I was awake at 5:30 this morning, had some breakfast, and was enjoying a mug (not a cup, a mug) of coffee when I noticed that the time was 6:05 am. Startled I jumped up to see if everything was OK with my son Conor. Conor suffers from severe autism disorder and epileptic seizures, including half a dozen grand mal or tonic clonic seizures, since last Christmas. One feature of Conor's autism disorder is that he gets up at precisely 6:01 a.m. every morning. He often wakes up before 6:01 but stays in bed until that time and then gets up. Until this morning I can not recall the last time he might have slept in past 6:01. I was worried when he had not come out of his room by 6:05.
I worried because of the epileptic seizures from which he suffers. (My fear was brief; gone as soon as I ran into his room and saw him stirring) Some who suffer from such seizures have been known to die in their sleep with no clear explanation, a condition called SUDEP, sudden unexpected death in epilepsy. A special program called The Center for SUDEP Research which will be a "Center Without Walls for Collaborative Research in the Epilepsies" has been established in the US by the National Institute for Neurological Disorders and Stroke (NINDS) to tackle SUDEP.
A NINDS press release provides an overview of SUDEP and a brief description of the plan of action:
"While the causes of SUDEP are currently unclear, mounting evidence points to seizures that induce structural defects and/or brain circuit malfunction in areas that control cardiovascular and/or respiratory functions. Using a multidisciplinary approach, scientists and clinicians participating in the new center without walls hope to understand what causes SUDEP and how can it be prevented.