Today our family all wore purple. March 26th has been named the Global Day of Epilepsy Awareness. People across the world are asked to wear purple to show their support for spreading awareness about epilepsy. A year ago, March 26th, purple, and epilepsy were just another day, another color, and a disorder that happened to other people.
However, last June, all of that changed for the three of us. I can still so vividly remember holding Bex the first time she had a spasm. It was first thing in the morning, it was quick, and I thought maybe she was really hungry and having bad hunger pains. A seizure would last longer, her eyes would roll back in her head, and she would lose consciousness, right? Two mornings later, Chris was working from home and I called him into the kitchen to watch her have a spasm in her high chair. It was honestly the first time I even mentioned the abnormal movements to him because I wasn't quite sure how to even describe what she was doing. After I had observed this pattern of movements several times, my gut was just telling me that something wasn’t right.
Epilepsy has been on my mind a lot over the last month due to our neurology appointment at the beginning of the month followed by the sleep deprived EEG. We met with Bex’s neurologist again on Monday to talk about her most recent EEG and treatment going forward. It was a good meeting. Bex has had three EEGs post-initial diagnosis (two last summer and one earlier this month). He qualified them all as “good EEGs”, especially when you compare her to other kids who have had IS. I feel so thankful every day that Bex is one of the lucky ones who responded so well to treatment.
Based on her response to treatment and her EEGs, her neurologist has recommended that we start weaning her off Topamax, her anti-seizure medication. This decision is kind of like opening up Pandora’s box of emotions. I have hated that Bex has had to take a medication like this at such a young age. There are many days that I have been frustrated that this medication might be suppressing her appetite making meal times a battle, interrupting her sleep, or just making her feel icky. Therefore, there is a part of me that is excited that she is doing well enough that taking her off this medication is a possibility.
However, as much as I have hated Topamax, it has also become kind of like a security blanket for me. We might have to deal with some frustrating side effects, but it’s been working. Bex has been progressing developmentally and remained seizure free. As much as I hate the side effects, I hate the idea of seizures returning even more. Chris and I expressed our concern about seizures returning to the neurologist because IS kids are at an increased risk to develop other seizures as they get older. We would hate to see seizures return and cause her to lose all the progress that she has worked so hard to make. Of course, the neurologist can’t predict the future any better than we can. However, he did explain that it will be a very slow weaning process. By weaning her slowly, the hope is that if seizures do return they will be very mild at first, so we could readjust medication before they would impact her development.
We started tapering her medication on Monday night and it will take three months for her to be completely off the medication if all goes according to plan. It has been an exciting and nerve-wracking step to take. I have been watching her closely this week. As I watched her fall asleep last night, she twitched in her sleep and I felt my heart skip a beat each time. If she starts to focus intently on something, I find myself making sure I can interrupt her focus to make sure it is not an absence seizure. Chris has been traveling this week and when he checks in, the conversation at some point usually involves him asking if I have noticed anything different with Bex. Thankfully, this week she has done well with the first decrease in dosage.
Next year on March 26th, I hope that epilepsy is a distant memory for our family, not something that is part of our daily conversations. However, regardless of what the future holds for Bex, I do know that raising awareness about epilepsy will remain a cause that is near and dear to our hearts.
In honor of Purple Day for Epilepsy Awareness, Chris and I encourage you to take a minute to read the information about West Syndrome that we have posted on our blog or educate yourself about epilepsy by visiting www.epilepsy.com. Epilepsy affects 1 in 26 people in the United States at some point in their lifetime, so it is a lot more common than I realized at this time last year. Hopefully, one day with advancements in research and treatment, that number will be much smaller!