A caregiver’s evolving perspective on seizure-control medications

Note: This column describes the author’s own thoughts about various seizure medications and therapies. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Early on, when Avery, my daughter with Dravet syndrome, started having seizures, I was scared of their outcome, but I was equally terrified of the medications that treat them. Seizure-control medication felt like a faulty bandage that I didn’t want. This was mostly because I didn’t want a bandage at all; I wanted a long-term solution.

In those early days and months, I was constantly seeking answers to the questions: What might be causing my infant’s seizures? And how can I make them go away? I wanted to fix my daughter’s brain.

While my research revealed the frightening reality of seizures, it also taught me about the potentially harsh side effects of medication, such as fatigue that prevented patients from functioning, brain fog, mood swings, and intense behavioral issues. There were also long-term risks, including cognitive delays, severe mental health concerns, and even cases of organ failure.

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The more I read and researched, the more strongly I felt that prescription medication was not the solution.

So we tried everything else. We tried a whole-food, sugar-free, preservative-free, MSG-free diet. We tried having my daughter drink water high in silica and other minerals to help detox her brain from any potential heavy metals. We tried essential oils. We tried CBD oil and worked diligently to get medical-grade cannabis legalized in our state.

All these things seemed to help for a little while, just long enough to give me hope that we had found an answer. However, after days or weeks, we would lose seizure control again and be back to square one.

Finding a balance

As Avery’s seizures persisted, I eventually recognized that medication would be necessary. While I hated the potentially harmful side effects, I also hated the possible outcomes of poor seizure control. I eventually recognized that we would have to find a balance between medication, seizure control, and quality of life.

But that also meant I had to consider how both the seizures and the medications were affecting her. Balancing all these realities makes for a pretty complex equation.

I realized that giving my daughter the best life might mean using multiple medications, continuing natural care, and being mindful not to overmedicate her in a way that could be harmful. Early on, I’d thought there could only be one solution, but as time went on, I became more convinced that it was about finding that magical, mysterious combination of solutions that worked best for some reason.

Avery, now 10, has tried and failed multiple medications over the years. We have started new prescriptions and weaned off others. Sometimes we had to decide that the risks or side effects of a specific treatment were not worth the benefits we were seeing.

When Avery was old enough to be recommended for a vagus nerve stimulator (VNS), we opted to have it implanted right away. After a couple years of adjusting its settings, we have finally found a sweet spot that has given Avery lengthy seizure freedom.

We mostly credit the VNS for Avery’s seizure control, but we still understand the importance of her medications, and we still value the natural treatments we have tried. It truly is a puzzle with numerous working pieces that must be placed together for the best benefit.

After 10 years, I recognize that no two Dravet journeys are the same. When it comes to treatments, I’d encourage other caregivers to go with their gut and fight for what they believe is right for their child, while also keeping an open mind about what may work. It’s important to find the balance between risk and benefit that works for you and your specific situation. And it’s OK to have an opinion, and then change your mind.

Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.