Autism and Conor's Grand Mal Seizure: What Lies Ahead?

I know very little about seizures except that they are associated generally with epilepsy, that they are common in people with autism disorders and that they can be absolutely terrifying to a parent, even one whose personal conceits mislead him into thinking he is immune to fear. When I heard strange noises from my younger, severely autistic, and intellectually challenged son Conor and found him convulsing violently on our living room floor  I thought for an instant that we might lose him. At this time I know very little about seizures.  I know very little except how dangerous  seizures can be.

I can say that I had suspected seizure activity in Conor on previous occasions and reported them to his pediatrician over a year ago. The previous incidents involved his eyes rolling back in his head, his eye lids closing with an unusually forceful appearance, or his face grimacing and head tilting up and in another direction. But there was no falling or convulsing and no further examinations were conducted.  The Grand Mal seizure he suffered two weeks ago was on a different scale and prompted a call to 911 and the terrific emergency response team and ambulance that took Conor and I to the emergency ward of our local hospital, the DECH.  Thanks to the emergency response team the hospital staff were waiting and prepared with readings having been called in en route. An EEG is now scheduled and I will try to help Conor deal with the stresses of that procedure sufficiently to enable adequate readings to be taken.  Beyond these few facts I know very little about seizures or epilepsy which apparently is the most likely explanation at this time although no diagnosis is confirmed prior to further testing. All I know at this time is that seizures can be very dangerous, even deadly, and my responsibilities to my son now require that I learn much more, as a parent always must, about the very serious challenges they present to my son.

I have much reading to do.  I do have some very good friends in New Brunswick's autism advocacy community who have children with autism who have suffered seizures and  have given me some helpful information. I have for some time admired the courage of Kim Oakley who has posted YouTube videos of her son who suffers from autism and epilepsy and authors Autism, Epilepsy and Self-Injurious Behavior a blog  featured on the side bar of this site.  My admiration for her and her family and the challenges they have faced is increased by Conor's recent Grand Mal seizure.

Since my son's seizure I have found in the New York Times on line an informative and awareness raising article Unmasking Silent Killer in Epilepsy by Aliyah Baruchin. The article reports very directly, with no sugar coating, about Sudep, sudden unexplained death in epilepsy. It includes the story of Steve Wulchin who found his 19 year old son Eric lying on the floor after suffering from an epileptic seizure. He had died at about 2:30 in the morning. We were more fortunate, Conor's seizure occurred around 11 am in the morning and I heard him making unusual noises before finding him in violent convulsion on our living room floor. Had it happened at 2:30 am or some other time when no one was awake the ending could have been very different. The Baruchin article goes on to report: 

"The cause of Eric’s death was ultimately listed as Sudep, for sudden unexplained death in epilepsy. The syndrome accounts for up to 18 percent of all deaths in people with epilepsy, by most estimates; those with poorly controlled seizures have an almost 1 in 10 chance of dying over the course of a decade. Yet many patients and their families never hear about Sudep until someone dies. Mr. Wulchin said none of Eric’s four neurologists ever mentioned it to the family. “The message we got back was, ‘There’s no reason why he can’t live a long and normal life,’ ” he said. “It never occurred to me that this was a possibility. 

Now, physicians, researchers, advocates and relatives like Mr. Wulchin, a technology executive, are trying to raise awareness about Sudep. One of their goals is to establish registries of deaths and autopsy results, building databases to support future research. Sudep most often affects young adults, typically ages 20 to 40, with a history of the convulsive seizures once known as “grand mal.” Others at risk include those with difficult-to-control seizures, or seizures at night; people who take a large number of anti-epileptic medications or take them irregularly; African-Americans with epilepsy; and people with epilepsy whose I.Q. is under 70. Many victims die in their sleep, and their bodies are often found face down. That prone position suggests that they may have had a neural, respiratory or cardiac crisis — or some combination — that left them momentarily unable, like SIDS babies, to rescue themselves from suffocating. “After a seizure, the person is in a dramatically reduced state of awareness, and even their reflexes are reduced,” said Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center at New York University. For most people, he went on, “once your airway’s obstructed, you roll over. For people with epilepsy, they don’t.” 

Epilepsy, wrapped for centuries in secrecy and stigma, has gained wide attention in recent years. Not so with Sudep; even neurologists who specialize in epilepsy sometimes feel that mentioning it to patients who aren’t at high risk may impose too much of a burden. “Whenever I speak to a group of colleagues about telling all their patients, it’s controversial,” said Dr. Elizabeth Donner, a neurologist at the Hospital for Sick Children in Toronto and co-founder of the advocacy group Sudep Aware. “People worry about having a negative impact on the quality of life of people with epilepsy if we tell them about this. Mr. Wulchin and other advocates say this attitude needs to change, even in the absence of a concrete way to predict or prevent a sudden death. ”

Since I commented about Conor's seizure on this blog I have also received a  news release The Damaging Impact Of Seizures On Individuals With Autism:

Newark Valley, NY, November 30, 2012 – Many of us know someone whose family is dealing with autism; once considered rare, now 1 in 88 children in this country are diagnosed with an Autism Spectrum Disorder (ASD). 

Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders (AAPC Publishing) by Caren Haines, RN, and valuable input by Nancy Minshew, MD, deals with the overwhelming challenge for those living with silent seizures. Many are confronted by anger and falsely accused of disorderly conduct, indecent exposure and drug abuse; while some are even unfairly arrested because the bizarre actions exhibited during a seizure have led to frequent misdiagnosis, medical mismanagement and, in the worst case, commitment to a mental institution.  

Because they are difficult to diagnose, or due to a lack of awareness and understanding, as many as 30% of all children and young adults with ASD may have undiagnosed seizure disorders. Silently Seizing is a breakthrough book that explores what most doctors won't tell you – that often the symptoms of autism are caused by seizures, undetectable with standard diagnostic tools. 

At age 2, the author’s son was diagnosed with autism. By the time he was 12, his diagnosis didn't account for his uncontrollable aggression, the acrid smells that lingered in his mind and the odd voices that screamed at him from inside his head. By the time he was 18, his out-of-control behavior mirrored a mood disorder with psychotic features. Silently Seizing begins with a close-up look at this family's journey and examines a disorder that cannot always be identified in a clinical setting. 

 As a registered nurse, Caren Haines relied on her training to help her decipher her now 24-year-old autistic son’s perplexing behaviors. Based on knowledge gained from years of intensive research and information from top researchers in the field of autism, she is helping families become free from the debilitating symptoms of silent seizures and psychosis. 

Haines’ says, “Intersecting at two medical subspecialties, neurology and psychiatry, the child who has autism and partial seizures is at a serious disadvantage. By inadvertently allowing children's brains to “silently seize,” we are robbing them of their ability to function normally. Untreated, these seizures can predispose children to develop behavioral disturbances, such as self-injury, aggression and psychosis, which are seen in many cases of autism. If they are treated early with anti-seizure medications, many children show amazing gains in expressive language and comprehension. More importantly, many children lose their diagnosis of autism.” 

Backed by up-to-the-minute research, Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders is a must-read book that includes sections describing autism, the seizure-autism connection, tips for diagnosing and treating seizures, as well as how to better understand children's behavior. It acts as a virtual guide to help parents navigate through this complex and mystifying disease. For more information, please visit: www.bit.ly/Rb2WBW."

I received the above news release via email with out receiving a copy of the book which I have not read. I do intend to acquire a copy of the book. Not for comment on this blog at a later date, although that may happen, but as just one element in an effort to understand a dangerous reality in my son's life.