Interview with Christine Russell Janis on Navigating Her Child's Epilepsy
By my fourth child I had expected to know most things when it came to parenting and caring for young children. It was 2021 and we were living in Paris. As was the norm, young children had been sheltering in place for the past year and a half. Once we began in-person learning again, our household was hit hard by almost every infection our three different schools passed around. In January of 2022, we got COVID. The first indication we even had COVID was when our three-year-old daughter (and third child) developed a very fast and very high fever after school. We treated her and within an hour she had bounced back as busy children do.
However, while I was feeding our 6-month-old baby dinner that evening, he started to feel hot. It all happened very quickly: before I could get him cleaned up and out of his highchair to get him medicine, he had a seizure. The shaking and eye roll lasted less than 30 seconds, but the come down took several minutes. I had never seen a seizure, was obviously scared, and asked my husband to call an ambulance. By the time the EMT arrived his seizure had long been over, but they still administered a high dose of rectal diazepam and whisked him away to the nearest hospital for many tests that would show nothing but COVID.
Looking back, I am surprised that I didn’t know more about fever thresholds and the role they have in childhood epilepsy. I also didn’t know having two or more seizures, no matter how short, can be labeled as Epilepsy.
We were released from the hospital once we tested negative for COVID. Two weeks later, our house was hit by a second virus and more fevers. I was diligent about rotating acetaminophen and ibuprofen to make sure the baby’s fever never spiked and once we reached day 2 of high fevers, I took him back to the hospital to get more answers. During our long wait between getting care, he didn’t receive a needed dose of acetaminophen and his fever began to climb quickly. Unfortunately, he had a second seizure and we were admitted to the hospital for what would become a long journey into Epilepsy.
Since having our child diagnosed with Epilepsy, we have learned that febrile seizures, or fever-induced seizures, are relatively common in children, but having several of them is likely to be labeled Epilepsy. Febrile seizures are convulsions that happen when a child has a spike in body temperature and typically last for a few seconds to a couple of minutes. Most febrile seizures do not result in long-term consequences (or necessarily lead to Epilepsy) or need medication, which was all the more confusing for us after our son was placed on anti-epileptic medication after two febrile seizures. However, we were navigating a foreign medical system, which is difficult when you are not fluent in the language (especially medical terminology) and it contributed to the care we received. If you have family history for febrile seizures or epilepsy, you should take greater precautions with childhood fevers, and if your child ever has a seizure, seek medical attention immediately to determine the reason for the fever and seizure. Seizures over five minutes become much more dangerous than those lasting a few seconds. It is always important to seek help when it is the first seizure they have had, if there is an accompanying illness, or when they reach several minutes.
The reason for Epilepsy or seizures is complicated and often different across cases. There are a handful of medications that can reduce the likelihood of having seizures, but as we learned, it usually requires trial-and-error to find one that works for you. We tried different anti-epileptic medications and all of them made things significantly worse. Over the next eight months, following our son’s first seizure, the drugs would contribute to him having 20+ seizures in one day. There wasn’t much to be done to help him, except make sure we were close enough to catch him before he hit the ground. We did not rush to a hospital, but did keep a log to try and find a common thread between his seizures. Once back home in the U.S, we stopped all medication and have never seen another seizure since. We continue to be diligent about controlling fevers and that has been a major contributor in keeping him seizure free.
Does this mean he is free from Epilepsy? Unfortunately not, and we believe he is likely more susceptible to having seizures in the future. I’ve been struck by how few answers we have about Epilepsy and how little we know about the human brain. There is so much room for exploration and understanding as to why seizures happen. You don’t know what you don’t know, but there are still things I should have been more aware of as a parent.
First, I wish I knew everyone has a fever threshold and that can be lower in children. Second, I wish I had known the role fevers play in seizures and contributing to Epilepsy. Third, I wish I had known it isn’t common to place children with only a few febrile seizures on anti-epileptic medication.
Our experience with Epilepsy serves as a reminder that no matter how much we think we know about parenting, there is always discovery and adaptation. Educating yourself on an obstacle you're facing is imperative, but also following your mom gut is important. I've learned to ask more questions and not be afraid to advocate for my children's needs. We continue to hunt for answers as to why our son had seizures and hope in the near future there is a greater understanding about Epilepsy.