COLUMN: Every parent’s nightmare

While all the medical details are not fully known, the young man reportedly died after having a seizure.

As the parent of a teenage boy who suffers from seizures, this story hit a little too close to home.

The sad truth is, there are many children across the country who suffer — and sometimes die — from seizure disorders and related neurological conditions.

Some of those deaths are the result of accidents caused by uncontrolled seizures. The early reports about Jett Travolta’s death indicated he might have hit his head while falling from a seizure.

That’s one of the main concerns caregivers of many seizure patients worry about. Some children who suffer multiple seizures a day even wear helmets to prevent such a tragedy.

In my son’s situation, for example, we try to have him sit in chairs that have side arms so that if he has a seizure, he won’t topple onto the floor head-first. He has fallen, once hurting his shoulder and a few times bumping his head, but thankfully, nothing more serious.

Seizure patients around water is also a major concern. Swimming isn’t off limits for many seizure patients, but close supervision is mandatory; a seizure in a pool, or even a bathtub, is immediately life threatening.

Beyond accidents, seizures are sometimes just one of multiple medical conditions a person suffers. There are a number of neurological syndromes where patients have multiple physical problems of which seizures is just one aspect. Jett Travolta reportedly had other medical problems, but whether those were related to his seizures, or his death, isn’t clear.

And then there are what is known as SUDEP seizure deaths — Sudden Unexplained Death in Epilepsy. A person has a seizure and dies for no obvious physical reason. Some doctors think certain seizures may cause the patient to stop breathing and die before help can arrive. Often, SUDEP happens at night while the person is asleep.
A number of years ago, not long after our son began having seizures, he got up one Sunday morning and stumbled down to the master bedroom. He was covered in vomit, couldn’t talk and was semi-paralyzed on one side. We called his doctor and rushed him to Egleston Children’s Hospital in Atlanta.

By the time we got there, he was better, weak, but talking and coherent. It turned out that during the night, he had a major seizure that lasted a very long time. The convulsions had caused him to vomit and the length and intensity of the seizure left his right side temporarily paralyzed. He recovered, but could have died from asphyxiation, or the seizure itself.

While seizure disorders don’t get the attention that cancer and some other medical problems do, they are more common than many people realize. Some seizure conditions are minor, managed with medication and aren’t life-threatening; other kinds of seizures are more serious and require extensive medical and lifestyle management.

The tragedy of Jett Travolta’s death has, for a moment, highlighted the problem of those who suffer from uncontrollable seizures and brought it to the attention of the general public.

Sadly, there are thousands of other kids like Jett who aren’t the children of movie stars, but who also suffer from various kinds of uncontrolled seizures. For them, life is a daily balancing act; the fear of the next seizure is never far from their thoughts, or the thoughts of their parents and caregivers.

Life goes on, but you can’t help but wonder why such things happen to innocent children.

Mike Buffington is editor of The Jackson Herald. He can be reached at mike@mainstreetnews.com.