Resetting the clock on my daughter’s stretch of seizure freedom

Fourteen months, or 425 days. That’s how long my daughter was free from status and tonic-clonic seizures.

For most people, that doesn’t mean anything, but for someone with Dravet syndrome, seizure freedom of that length means everything. For over a year, my 10-year-old, Avery, didn’t experience any seizure activity lasting longer than a few seconds. That meant no 911 calls, no rescue medications, no oxygen tanks, and no ambulance rides during that time.

However, on Tuesday of last week, my phone rang, and I dropped everything I was doing to sprint down the hallway of the school building where I work to get to the elementary school where my girl was seizing on the playground. Ten minutes later, the tonic-clonic seizure stopped, but her vitals were all over the place, and her breathing had grown worryingly ragged.

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Thirty minutes later, we were loading an ambulance headed to the closest hospital, where we waited for hours. First, we waited for a chest X-ray and lab results. Four hours later, we were waiting for her vitals to normalize and for some semblance of Avery’s baseline to return.

Seven hours later, after all the waiting, IV fluids, Tylenol, steroids, breathing treatments, and rest, we were handed discharge papers and sent home, exhausted and overwhelmed. While Avery was still very much not herself, there was nothing more the hospital staff could do, and we were ready to rest and recover at home.

Recovering from the physical and emotional trauma

Seizures are a normal aspect of Dravet syndrome. In fact, they are often the first symptom to emerge in young children with the condition. Seizure freedom is generally what we strive for as parents and caregivers. While many other symptoms and struggles accompany the diagnosis, I’ve found that if Avery’s seizures are under control, everything else gets a little better.

For her, prolonged seizure freedom comes with fewer behavioral issues, improved speech and communication, and better overall development and cognitive health.

These 14 months of seizure freedom have been a reprieve for Avery’s brain and body, but also for our family and my momma heart. It has given us a break from the trauma and fear.

Last week, I was quickly reminded of how traumatizing seizures and their aftermath can be for those present. I had forgotten how physically, emotionally, and mentally draining it is to hold your child while their oxygen drops, communicate with first responders, pray they take that next breath, and hope their brain and body won’t be too damaged.

Last week, the count started over. As I write these words, Avery is four days seizure-free. Her body and brain are recovering well. She is an incredibly resilient creature.

My heart and mental health are also recovering, though I often seem to lag behind Avery, trying to process a reality my heart is never prepared for. I am being kind to myself and giving myself the grace to recognize I need time to recover, too.

While we are never ready for a seizure, I am truly grateful for those 14 months and hopeful for another long stretch of seizure freedom. As always with Dravet syndrome, we simply take things one day at a time.

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.