Kristin Lape entered her senior year at Mississippi State University with great expectations for the future – graduation, embarking on an exciting new career, and undergoing an operation that could change her life. Lape, like over 3 million other Americans, suffered from epilepsy.

Lape experienced her first epileptic seizure at two years old. By her senior year of college, she was having several episodes a day. She was taking the usual round of anti-seizure medications; however, they were doing little to adequately control the disorder. Lape’s mother voiced her concerns to a friend who in turn referred her to the neurology department at Hattiesburg Clinic. Lape and her mother made an appointment to meet with Hattiesburg Clinic neurologist Dr. Wendell Helveston.

“I still remember the day I walked into Dr. Helveston’s office,” recalls Lape. “I was expecting him to either change my medication or increase my medication. Dr. Helveston had been studying my medical files. He said, ‘Kristin, we’ve got to get you fixed. You are about to graduate from college. You’re about to go out into the real world. I think you would be a good candidate for surgery.’” Dr. Helveston’s news came as both a shock and as a relief. “I cried,” she says. “I never had a doctor who pursued helping me that much.”

Lape was admitted to Forrest General Hospital for preliminary testing. With the use of an electroencephalogram (EEG), her electrical brain activity was measured to pinpoint the exact location in the brain that the seizures were originating from. She was then referred to University of Alabama at Birmingham (UAB) for surgery. Lape was wheeled into the operating room in December of 2006. She has been seizure free for over a year.

Before undergoing surgery, Lape describes herself as feeling, “tired a lot, lethargic, and drained.” Since her surgery she has more energy and is able to be more active than she ever through she would. Says Lape, “I recently went to a Trans Siberian Orchestra concert and it was amazing. Without my surgery, I know for a fact I would have had seizures within the first song. The light show was amazing, and it was great for me to be able to experience a concert without worrying about having seizures and not enjoy it. That was a true test of the results of my surgery.”

Lape graduated from Mississippi State in May 2007 and is currently working as a graphic designer for Mojoloco, LLC in Brandon, Miss. Although epilepsy no longer affects her life the way it used to, she has not forgotten that millions of Americans still live with the disorder everyday. Last fall, Lape and the staff of Mojoloco volunteered their talents to help out the Epilepsy Foundation of Mississippi with their annual fundraising event. They produced all the collateral materials and organized a team to walk the streets of Jackson on the day of the event to promote the fundraiser. Lape received special recognition by the Epilepsy Foundation for her work. Plans are underway to volunteer for this year’s annual event. “It’s very rewarding to know that I am able to make a difference in people’s lives that are struggling with epilepsy just as I did,” Lape adds. “I feel blessed to be able to make people aware that you don’t have to live with it for the rest of your life. Instead of being treated, it can be cured.”

We took our son to the hospital where he was admitted for observation. During the four nights that we stayed there, Kenneth and I got five hours of sleep each. We had to constantly watch Kenny so that we could alert the nurses whenever a seizure began (there were several, usually at night).

Looking back now, I think of the gauze-wrapped tongue depressor taped on the wall by his bed and the vague responses from the medical team and think that, although I knew nothing of epilepsy and had no idea what was happening, they were clueless as well. Something that’s still true today in most of society. Scary thought.

Kenny would start out with a “light” seizure which would progressively get worse and worse, going through perhaps four or five stages, and that the seizures lasted a long time, one more than 45 minutes before it was stopped with Valium. Eventually, the physician put him on Dilantin and sent us home. It was the neurologist’s opinion that Kenny had had an encephalitis-type virus and that the seizures would shortly disappear.

It was difficult to maintain a stable blood level with the liquid Dilantin. We gave him his doses religiously at 6 am and pm… setting an alarm to make certain we were never even a minute late with any dose. Finally, we DID maintain a level and after some time had passed (I doubt if it was a year), the GP told us to simply stop giving him the Dilantin….which caused Kenny tostart having seizures again. We put him back on. Sometime later the GP told us once more to stop the Dilantin. Again, a seizure. It then occurred to my husband, a pharmacist, that the doctor was wrong in simply discontinuing the Dilantin, that the dosage needed to be slowly decreased (we had never before thought to question a physician’s instructions). At the age of nine, Kenny was seizure-free and off of the medication.

During Kenny’s sophomore year in high school, he was sick a lot, complaining about his stomach and feeling funny. He missed so much school that he was placed on home bound (that’s when the parent would pick up the child’s assignments each day and he only had to go in for tests). He had both an upper and lower GI done, but all they could find was a “future duodenal ulcer”. One day when we had gone to the grocery store and he was helping me to load the bags into the car, he suddenly froze. I called his name and he answered in some sort of nonsense language. Then after a couple of minutes, he was back to earth and tired.

I took him to another neurologist on Oct. 10, 1991 and she told me that what I had witnessed was a complex partial seizure. Dilantin was prescribed again. The Dilantin was difficult to maintain a level with, so his prescription was changed to Tegretol. The dose had to be raised several times, but control was maintained until Oct. 9, 1992, when Kenny experienced a tonic clonic seizure at school. The months after that were times of constantly changing doses with only temporary results, and then his AED (anti-epilepsy drug) was changed to Depakote with the same result. Before we realized that Kenny wasn’t going to achieve any control on this specific regime, he was taking the Depakote SIX times a day.

Looking back, I think Kenny’s seizures probably never stopped when he was a child, they merely changed to something unfamiliar. There was no available literature for nonmedical personnel, so we didn’t know that epilepsy was anything other than the grand mal seizure that most people consider epilepsy to be. Kenny had been complaining for a year of “feeling funny” at times, but we all placed the blame for that on his allergies (he’s allergic to just about everything that lives, breathes, or grows). I now believe that he was having seizures each of these times….on almost a daily basis.

I turned to the web in desperation and discovered something incredible… That there was a presence called the Epilepsy Foundation of America.

In March of 1993, I called the Epilepsy Foundation of MS. I was hysterical. Kenny was seizing almost every day, had gained A LOT of weight from the Depakote, and was severely depressed. We were at the ends of our ropes. She recommended two neurologists to me, one at Oschner’s and one at UMMC. When I called, the neurologist at UMMC said that he would see us almost immediately. He’s been our friend since April of that year.

Unless you’ve experienced both sides, you have no clue what a world of difference it makes to deal with people who actually understand epilepsy. The people at the Foundation and the Epilepsy Research Center at UMMC know that it isn’t “simply” a disorder. They understand the psycho-social aspects of it as well. They understand that it effects not only the patient, but the family and friends, the work place and school, EVERYTHING.

Our new neurologist changed the rates of the Depakote and had the seizures controlled right off the bat, but Kenny continued to gain weight and developed tremors due to the med, so his AED had to be changed. We went back to the Tegretol. After some time passed, it failed again. Then we tried Neurontin. It made Kenny sick. The Felbatol was fantastic for its lack of “slowness”, but the chance of aplastic anemia wasn’t an option. One last stab was made at the Tegretol. No luck. So, it was back to Dilantin. Lamictal was added on not too long afterwards……I think that I have the order of AEDs correct. It was a confusing time. So it was that Kenny was on “toxic” levels of two meds along with an antidepressant to help deal with the ill effects. It was also determined that we should watch for signs of suicidal behaviors.

When we first met with the epileptologist, he had spoken of the surgeries now performed for epilepsy. Ever since, that had been a conversation that Kenny kept in mind. He continually asked to be considered for it, but his father and I weren’t ready for such a drastic path. April 8, 1995 changed all of that and will be forever engraved in my memory.

We had all been asleep for some time when I awoke to a strange sound. My immediate thought was that the kids had fallen asleep again with the TV on. I started to drift back to sleep, but something urged me to get up and check it out. It was 12:30am. I followed the sound into the living room and jumped into action. Kenny was lying on his back having a seizure.

He was convulsing so hard that his body was jack-knifing off of the couch at least a foot. He was blue and when I put my hands on him, he was icy cold. I tried and tried to pull him over on his side, ripping the loops from his blue jeans in my efforts. I was screaming for my husband the whole time. Finally, the two of us succeeded in rolling him over and fluids poured from his nose and mouth… Kenny was literally drowning.

He continued to seize for about 25-30 minutes before I thought to call 911. Several minutes later, he became postictal, but in a stage that was really more like another complex partial….it may have been, I don’t know. He was stumbling around with our support and touching things, his actions sometimes violent. Another 25-30 minutes passed and I called 911 again. By the time that the ambulance DID arrive, Kenny was okay, just very, very tired and with a severe headache….we sent them away.

He had four more seizures as violent and long, the last one being July 28, 1995. After that, Kenny had a seizure of some sort occurring about every two weeks. The first episode caused my husband and I to agree with Kenny, life couldn’t go on in this vein, constantly waiting for another seizure. Kenny went to Jackson on August 4 for a telemetry EEG and all went well. His seizures were identified as right temporal lobe. October 23, the Wada test results were proved that the procedure would be possible. His surgery was Dec. 11, 1995 and all of the doctors felt quite positive about the outcome.

I can’t express how frightening it was to watch the nurses roll Kenny down the hall that day. In my head were “Far Side” images of the doctors going in with an ice cream scoop and arbitrarily removing bits and parts of his brain. This was MY SON… Would he be the same person when he returned from the operating room? Would he somehow die on the table? To have these questions pinging across my brain and to know that regardless of the answer to those questions, we had no choice??? It’s a fear I wouldn’t wish on anyone.

The surgery was a moderate success. While it didn’t “cure” Kenny (our hope), it enabled him to have control on a single med at a “normal” dosage, a first for us. The recovery from the craniotomy was rough.

I don’t have great documentation of the years since that time in our lives. I know that there have been changes in meds here and there when seizures became active again. That’s the problem with epilepsy… there are no rules. Epilepsy can change with the stages of development any human transitions through. We know that. It can get better, get worse, or sometimes even go away. But a person can do this right and that and sometimes the seizures just start again of their own volition. It’s the dark shadow that has moved into our family room and refuses to leave.

Thanks to the fairly new Lamictal XR, not only are his seizures mostly controlled, but he feels better, more alert than ever before.

Life is tough. We all know that, too. For some people, it’s even tougher and for some it seems impossible. I was once asked how I do the things for Kenny that I do. My response was simple. He’s my son. How have we survived the incredible lows?

Individuals with epilepsy become socially isolated because the masses understand so little about it and it scares them. It’s a huge responsibility to ask young adults to take on someone in the situation that Kenny was in. The result is that most avoid the individual. Kenny happened to have an incredible friend who helped to carry him through, Charlie. Without that young man, I don’t know what would have happened with Kenny. Charlie made sure that Kenny had a life… He would drive 12 miles or more to pick Kenny up, take him another 12 miles or so to do something, then bring him back home. Charlie’s family has adopted Kenny as well, expecting him at any and all family events… and it’s a HUGE family!

In the midnight hours, music has been the balm to Kenny’s soul. He’s a self-taught guitarist and I could listen to him play for hours on end.

And there’s the Epilepsy Foundation of MS… I feel as if the women there moved the heavens to do whatever needed to be done to help us. Controlled or not, epilepsy will always be a part of our lives. I want to make certain that the EFM is always there for us and other families.

Recent cuts to mental health funding have caused the Foundation to lose its main source of funding. It’s my chance, OUR chance to give back to them. Kenny had always wanted to have some sort of music event to help the EFM and last year we had the first ever Rockfest for Epilepsy Awareness. We were able to raise a decent amount of money, mostly thanks to friends of mine and Kenny’s. Pretty good for a first year. More important than the money we raised, we were able to announce our presence to a few people who need us. We were able to raise our voices and scream “we’re here and ready to do whatever we can to improve your lives”.

This year we have Rockfest for Epilepsy Awareness 2011 and I’m excited because this year we have the most incredible musicians that want to make this the best music event possible. We have people across the country donating items to auction… even from the UK. There are so many in the various artistic communities that understand the task we’re undertaking in order to bring this much-feared disorder out of the darkness and myth that’s always surrounded it.

Saturday, November 12th, 2011… Write that date on your calendars. If we can’t rock the world, we’re going to at least rock this little corner of it and raise money for the EFM, raise awareness of what epilepsy is as well as who it affects, and we’re going to educate anyone who’s brave enough to take it on.

From my heart… Thank you to the Epilepsy Foundation of MS and the most incredible epileptologist in the world!

This year she recruited her grandmother, Aunt, and anyone she could to help her get an early start on this year’s campaign to raise awareness. Her Aunt suggested they make Christmas scarf’s so their new project began! They turned to their faith in God to help them raise awareness and make a difference in their community. A few weeks into the project they were invited to reserve a vendor booth at an upcoming BBQ Competition & Festival. Mrs. Rivers said she had a big argument with herself about being outside in the 100 degree heat and the additional work before she realized that their prayers had been answered!!

With that being said they were on their way to a great day of raising awareness for epilepsy. They made posters and gave out brochures, anything to help people understand about epilepsy and seizures disorders. One young girl’s passion turned into a family event that brought people together to talk about epilepsy.

She said “AnnMarie tells us that God takes care of her and helps her with the seizures”.

Special to EpilepsyUSA/epilepsyfoundation.org

Tony Coelho is having déjà vu. The former congressman and author of the Americans with Disabilities Act recalls a commencement address he gave a quarter-century ago, in the wake of the Vietnam war, in which he warned of the potential for seizure disorders in returning troops who had suffered head injuries and called for more research on the link between traumatic brain injury (TBI) and epilepsy. Today, as he watches the storm build amid reports of alarmingly high TBI rates among soldiers returning from Iraq – and the military’s apparent inability to care for them properly – Coelho is struck by the parallels. “Here I am, 25 years later, talking about the same thing,” says Coelho, who has epilepsy as a result of a head injury and is the immediate past chair of the Epilepsy Foundation. “What have we learned?

Growing Chorus of Concern

Coelho is not alone in his concern for the long-term effects of the head injuries that have become the signature injury of the Iraq conflict. A chorus of concern is rising among veterans’ advocates and medical experts across the USA who understand the heightened risk America’s returning war heroes have for a range of posttraumatic europsychological problems. Epilepsy is prominent among them.

The risk is very real, even if the precise numbers are impossible to predict. Trauma to the brain, whether mild or severe, is a clearly defined risk factor for epilepsy. Studies suggest that about 20 to 25 percent of individuals with “closed-head” brain injuries will go on to develop what is termed post-traumatic epilepsy (PTE). PTE accounts for 5 percent of epilepsy overall. The only study that has investigated the prevalence of PTE in the military, reported in 1985, found that as many as 50 percent of Vietnam veterans who had suffered penetrating brain injuries during combat developed seizure disorders months or years later.

Penetrating injuries – when a foreign object or piece of fractured skull enters the brain – are the most severe form of TBI. They are relatively uncommon in civilians and are distinct from the types of head injuries most commonly seen in U.S. troops serving in Iraq. There, most head trauma seems to be a result of the “shock wave” of high pressure that reverberates out from the point of an explosion. Improvised Explosive Devices, or IED’s, have notoriously become the weapon of choice against U.S. troops; the Department of Veterans Affairs (VA) estimates that IED’s account for two-thirds of combat injuries. These “blast injuries” can – and apparently often do – cause brain trauma, even in the absence of obvious wounds.

There is little hard data on the incidence of blast-related head injuries among U.S. soldiers in Iraq, at least that is available to the public. 2003 data from the Walter Reed Army Medical Center found evidence of brain injury in 61 percent of returning soldiers who had been exposed to blasts, according to the Defense and Veterans Brain Injury Center, a partnership between the VA and the Department of Defense (DoD).

No one knows how many of those troops with brain injuries will eventually develop epilepsy.

But with an estimated 1.4 million troops who have served or are currently serving in Iraq, even the most conservative statistics portend a looming crisis of post-TBI neurologic problems that will haunt these soldier heroes, and society at large, for generations to come.

Preventing PTE: New Priority?

The specter of a coming wave of combat-related TBI has refocused attention on the critical need to better predict whom among the head-injured are likely to develop epilepsy, and how to prevent it. It also underscores how little we yet know about preventing epilepsy.

“For many years – even decades – epilepsy research has been focused primarily on the seizures themselves: what they are, how they are generated in the brain, how they spread and what drugs might control them,” says Marc Dichter, M.D., Ph.D., professor of neurology and pharmacology at the University of Pennsylvania. “Basically, we’ve been waiting for epilepsy to happen and then seeing if we can treat it.”

This approach is in stark contrast, Dichter says, to how we as a society deal with other public health problems, such as cancer or heart disease, where we identify risk factors and try to prevent disease from occurring.

“Why aren’t we paying attention to the development of epilepsy, as we do for every other medical disease?” he asks.

Dichter is leading a DoD-funded pilot study in civilians to determine if the anti-seizure drug topiramate (Topamax®)might decrease the risk of post-traumatic epilepsy if given within 12 hours or so of a head injury. Recruitment for the trial is just beginning.

Health and led by Pavel Klein, M.D., a neurologist with Washington Hospital Center in Washington D.C., is further along. The study is designed to evaluate the safety and tolerability of levetiracetam (Keppra®) in people who have suffered a head injury. (Keppra is approved as add-on therapy for partial seizures in adults.) Klein says about 50 adults and children with TBI had been enrolled as of late April, with an eventual goal of 90. If Keppra is found to be safe for use in this population – and so far Klein says it appears to be – the goal is to initiate a much larger study to investigate the drug’s efficacy in preventing PTE.

At least three well-designed clinical studies have previously investigated other anti-seizure medications for preventing injury-induced epilepsy. All have failed to show a benefit. The trials are exceedingly difficult to do, say Dichter and Klein, because they are labor intensive, costly, and take a long time to recruit enough subjects to have meaningful statistical power. Yet it’s critical that they be done. “If you don’t study the question, you’ll never get an answer,” says Dichter.

“Epilepsy is a chronic condition, and a proportion of people will develop refractory epilepsy, which requires life-long, extensive medical treatment and management,” says Klein. “It’s a complicated recovery, in many ways. Prevention is better than treatment.”

‘Strike While the Iron is Hot’

Coelho is particularly concerned that troops who develop seizures long after their active duty is finished may be denied disability benefits. “It has been a huge fight to get the VA and DoD to understand that epilepsy can be a delayed effect of war trauma,” he says.

Still, he points out, the current situation, dire though it is, presents an opportunity to act.

“Congress right now is very conscious of the need to take care of our military men and women,” Coelho says. “It is critically important that we take advantage of the heightened sensitivity to this situation to uncover the facts, identify the problems and go to Congress to get the appropriate funding to get the job done right. We need to strike while the iron is hot.”

Brenda Patoine is a freelance science writer who has been covering neuroscience for more than 15 years. She can be reached at bpatoine@aol.com.

The recommendation stems from a study of 282 school-age children with an IQ of at least 70 who had experienced their first epileptic seizure within the previous three months. The researchers looked at additional risk factors for cognitive problems, including multiple seizures, use of epilepsy drugs and signs of epilepsy on early tests of brain waves. For comparison, they examined the same data for 147 of the children’s seizure-free siblings.

Among the children who’d had at least one seizure, 27 percent showed cognitive difficulties at or near the time of the first seizure, and 40 percent of children who had additional risk factors showed signs of cognitive problems. Children with all four risk factors were three time more likely to have cognitive problems by their first clinic visit than were children who’d not had seizures.

“Our study highlights the importance of testing children with epilepsy for possible cognitive problems soon after they are diagnosed with epilepsy in order to avoid these issues affecting them later in life, especially if they have additional risk factors,” Philip Fastenau, a professor of neurology at Case Western Reserve University School of Medicine and the Neurological Institute of University Hospitals in Cleveland and an author of the study, said in a news release from the American Academy of Neurology.

Fastenau and his colleagues also found that children who took epilepsy drugs had problems associated with processing speed, language, verbal memory and learning, compared with children who didn’t take epilepsy drugs.

“Children who take these medications should be closely monitored for cognitive problems resulting from the epilepsy drug,” Fastenau said.

“Surprisingly, our study also found that academic achievement in these children was unaffected around the time of the first visit, about three months after the first seizure in this study, suggesting there is a window early in epilepsy for intervention to avoid hurting a child’s performance at school,” he said.

However, David Loring, of Emory University in Atlanta, said in an accompanying editorial that, because the cognitive problems were noted near the time of the first seizure, it was clear that neither the epilepsy nor the drugs caused the cognitive difficulties.

“It provides strong evidence that these cognitive problems can be attributed to underlying brain abnormalities that lead to epilepsy, rather than from extended exposure to epilepsy drugs or the effect of numerous seizures,” Loring said.

The study appears online Aug. 12 in Neurology.

More information

The American Academy of Family Physicians has more about epilepsy.

– Robert Preidt

SOURCE: American Academy of Neurology, news release, Aug. 12, 2009

Copyright © 2009 ScoutNews, LLC. All rights reserved.

The study proves that a faulty version of a gene called ATP1A3 causes epileptic seizures in mice, said lead researcher Dr. Steve Clapcote, of the Faculty of Biological Sciences at University of Leeds, and colleagues.

“ATP1A3 makes an enzyme called a sodium-potassium pump that regulates levels of sodium and potassium in the brain’s nerve cells. An imbalance of sodium and potassium levels has long been suspected to lead to epileptic seizures, but our study is the first to show beyond any doubt that a defect in this gene is responsible,” Clapcote said in a university news release.

He and his team studied a special strain of mice with an inherited form of severe epilepsy and found that the mice had a defective ATP1A3 gene. When these mice were bred with mice that had an extra copy of the normal ATP1A3 gene, the additional normal gene counteracted the defective gene and the offspring didn’t have epilepsy.

“Our study has identified a new way in which epilepsy can be caused and prevented in mice, and therefore it may provide clues to potential causes, therapies and preventive measures in human epilepsy,” Clapcote said.

The study appears in this week’s online edition of the Proceedings of the National Academy of Sciences.

“Our results are very promising, but there’s a long way to go before this research could yield new antiepileptic therapies. However, the human ATP1A3 gene matches the mouse version of the gene by more than 99 percent, so we’ve already started to screen DNA samples from epilepsy patients to investigate whether ATP1A3 gene defects are involved in the human condition,” Clapcote said.

More information

The American Academy of Family Physicians has more about epilepsy.

– Robert Preidt

SOURCE: University of Leeds, news release, Aug. 3, 2009

Copyright © 2009 ScoutNews, LLC. All rights reserved.

More information The Epilepsy Foundation has more about women and epilepsy. — Robert Preidt SOURCE: JAMA/Archives journals, news release, Aug. 10, 2009 Copyright © 2009 ScoutNews, LLC. All rights reserved.

By ELISABETH LEAMY and VANESSA WEBER of Good Morning America on ABC
Imagine going to the pharmacy to fill your prescription only to learn later that the drug your doctor prescribed is not the one you received. The prescription was switched without your knowledge or permission.

Pharmacies could be switching your drugs without your knowledge.

Not just switched to a generic version of the prescribed drug, but to a different drug altogether…

Click on the image to view the video.

by Sandra Knisely

In 1997, an episode of the popular Pokemon cartoon gained worldwide attention when more than 800 Japanese children with photosensitive seizure conditions were admitted to the hospital after viewing the cartoon or the subsequent news coverage of it.

Researchers from the UW-Madison Trace Center have released a software tool that could prevent similar incidences of media-triggered seizures in children who are browsing the Internet or using computer programs.

The software, called the Photosensitive Epilepsy Analysis Tool (PEAT), allows Web developers to evaluate their site content and determine whether the content presents a danger to people with photosensitive epilepsy.

PEAT is the first tool developed for evaluating Web-based content, and a beta version is available for free download from the Trace Center, a pioneer center that designs mainstream information technology accessible to people with disabilities.

Gregg Vanderheiden, a UW-Madison professor of industrial and systems engineering and biomedical engineering, directs the Trace Center.

“As Web content becomes more dynamic and Web pages begin to resemble television, it is important that we not start inadvertently triggering seizures in people with photosensitive seizure disorders,” he says. “PEAT can help prevent that.”

Approximately one in 4,000 people are diagnosed with photosensitive epilepsy and are subject to seizures triggered by certain types of flashing in Web, computer or television content. The condition usually begins before age 20 and is most common between ages 7 and 19. Seizures are most likely to occur when children or teenagers with the condition view content where large areas of a screen flash rapidly and flicker on and off repeatedly.

PEAT allows developers to capture on video a Web browser or application window and all of the actions that occur in the window. Developers then can analyze the video for seizure risk. Developers can also use PEAT to determine if Web content meets the new Web Content Accessibility Guidelines 2.0.

PEAT is the result of six years of collaboration between the Trace Center and professor Graham Harding from Cambridge Research Systems. The National Institute on Disability and Rehabilitation Research, which is part of the U.S. Department of Education, funded the development of PEAT.

source: University of Wisconsin http://www.news.wisc.edu/16917