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.

 

 

 

 

 

Recovery from Spinal Fusion Surgery: Home

Happy New Year! Praise the Lord 2008 is over and now we can look forward to a new year with expectations of good health and prosperity for all.

 

Katie was discharged from the hospital on November 6, 2008, nineteen days after she was rushed to the emergency department at the Children’s Hospital. Since then, she has been stable and making progress but she is still not “out-of-the-woods”. Her bi-weekly CBC blood work continues to improve but is still not normal. Her surgical incision is closing from the inside out and now requires wound changes once a day. Her surgeon has ordered six more months of continuing antibiotic treatment – three months administered via IV twice a day and then three months administered orally.   

 

We have a standing weekly appointment with the surgeon who monitors blood work and modifies wound dressing techniques as necessary. Each week it’s a new ball game. We started with the “wound vac”, which required changing by a “certified wound nurse” three times a week. After four weeks of this, the deep muscle tissue started to fill in unevenly and the “leak” alarm would invariably go off when I had no nursing coverage. The most frequent time was on a Saturday or Sunday morning. I was getting a bit cranky and the last thing I wanted to do was a wound vac change at 2:00 a.m. to fix a leak.

 

My short temper with the wound care staff and the uneven tissue growth resulted in the wound vac being discontinued after four weeks. It was time to re-think the process and they came up with packing the wound cavity with gauze impregnated with Dermagram-B Cream. After watching the staff pack her spine I thought this is going to be a no brainier process and much easier than the wound vac.

 

My first attempt changing the wound vac dressing reminded me of an old “Calvin” cartoon where Calvin ended up with more wrapping and tape on him than on the package. It was not much different with me. I had pieces of the dressing film attached to everything including Katie’s hair, bed and my husband who was assisting me. It was a mess. However, I did get a good seal around the wound and that was the goal. It was wonderful to free Katie from that machine which made so much noise.

 

Since then, we progressed from Dermagram-B Cream to several different types of dressings changes depending on how the moisture content of the incision. For example, we used Mesalt, wet-to-dry gauze and Telfa bandages. I’ve also become quite good at monitoring how a wound changes during the healing process, with color and odor being the two of biggest indicators that something is wrong. 

 

Katie’s strength and endurance has improved in the last month. She has been sitting in her wheelchair for more than three hours a day – this is real progress! Nutritionally, she is doing well enough and is gaining weight. This was a big concern this past year before her surgery. Katie’s Pediatrician felt the scoliosis was so severe that it was interfering with her ability to properly digest food and therefore she was not receiving optimal nutrition.  

 

During her second hospital admission, we were surprised to learn that, in addition to a raging infection, she might also have a “sick thyroid” as her protein and potassium levels were well below normal. We noticed that she didn’t respond when poked with needles. I was told that our brains send out a chemical which produces a “fight or flight” response to pain or stress. In children like Katie, crying is a normal response when in stress or in pain. This wasn’t happening at all when painful procedures were being done on her. We were concerned that there was another underlying problem developing.

 

However, adjustments were made to her diet – e.g. – amino acid powder has been added to her formula and vitamins and nutritional supplements have been restarted. We are excited that she is gaining weight steadily but I’m still concerned that she is still missing something nutritionally. She is now experiencing an unusual amount of hair loss as well as muscle pain when stretched or massaged. As of yet, no new dietary changes have been ordered.    

 

We therefore continue to wait and monitor. At the end of January, the Vancomycin will end marking the halfway point of the treatment and Katie will then start on three months of oral antibiotics. Bi-weekly blood work will continue checking the “CRP” (C Reactive Protein) and Sed Rate (Erythrocyte Sedimentation Rate) levels. When these levels reach and are maintained within normal ranges, the surgeon can declare victory. However, if these remain high, this means that the infection is still active. The only alternative would then be another surgery to remove the rods from her spine and we start all over again. I don’t want to think about that prospect.

 

 

In the coming weeks, I will be changing the focus of this blog to a discussion of topics in the news relevant to parents of children with disabilities. These will include epilepsy, ethical issues associated with physician discussions of end-of-life planning and educational topics etc. So – stay tuned!

 

Our deepest sympathies go out to the family of John Travolta and Kelly Preston on the loss of their beloved son Jett. Words cannot describe the pain and sorrow that a parent feels when they have lost a beloved child. Our prayers are with you during your time of grief.