Fundraiser To Offer Buzz Cuts And Epilepsy Info
As children and teens, many of us can recall at least one instance at school when a student suddenly fell down or began twitching or convulsing with no apparent self-control. We can also remember several students who seemed to get stuck in the middle of sentences, unable to move ahead with their thoughts. Then there were the students who were habitually labeled “daydreamers” by teachers—those kids who seemed to “space out” occasionally, but were otherwise pretty normal. What we didn’t know then, and what neurologists want parents and educators to know now, is that each of these scenarios might be attributed to epilepsy, a neurological disorder that affects approximately one out of every 100 people in the United States.
Every case of epilepsy is different, making diagnosis and treatment difficult for the growing number of specialists who try to categorize seizure disorders and map out the malady’s elusive patterns. Unfortunately, one element that many people who live with epilepsy and their loved ones share is fear of the unknown. What type of seizure is it? How long will it last? Will the seizures get worse? Can the seizures be deadly? And, as treatments and medications evolve—What makes this medicine work, and will there be side effects?
Epilepsy is a result of a malfunction of the electrical system of the brain. Most people with epilepsy are children or teenagers, who may “grow out” of their seizures at some point, only to have them return later in life. Others suffer seizures as a result of encephalitis, head trauma, or overexposure to chemical agents. While the government never quite came clean on the variety of disorders suffered by Vietnam veterans who were exposed to Agent Orange and the other toxic compounds, the military is now taking great strides to address seizures experienced by Iraq and Afghanistan military veterans as a result of concussions or proximity to percussions caused by the detonation of road-side bombs.
Trevor Stone, son of Randy and Nikki Stone of Nicolson, was 5-years-old when he began to experience major seizures, generally just before awakening. As dissimilar as seizures are, Trevor has something in common with about half of his fellow seizure-sufferers—an “aura.” An aura is classified as a sort of premonition—a short advance warning that a seizure is about to occur. Trevor, whose seizures can occur as often as one per week or as long as a month between events, usually has the ability to shout out, “Help me, Mommy! I’m scared!” Not surprisingly, he does not want to talk about his seizures when he is not having them. Like many other people with epilepsy, he is afraid that discussing them will bring on more of them.
Nikki’s story of the frustrating process of trying to obtain a proper diagnosis for her son and an acceptable form of treatment is similar to many that I have heard before.
“When it happened to us, I had no idea what (epilepsy) was,” she recalled of the moment Trevor’s doctor said the word. She sought help from the Epilepsy Foundation of America, but was turned off by the fact that the organization’s website was sponsored by a major pharmaceutical company, a practice that has since been outlawed. Drug manufacturers have done much to assist people with seizure disorders, but none of them can provide evidence that their particular medications are better than anyone else’s. In fact, none of their representatives can adequately explain why their drugs work when they do.
Trevor’s doctors wanted to start him on a drug called Trileptal, an anticonvulsive compound used to treat a number of disorders. Nikki was not convinced that the drug had a solid track record and began a search that has yet to yield a reliable alternative. In the course of countless web searches, Nikki came across the Danny Did Foundation, named after Chicago resident Danny Stanton, who died in his sleep at the age of four while experiencing a seizure.
People with seizure disorders have died from falls, car accidents, drowning, choking, and other things that might have been prevented, meaning that the seizure in and of itself was not the cause of death, just the catalyst. Danny’s story, however, brought to the light Sudden Unexplained Death in Epilepsy (SUDEP). There are instances of prolonged seizures called convulsive status epilepticus (CSE) that can result in death, but studies relating SUDEP and CSE are inconclusive, as is most evident about Epilepsy.
Needless to say, fear of the unknown coupled with a little more information that is not fully developed can compound anxiety. Nikki and her husband are understandably worried that Trevor, who is now also 6-years-old, could suffer the same fate as Danny. When she contacted the Stanton family in Chicago via their website, www.dannydid.org, Nikki found them to be compassionate and more than willing to help her. The Danny Did Foundation offered to supply a sleep monitor for Trevor that has been found to accurately predict seizure activity and set off an alarm.
Although she insists that she can afford to purchase the sleep monitor on her own, the understanding and emotional support afforded her by the Stantons made a big impression on Nikki. “I thought, ‘This is an organization that I can support,’” she stated.
She approached salon owner and longtime friend Christine Robinson about the possibility of conducting a fundraiser to support the Danny Did Foundation and to raise awareness among the general public about epilepsy in its various forms, including SUDEP.
“To be honest with you, I didn’t know anything about it,” Christine offered as a typical assessment of the average person’s prior knowledge about epilepsy. When she learned more about the challenges facing the Stone family and others, she wanted to help. “I know that Nikki wants to have some more tests done to see if there is an alternative form of therapy that can help Trevor to avoid some of the (standardly prescribed) medications and their side-effects,” Christine added. The Stones will take Trevor to Johns Hopkins University in Philadelphia on May 6 for undisclosed testing.
“Usually, she is closed on Sundays, but she was more than willing to be involved,” Nikki said of Christine and her willingness to help the Stones and the Danny Did Foundation.
On Sunday, May 1, Christine and the staff of Shabby Shek Salon, 156 W. Tioga St., Tunkhannock, will offer buzz cuts and trims at the ridiculously low price of $5 per person from noon to 4 p.m. All of the proceeds will go to the Danny Did Foundation to further the advancement of research and treatment of SUDEP. Nikki will also have information available about various forms of epilepsy and common sense guides for people without seizure disorders to follow in case they are ever faced with a person experiencing one. The first 50 children to stop by will receive a coupon for free ice cream, and the mascot from a local insurance company will be at Shabby Shek as well.
To learn more about SUDEP and the Danny Did Foundation, readers may log on to www.dannydid.org. More general information can be found at www.efa.org. The Epilepsy Foundation of Eastern Pennsylvania, which covers Wyoming and Susquehanna Counties, offers epilepsy support meetings for adults at 7 p.m. on the fourth Wednesday of each month at the John Heinz Institute on Mundy Street in Wilkes-Barre and can be reached at 592-1150. The Epilepsy Foundation of Western and Central Pennsylvania, which covers Bradford and Sullivan Counties, is considering starting support group meetings in Lycoming County and can be reached at (800) 336-0301.