One Step Forward, Another Step Backward

Austen, my 6-year-old daughter with Dravet syndrome, went to the neurologist at the end of September. It was the first time we’ve seen her in the office since the COVID-19 pandemic started.

The appointment went smoothly, and Austen barely cried during her lab work. We were so excited when her doctor decided that Austen was doing well enough to start weaning off Keppra (levetiracetam), currently her only anti-seizure medication besides Fintepla (fenfluramine). She has been taking Keppra since she was 6 months old.

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We’ve tried to wean off Keppra several times without success, though we did lower her dosage. At 10 months old, she was taking over 300 mg twice a day, and for the past few years, she’s been taking 160 mg twice a day.

We are weaning slowly due to her history with Keppra. But I am confident we can do it, since we were able to wean off both Depakote (divalproex sodium) and Onfi (clobazam) in the past without breakthrough seizures.

Of course, I knew a seizure could happen at any moment. At the time of Austen’s appointment, it had been over four months since her last big one.

The seizure occurred when Austen was halfway through the wean and a stomach virus decided to enter the house. It passed from her dad to her 13-year-old sister, Addi, before finally hitting Austen. In true Austen fashion, the seizure was her first sign of illness. Thankfully, she recovered quickly and is doing well now.

A month later, and we are not only back on the Keppra wean, but by the end of this week, she will be off the medication completely.

I am writing this several days before Halloween, and Austen is super excited to be a unicorn and go trick-or-treating with her siblings. We plan to hit up our favorite historic neighborhood, which has a history of handing out full-size candy bars.

I’m not sure why, but I’m more on edge about weaning off Keppra than Onfi or Depakote. Maybe it’s because we have tried, and failed, to wean off it in the past. Still, through it all, Austen has shown me yet again just how resilient she is. Even when Mama’s nervous, she keeps chugging on. She never lets the hurdles thrown in front of her trip her up. She just keeps pushing forward.

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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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