred to as “growing out of seizures.” Of course, this is more likely to happen when there hasn’t been an assault to the brain and if there has been a normal EEG…that’s 2 strikes against Sadie. However there’s still time, she’s only 4 months old!! Obviously the longer one goes without a seizure, the more likely it is they will be seizure-free in their lifetime. For about 30% of these people, being seizure free means continually taking medication to control their seizures. Epilepsy.com says that many neurologists will consider ending medication once a person has been seizure free for 1-2 years, however, many moms of babies with HIE say their babies are weaned down from the phenobarb between 4 and 6 months. This is what I’m pushing for.
Even if it is confirmed that Sadie has epilepsy, it shouldn’t effect her life expectancy. In general, seizures are hardly ever fatal. What may cause death in someone with epilepsy are grand-mal/tonic-clonic seizures for more than 30 minutes, choking and suffocating on vomit or water (if swimming or bathing), or going unconscious/falling somewhere that could be life threatening (ie. while driving, on a train or subway platform, or even walking along a busy street). Sadly, epilepsy is one of the most common neurological disorders among us, and it doesn’t fit in a nice neat package, it has a wide range of effects. Recently, more awareness has been created for epilepsy, and words like “seizure” generate less fear in our generation than they did long ago. Long ago, people thought of epilepsy as a curse from the gods, or that they had the power of prophesy. Many who would hunt witches looked for signs of seizures when identifying one. Later, those with epilepsy were thought to be psychologically disturbed and spent their lives in mental hospitals. But people with seizures were kept separate because people thought seizures were contagious. They also weren’t permitted to marry, have children, and some were even made sterile! Luckily, epilepsy continues to be studied and our knowledge of brain function has increased greatly.
People with epilepsy are often not cognitively challenged. Unless the seizures accompany a primary disorder that effects cognitive function (like HIE?), epilepsy will not cause a person to be smarter or dumber. Here is a list of geniuses that you may have heard of that have all been diagnosed with epilepsy on wikipedia. Here is another one sited on epilepsy.com of famous people with epilepsy. Epilepsy should not be a barrier to success. Although sometimes lifestyles need to be altered depending on the severity of the seizures. The biggest component of living a successful life with epilepsy (besides good medical care) is attitude. Parents of children with seizures should remember that it’s no different than other medical problems like diabetes or asthma, and that kids’ accomplishments need to be praised just like any child so that they can build good self-esteem. No matter what Sadie's outcome is with seizures or other disabilities, it is important to us that she 1. knows that she is loved, 2. knows that we will support her in anything she wants to do, and 3. we will always push her to do her best without comparing that to someone else's best.
There's a ton more information out there about types of seizures, EEGs, treatment of epilepsy, and seizure medications. I encourage you to do some more research, educate yourself, and keep reading about Sadie to see how her seizure disorder plays out.