There’s No Guarantee in the World of Dravet Syndrome

There’s No Guarantee in the World of Dravet Syndrome
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Today a mom asked me if I thought she should try Fintepla (fenfluramine) for her child. They had just started a new medication and weren’t seeing any results. I told her I thought it was worth the try, but not to take Austen’s good experience as proof that it will definitely work with her child. There’s no guarantee that it will work for her kid as well. We’ve been there, done that, and failed to see success with many antiepileptic medications.

In December 2018, I found myself desperate. We had reached a point where cannabis did not seem to be helping with the frequency of Austen’s seizures any longer. We had agreed to add Depakote (divalproex sodium systemic) a few months before, but absolutely nothing had changed. In fact, her seizures still seemed to be getting worse.

The Fintepla trial was still in a blind study, so we did not feel comfortable pursuing it. Instead, I prayed about our next step and eventually agreed to try Onfi (clobazam) in a last-ditch effort to see some progress.

It didn’t happen. Her seizures got a bit shorter, but they just continued to pick up in frequency. In between summer 2018 and summer 2019, we went from 1-2 tonic-clonic seizures a month to 7-10 tonic-clonic seizures a day.

In what was probably my lowest point in our fight with Dravet syndrome so far, I remember sitting on my couch, holding a postictal Austen in my arms, and just bawling. We had resorted to her rescue medication once again, the oxygen tank was humming in the background, and I was begging God to just make it stop. How is it fair that anyone could go through something like this, that anyone could watch their child go through something like this?

The hospital could not help us because there was nothing they could do as long as the seizure eventually stopped. Other parents were suggesting different medications and therapies, but no matter what we tried nothing stopped the seizures. Even more heartbreaking was watching her decline. Suddenly she was back in diapers full time, unable to attend school, and barely able to recall songs she had memorized long before.

At that point her doctor reminded me that Dravet syndrome is a spectrum. Some kids are affected worse than others. Some medications work for one kid when they make the disease worse for another.

It’s a guessing game. It’s not fair, but it’s our reality.

We are very fortunate that in summer 2019 Fintepla moved to the compassionate use phase of the trial. After three months of tweaking, we found a dose that worked for Austen. She went for 7-10 tonic-clonic seizures a day to maybe once a month. It’s not perfect, but it’s just about as close as you can get with Dravet syndrome.

She’s out of diapers again, participating in homeschool, and probably has more songs memorized than I do. Fintepla gave Austen her life back when nothing else really could.

No medication is a guarantee with our children, that’s just the hard truth. I always preface with that before telling someone how great Fintepla has worked for us. But there’s always the chance that it will work, and that’s a chance worth taking.

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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.

Meagan joined BioNews in 2020 as a columnist for Dravet Syndrome News. Before joining the BioNews team Meagan was a freelance writer for six years, and she also runs her own blog www.athomewithmeagan.com, where she talks about homemaking and parenting. Meagan lives in Colorado with her husband and three children. Her youngest daughter, Austen, was diagnosed with Dravet Syndrome in May of 2016 at one-year-old.

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Meagan joined BioNews in 2020 as a columnist for Dravet Syndrome News. Before joining the BioNews team Meagan was a freelance writer for six years, and she also runs her own blog www.athomewithmeagan.com, where she talks about homemaking and parenting. Meagan lives in Colorado with her husband and three children. Her youngest daughter, Austen, was diagnosed with Dravet Syndrome in May of 2016 at one-year-old.

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