According to my records, I’ve witnessed 18,737 seizures—a remarkable number even for a medical professional. But I’m not a doctor. I’m a mom.
I remember the first seizure vividly. I awoke to the sound of choking coming from the room of my two-year-old daughter, Savannah. I entered to see her tiny little body jerking about violently in her bed. My husband and I didn’t recognize this as a seizure—we thought she was choking. I’ll never forget the words of the paramedic that night who said, “her airway is clear, but what you just described sounds just like a seizure.” That was our harsh induction into the world of epilepsy. Living in that world has been equally harsh.
Savannah’s seizures worsened despite treatment. By age three, she was having multiple types of seizure and had to wear a helmet. By age four, she began to have clusters of seizures that would last for hours unless drug intervention was used. By age five, she was seizing dozens of times a day, and delays in her development were becoming apparent. Savannah was diagnosed with Lennox-Gastaut Syndrome, a severe epilepsy with a poor prognosis. Despite dozens of tests though, no cause for Savannah’s seizures was ever found, and with no family history or precipitating event, we were mystified.
It has been devastating to watch what epilepsy has done to my child. With over 18,000 seizures in eleven years, it has definitely left its mark. At thirteen, Savannah is the developmental age of a four year old. Her face bears the scars from falls caused by seizures, and her heavy eyes tell of the many medications she takes to “control” them. Due to these medications, she drools incessantly, is frequently constipated, has overgrown gums, staggers like a drunk, struggles to find words, and sports a not-so-feminine mustache. The first thing I do every morning before getting out of bed is place my hand on Savannah to see if she’s breathing. With frequent tonic-clonic seizures during sleep, I fear that one will claim her life, and one day she will be gone.
Because of her developmental delays, Savannah doesn’t fully realize how her life is different because of epilepsy. She has a childlike happiness, with an infectious giggle and the most loving soul I’ve ever met. But I know, and it torments me. She will forever be dependent on others for her well-being, and is prone to being taken advantage of by the dishonest. She must continue to take anticonvulsants despite side effects, because the alternative is much worse. She will continue to miss out and be excluded because of unrelenting seizures. And I will continue to live in fear of her death, but I expect that I will see it in my lifetime. What I want more than anything is a cure.
Sadly, there is no cure for Savannah. Perhaps, with maturity, she may stop seizing one day, but the damage is done. If only there had been something to help her in the beginning. My hope is that someday other children with epilepsy and their families won’t have to live the ordeal that we have, and so I’ve have chosen a career as a researcher.
During those early years of seizures and utter confusion, I began to read all I could about epilepsy. The papers I was reading were too advanced and I thought I needed to go to college to take some English classes. But, I soon learned that it wasn’t English I needed, but science. So I took my first science course and became completely enamored with the subject. I attended classes while my children were at school, and stayed up late to study.
Eight years later, I’m a third year graduate student working towards my PhD in neurobiology. It is my ambition to study epilepsy and be a part of the team of researchers looking for the cures.
As both a mom and a scientist, I have a great respect for CURE. An organization that recognizes the ravage of epilepsy and takes an active role in the search for help, CURE has inspired hope among parents and dialogue among researchers about curing this exasperating disorder. CURE’s impact has, thus far, been significant, and I am honored to be a part of this group.
UPDATE: It’s been 6 years since we first shared our daughter Savannah’s story with CURE. For 5½ of those years, Savannah continued to get worse. The recorded 18,737 seizures we witnessed Savannah have between 1995-2006 increased to a heartbreaking 27,571. Savannah continued to regress and in addition to always having to wear her protective seizure helmet, she also had to wear diapers again. Epilepsy is unrelenting and brutal.
About 5 months ago, things changed. We learned that Savannah had genetic mutations in numerous calcium channel genes and we knew from previous experience that calcium supplements made her seizures increase substantially. Therefore, her doctor wondered if using a calcium channel blocker might help her... and it did. For over two years Savannah would go into non-convulsive status epilepticus every 2-3 days and would require rectal diazepam to stop these non-stop seizures. In the last 5 months, Savannah has only needed emergency rectal medication 3 times. We are amazed! For the first time in more than 10 years, a medication is helping stop Savannah’s seizures. We are cautiously optimistic that our days of recurrent status epilepticus are behind us and we are hopeful that perhaps trying other types of calcium channel blockers will one day make her seizure-free. If you’re going to dream, dream big!
We have never given up the fight to stop Savannah’s seizures – and we never will. The real war on epilepsy for those living with uncontrolled seizures, like Savannah, isn’t being waged at home. It’s being waged in the research lab where scientists are hard at work looking for the cures. That is where I want to be. And after 12 long years of college, I’m finally there. I earned my PhD and I now work in an epilepsy research lab at UCSD. I will be as unrelenting in my search for a cure as epilepsy has been on my child. One day, you, me, everyone in the CURE family, and the millions of people worldwide living with epilepsy will conquer this disorder and no child will ever again be robbed of their future by seizures. I’m looking forward to that day.
For more on Tracy and Savannah, click here.
Tracy Dixon-Salazar has joined CURE’s Research Board
and was involved in the selection of 2007 grants..