Our family’s experience with vagus nerve stimulation for Dravet seizures
As a caregiver, I believe there is power in sharing our experiences
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Note: This column describes experiences the author’s daughter has had with vagus nerve stimulation. Not everyone will have the same response to treatment. Consult your doctor about any potential therapies you may be considering.
When my daughter, Avery, began having seizures at 3 months old, I knew we’d do whatever we could to try and prevent the seizures from continuing. At 10 months old, she had already failed multiple medications, which means those medications didn’t work to prevent or lessen the amount or length of her seizures. This is when we found out through genetic testing that Avery’s seizures were a result of Dravet syndrome.
Her newfound diagnosis led us to some different medications, which were designed to treat seizures specifically affiliated with Dravet syndrome. When those medications failed, we tried everything we could think of to assist our daughter and prevent her from continuing to suffer through these terrible seizures.
We tried changing Avery’s diet. We tried essential oils, CBD, and the medical cannabis options available in our state. We entered a clinical trial for an investigational treatment that was promising for Dravet syndrome, but it required us to drive out of state every three weeks.
Some options seemed to help for a while, giving Avery a longer span of freedom from the seizures that plagued her. However, our hope in each treatment was short-lived, as eventually, the seizures always returned, bringing us back to a place of desperation for our child. When Avery was 5 years old, we began discussing a new option called vagus nerve stimulation (VNS).
As Dravet Syndrome News notes, “In vagus nerve stimulation, a device is surgically implanted into the chest like a pacemaker. A wire from the device is wrapped around the left vagus nerve. When activated, the device sends an electrical signal from the vagus nerve to the brain. Stimulation by the device is thought to regulate signaling in the brain, reducing the overactive signaling that causes seizures.”
The thought of Avery having something surgically implanted in her body was scary, but the idea of continuing to watch her endure those excruciatingly long seizures without relief was even more terrifying. After some research and talking to other caregivers of people who had a VNS placement, we began discussing it with our neurologist. Shortly after those conversations, Avery was scheduled with neurosurgery to have her VNS placement surgery.
While initially it didn’t seem like the VNS was making much of a difference, after the first year, we began to see seizure freedom that seemed to correspond with finding the sweet spot in Avery’s VNS settings. Although she still has seizures on occasion, she has experienced so much more seizure freedom since having her VNS placed. We are no longer constantly looking for a solution or changing medications and doses.
Some of the best parts of VNS treatment for us have been getting to try a new treatment without fighting to administer another dose of medication; no side effects; very little maintenance required; and most importantly, it seems to be working!
VNS placement surgery does, of course, have a downside: Nobody enjoys surgery! With that being said, the surgery and recovery were both minor for our daughter, and she bounced back very quickly. The other downside is that in the current VNS model, the battery will eventually deplete and require another surgery to replace that battery. After having the VNS for five years, Avery did require a battery replacement surgery. It was inconvenient, and like any surgery, a bit scary, but again, it was very minor.
I am certainly not a medical expert, but I do think there is power in sharing our experiences. As a caregiver, I have received so much wise advice from other parents who have walked this path ahead of me. While I realize a VNS placement may not be for everyone, our lived experience indicates that it can be a valid option for some individuals with Dravet syndrome. If you or a loved one are interested in learning, please discuss the issue with your medical team.
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.
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