Dear Health Care Professional,
The care and information you provide people with epilepsy is critical. As a doctor, you are viewed as the most reliable source of information on epilepsy. We want to share our story with you, in the hopes that it will give you a perspective on why it is important to discuss the risk of Sudden Unexpected Death in Epilepsy, SUDEP, in conversations you have with your patients.
Our son, Russell Nowotenski, was bold, brave, adventurous and talented enough to achieve any goal he set his mind to. He had a wickedly funny sense of humor that kept us all entertained. He was “the baby” of our family, his father’s “mini-me” and the Energizer Bunny incarnate.
Out of the clear blue sky Russell had his first Grand mal seizure when he was 17 years old. The diagnosis of epilepsy not only robbed him of the carefree joy teenage boys relish, but his dream of becoming a pilot in the Air Force after high school as well.
When Russell suffered his first seizure, my husband and I were thrown into a level of confusion and fear we had never known. We had a million questions. What is epilepsy? What are we up against? What caused this seizure? Will he have more? Can we stop them? What medicine is the right or best one? We found ourselves trying to navigate through a strange House of Mirrors. When we weren’t bumping into walls or dead ends, we turned in circles; our questions and fears reflecting back to us no matter where we turned.
We weren’t given much information to help us understand epilepsy by the doctors’ offices or hospitals so we researched everything we could find on the web, studied pamphlets, pharmaceuticals, and more than anything, we studied our son. Over the first couple of years we watched him grow withdrawn and discouraged. While most of his peers were rebelling against curfews and parental restrictions, Russell was struggling against a total loss of control over his own life.
We worried so much about our son. We worried about not being there to help him if he had a seizure. We worried about his nutrition and if he was getting enough sleep. We nearly drove him crazy with our relentless worry about whether or not he was taking his medication on schedule. We worried about the many ways that epilepsy was interfering with our son’s self esteem and dreams for his future.
But we didn’t worry about SUDEP…
When I reflect back on all the conversations we had with doctors and all of the questions we asked about epilepsy I can’t reconcile the fact that no one ever told us that sudden death was within the realm of possibilities in Russell’s case. All we really needed to worry about, they all said, was the potential injuries Russell could have during a seizure, especially while driving or swimming.
That led us all to believe that if we could keep his seizures controlled he could find his “new normal” and go back to pursuing his dreams, sans being a Fighter Pilot.
Russell thought the greatest risk epilepsy posed to his life was the potential of losing his driver’s license. Otherwise, to him, epilepsy was the something that he tried to minimize as much as he could. He hated the medications. They made him gain weight. They made him sleepy. They made him depressed. He was a typical 24 year old male who thought he could manage the fine line between feeling normal and doing just enough to avoid another seizure. What 24 year old isn’t invincible? His friends stayed up all night gaming and checking in on Facebook. Why couldn’t he?
So that’s how he spent his last night on earth. We don’t know for sure if he had missed any doses of his medications. We suspect maybe he had. When he got up for work May 6, 2014 he had a seizure…and died.
There are no words to describe seeing your son lifeless on his bedroom floor. Only questions. Why? What happened to our son? Russell had a total of 8 seizure episodes in seven years. They were considered under control. He had risen above epilepsy and taken back his life. He had moved out of our home and into his own apartment. He had a great job and was nearly finished with college. By all accounts the worst was behind us.
According to the coroner and the doctor, the cause of death was SUDEP. The one thing we were told not to worry about.
Why weren’t we told this could happen? Can you imagine the heart wrenching feeling of wondering if there was something more we could have done to prevent this? How are we to be okay with the idea that we may have failed to protect our son by every means possible?
Had Russell understood what he was really up against would he have been more diligent with his meals, medication and sleep? Would it have made a difference?
Had even one of the doctors who managed his care told us about SUDEP would we have celebrated his 25th birthday this week rather than grieved the 6 month anniversary of his Sudden and Unexpected Death?
Who knows? But it hurts so very much to have to wonder.
In a recent Epilepsia article, Drs. Donner and Buchhalter explained “sharing accurate information about SUDEP can optimize epilepsy self management and engage the person with epilepsy as a partner in their own care. Information about SUDEP must be part of the comprehensive education given to all people with epilepsy.”
We hope as healthcare professionals you will help us by making the community, your patients and other healthcare professionals aware of SUDEP. It is critical we increase awareness of SUDEP so families like ours can do everything we can to protect the people we love. Awareness will also help drive important research efforts so we can one day learn how to prevent this tragic outcome.
Thank you for your help and support to build awareness of SUDEP.
The Nowotenski Family
Facts about SUDEP
* SUDEP is sudden unexpected death of a person with epilepsy.
* Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are poorly controlled the risk increases to 1 out of 150.
* SUDEP is less common in children, but it is a leading cause of death in young adults with uncontrolled seizures.
* The best way to prevent SUDEP is to have as few seizures as possible.
Who is at Risk for SUDEP?
The greatest risk factor for SUDEP is frequent seizures, especially generalized tonic- clonic (grand mal) seizures.
Other risk factors may include:
* Epilepsy beginning at an early age
* Having epilepsy for a long time
* Not taking medications regularly or as prescribed
* Young adult age (20-40 years old)
* Seizures occurring at night
What can you tell your patients about SUDEP?
Provide answers to these questions:
* What is their risk of SUDEP?
* What should they do if they have another seizure?
* How can they prevent future seizures?
* What additional treatments that can stop their seizures and lower their risk of SUDEP?
* What should they do to reduce their risk of SUDEP if they have seizures at night?
* Should they consider using a device to warn someone that they are having a seizure?
* Should they consider sharing a room?
Make sure they have regularly scheduled medical evaluations by their primary care physician to make sure there are no other health conditions that may increase their risk from dying or getting injured following a seizure.
The Epilepsy Foundation SUDEP Institute and the American Epilepsy Society developed a two-part CME and CNE webinar series to help medical providers learn how to determine risk levels and how to have discussions about SUDEP risk. Register Now.
For more information: Contact the Epilepsy Foundation SUDEP Institute at SUDEP@efa.org
Learn more about SUDEP at epilepsy.com