Our Dravet Syndrome Journey Comes Full Circle

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by Meagan Cheney |

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When my daughter Austen, now 6, started having seizures years ago due to Dravet syndrome, it took us over six months to receive a diagnosis.

That period was a whirlwind of seizures, hospitalizations, doctor appointments, and phone calls to her pediatrician. We even switched hospitals when her original neurologist declined to test her for Dravet syndrome.

In March 2016, we were introduced to a second neurologist by a friend and fellow epilepsy parent. We were eager for a first appointment with the new neurologist, even after being told it would take six months. But then a phone call changed our lives: The neurologist had reviewed her chart, and instead of a six-month wait, Austen would be seen in six days.

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From our first visit to the Cook Children’s Health Care System in Fort Worth, Texas, we felt like we belonged. We felt listened to by the doctors and nurses, and we felt cared for. Austen’s diagnosis became official six weeks after that appointment.

Headed north

Three weeks later, we packed up and moved to Colorado. In the last six years, we’ve had an amazing experience in Aurora, at Children’s Hospital Colorado. Doctors and other staff have taken care of Austen during some of our scariest moments.

Austen has practically grown up within those hospital walls, where she went from a tiny 1-year-old baby to a sassy 6-year-old girl. Over the years, we’ve developed relationships with doctors, nurses, phlebotomists, and echocardiograph technicians who took the time to learn Austen’s quirks so that the tedious appointment process would be bearable for everyone.

Many staff members became like extended family. We were even on a first-name basis with some of the nurses, who helped us get through seizures, medication changes, and the times I wanted to give up. Sometimes they even went above their job description and just listened to me while I cried when things weren’t working out. But they were rewarded with hugs and happy tears when the results of medications like Fintepla (fenfluramine) were better than expected.

Going back to Texas

Leaving Colorado last December was a hard choice, particularly given our relationship with the staff at Children’s Hospital Colorado. But my fears about leaving were eased by the knowledge that I wouldn’t have to look far for a similar setting in Texas. We didn’t even have second thoughts about where to go for Austen’s care.

Funnily enough, our experience this time at Cook Children’s was similar to how it was six years ago. When I called in early March, I was told we might not get an appointment until July. But the neurologist noticed that Austen was being treated with Fintepla and got us scheduled within a few weeks. The neurologist wanted to make sure Austen didn’t miss any of the medication that is so vital to her quality of life.

While many things have changed over the years, the feelings I had during Austen’s latest appointment were the same. She loves her new neurologist, who seems very hopeful about her future.

Last Wednesday was five years and 10 months since we received the news about Austen’s diagnosis. We were terrified back then, and it felt like we were racing against time to keep her alive. We were desperate to do whatever we could to give her the best chance at a normal life, no matter how crazy it may have seemed.

We’ve now come full circle. We’re back in Texas and still trying to give her the best quality of life possible. But there is less desperation and a lot more hope in my soul now. I’m not as scared of the future anymore. Instead, I’m excited to see what the future holds.

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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