Seizures - The Great Unknown

 

One of the most helpless feelings in life is being next to someone having a seizure and knowing that you can do little or nothing to help them in this situation. Their brain has just starting "misfiring" and all you can do is watch them and try to provide for their safety. If the seizure doesn't stop on its own then medical intervention is necessary.

In 2015, 1.2% of the total US population had active epilepsy. This is about 3.4 million people with epilepsy nationwide. According to the latest estimates, about 0.6% of children aged 0-17 years have active epilepsy. Think of a school with 1,000 students—this means about 6 of them could have epilepsy. (Source CDC) Elise has a form called Intractable epilepsy. This is when seizures can't be controlled by medicines. About 1 in 3 of people with epilepsy have intractable seizures. In the US that means about 1.15 million people have this form of epilepsy.

For someone like Elise, seizures are a daily part of her existence. On a good day she might have 25 seizures (give or take a few on any given day). On a particularly tough day, she can easily have more than 100 seizures during the day. Her seizures are generally short right now lasting about 3-5 seconds. She has a few unusual seizures that might last 15-30 seconds but that is not the norm. Elise's seizure struggles really come in the form of her "clustering" her seizures together. For example, she had a stretch last night where she had 30 seizures clustered together in a 45 minute period. So, about every minute and a half she was having another seizure. It is pretty hard to function when your brain is constantly resetting itself every minute and a half.

Most of the time we can manage (whatever that means) Elise's seizures at home. We have a set regimen of medicine to give if we feel that the seizures are starting to spiral out of control. The struggle usually comes in figuring out when she is starting to spiral out of control. It is not unusual for her to have a tough 10 minute or 20 minute stretch on any given day. With that, we don't generally give a lot of thought to something being wrong until we are in the 30 minute or more time frame. Or, when she is having a cluster of 20+ minutes for multiple hours in a row. It is a balancing act and not clear cut at all.

About a year and a half ago we began to venture into uncharted territory........puberty. Puberty and hormones are challenging enough in a neurotypical child. The challenge is off the charts for someone with brain issues. The constant disruption of signals from the brain to the varying vital organs is fascinating if you are in to the type of thing. As the parent however, I tend to find it more disheartening than fascinating. Just as we have over the last 11 years of learning to navigate epilepsy, we'll get through it. But, it will not be without a ton of questions, changes and challenges for everyone. Just like cancer, seizures suck! We are fortunate that Elise is really tough and has the sweetest of dispositions. Trying to find her relief and comfort among the challenges is going to be a life long endeavor.