Information About SUDEP for Patients & Caregivers
Learning that you or your loved one has epilepsy or another seizure disorder can be challenging to process. But knowing about Sudden Unexpected Death in Epilepsy (SUDEP) risk factors, prevention, and how to help a loved one in an emergency can be life-saving.
SUDEP Risk Factors:
Biologically male
Having tonic clonic (grand mal) seizures
A history of nighttime seizures
Sleeping alone
Sleeping on one’s stomach
Onset of seizure disorder at a young age
Not taking medicine as prescribed
It is important for patients and their caregivers to take measures to reduce the risk of SUDEP, where applicable. While some of these risk factors are not modifiable, there are certain precautions patients and caregivers can take to decrease risk.
SUDEP Prevention:
Take all medication as prescribed. If you or your child are having medication side effects or run out of medications, call your healthcare provider immediately.
Being present for a seizure, particularly a nighttime seizure is key. Consider sleeping in the same room as your child or loved one with a history of seizures.
Learn standard seizure first aid protocols by taking an online course.
Take a CPR course, and consider taking a Basic Life Support training course.
Research and consider using both a seizure detection and a vital sign (i.e. heart rate and/or oxygen saturation) monitor or device to see if they are right for you or your loved one. If purchasing a seizure detection monitor or device presents a financial hardship, consider applying to The Danny Did Foundation’s Device Grant Program.
What should I do if my child or loved one is having a seizure?
*If this is the first time your loved one is having a seizure, call 911 right away.*
If a seizure is detected, turn your loved one from prone (face down) or supine (face up) to lateral (side) position.
Cushion their head, remove glasses and loosen tight clothing.
*The act of touching and repositioning a loved one, especially early in the seizure, has been shown in the literature to decrease postictal (post-seizure) respiratory dysfunction.
Keep the airway/mouth clear and clean any excessive saliva or secretions.
Actively watch and monitor your loved one very carefully until the postictal (post-seizure) period is over (this can last over an hour in some patients).
If there is evidence of irregular breathing, call 911, lift the chin, and perform the jaw thrust maneuver.
Consider elevating the head and torso and turning your loved one to the supine (face up) position, if there is no evidence of airway/mouth obstruction or vomit.
If your loved one’s breathing is still irregular, consider mouth-to-mouth resuscitation and bag ventilation — also known as bag-valve-mask (BVM) ventilation — if the caregiver is trained and equipment is available.
If your loved one’s heart rate is irregular (especially if it is slow or not-detectable), call 911 and consider chest compressions and CPR, if the caregiver is trained.
As soon as Emergency Medical Services personnel arrive, explain that your loved is having irregular breathing and/or irregular heart rate and needs oxygen and support right away. This is very important, as EMS volunteers and paramedics most likely will have never heard of SUDEP.
Having the knowledge of performing seizure first aid and knowing how to mitigate the risk of SUDEP is essential for saving lives. We encourage patients and family members to discuss SUDEP with their healthcare providers, even if their physician did not inform them about the risk of SUDEP. It is important to have an open dialogue about SUDEP prevention to most effectively protect patients with epilepsy and other seizure disorders. Learn more about speaking to your healthcare provider about your risk for SUDEP and how to prepare for a visit with your physician.
References:
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.