The Best Christmas Present for a Dravet Syndrome Parent
For my husband and me, Christmas came early this year. Today, Dec. 22, marks four months of seizure freedom for our daughter, Austen. The only time she has ever gone this long without a seizure was before her first seizure at 5 months old.
In the beginning, when we were still on our journey to find out what was happening to our baby girl, I wasn’t sure if we would ever see a month without a seizure. When we finally got her diagnosis, I wouldn’t even let myself dream of it. The odds were too high against us. I even told her doctors that complete seizure freedom would never be our goal.
As time went on, we fluctuated with seizure freedom. We would go a week here, a month there, but never much more than that. For the longest time, we averaged three weeks between seizures, and I was comfortable with that. But slowly, things got worse.
By summer 2018, I was praying for a week without a seizure. By summer 2019, I was praying for a day. Each morning I woke up terrified, worried that SUDEP (sudden unexpected death in epilepsy) had taken her during the night or that today would be the day when the “big one” came.
It’s funny how things work, isn’t it? We put Austen in a Fintepla (fenfluramine) clinical trial as a last-ditch effort. I had friends whose children had great results with the medication, but for some kids, it didn’t seem to help at all. Because Austen had failed four antiepileptic drugs and had tried CBD and THC, I didn’t want to get my hopes up that this would help her. Still, we had to try.
It wasn’t instant. We had to increase her dose two or three times, but by September 2019, we noticed that she was seeing longer periods of seizure freedom. Anything was better than seven to 10 big seizures a day, so we were happy.
Then, the periods started to get longer. We saw a week without a seizure, then a month. I cried the first time that happened, because I honestly thought it wouldn’t ever happen again. On the day you read this, we will be celebrating four whole months of seizure freedom: 123 days.
In the past, I refused to talk about how long she had gone without a seizure, scared I would jinx it and bring one on. But things have changed. I am writing this column a week or so in advance of our celebrated date, because I know in my heart it will happen.
Four months. Four months. I just can’t believe I’m even typing this. This Christmas, I won’t be asking Santa for a pony or a new car. Four months is way more than I could have ever wished for. It is the greatest Christmas present ever.
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