Will She Outgrow These Seizures?

As I mentioned in my last blog post, Elise has a rare form of epilepsy called Lennox-Gastaut syndrome (LGS). This is a severe form of epilepsy that is "refractory", or resistant to anti-epileptic medications. Over her more than 10 years of being epileptic, she has progressed into this rare form that impacts her life on a daily basis. Ultimately this is brought on by an infection she contracted on her brain during treatment for cancer. This will not go away when she gets older. She will not grow out of it. There is no magic bullet. Most importantly, there is no cure.

Seizure disorders can be so varied among people and their treatment can range from simple to extremely complex. Over the years I can't tell you the number of people that have said something like, "my sister had a seizure once when she was 8 years old. It scared my parents to death. But she outgrew them and never had them again." That is a common story and the way many seizure journey's end. But, that is not the case for Elise.

A Typical EEG

The image on the left is what a typical EEG (electroencephalogram) reading looks like for the majority of people in the world. EEG's are done by putting electrodes onto various locations of a person's scalp. I won't get into how to read it too much. But, most importantly, you can see how the brain waves are very similar to each other across each wave pattern. Doctors read EEG's to determine if there is seizure (or abnormal brain) activity, what is occurring before and when something abnormal happens, and where in the brain this abnormal activity is happening. A lot can be determined in a relatively short reading.

A Textbook LGS EEG

During Elise's last hospital stay, the neurologist told us, "Elise's EEG is a textbook example of a Lennox-Gastaut patient." That has never happened to us before. Elise's struggles rarely ever fall within the realm of what doctors see in textbooks. Unfortunately, I don't have a screen shot of Elise's last EEG. But, I did find a "textbook example" on Google. You can see it on the right. Really, need I say more? Isn't it fairly self explanatory?

This image on the right is Elise's brain 24 hours per day 365 days per year. She is in a constant state of over activity in every area of her brain. "Most" seizures are localized to a specific area of a patient's brain. Elise's seizures are in all quadrants of her brain and are crossing over quadrants constantly. In periods of rest her brain activity looks like the EEG directly above this picture.

Seizure activity of an LGS patient

During an actual seizure, which happens several times per day, her EEG reading looks a bit more like the reading on the left. She can go through several minute periods where that increased activity in the middle of the image is most predominant. Then, after a moment of recovery (usually), her brain activity will resume back to the "textbook LGS patient" reading.

When Elise's seizure journey started about 11 years ago, we were told to expose her to as much as possible and treat her as we would any typical child. When a child develops seizures, there is always the possibility that the brain will "re-wire" itself and make new pathways to deal with any injury or insufficient activity. As a child gets older, the likelihood of that rewiring taking place gets less and less. The female brain is believed to not be fully developed until age 21 (it is older for males). However, when there is significant damage done to the brain, cognitive function certainly does not continue to improve to age 21 and beyond.

After so many years of trying SO many things, I am trying to come to terms with what the future holds for her. It has been made very clear in this past year that we will likely see more regression of skills and progression of the seizure disorder. Each hospitalization is a set back and an establishment of a "new normal" in her life and ours. There has always been a cause and effect relationship to her seizure activity. But, this past year has taught us that this will not always be the case in the future. Sometimes she will just struggle because she has LGS and the seizures dictate so much of her life.

Summer time generally brings a bit of better health for Elise. We are never quite sure what to attribute that to, but we'll take it. Like most of us, she doesn't really enjoy the Kansas heat in the summer. But, she enjoys floating in the pool on hot summer days and long naps when inside. In the grand scheme of things, those are not all bad attributes to have.