Samuel’s Story—Now He Has Freedom to Continue His Education
Samuel’s story is that of an active, inquisitive and adventurous young chap, who loves people and has an exceptional talent for math and playing the piano.
During an exercise session on the treadmill, he had his first known seizure at 11 years old, and this resulted in an epilepsy diagnosis.
Since then, for his mum, Julie, ‘it has been a process of piecing together events over his life, like waypoints on a journey that has provided the insights necessary to guide us to the best care for him.’
Searching for the best care for him led them to purchasing an Embrace watch, and soon after, all alerts went off on their phones when the Embrace detected a seizure and saved his life.
After some years of working through behavior or symptoms that were thought to be related to “sensory integration”, “hyperactivity”, or “intellectual giftedness”, came his first major grand mal seizure event at 11 years old (February 2016), which seemed to come “out of nowhere”.
Samuel was found in the garage floor next to the treadmill, where he was exercising.
He was face down, unresponsive, with full body convulsing.
After calling 911, he was airlifted to Rady’s Children Hospital (San Diego, CA), where he was diagnosed with an irregular heartbeat (PVC) and a “grand mal” seizure event.
The only “clues” leading up to this event were times over the years that Samuel would seem very thoughtful as if contemplating something very complex or just daydreaming after which he would seem a bit disorientated and had difficulty regaining focus back on task.
Now it is highly suspected that those were generalized absent “staring” seizures.
Also, a couple of weeks before this first event, Samuel was at home and stated concern over not remembering what he was just doing and seemed very confused in events of days.
Even though this was extremely odd, it was thought it might be over tiredness or extreme excitement over the purchase of the family’s first Disneyland passes.
None of these events seems at the time to be an indication of a “serious medical” issue or even call for medical follow up.
After the first grand mal seizure, to our great sadness a next one came about 2 weeks later and then the next about 4 weeks later.
Soon, It was an every 2 to 4 week happening.
What was known was the infrequency, lack of forewarning and causal event connection, inconsistencies in the time of the day or events leading up to it, and irregular heart rates made these grand mal events completely unpredictable and potentially life threatening.
“At the time we looked to medical staff for solutions, and by June 2016, they had prescribed oxcarbazepine. The 4-week mark ended with no seizures, and so seemed our nightmare”
Embrace came up in our search for something to help, but we decided not to purchase at the time because his seizures were well-controlled.
By August 2016, Samuel’s condition seemed stabilized under medication.
However, again our world was turned inside out this last September 2017.
After several repeat blood draws showing “bad” results, the medical team suggested the anti-seizure medication oxcarbazepine.
New medication was now required and so began a new nightmare!
After only 2 weeks of adjusting medication, Samuel’s first grand mal seizure happened after he first woke up in the morning and required an ER visit. The alarm “bells” went off in our minds due the closeness to his sleep cycle with SUDEP (Sudden Unexpected Death in Epilepsy).
Empatica Embrace now was in full shipment with no wait times; it was ordered and at our house in less than a week!
The ER doctors were impressed by the life-saving event through the Embrace
What went from a “stable, well controlled” situation was now out of control and the only thing bringing any peace of mind was the Empatica Embrace watch.
Only two weeks after the delivery of the watch, Samuel had gone to bed, the lights were turned out, and “good nights” said.
I was in the other room, out of ear-shot of his bedroom. My cellphone and the house phone all begin to sound off with Embrace alerts.
Running to him, Samuel was found to be in a repeat back to back seizure event requiring calling 911.
Still with his Embrace on his wrist, he was put into the ambulance and with medical help, he was stabilized.
The ER doctors asked about the Embrace watch and were so impressed on the life saving event they had just witnessed! Truly, I do not know if this seizure event would have been “caught”, let alone treatment given in time without the Embrace; it is unbearable to even contemplate what situation we would have had in the morning.
Now, he has freedom to continue his education
If the “life saving” aspects of the Embrace watch were not enough, the day to day living freedom that Embrace watch offers has been instrumental for our son’s continued education.
Samuel, now 13, takes classes at a community college, which requires a bit of public walking and transit on a commuter train. During the fall with Samuel’s medication adjustments, day-to-day uncertainty could have stopped his educational progress.
“I am encouraged by his bravery to conquer what would seem impossible!”
However, by teaming up with the college campus and transit security, a plan was put into place based on received Embrace Alerts.
Samuel completed his first semester of college with an “A” in Calculus I.
Not only impressive for a 13 year old, but one with “uncontrolled” epilepsy at the time.
For every person diagnosed with #epilepsy, there is a unique set of challenges, bravery, and victories not only for them, but also for their family and friends.
Our hard work everyday at #Empatica is channeled towards helping families with their struggles and challenges in caring for their loved ones living with #epilepsy by giving them peace of mind with the #Embracewatch and spreading #EpilepsyAwareness through our #Embracestories series.