Thursday, October 23, 2014

SUDEP Awareness Day and Autism Disorders

A much higher percentage of people with autism spectrum disorders suffer from epileptic seizures than among persons in the general population.   At the severe end of the autism "spectrum" it has been estimated that as many as 39% also suffer from seizures.   My severely autistic, intellectually challenged son Conor suffers from seizures including tonic clonic known as Gran(d)  Mal seizures and almost lost his life last year to an adverse reaction to his seizure med at that time.  Among persons with epilepsy there are many risks surrounding loss of consciousness and breathing during seizures.  Approximately 1% off persons with epilepsy die as a result of SUDEP, Sudden Unexpected Death in Epilepsy.  In the UK the SUDEP Action organization has started a SUDEP Awareness Day, October 23.  It has received the support of  a UK MP Ed Vaizey.

The Epilepsy Foundation has a page on SUDEP which sets some important information:

What is SUDEP?
SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found when an autopsy is done. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150. These sudden deaths are rare in children, but are the leading cause of death in young adults with uncontrolled seizures. 

What happens?

The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.

Can SUDEP be prevented?

Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures.  Paying attention to managing your seizure medications as best as possible, taking them regularly, and preventing seizures emergencies is all part of this.
October is autism awareness month in Canada.  With the very large percentage of persons with autism disorders who also suffer from epilepsy it would be helpful if autism awareness organizations provided information about epilepsy and SUDEP.


Anonymous said...

Hi Harold-

I also wanted to let parents know to make sure all kids with seizures are tested for Chromosome 15q11.2-13.1 duplication syndrome (dup15q).

Please note the following from the DUP15q Alliance:

"Since April 2006 Dup15q Alliance learned of a number of sudden, unexpected deaths of young people with chromosome 15q11.2-13.1 duplication syndrome. These young people ranging from childhood to young adulthood were described by their parents, therapists and doctors as lively, energetic and affected by the cognitive disability, autism and ADHD that are common with Dup15q syndrome. Many of these individuals had epilepsy that appeared to be controlled in some but poorly in others."

Bottom line, make sure a very good genetic doctor is testing for this!

Anonymous said...

Great post. I fortunately don't have epilepsy and had never heard of SUDEP. Thanks for making me aware.

w ford said...

My maternal aunt died of seizures in 1999 in her late 20's.She had seizures from early childhood and was claimed to have refused to take medicine prescribed. This lady had left behind 2 kids and a boyfriend. She was not severe mentally handicap. I have nf disease a seizure risk plus autism myself and almost died of low blood sugar caused a seizure and heart beat issue thank doctors at lac usc hospital for my life this was in january of this year.

Anonymous said...

SUDEP has also been linked to changes in AEDs (medications). . . I found this out when a doctor was, essentially, bullying us to increase dosages and add new meds (seizures were occurring about once every 3 months, btw)- saying we risked SUDEP unless we followed her recommendation. We were lucky: we found another neurologists who was actually accepting new patients.