Seizures and Epilepsy – The Latest Media “Feeding Frenzy”

Several weeks ago, the sad news of Jett Travolta’s death made headlines with news agencies broadcasting that a seizure caused his death. I was troubled by the media’s over dramatization of this horrible tragedy, especially the allusions that Jett’s death might be his parents fault.  To me, that was a cheap shot in an attempt to create a “celebrity sensationalism” storyline, whether there were any facts to support it or not.  

 

However, I really came unglued by an “entertainment” reporter’s interview of the EMT who transported the Travolta family to the hospital. She asked if Jett had froth and foam coming from his mouth and nose as if to portray the impression that people having a seizure typically appear “possessed”.  

 

Is this really surprising in view of the media’s fixation on sensationalism and the ratings driven need to be first with what “people” want to know?  The “news entertainment” media often go to extremes to tell a story and it appears to have no qualms about stretching the facts for “the effect.” In this case, however, this reporter went too far.

 

Miss “Entertainment” Reporter needs to be informed that most people who have a seizure don’t look like they’re in the midst of an “Exorcist” like demonic possession. Had she bothered to conduct a quick Internet search on the subject of seizures (e.g. on the Epilepsy Foundation or WebMD websites), she would have obtained an accurate source of background information for her interview. It would have been time well spent on her part and prevented her from coming across as an “air-head” on the subject matter.  

 

I understand that “spinning” a story can do wonders for ratings. However, associating a seizure with body jerking foam frothing creates an unflattering and unfair stereotype of individuals with a seizure disorder. This incorrect perception unnecessarily adds to the general public’s fear of people with seizures that results from their lack of knowledge.  So, please stop describing someone having a seizure with those kinds of images and instead rely upon the facts – as “unsensational” as they may be. 

 

My daughter was diagnosed with epilepsy at six months of age as a result of structural damage to her brain. She had a stroke prior to her birth and 80% of her right brain encapsulated into liquid cerebral fluid. By her first birthday, she was having over 200 infantile and myoclonic seizures a day.

 

At first, the seizure activity was no more than subtle head movements to the left and back and forth eye movement and we hardly noticed it.  The good news was that, despite all the erratic electrical activity in her brain, she could still eat by mouth, had some use of her hands and responded to people she knew.    

 

As the years progressed, I have had my share of people overreacting when learning that my daughter has an uncontrolled seizure disorder. School official’s demands have ranged from wanting direct access to Katie’s neurologist (which I do not advise) to suggesting that I follow her school bus in my car carrying medication to administer in the event she had the “big one”.

 

There are over 3 million Americans who suffer from Epilepsy and seizures. Approximately 200,000 new cases of seizures and epilepsy occur each year and 10% of the American population will experience a seizure in their lifetime (Epilepsy Foundation – Epilepsy and Seizure Statistics). Treatment decisions will depend on the type of seizure diagnosed as well as the possible causes. My daughter has a structurally damaged brain so that was easy to figure out but, in other situations, it might be genetic. 70% of cases have no known cause and are labeled as “Idiopathic epilepsy” – Latin for “of unknown cause.”

 

If there is a family history of seizures, including “febrile” (fever-caused) or childhood seizures, they could go into remission as the child ages. It’s also possible that the reverse could happen with a child developing seizures when they enter puberty. According to the Epilepsy Foundation’s website, more research is needed to determine the root causes of some of these forms of epilepsy.

 

Everyone should be aware of a condition known as “Sudden Unexpected Death in Epilepsy” or “SUDEP.” It’s defined as a sudden, unexpected, non-traumatic, non-drowning death in an individual with epilepsy, witnessed or un-witnessed, in which postmortem examination does not reveal an anatomical or toxicological cause for the death. (“Sudden Unexpected Death in Epilepsy – eMedicine article May 17, 2006). The fact that doctors can’t predict if this can occur in a person with epilepsy is a concern.

 

In 1993, the US Food and Drug Administration and Burroughs-Wellcome attempted to develop criteria for SUDEP. Per the eMedicne article, the following criteria are now used in “most” SUDEP studies (meaning that they’re reduced to a lot of guessing):

 

·        The patient has epilepsy, which is defined as recurrent unprovoked seizures;

 

·        The patient died unexpectedly while in reasonable state of health;

 

·        The death occurred suddenly (i.e. within minutes);

 

·        The death occurred during normal and benign circumstances;

 

·        An obvious medical cause of death could not be determined at autopsy;

 

·        The death was not the direct result of a seizure or status epileptics (a state of persistent seizure).

 

The typical age range has been in patients who are in their third or fifth decade (i.e. age 20-40 years), with a higher incidence at the younger end of the range. The article further indicated that SUDEP is very rare in children.

 

Is this a possible explanation for the death of Jett Travolta? We will probably never know unless John Travolta and Kelly Preston release that information. I have no direct knowledge of the details surrounding Jett’s death other than what was reported by the media. However, my uneducated guess is that his death was the result of the head trauma he sustained when he fell vs. the result of a seizure.  

 

I recently received a Christmas solicitation letter from the Connecticut Epilepsy Foundation. In it, Hedy Kelly shared her heart breaking story from this past September of the loss of her teenage daughter Kim. Kim had just been diagnosed with epilepsy eight days before she passed away in her sleep. Hedy recounts those painful days as they learned of her condition and the ensuing “merry-go-round” trying to figure out how to best treat her daughter.

 

As I can personally attest from the early days of Katie’s treatment, it was very difficult and scary waiting helplessly while the doctors determined the proper mix of drugs. However, a diagnosis of Epilepsy and seizures should not be viewed as a death sentence either. Much more research and development work remains to identify effective treatment regimens and the lack of funding is always an impediment to achieving progress and solving the problem. Current seizure treatment is often a “hit or miss” proposition with some treatments working and some not. However, children shouldn’t have to die until epilepsy research receives the huge cash infusion needed to find more effective treatments.

 

We have tried virtually all seizure treatment options, including homeopathic remedies. However, it has been years since any physician has alerted me to any new seizure treatments for Katie and there doesn’t appear to be much out there at the moment. Despite this reality, I continue to be hopeful and pray for that “miracle treatment” to come along.

 

In the meantime, it would be nice if the media stopped portraying a person having a seizure as some demonic possessed foam frothing monster. It would be even better if TV dramas stop depicting medical personnel holding down a person having a seizure and shoving a tongue depressor wrapped in gauze and tape in their mouth (which I actually saw recently on a cable hospital drama).

 

One would think that, in our “advanced” and “politically correct” 21^st century society, there would be a greater awareness of and sensitivity to the many disabilities that affect such a large portion of the population. Unfortunately, as Jett Travolta’s death reminds us, much work remains to be done before we get to that point.