Please read the narrative below for Jenn and Michael's Story:
The Silver Lining of the COVID Crisis of 2020:
As schools moved to remote learning in March and I became John’s primary teacher and around day and night, Michael and I began noticing some concerning behaviors. He would often struggle to remember things we had just told him, seemed to daydream frequently and school work became increasingly difficult for him to focus on. We thought he may have some attention issues and debated medicating him for ADD. We decided to just give it time and continue to monitor his situation.
Throughout the late Summer his behavior became increasingly bizarre. I began to wonder if I was imagining things or if he really was “looking through me” or hadn’t heard a word I’d just said and would wonder why on earth he’d walk away in the middle of me talking to him. John became markedly more tired and “moody” and we began to wonder if he could be experiencing puberty at such an early age. Surely not, we told ourselves. It’s too early for that in a boy his age. We figured he was just going through a phase.
The Big One:
Michael and I decided to sign John up for flag football in September and frequently practiced throwing the football and generally goofing around in the front yard after dinner. As time went on that evening, John became increasingly uncoordinated, dropped balls and seemed“out of it.” When walking back toward us, John suddenly twists his body with his head turned left, seemingly fixated on something far away. He raised his arms up, stiff and unresponsive yet aimlessly walking around. We couldn’t believe our eyes! The first thing we ask him when he came to is what he was looking at and why was he behaving strangely. He had no idea what we were talking about. We wondered if he could have done it purposely to get out of practicing. Maybe we were pushing him too hard at football and he was tired. Still we had a nagging feeling that something wasn’t right.
Maybe It’s ADD:
After seeing just how much trouble he was having focusing, we made the decision to start him on medication to treat the inattention. We were prematurely excited at just how much of an improvement we observed in his ability to complete his school work and remember simple routines we had been harping on for months. We thought we had an explanation for the bizarre episode until they began occurring multiple times in a week and tended to be triggered by physical exertion or soon after he had awoken. The episodes became longer, more disturbing to witness and became clear to us that John was definitely NOT in control of his body or faking it.
Time for Answers:
Michael and I made the decision to take him to the pediatrician to be checked out first thing Friday morning after Michael had witnessed two very obvious episodes on Thursday while I was in bed sick with pneumonia. The doctor did some basic neurological tests and John was having a hard time completing them. I started to worry and eagerly agreed to an urgent neurological consult due to the doctor’s suspicion that he could be having absence seizures. While we were in the waiting room to get the details for the upcoming appointment, John had another seizure and the doctor witnessed it. We made a plan to attend an appointment the following Tuesday, but if more seizures occur we’d go to the emergency room ASAP. Later that evening, Michael took John out to throw the football and sure enough he had another obvious seizure. Michael came in, visibly shaken and we made the decision to head to the emergency room.
John was admitted to the children’s hospital and hooked up to a 24 hour video EEG to monitor his multiple seizure-like events. Before they were able to attach all the electrodes to his head he had another seizure. We weren’t expecting to see any seizure-like activity at night because we never witnessed any while he was sleeping. Nonetheless, Michael and I took turns watching John like a hawk for any abnormal activity. If we saw anything unusual we were to press a button to alert staff monitoring the EEG. We were prepared for a long 24 hours of watchful waiting.
That night there were 4 events where John was asleep, seemed to awake from his sleep, eyes widely opened, turning to his left side, forceful deviation of the head to the left side/sometimes down, arms extended/stiff, he was confused and would move around after the event and then would fall back to sleep. The pediatric neurologist came in mid morning to tell us the EEG could be stopped because she had enough information from the night to make a diagnosis. John’s EEG showed Generalized Tonic Clonic Epilepsy. We were gutted.
She explained that John’s seizures were beginning on both sides of the brain and lasting approximately a minute and a half each time. We were in disbelief because we had only been able to see about 15-30 seconds of the seizure! With these seizures, John loses consciousness, his muscles stiffen (Tonic) and jerking movements (Clonic) are seen. He has no recollection of the seizure and afterwards may be sleepy, confused, or irritable for several minutes or hours later. Shockingly, these were all the symptoms we noticed earlier and attributed to a hormonal imbalance! We were told that the main way to stop the seizures was by beginning anti-seizure medication immediately. We were also given the frightening information that John was at a higher risk of SUDEP (Sudden Unexplained Death in Epilepsy) since he was having frequent seizures at night and was more common to happen to people that have tonic-clonic seizures.
Our dear friends Shelley and Shane Hutchison tragically lost their beautiful daughter, Addison from SUDEP just last year. I can remember comforting John several times before bed that he didn’t need to worry about dying in his sleep because he didn’t have seizures or epilepsy. Now it is our reality.
The neurologist recommended a cutting edge watch called Embrace that is the only FDA-approved wearable device on the market that can detect and alert caregivers of possible tonic clonic seizures especially at night.
With your generous donations, we are hoping to offset the costs of the Embrace watch and additional devices needed to monitor his seizure activity day and night. Our goal for our son, is to allow him to live as normal of a life as possible, but as his parents we know that this is only possible through vigilant monitoring on our end. These devices will help us strike that balance.
We appreciate your support and promise to keep you updated as we learn more about what is causing his seizures, as well as, how he is doing.
- Ricky & Gigi Garvin
- Rene Tewksbury
- Adrienne Bauer
Organizer and beneficiary
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