Sudden Unexplained Death in Epilepsy – It’s Time To Talk About It

One of the many topics of conversation between Epilepsy parents is the lack of communication or discussion about SUDEP (Sudden Unexplained Death in Epilepsy) it’s not a topic any one wants to talk about due to the fact it deals with talking about death. Honestly I don’t know anyone that truly does like to talk about death let alone the death of a child or loved one but in the Epilepsy community it is a topic that we must start talking about more often. It’s one of those must have conversations like it or not.

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)

It’s a conversation that must take place between every Neurologist, Epileptologist and the patients under their care. It’s one that needs to be spoken about to all families in a manner that is not only sympathetic to the concerns of the parents but also in a way that shows compassion and care for the families. It needs to be done in such a way that the family has the information they need to take all and every necessary precaution. Is telling them going to guarantee it won’t happen NO unfortunately with Epilepsy and SUDEP there are NO guarantees but we as parents and caregivers can do everything humanly possible to prevent it before it happens and not be left wondering “why” after it happens when the first question would be “Why were we not told about this”?!

I understand both sides of this argument from a medical standpoint and parental but since I became an advocate for Epilepsy I have come to understand why parents feel the way they do. I have heard fear in their voices, I understand the pain of losing a child no parent should go through the loss of a child, it’s the worst pain imaginable. You never “GET OVER” it you just learn to deal and move forward with everyday living especially if you have other children to raise but your heart is never healed its always broken a piece of you is always missing.

The biggest complaint I hear on a daily basis is the lack of conversation about this between the medical professionals and their patients but I can say that things are improving we are not their yet but it’s a start and I can say there are those Doctors that are coming around and jumping on the bandwagon. In June of 2012 the first Partners Against Mortality in Epilepsy (PAME) first three-day conference devoted predominantly to Sudden Unexpected Death In Epilepsy (SUDEP), where clinical, basic science and patient/family attendees came together to understand and support each other was a great success. This was a joint effort of SUDEP Coalition partners (AES, CDC, CURE, EFA. ETP/FACES, NINDS, SUDEP Aware) with meeting coordination and production by the American Epilepsy Society.

This is how things change when everyone takes a stand and comes together to take action. To come together and work on solutions and see what we can do to end this nightmare for parents and those with Epilepsy so that no parent has to continually live in fear that if they put their child to bed at night they will never wake up again.

So no parent has to watch their child go into Status Epilepticus (SE) a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous, unremitting seizure lasting longer than 5 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 5 minutes. Treatment is, however, generally started after the seizure has lasted five minutes. It is always considered a medical emergency. There is some evidence that five minutes is sufficient to damage neurons and that seizures are unlikely to self-terminate by that time.

Sudden Unexplained Death in Epilepsy (SUDEP) accounts for 10% of all Epilepsy related deaths; 85% of these fatalities occur between ages of 20 to 50. SUDEP incidence is approximately 1 in 1000 people with Epilepsy annually more than 10 times the sudden death rate found in the general population. So as you can see now today is the “Time to Talk About It” we must bring it to the forefront and make everyone aware that Epilepsy does kill.

For more information on SUDEP please go to the Epilepsy Warriors Foundations website www.epilepsywarriors.org where you will find answers to many questions and facts pertaining to SUDEP and what you should ask your doctors. Another resource for you is www.sudepaware.org  www.sudep.org.

This post is in loving memory of those we have lost “Our Warrior Angels”.

“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. 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.”

Susan
Founder and President
The Epilepsy Warriors Foundation