Information About SUDEP for Medical Professionals
Even within the medical community, most providers are not aware of SUDEP with the exception of Neurologists and Medical Examiners. Despite the existence of legislation regarding SUDEP disclosure in certain states, many providers do not discuss the risk of SUDEP with their patients. Because of this “SUDEP secret,” approximately 3,000 people in the United States die unexpectedly each year, leaving their loved ones in shock and with many unanswered questions.
The Mark Shaparin Foundation is dedicated to increasing education about SUDEP among all healthcare providers — regardless of specialization. It is essential for any medical provider who treats a patient with epilepsy or another seizure disorder to disclose this information to their patient and/or caregiver in order to properly inform them of all risks in the hope of saving lives.
Understanding Seizure Disorders and SUDEP:
Many different seizure types have been reported to cause SUDEP, including febrile seizures, which affect up to 5% of all children. The main risk factors for SUDEP are generalized tonic clonic (grand mal) seizures and uncontrolled or frequent seizures.
Mark Shaparin was diagnosed with Benign Rolandic Epilepsy (BRE), which:
Is also known as Self-Limited Epilepsy with CentroTemporal Spikes (SeLECTS) or Benign Epilepsy of Childhood with Centrotemporal Spikes (BECCT).
Is the most common form of epilepsy among children.
Typically leads to an onset of seizures between 4-10 years old, with seizures typically ceasing during puberty.
Research shows that for 95% of children diagnosed with Benign Rolandic Epilepsy, their seizure disorder resolves naturally by age 15-16. However, in the medical literature there are cases of SUDEP among children previously diagnosed with BRE.
SUDEP Risk Factors:
Biologically male
Having tonic clonic (grand mal) seizures
A history of night time seizures
Sleeping alone
Sleeping in the prone position
Onset of seizure disorder at a young age
Not taking medicine as prescribed
Of these risk factors, the two that can be controlled by the patient and/or caregiver are “sleeping alone” and “not taking medicine as prescribed.” In Mark’s case, medication was not prescribed or recommended. Since most cases of SUDEP are unwitnessed, sleeping alone needs to be discussed with the patient and/or the caregiver.
Seizures Need to be Witnessed
Healthcare providers need to stress that seizures should never be missed. Although this is not always possible, every effort should be made for the patients’ parents or caregivers to be alerted if a seizure occurs. Since most cases of SUDEP happen at night — following night time seizures — it is imperative that nighttime seizures be witnessed. Sleeping with or in the same room as the pediatric patient is controversial, especially for prolonged time periods as patients get older, but healthcare providers should include this in their conversations with families who have a child with epilepsy or other seizure disorders.
In Mark’s case, his parents were advised to use a regular baby monitor. Despite the fact that their monitor was set to the highest volume, they did not see or hear the seizure that took Mark’s life. There are specialized seizure detection monitors and devices that can and should be used whenever there is a concern about unwitnessed seizures. In addition to seizure detection monitors, physiological monitors should be used to identify vital sign changes, if the seizure is not detected. While no monitor or device can guarantee safety, many families have found monitors useful as part of a risk reduction plan. There are many monitors and devices on the market, and healthcare providers should inform their patients about these resources.
Responding to a Patient Having a Seizure
*If this is the first time a patient is having a seizure, call 911 right away.*
If a seizure is detected, turn the patient from prone (or supine) to lateral position.
Cushion their head, remove glasses and loosen tight clothing.
*The act of repositioning the patient and providing tactile stimulation, especially early in the seizure, has been shown in the literature to decrease postictal respiratory dysfunction.
Keep the airway clear and clean any excessive saliva or secretions.
Actively watch and monitor the patient very carefully until the postictal period is over (this can last over an hour in some patients).
If there is evidence of irregular breathing, call 911 and perform the chin lift and jaw thrust maneuver.
Consider elevating the head and torso and turning the patient to the supine position, if there is no evidence of airway obstruction or vomit.
If breathing is still irregular, consider mouth-to-mouth resuscitation or bag ventilation — also known as bag-valve-mask (BVM) ventilation — if equipment is available.
If the heart rate is irregular (especially if there is bradycardia or asystole), call 911 and consider chest compressions and CPR/BLS/ACLS.
As soon as Emergency Medical Services personnel arrive, explain that the patient is having irregular breathing and/or irregular heart rate and needs oxygen and cardiopulmonary support right away. This is very important, as EMS volunteers and paramedics most likely will have never heard of SUDEP.
Laws Related to SUDEP
In 2022, New York State passed a law requiring physicians, physician assistants, and nurse practitioners to inform their patient about SUDEP if both of the following apply:
The patient has received an epilepsy diagnosis and is at high risk of SUDEP.
The medical professional is the primary healthcare provider treating the patient for epilepsy.
However, Emergency Department providers treating patients with epilepsy are not required to inform patients of SUDEP under this law. Read the New York State Provider Fact Sheet.
The information on this website is not medical advice. Please talk to your doctor about any health concerns you or a loved one may be experiencing.