For so long, we avoided many things because of my daughter Austen’s seizures. We didn’t go on play dates, or to indoor playgrounds. We barely even went to friends’ birthday parties. I was always scared that she would get overstimulated and have a seizure.
It was horrible. You want your kid to be able to do “normal” kid things. But what choice do you have when those things could also result in a situation that would hurt her?
I wanted her to participate in all of these activities. But I also wanted her to be alive.
When Austen started Fintepla (fenfluramine) in July 2019, I didn’t let myself even think about what we could do if Austen became seizure-free. We were having so many seizures at that point and had failed so many medications that Fintepla didn’t seem likely to work, either.
But it did.
Austen’s seizure frequency decreased to once a week. Then once every two weeks, then once a month.
Now it has been more than five months since Austen’s last tonic-clonic seizure. For the first time in her life, I’m willing and able to let her branch out and do some normal kid things.
Last weekend, Austen’s aunt invited all three of my kids over for a sleepover. When I asked if she was sure she wanted Austen, too, she didn’t hesitate to say yes. She’s dealt with Austen’s seizures before and has administered her medications. Her children wanted Austen to stay as well.
I admit that I had to take some time to think about it. What if her next seizure happened over there? I knew her aunt could handle it, but could I handle not being there?
My husband was optimistic and convinced me to let it happen. When we told Austen she was having a sleepover, she was over the moon. In fact, like many things Austen starts to obsess over, it was all she talked about for days.
I might have cried a little bit as I kissed my baby girl goodbye that night. I texted her aunt several times more than necessary to check in on her. She had some issues sleeping through the night, but she made it.
The next morning when I went to pick her up, Austen didn’t want to come home. She loved it, and keeps asking when she can stay again.
As I write this, I am crying. An event that is such a tiny milestone in many kids’ lives is so big for my girl. She has no idea how big of a step this was for her, or for me. But we did it.
God willing, Austen will soon celebrate six months of seizure freedom. Next year, she will hopefully be able to return to a regular school experience.
For once, I can look forward to classroom parties, field trips, and experiences that her classmates don’t think twice about.
No longer do they feel like obstacles we have to wind our way around. Instead, they are adventures we can tackle together.
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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