My Daughter Joins the 6-month Club, and Other Good News
It’s been a long time since I’ve written — too long. But I have some amazing news to share.
When Austen, my 7-year-old with Dravet syndrome, started having seizures, it put us on a roller coaster of doctor appointments, hospitalizations, new medications, and hoping against all hope that somehow things would get better.
Every three months, like clockwork, we have taken Austen to children’s hospitals for a checkup. Neurologists, lab technicians, dermatologists, cardiologists — Austen has seen them all. I thought this was just another piece of our puzzle, how the rhythm of our lives would forever go. But when we saw Austen’s new neurologist in June, he gave me some news that threw all of that away: Austen was ready to join the “six-month club.”
The six-month club is my nickname for those who make the transition from having appointments every three months to having them every six months. Austen isn’t sick enough to need to be seen quarterly anymore. She is healthy enough to go twice a year instead!
This means I get to cut out two six-hour trips each year, and Austen gets to spend less time in hospital waiting rooms and more time being a kid.
Our experience with seizure control medications
I’m happy to say that Austen hasn’t had another seizure since she had the flu in March, so it seems her new Fintepla (fenfluramine) dosage is working well. In terms of time between seizures, it’s not a new record quite yet, but we’re inching toward it.
Although the reality is that Austen could have another seizure at any moment, I’m trying to be optimistic. If you’ve been reading my column for a while, you’ll know that’s a hard thing for me to do.
The other week, Austen celebrated her third anniversary of taking Fintepla. What a wild ride it has been. At first, I didn’t have any faith that the medication would work. So many others had already failed her, and at the time, she was having seven to 10 big seizures every day. Before Fintepla, the last medication we tried was Onfi (clobazam). It helped to stop her seizures from reaching epilepticus status, but it didn’t reduce the number of seizures she was having. And we hated the side effects Austen experienced.
When Austen started Fintepla, I remember saying that I’d be happy if we saw any reduction at all in her seizures. While she had gone several weeks without one in the past, her best pattern type was every three weeks. At that point, I would’ve been happy to see her go back to seizing once a week, or even once a day. Any improvement is a success in my book.
I never imagined the success we’re seeing now, though. As of this writing, Austen has gone four months without a seizure. Even if one happens as soon as I finish typing, I’d still be happy with how far she’s come. After she was born, Austen went 178 days before having her first seizure at nearly 6 months old. Since then, her record for time between seizures is 167 days. Both are records I’d like to break, and I’m starting to have faith she can do it.
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