One of the top concerns for caregivers in the Dravet syndrome (DS) patient community is Sudden Unexpected Death in Epilepsy (SUDEP). Of the almost 20% mortality rate within the DS population, roughly half of those deaths are attributed to SUDEP. This is a terrifying statistic and our families live in constant fear for the safety of their child each night when they put them to bed. Because of the devastating impact on our community, DSF has funded multiple research awards to help us better understand SUDEP, including a recent project by Daniel Mulkey, PhD, of the University of Connecticut.
SUDEP is when a person with epilepsy dies suddenly, and no other reason for death is found. These deaths frequently occur during sleep, and while there may be signs a seizure has happened, this isn’t true in every case. While there is now much more research happening in the field of SUDEP, the cause is still not clearly understood. Researchers are investigating a range of possibilities – such as apnea or a dangerous heart rhythm during a seizure, or a combination of the two.
Researchers have identified these possible risk factors:
- Uncontrolled and frequent seizures
- Onset of epilepsy in infancy or childhood
- Intellectual disability
- Abrupt cessation or changing medications suddenly
- Experiencing seizures at night
Certain precautions are suggested to reduce these risks, including:
- Avoiding missed doses of medication
- Trying to avoid seizure triggers
- Making sure that all adults caring for the patient are versed in seizure first aid
- Consider using a seizure monitoring device
- Requesting a cardiac check up to rule out any underlying heart issues
Talking about SUDEP is hard for families and for the medical professionals that care for them. Some doctors or nurses may think you are not ready to hear about SUDEP, that it will be too upsetting, and/or that it is not the right time to bring it up. When your child is first diagnosed, you receive a lot of information on their care and potential future. Some people want to know everything there is to know immediately after diagnosis. Others need some time to adjust to this new normal and digest all of the information they have been given thus far. When you are ready, if your epilepsy team has not brought up SUDEP, I encourage you to start that dialogue. DSF does offer a Safety & Mortality brochure in English and in Spanish that you can print and bring with you to your appointment to start the discussion.
Join DSF on October 23rd in spreading awareness on SUDEP Action Day. The SUDEP Action Day website offers facts and infographics. We encourage you to visit their website and share information on SUDEP on Oct 23rd, as well as to watch DSF’s social media channels for posts you can share to help us bring attention to this important topic.