“Everybody has something.” These three words my husband once said have always stuck with me. The person next to you might have a medical, health or mental condition; emotional trauma; an impairment; anxiety troubles; crooked teeth or even just a quirky cowlick. Everybody has something that sets them apart. I believe that it’s nothing to be embarrassed or ashamed about; it’s a way for all of us to learn from each other. It serves as an opportunity for us to practice understanding, kindness and compassion, something it seems our world has gravitated away from.

I am one of the 2.9 million Americans that have epilepsy. Epilepsy, the fourth most common neurological disease in the nation, is a brain disorder that causes repeated seizures. The condition has been around for decades, it’s said that the Greek philosopher Hippocrates (460-377 BC) was the first person to consider that epilepsy starts in the brain.

November Epilepsy Awareness Month gives us an opportunity to educate others about the condition. One in twenty-six people in the U.S. will have a seizure at some point in their life. Anyone can have a seizure though most people do not have them under normal settings.

Seizures can happen with or without warning and can last from a few seconds to several minutes with a variety of symptoms. There are more than forty types of epilepsy with different causes and different types of seizures. When most people think of a seizure, thoughts of a jerking or twitching motion come to mind. Not all seizures involve this. Some people will seem vacant or distant, wander around, seem confused or make repetitive movements. Some are fully aware during their seizure while others might not recall the incident.

Seizures can happen at any age and for various reasons. I talked with the mothers of two brave adolescents, Kami Lammers and James Byykkonen, who shared their epilepsy stories with me to better educate others about the condition.

Kami

Eight-year old Kami Lammers is a quiet and mellow young lady who has taken part in gymnastics and enjoys spending time with her family and friends. Her mom, Jackie, tells me about how Kami began having fibrale seizures at age one, which doctors predicted would become less severe as she got older. Her body temperature would often spike, oxygen level would drop and often generated a seizure that mainly affected the right side of her body. During her seizure, her body movements would freeze or twitch slightly.

As Kami got older and continued to have the seizures, she visited a neurologist, which took her through the long process of testing for reasons and trying to find the best medicine to control the seizures. She had her worst seizure about eight months ago, as she was getting ready for bed. The seizure lasted about 38 minutes and she finally came out of it as the specialists at the emergency room gave her Valium. As with most of her seizures, Kami slept for several hours afterward. She has slept as many as 18-24 hours, called the postictal phase, where her body and brain recover from the incident.

Throughout her testing, they have found that a wide range of scenarios can cause her seizures, including loud noises, drastic change in body temperature, over-exertion and being startled. She has been on four different medications to determine the right one to control them, the most recent one appearing to be successful so far. The process of switching to a new medication for an epileptic often takes several weeks as they need to be weaned off the old medicine as they are weaned on to the new one. Kami also carries additional medicine with her to take in case she begins to have a seizure.

Jackie explains that when Kami begins to have a seizure, her motherly instinct is to panic but she remains calm so not to alarm her daughter. At the onset of a seizure, Kami will often be advised to lie down or rest to give her brain a chance to relax. Jackie and her boyfriend commend those around her for their compassion and understanding, including friends, family and the school system.

Though seizures may or may not be genetic, Jackie is unable to find any family history of epilepsy. Jackie’s family doesn’t have a history of them and Kami’s dad’s side is unknown as he was adopted. The precautionary mom closely monitors her daughter to reduce the seizure’s severity or hopefully even prevent them. She keeps Kami on a regular routine of getting enough sleep, eating regularly, not becoming over-exerted or becoming over-heated.

Jackie suggests practicing compassion with others, paying attention to their surroundings. “You don’t know what their medical history is. Speak calmly to them if you see something is wrong. Seizures are something that people sometimes take lightly. Don’t take them lightly. Unfortunately, it might be life or death for somebody.”

James

James Byykkonen, age fifteen, has recently been diagnosed with epilepsy. His mom Melissa Schmidt, explained to me that while their family was outside on their farm in June, James suddenly fell without a cause or warning, landing face-first on the ground and shattering his nose. The incident not only resulted in a broken nose, but two broken teeth and a hematoma which required surgery the next morning. James has had a variety of seizures since then, resulting in several doctor and emergency room visits over the last three months, trying to determine a cause and treatment for the seizures.

The family has many irons in the fire right now while helping James to work through the condition. They have two other children under the age of three, run a family farm and each parent also runs a side business. Because James also has high-functioning autism, he’s not completely able to understand what is happening to him during the seizures. He’s had as many has five seizures in 24 hours, ranging from

mild ticking or random movements, to a tonic-clonic seizure involving convulsions. Sometimes he has been so exhausted from the seizures that he can’t get out of bed.

 

“It’s just been like a roller coaster,” Melissa explains. “There’s been no calmness. I feel like all he’s done is been in the hospital.”

It can’t be determined if the fall created the seizure or if the seizure created the fall. It’s hard to tell if they are hereditary, though Melissa does mention some epilepsy runs in her family. James has been through several medication changes to determine which one works best and is now trying his fifth one. Along with the drawn-out process of changing medicines, there is also a risk of experiencing breakthrough seizures during the switch, which James has also experienced.

During one of the medicine transitions, James broke out in a rash, discovering he was allergic to one of them. The complicated part was not knowing which medication he was allergic to as he was on a mix at that time. James had to stop all medications to determine this, which resulted in even more seizures. His skin broke out in severe blisters and he developed Stevens-Johnson syndrome from the medication allergy, a rare but serious condition.

The whole journey has been a challenge for the family. Melissa states, “There’s been nothing easy about it.” The scariest part for her is that James will get hurt again like he did when he fell in June. She’s also fearful of the possible severe effects of the Stevens-Johnson syndrome.

Melissa feels fortunate that others in their life and their community have been extremely understanding and supportive during this entire process. James’ family, friends and school have been very encouraging. Though he was unable to be a part of his school’s homecoming parade, he was able to watch it. He was excited to see one of the floats in the parade boasting a “get well James” sign.

“Everything that’s happened with him, everybody’s been so good,” Melissa states. “We haven’t had any bad reactions from people.”

What to do?

What do you do when you see someone having a seizure? First aid is most needed for a more severe tonic-clonic seizure. Stay calm, don’t panic and keep others out of the way. Don’t try to hold the person down or hold their movements. If they are convulsing, place the person on his side and keep the airway clear. Try to time the seizure’s length. Those showing milder seizures, with brief periods of staring, disorientation, shaking or repetitive motions might just need you to guide them away from danger, for instance if they are near traffic or a flight of stairs.

Understanding each other helps us to better understand ourselves. In the words of Marvin J. Ashton, “If we could look into each other’s hearts and understand the unique challenges each of us faces, I think we would treat each other much more gently, with more love, patience, tolerance and care.”

www.efepa.org

www.epilepsy.com

www.webmd.com