May 23rd, 2023 was a day of frustration and despair for me. The unpredictable nature of seizures has left me feeling helpless and overwhelmed. My son has been battling seizures for the past two years, and just when I thought we would get at least a month or two without a seizure, we were hit with another blow today – his second seizure in just 10 days. This sudden increase in frequency has shattered my hopes and amplified my fears.

In the past, we have experienced long breaks, where the seizures seemed to be reducing in frequency. We dared to believe that his gluten-free diet and anti-seizure medication were the perfect combination, a remedy that would bring him relief. With cautious optimism, I began to let go of some of my constant vigilance. I allowed him to attend his micro school for a few hours a week, even leaving his bag with rescue medication in the car during our grocery trips. It felt like a small victory, a glimpse of normalcy in our lives.

But today’s events have turned my world upside down once again. The seizures, with their unpredictability, have reared their ugly head in a more severe form. The nasal rescue medication, which had been our lifeline during previous episodes, failed us three times in a row. The seizures lasted longer, accompanied by distressing symptoms such as difficulty breathing, convulsions, extreme vomiting, and non-responsiveness. Desperation set in, and we had no choice but to dial 911 each time. It was during our last visit to the emergency room that we were introduced to Diazepam rectal gel, that quickly put an end to today’s seizure. Relief washed over me, and I couldn’t help but express gratitude for being spared an ER visit.

The rollercoaster of emotions that accompanies each seizure is exhausting. I find myself constantly on edge, continuously on guard for any signs of an impending episode. Fear has gripped me tightly, making it difficult to trust even those closest to me with my son’s well-being. I am afraid to leave him alone, afraid to entrust his care to loved ones, afraid to take the simplest of vacations, and even afraid to bring him to the park. The uncertainty of this new phase of seizures has stripped away my confidence and left me feeling ill-equipped to handle the challenges that lie ahead.

To add to my frustrations, I have also found myself questioning the support we receive from his neurologist. It feels as though we are engaged in a game of cat and mouse, constantly adjusting his anti-seizure medication in hopes of finding the magic dosage that will grant him long-term relief. Each increase in medication brings with it the expectation of a seizure-free period, but it seems that the seizures are always one step ahead. My son is growing, and the seizures seem to be growing right along with him. How can we ever hope to achieve two years of seizure-free bliss when the seizures persistently outsmart our efforts?

In moments like these, it’s hard to remember that frustration is a natural response to the unpredictability and challenges of epilepsy. I have been dealing with this on my own and with my husband from the beginning, but I think it’s time for me to find additional support via a group for parents of children with epilepsy. I am realizing more and more that it’s crucial to seek support from a network of understanding individuals who can offer guidance and empathy during this difficult journey. I am also thinking of exploring more alternative treatment options, such as dietary adjustments or therapy. They may also provide additional avenues for managing seizures.

Although I am emotional and frustrated as I write this blog, there is a part of me that is still optimistic. While the road ahead may seem daunting, it’s important for me to maintain hope. Giving up hope means giving up on my son, and I could never do that. I may not be happy with his current medical providers, but I know medical advancements are continually being made and new strategies for seizure management are being explored. I just need to keep researching until I find the right doctors and epileptologists who can help my son. With continued education and the unwavering love and support of those around us, we can navigate this uncertain terrain and strive for a brighter, seizure-free future. Let’s keep chasing progress together.

All the best,
Shelly-Ann