themighty logo

Why Our Daughter’s Epilepsy Isn’t Just About the Seizures

One night in the fall of 2011 after my daughter, Esmé, was tucked into her crib, I climbed into bed, grabbed my laptop and opened YouTube. I took a deep breath before I started searching terms like “infant tremor,” “infant shaking” and then, finally, in what seemed like a betrayal of my daughter and my own carefully honed optimism, I typed the words “infant seizure.”

That night I watched video after video of babies having seizures. I watched so many that my husband begged me to stop. But I still watched, carefully analyzing each movement and reading the video descriptions and comments hoping to see the words, “We thought it was a seizure but it wasn’t.”

I didn’t find that.

What I found, instead, was justification of my fear that my daughter was having seizures.

During Epilepsy Awareness Month in November, I do my part to raise awareness. I share memes about what to do if you see someone having a seizure (don’t put anything in their mouth), figures about how many among us will be diagnosed with epilepsy in our lives (1 in 26) or will experience a seizure (1 in 10). These are important messages to share, but I often feel that there is something missing — the explanation that epilepsy isn’t just about the seizures.

I tend to feel it the most as the month draws to a close. I want to explain that epilepsy awareness isn’t about a month. It isn’t about wearing purple. It isn’t always even about the seizures. For us, epilepsy is also about the shadows cast by the seizures.

IHillary Savoie.1-001

The first time I knew my daughter had a seizure she was 8 months old. Esmé was asleep next to us. My husband and I both turned to her in time to see the tremors in her tiny plump hands and feet subsiding and a blue-ish tinge just leaving her face. It was so fast — fast enough that I questioned if it actually happened.

But deep down I knew. And that is how I found myself scouring YouTube that night.

Esmé had been unwell since birth. We had spent weeks in the hospital after severe aspiration pneumonia almost took her life. We were not unfamiliar with the world of terrifying medical things that can happen to a baby. We already had a neurologist, who we called the next morning. He assured us that it was very unlikely to be a seizure, but ordered a 30-minute electroencephalogram (EEG) to check her brain function “just to be sure.”

Several days later, the doctor told us that the EEG was normal. He confidently stated that Esmé was not having seizures. This was supposed to be good news, but it didn’t feel that way. Esmé was still having these trembling spells, several of which I’d recorded on my phone. I showed the videos to him and asked him to please tell me what they were. He watched the videos of Esmé trembling, turning blue, her eyes rolling up and to the left and pronounced it to be neurological reflux. He sent us on our way with instructions for Esmé’s gastroenterologist to get her reflux under control.

It wasn’t reflux, but it took almost a year, three hospitals, many new doctors, weeks of inpatient EEGs, five emergency-room visits and two 911 calls to confirm beyond a doubt that our daughter was having seizures.

During this time, the seizures came at least weekly and sometimes daily. The seizures would cluster together in one 24-hour period, knocking days out of each week where we’d do little more than lie in bed waiting for Esmé to experience or recover from seizures. The rest of the time we were terrified to venture far from home. Esmé lost skills: the ability to sit, to focus, and, most painfully, to say “Maman.”

Now, three years later, after trying seven different anticonvulsants — many of which lead to unbearable side effects — Esmé takes a very high dosage of a single medication that works. Her seizures have been dramatically reduced. She is thriving, in her own deliberate, beautiful and delayed way. This is a tremendous gift — one I am thankful for every day. However, it can’t be confused with her epilepsy being absent, with her being “all better.” Esmé’s epilepsy is always with us, even when the seizures aren’t.

Hillary Savoie.3-001

Epilepsy is about the seizures, of course. But epilepsy is also the anxiety I feel while I watch little tremors run through her body or her eyelids flutter in those fleeting neuro-like ways that suggest that her brain is struggling to maintain control. Epilepsy is about our bi-weekly hour drive to the compounding pharmacy that makes the only drug that works. Epilepsy is about giving my child three doses a day of a drug that I am indebted to, but that I also despise for the effects it has on my daughter. I have nightmares about being unable to attain this drug, but I worry daily that I don’t know where the drugs end and Esmé begins.

Epilepsy is wondering what damage has been done to my daughter’s brain, and what we could have spared her had we just gone to a doctor who listened to us sooner. Epilepsy is wondering if and when, as has happened with so many of my friends’ children, the drug will fail her.

Epilepsy is wondering when the seizures will come back, and what they will steal away from her this time.

These are the things I want people to understand from our story: Epilepsy is elusive and confusing. It isn’t always simple to diagnose or to treat. It isn’t easy to live with, even for individuals who, like Esmé, are currently “stable” but not “better.”

And, most of all, I want others to know there was a time that I didn’t think epilepsy awareness was important to me, personally. And then my daughter was diagnosed, another 1 out of 26. Trust me, when that “1” is someone you love, epilepsy awareness is every month. Every day.

Follow this journey on The Cute Syndrome.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.