Sudden Unexpected Death in Epilepsy (SUDEP)

Disclaimer: Please note that we cannot provide medical advice or assist in medical emergencies.

Children with brain damage from hypoxic-ischemic encephalopathy (HIE) often require extensive care for conditions such as cerebral palsy and epilepsy. In addition to assistance with the tasks of daily living (i.e feeding, bathing, etc.) and routine medical care, they may need 24-hour supervision in the case of a medical emergency. 

For those with epilepsy, it is especially important that caretakers be aware of SUDEP.

What is SUDEP?

The abbreviation SUDEP refers to “sudden unexpected death in epilepsy,” in a person who was otherwise in good health. SUDEP would be considered the cause of death if no other cause was identified during an autopsy (1). For example, it would not be SUDEP if a person sustained an injury, crashed a car, or drowned while having a seizure (2, 3). 

How common is SUDEP?

Each year, there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy (2). It is the leading cause of death in people who have uncontrolled seizure activity (1). SUDEP actually occurs more frequently than sudden infant death syndrome (SIDS), but is generally not as well known (3). 

Risk factors for SUDEP

Risk factors for SUDEP may include the following (2, 4, 5):

  • Uncontrolled/frequent seizures
  • Generalized convulsive seizures (these may be called tonic-clonic or grand mal seizures)
  • Seizures beginning at a young age
  • Having a developmental disability
  • Having lived with epilepsy for many years
  • Missing or forgetting to take epilepsy medication
  • Alcohol consumption
  • Sleep deprivation

Causes of SUDEP

The causes of SUDEP are not always clear. It usually occurs during or immediately after a seizure, but not always. According to the CDC, SUDEP may be caused by these factors:

  • Respiratory problems. Seizures can cause apnea, or pauses in breathing. Apnea can reduce the level of oxygen in the blood. Convulsive seizures can also cause airway obstructions and subsequent suffocation.
  • Heart problems. Seizures occasionally lead to heart rhythm abnormalities or even heart failure.

SUDEP may also be caused by a combination of respiratory and heart problems, or other complications (2). Approximately 70% of SUDEP cases happen while the person is sleeping; they are often found facedown in bed (5). 

Preventing SUDEP

Unfortunately, doctors often fail to provide patients and their families with information about SUDEP. As Denise Grady wrote in a recent article for the New York Times, “The philosophy seems to be, why share such terrifying news when they can’t do anything about it?” (5).

However, there are steps that can be taken to lower the risk of SUDEP. These include the following (1, 3, 5, 6):

  • Being very careful about taking medication as prescribed and not skipping doses
  • Avoiding sleep deprivation, alcohol consumption (especially in excess), and other seizure triggers
  • Seeking treatment at a center that specializes in epilepsy
  • Make sure family members and caretakers are trained in seizure first aid
  • Considering a variety of treatment options, such as medications, surgeries, neurostimulation devices, and specialized diet, in order to achieve zero seizures (or as few as possible)
  • Talking to healthcare providers about other ways to reduce the risk of seizures and SUDEP. The CDC provides a useful list of questions that you can consider asking a doctor (click here). 

About ABC Law Centers

ABC Law Centers was established to focus exclusively on birth injury cases. A “birth injury” is any type of harm to a baby that occurs just before, during, or after birth. This includes issues such as oxygen deprivation, infection, and trauma. While some children with birth injuries make a complete recovery, others develop disabilities such as cerebral palsy and epilepsy.

If a birth injury/subsequent disability could have been prevented with proper care, then it constitutes medical malpractice. Settlements from birth injury cases can cover the costs of lifelong treatment, care, and other crucial resources. 

If you believe you may have a birth injury case for your child, please contact us today to learn more. We are happy to talk to you free of any obligation or charge. In fact, clients pay nothing throughout the entire legal process unless we win. 

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Sources

  1. SUDEP. (n.d.). Retrieved July 12, 2019, from https://www.epilepsy.com/learn/early-death-and-sudep/sudep 
  2. Sudden Unexpected Death in Epilepsy (SUDEP) | CDC. (n.d.). Retrieved July 12, 2019, from https://www.cdc.gov/epilepsy/about/sudep/index.htm 
  3. Azad, A. (2019, July 11). How seizures can kill people with epilepsy. Retrieved July 12, 2019, from https://www.cnn.com/2019/07/11/health/epilepsy-sudden-death-sudep-trnd/index.html 
  4. SUDEP Information for Parents of Children with Epilepsy | CDC. (n.d.). Retrieved July 12, 2019, from https://www.cdc.gov/epilepsy/about/sudep/parents.htm 
  5. Grady, D. (2019, July 10). How Cameron Boyce’s Epilepsy May Have Caused His Death at 20. Retrieved July 12, 2019, from https://www.nytimes.com/2019/07/10/health/cameron-boyce-death-epilepsy.html 
  6. Seizure First Aid | Epilepsy | CDC. (n.d.). Retrieved July 12, 2019, from https://www.cdc.gov/epilepsy/about/first-aid.htm 

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