November is Epilepsy Awareness Month. We will be hosting a month long campaign that will provide valuable information, facts, resources about Epilepsy, and what you can do to not only manage the day to day living with epilepsy but also become a voice to be heard. A crucial important fact regarding epilepsy that needs to be heard is Sudden Death Due to Epilepsy (SUDEP).
It is of the utmost importance that we as parents and caregivers of those children or family members suffering from epilepsy and seizures talk about it, but we must also start getting our neurologists, doctors, nurses, and medical school students talking about it as well. I recently read an article that was so disturbing to me because it emphasized that, still today, only a few neurologists are discussing SUDEP with their patients. The reasons given were that they believe the risks are low, that there are no known preventative strategies, and that they don’t want to unnecessarily alarm parents and patients. For more on this particular article you can find it here.
As parents, patients, and caregivers of those with epilepsy it would be much better to “alarm” me about SUDEP rather than later when it’s too late. Sudden Death Due to Epilepsy (SUDEP) accounts for 10% of all epilepsy related deaths. SUDEP incidents are approximately 1 in 1000 people with epilepsy annually more than 10 times the sudden death rate found in the general population. As noted in the article comparing years of potential life lost from SUDEP with selected other neurologic diseases, SUDEP ranks second only to stroke. So to me it’s clear that it is something we do need to talk about continually.
Another statistic is that for those children with Dravet Syndrome (which is a catastrophic form of epilepsy) and those that suffer from uncontrolled tonic-clonic seizures (especially at night), the risk of SUDEP is 1 in 150; so again why are we not talking about this? Parents and caregivers should not have to live in fear of putting their kids to bed and losing them to SUDEP. We have lost so many children already and so many families are trying to deal with their grief and brokenness that knowledge can only help them.
As a parent of a child that has died regardless of the circumstances you never get over that loss, you keep living because you have no choice, you have other children that need you, a spouse that needs you, so you just keep going but inside you just want to curl up in a ball and be with the child you lost.
I have listed the most frequently asked questions about SUDEP for your information. Please feel free to share this with family and friends.You can find this and other resources on our website www.epilepsywarriors.org
What is SUDEP?
A death is referred to as “SUDEP” when a seemingly healthy person with epilepsy dies unexpectedly and no reason for the death can be found.
What Causes SUDEP?
Irregularities in the heart rhythm, breathing disfunction, disturbances in brain circulation and seizure induced hormone and metabolic changes have all been suggested as potential causes of SUDEP. Recently, the first potential gene for SUDEP has been identified that controls the normal rhythm of the heart.(goldman et al, 2009)
How is SUDEP determined?
A death is referred to as a ‘SUDEP’ when a seemingly healthy person with epilepsy dies unexpectedly and no reason for the death can be found. In most cases, an autopsy is required to rule out other causes of death. The most common criteria used to determine whether a death is due to SUDEP are (Leestma, et al 1997):
- The person has epilepsy, which is defined as recurrent unprovoked seizures.
- The person died unexpectedly while in a reasonable state of health.
- The death occurred suddenly.
- The death occurred during normal activity (often during sleep and found in or near the bed).
- An obvious medical cause of death could not be determined at autopsy.
- The death was not the direct result of status epilepticus.
How often does SUDEP occur?
Although there have been no large scale studies of SUDEP in the U.S., data are available from a variety of sources. The most important thing to remember is that the incidence of SUDEP differs greatly depending upon the population studied.
Elson So, M.D., Professor of Neurology and Chair of Electroencephalography at Mayo Clinic College of Medicine in Rochester, Minnesota and past chair of the Joint SUDEP Task Force of the American Epilepsy Society and the Epilepsy Foundation states “for a person with epilepsy, in general, the risk is small, at one in 3,000 persons over a one-year period. For a person with poorly controlled seizures, especially generalized convulsions, the risk is one in 100 persons over one year. Persons with absence or myoclonic seizures are not known to have increased risk for SUDEP.”
Who is at risk for SUDEP?
While SUDEP can happen to anyone with epilepsy, some people are at higher risk than others (Torbjörn, et al 2008).
Risk factors most consistently associated with SUDEP are:
- Poorly controlled seizures
- Treatment with multiple anticonvulsant drugs
- Having long standing chronic epilepsy
Other risk factors include:
- Generalized tonic-clonic seizures
- Seizures that happen during sleep
- Not taking anticonvulsant medicine as prescribed
- Stopping the use of anticonvulsant medicine abruptly
- Developmental delays
- Onset of epilepsy at a young age
How often does SUDEP occur in children with epilepsy?
As with adults, the answer depends on how severe the epilepsy is. In general, however, risks are lower in children than in adults (Leestma, et al 1997).
What can be done to reduce the risk of SUDEP?
While our understanding of SUDEP and how to prevent it is still unfolding there are measures that people with epilepsy and their families can take to try to reduce their risk:
- Maximize seizure control. Take medication as prescribed. If medicines do not work, then consider other therapies such as epilepsy surgery, the vagus nerve stimulator, and the ketogenic diet.
- Eat well, get enough rest and regular exercise and keep stress to a minimum whenever possible.
- Be aware of and avoid any potential seizure triggers. Keep a record of things that occurred before a seizure (such as, were you ill, tired, stressed, hungry? Where did the seizure occur and what time of day was it?).
- Night time supervision
- Heart rate monitor
- Breathing alarm
- Knowledge of emergency resuscitation measures including CPR and use of a defibrillator
How do I talk with my doctor about SUDEP?
If your doctor has not spoken to you about the health risks associated with epilepsy including SUDEP, PLEASE schedule an appointment to meet with him or her. Questions to ask include: What risks do I/my family member have for SUDEP? What can we do to reduce the risk of SUDEP?
Can using an anti-suffocation pillow prevent SUDEP?
There are no data to support the use of these pillows. However, you may wish to discuss any possible benefits with your doctor.
Would using an audio monitoring device alert us to the possibility of SUDEP?
This type of device could alert you to a seizure that is accompanied by audible sounds but may not alert you that your loved one has stopped breathing.
Is SUDEP genetic?
There are some studies that suggest genetic factors may play a role, but no definite information is available at this time.
Can people die from epilepsy?
Most people with epilepsy live a full life span. However, there are potential factors associated with living with epilepsy and seizures that may increase the risk of early death:
- Sometimes epilepsy is a symptom of a more serious condition, such as a stroke or a tumor that carries an increased risk of death.
- Accidents such as drowning, burning, choking, or falling can occur during a seizure, and may result in injuries that are serious or potentially life threatening.
- Persons with epilepsy have an increased risk for depression and suicide.
- Very long seizures or seizures that happen quickly, one after another (called status epilepticus), can also be life-threatening. Status epilepticus can sometimes occur when seizure medicine is stopped suddenly.
- Some people with epilepsy may die suddenly, without explanation. This is called SUDEP which stands for Sudden Unexpected Death in Epilepsy. SUDEP is not well understood, although it is suspected, sometimes, to be related to heart rhythm problems during a seizure. SUDEP occurs more often among people with convulsive seizures, especially generalized tonic-clonic seizures.
Optimizing seizure control and use of safety measures can reduce the risk of epilepsy-related death.
Is it SUDEP if there was no evidence of a seizure?
The patient has to have a diagnosis of epilepsy for SUDEP to be considered. However, in SUDEP, the death may not be the direct result of a seizure. It is not certain what role seizures play in the death process. The absence of evidence of a seizure prior to death does not preclude it from being deemed SUDEP.
Where else can I get more information about SUDEP?
www.sudep.org – Epilepsy Bereaved
www.sudepaware.org – SUDEP Aware
Studies are still being conducted and much more research is needed to answer the many questions which remain about SUDEP. The questions and answers listed above address some of the more basic and frequently asked questions related to SUDEP. For answers specific to your experience with epilepsy, please refer to your physician.
Please join us this November in talking about it and spreading awareness the more we educate the more we will accomplish. The more we establish good working relationships with our doctors and healthcare teams that care for our kids or family members with epilepsy chances are we will instill the importance of discussing SUDEP with their patients. Ask the questions, share your concerns, be a voice for all those suffering from epilepsy and seizures. Stay tuned for part-two of my blog on how you can have peace of mind when your child is sleeping.
LeestmaJE, AnnegersJF, BrodieMJ, etal. Sudden unexplained death in epilepsy: observations from a large clinical development program. Epilepsia 1997; 38: 47-55.
Torbjörn T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. The Lancet, 2008, Volume 7: 1021-1031.
Surges R, Thijs R, Tan H, Sander J. Sudden unexpected death in epilepsy: risk factors and potential pathomechanisms. www.nature.com/neurology September 2009, Volume 5: 492-504
For further reading:
Case-control study of SUDEP. Langan, Y., Nashef, L., & Sander, J.W.; Neurology 64, 1131-1133 (2005)
‘Molecular Trigger’ For Sudden Death In Epilepsy Found. ScienceDaily. Baylor College of Medicine (2009, October 15).
Mortality Risk in an Adult Cohort with Newly Diagnosed Unprovoked Epileptic Seizure: A Population-Based Study, Hans Lindsten, LENNART Nystrom and Lars Forsgren, Epilepsia, 41(11): 1469-1473, 2000
In memory of our Warrior Angels our Children: “God of light thank you for helping to guide us out of the darkness of pain and grief that occurred after the loss of our beautiful children and loved ones. Now that they are gone every single memory is both precious and holy. Bless each memory we have of our children so that they will continue to live on in our hearts and minds forever.”
WE LOVE AND MISS YOU EVERYDAY
MORE THAN WORDS CAN EXPRESS OR SAY!
John, Danny, Scott Jr, Chelsea, CeCe (Cecelia), Adaleigh, Jordan, Piper, Joey, Donna, Eric, Kyle, Ryan, Savannah, Ezekial, Sam, Christopher Adam, Brayden, Joseph, Connor, Dallas, Bradley, Ken, Lydia, Giovanni, Marissa, Lizzy, Tina, Matthew, Clayton, Carolina, Josh, Samuel, Melanie, Jayden (Jay Jay), Clover, Moon Jaden, Gage, Sarah