Monday, December 27, 2010

Sudden Unexplained Death in Epilepsy (SUDEP)

Parents of epileptics must fear Sudden Unexplained Death in Epilepsy (SUDEP) as much as I do.  Although it's not a common occurrence, just once is enough if it's your child or loved one.  I never knew of SUDEP nor much about epilepsy until it hit my Jamie at the age of five.  I've been a fortunate parent as hers are controlled and were diagnosed as a type of epilepsy that has no known identifiable reason for appearing.  Her epilepsy is Benign Rolandic Epilepsy or BRE.  It's a fairly common type of epilepsy that many children outgrow once they hit puberty.  BRE is just like other forms of epilepsy in that the person experiences seizures too.  Jamie's seizures have been controlled over over a year now.  The other good news is that she is on a fairly low dose of Keppra.  The downside is she has migraines and insomnia whether it's due to the condition or the medication or both, I don't know.  My biggest fear is SUDEP followed by her not outgrowing her epilepsy.

One couple who lost their four year son to SUDEP is using his memory to raise awareness, educate others and find research dollars to help other epileptics.  It's an inspiring story that needs to be shared as many do not know what SUDEP and the plight that epileptics must endure.

Here are some excerpts from the story and you can click here to read the entire story.

Epilepsy claims as many as 50,000 lives each year — grim statistics Mike and Mariann Stanton were unaware of until their 4-year-old son, Danny, became one of them.

To get across the message that they’d never been told — epileptic seizures can be deadly — the Stantons have put up billboards, created more than 8,000 brochures for doctors’ offices, hospitals and families; held fund-raisers to boost awareness and research dollars; and created a foundation that’s gotten more than 10,000 Facebook followers.

More than 3 million Americans have epilepsy, recurrent seizures caused by electrical disturbances in the brain. About 40 percent have seizures hard to control with medicine. They face the highest SUDEP risk, though anyone with epilepsy is at risk.
SUDEP is thought to claim 3,000 lives each year nationwide, but the actual toll is likely higher, said Dr. Elson So, a Mayo Clinic neurologist and leading SUDEP expert who learned about the upcoming research from Chicago colleagues and has offered to take part.

1 comment :

  1. Hi, My name is Melinda Young and my son Max has been diagnosed with BRE...we are now 11 and have hit a point in time that the seizures are uncontrolled...we have had a drug rash due to several of the medications and the meds that we are on now are not controlling the seizures. There is not a lot of information or at least the Dr's here do not have a lot to give us. I am terrified with the amount of seizures that we are seeing. Currently as of today we are on our 6th day of seizures everyday. can anyone offer any advice or a place to go that has more information for us? My email is