THE BLOG

Dear Doctor: My Child Has Epilepsy. Please Tell Me Everything

11/18/2014 02:15 pm ET | Updated Jan 18, 2015

On Saturday morning Dec. 12, 2009, I was on a gym floor, at an early morning practice in my role as an assistant basketball coach at a high school just outside Chicago. I noticed that I had missed several phone calls from my older brother Mike, unusual for the time of day, but I figured I'd catch up with him after practice. When I called him back, he could barely speak. All he could muster was, "Danny is dead." His son, my nephew, had been found in his bottom bunk bed by his older brother, John, lifeless.

It was just a few months before Danny's 5th birthday. When I arrived, Danny's three siblings had been taken to their neighbor's house, since his parents had rushed to the hospital with Danny. The kids knew something was wrong, but they didn't know what. When Danny's dad returned, John, then 6 years old, asked his dad, "Is Danny dead?" His dad replied, "Yes, John. Danny is dead."

I'll never forget that.

A parent's most critical role is to ensure the safety of their child. But because my brother and sister-in-law did not know the full spectrum of risks that Danny's epilepsy presented, they were not equipped to create the best possible treatment plan for him. Doctors talk on a regular basis about the various risks that accompany seizures -- relative to swimming, bathing, driving, and the possibility of head trauma. To omit the single most significant risk a person can face, death, is both confounding and irresponsible.

Sudden Unexpected Death in Epilepsy -- or SUDEP -- is described by the National Institutes of Health as the most common form of epilepsy-related death. Outside of SUDEP, seizures can also be fatal from a range of other causes: head trauma, accidents, status epilepticus, and suicide among them.

It is impossible to know if being informed about SUDEP would have prevented Danny's death.

What is known, however, is that Danny's parents felt a great sense of betrayal and anger at not having been told. That is what you are left with when you feel you have been robbed of an entire lifetime of opportunities with your son.

Information is power. It's a mantra and it's true.

During the first or second visit with their neurologist, when the range of epilepsy-related risks should be discussed, Danny's parents wish that their doctor had said to them, "We know your son is experiencing his seizures only during sleep. Nocturnal seizures are one of the factors that increase his risk for something called sudden unexpected death in epilepsy death, or SUDEP. There's no known 100 percent prevention for SUDEP, but watchfulness and early intervention -- being present during or just after his seizure -- will be a big advantage for Danny and could reduce the risk. Here's some more information on SUDEP that you can read about."

Danny's parents and others like them are not seeking a drawn-out, isolated conversation about SUDEP. They simply do not want SUDEP to be left out of the conversation.

In 2010, Danny's parents founded the Danny Did Foundation. The name comes from the last sentence of Danny's obituary, written by his dad: "Please go and enjoy your life. Danny did."

The mission of the foundation is to prevent deaths caused by seizures, and a central goal is to enhance communication between doctors and families regarding the risk of SUDEP.

The aim is not to cause fear or stress, but to empower parents and adults with epilepsy with the knowledge to make informed decisions. That information about SUDEP would optimally come from a doctor, but until that is common practice, the foundation works to fill the communication gap by raising awareness about SUDEP among the epilepsy community and in mainstream society.

Some doctors believe that parents are unable to digest "scary" information about the possibility of a seizure leading to death. We hear regular rebuttals from parents: they can take it. When a parent is flying blind about the risks that come with epilepsy, they are powerless to protect a child. When a doctor provides information in an open and honest way, it builds trust and respect, and offers parents the chance to make informed decisions. Parents deserve for that to be the standard. Doctors may feel like talking about SUDEP is a difficult conversation to have, but it is certainly easier than explaining SUDEP after its impact has shocked and devastated a parent.

Simply being present with someone when they are seizing is a huge advantage for them. Danny's foundation shares information about monitoring devices and technologies that can help to enable early intervention when seizure activity occurs. Danny Did has helped families spanning 47 states and six countries to gain access to these resources. The foundation is a continuation of Danny's place in the world, and through it, he continues to help others and spread happiness as he would if he were alive today.

Tom Stanton lives in Chicago. He is a dad, writer, and the executive director of the Danny Did Foundation. November is National Epilepsy Awareness Month.