Sunday, December 30, 2007

IV treatments' impact on seizures

Keziah Jermyn is 5, but the Rochester girl doesn't remember past Christmases.She was too consumed by seizures that began at age 3.But this Christmas will be different.

Keziah (pronounced KEZZ-ee-uh) would be fine one moment, then suddenly fall to the ground for a few seconds in what seemed like fainting spells. These unpredictable drop seizures left her with cuts or bruises, knocked out her front teeth, made her tired and disrupted her life.

Seizures are caused by abnormal, excessive firing of brain cells that triggers involuntary movement or loss of consciousness.Keziah's seizures soon began lasting longer, then struck in her sleep. She would scream out and cry, which was heartbreaking, says her mother, Theresa "Tracy" Jermyn, 35.

"There was nothing any of us could do for her," says Jermyn, a single mother to Keziah and brothers Noah, 9, and Garret, 12.When the abnormal firing spread to the whole brain, Keziah's body would convulse for a minute or two in grand mal or generalized tonic clonic seizures.

"I don't think they ever got less shocking," says her mother, who became exhausted and frantic trying to protect her daughter from injury and stop the daily attacks. At their worst, seizures struck 15 minutes apart, at least 20 times a night.

Keziah was put on one after another of the roughly 10 major medications used to treat epilepsy, the neurological disorder defined by repeated seizures. None helped — which is very unusual.
A medically supervised ketogenic diet — a difficult high-fat regimen of mostly heavy cream and butter — didn't help."We were pretty desperate," says Dr. Michel "Mike" Berg, neurologist and medical director of Strong Epilepsy Center in Rochester. Keziah wasn't a good candidate for surgery because imaging tests didn't precisely locate the origin of her seizures, says Berg. "We had exhausted, essentially, all options."

In June, after 18 months of seizures, Berg turned to intravenous immunoglobulin G, a type of infection-fighting protein extracted from blood. These antibodies have been used for 30 to 40 years in selected seizure cases. IgG is the primary treatment for certain immune deficiencies, but hasn't been studied in a systematic, randomized way for epilepsy, says Berg.

Keziah began with four days of eight-hour infusions in June. Over the past six months, she's had one, six-hour infusion every three weeks. She hasn't had a seizure since July 4.

"She had a miraculous response to this treatment," Berg says of Keziah. "We hope that's sustained."In 20 years, Berg has used IgG in five patients with epilepsy. A few, but not all, had a good response.

Each IgG treatment costs about $6,000, Berg estimates. If it works, he says, that's substantially less than the lifetime cost to society of someone who's unable to function because of chronic epilepsy.

Jermyn, who works in provider relations at Excellus BlueCross BlueShield, doesn't pay that much, but the various out-of-pocket costs to address the seizures have added up. She pays $70 per infusion, plus $20 for every doctor's office visit and each electroencephalogram to measure and record the brain's electrical activity. The medications, often abandoned in less than a month, had cost her $40 apiece. Each of the seven hospitalizations last year cost another $100 out of pocket, plus $50 for emergency room visits.

Now, Keziah takes no medication. She has learned to write letters and spell her name in kindergarten. She likes to color and to jump on a trampoline with her brothers.

Halloween was all new to her. She was delighted to learn she could dress up as Shirley Temple — with all-natural ringlets — and get candy.More recently she heard that another holiday was coming. "Mama, I want to be Hannah Montana for Christmas," she announced, before understanding more about the gift-giving religious holiday.

"It's so much fun," her mother says. "This is really the big Christmas gift for us."

Saturday, December 29, 2007

Medical experts are looking into epidemic of seizure disorder

Sixteen Canadian medical experts were in Ngie Subdivision in Momo Division, Northwest Province recently to continue with an in-depth investigation into the incidence of epilepsy.

Epilepsy, which is becoming an apparent epidemic in Momo Division, is a major problem and an important cause of mortality and disability in developing countries. Observations made by the Association of Orphans and the Disabled, ASODI, in Ngie, by its CEO, Jerome Ambanibe, and confirmed by Dr. Atoosa Kourosh, estimate that more than 40 percent adult population of Ngie is infected by epilepsy.

This illness in Ngie appears to be an early childhood onset seizure disorder that lasts well into adulthood, being life long in most cases.It has been established that the increased incidence of epilepsy in Ngie is caused by neuro-cysticercosis caused by taenia solium.

More specifically, the experts say epilepsy patients in Ngie have a higher percentage of sero-positive to taenia solium than a matched unrelated control population.

Unconfirmed reports indicate that in most patients, the seizures are primary generalised but in some cases could be secondarily generalised convulsion.There are many accounts of severe seizure-related injuries -burns, falls, death and so on from uncontrolled status epilepticus and drownings.

Patients with partial complex seizures as manifested by blinking and staring may have recurrent attacks within the day and nights with seizure frequency of 10 to 15 times a day.

According to the medial experts, patients with generalised or possibly secondarily generalized convulsive seizures have seizures about three to five times a day.

In Cameroon, epilepsy is believed to be caused by ill will, supernatural forces and witchcraft, leading to high levels of stigmatisation, incrimination and discrimination. Therefore, those who have epilepsy may be hidden away by their families. Most do not receive education or work. In addition to an immense human tragedy, this health problem has become a devastating social and economic problem for the region.

Over the past few years, ASODI has assembled a cohort of 550 patients in Ngie mostly children and adolescents with epilepsy. This number, which represents only a fraction of the number of cases in the region is increasing at a rate of 5-10 newly identified cases per month.

The Njikwa Subdivision has about 300 patients, Widikum 400 patients, Mbengwi Central 150 patients.There seems to be a markedly increased incidence of childhood onset seizures in the whole of Momo Division, but Ngie appears to be the epicenter of this epilepsy outbreak.

Treating Epilepsy

For developing countries, the Phenobarbital drug has been found useful in the treatment of epilepsy. While this drug may be available through the central pharmaceutical supply chain, it is not accessible to most of the patients.

For the past two years, ASODI CEO and his staff have provided educational sessions with members of the community and distributed the drugs to the villages affected by epilepsy.
A significant number of the patients have been found to be Phenobarbital responsive, with either decreased frequency or total cessation of seizures whole on the medicine provided through funds donated by charitable groups.

While in Ngie, two of the Canadian medical experts - Irene Elliot and Mary Douglas handed supplies worth more than FCFA 1.5 million to ASODI for the investigation which will include blood screening from door to door to identify causes and people living with epilepsy.

At every meeting with the epilepsy patients in most of the villages, the Canadian health officials told the population to watch out against pork which is not well cooked.They explained that epilepsy patients in Ngie and Cameroon as a whole have a higher percentage of neuro-cysticercosis especially in areas where pigs are raised as a food source.

It should be noted that pigs are common in Momo as in other parts of Northwest and West Provinces where they are often kept close to houses on tethers or in small pens.

Brain surgery may free 7 years old girl from seizures

Having an epileptic seizure every now and then would be bad enough. Seven-year-old Christina Mauk has them every few minutes.

Her mom, Melissa Mauk, Bonner Springs, said Christina has been having epileptic seizures of varying types and degrees of intensity since she was 5.

With medication, “we have the large ones semi-controlled,” Mauk said.

That leaves milder but still potentially dangerous attacks that Christina never goes more than half an hour without suffering, Mauk said.

The seizure symptoms range from Christina going glassy-eyed or losing the perception of color, to losing control of her body. Christina even has seizures in her sleep, Mauk says. That can be dangerous, resulting in her falling off her bed. Luckily, Christina gives a warning.

“She has this hysterical laugh she does before she goes into seizure that tells us she’s about to,” Mauk said.

The longest she goes without an attack is half an hour, Mauk said.

It’s no surprise, then, that the seizures interfere with Christina’s life in myriad ways. She’s been on nine different kinds of medication, which have lessened the seizures so that they are usually petite mal instead of grand mal seizures. The medications have affected her learning ability to the point Christina can’t spell her own name, and can only count as high as 10 without using her fingers.

She spends half of her school day at Bonner Springs Elementary in regular class and another part in special-needs class.

Mauk said Christina can interact with other people but other activities are difficult.

“Eating is really an obstacle for her,” Mauk said. “She just gets food all over her … She can still shower bathe herself,” but she has to have someone else present.

Christina had her first grand mal seizure while in Head Start, at the age of 5, Mauk said.

Mauk then bought a book to read up on epilepsy and said she found there are 25 different kinds of seizures.

Her neurologist said MRI scans showed no abnormalities of brain or skull itself, Mauk said.
Mauk said as she understands it, “you can have epilepsy, but there has to be a trigger.”

That trigger could be hereditary, Mauk said, perhaps Tourette’s Syndrome. On the other hand, she said she was told EEG readings of Christina’s brain activity had been consistent with encephalitis and viral meningitis. Mauk said she didn’t know why tests hadn’t been conducted to determine whether either of these were the cause.

There is some hope for Christina, though. A vagus-nerve stimulator, comparable to a pacemaker for a nerve located between the collarbone and the neck, may reduce the incidence of Christina’s attacks. Mauk said her doctors told her it was a 50-50 chance that it would work. She’s having the surgery at Children’s Mercy hospital to implant the device Thursday.

Mauk said the stimulator will give a tiny electrical charge every minute or 30 seconds, and Christina won’t feel it.

That uncertain hope also comes with a steep price: about $30,000. Mauk said Medicare won’t cover the cost because the operation isn’t approved for children under 12.

But, Mauk said “I’m not waiting another five years to see how bad it gets.”

To help cover that cost, several Bonner Springs businesses — Woods Liquor, Woods Gas Station, Amoco and Dari-Dine —have setup donation jars for customers’ spare change and bills.
Mauk said so far nearly $600 had been raised. Another collection was initiated by Bonner Springs High School student Anna Hutchison with a collection table at lunch in the cafeteria. She’s managed to raised more than $200 from students and staff.

Mauk, who works as a crossing guard for the school district, is grateful to everyone who donated, and to show her appreciation she took out a small ad in the Chieftain.

A man's victory over seizures disorder

As told by Mark Ashby

In 1981, I was an 18-year-old active duty U.S. Marine when I suffered from several grand mal seizures and was diagnosed with epilepsy. My Marine Corps career ended abruptly because of the diagnosis and I was medically discharged.

Right after my diagnosis, my life was a tough road. I first began treatment with a medication that had significant side effects, and I felt like I was at the bottom of the bottom. The effects of the medication impacted my lifestyle and I was no longer able to physically train as I had in the Marines. At one point, I stopped taking my medication, deciding I would rather have seizures than deal with the side effects. The fact that I considered seizures the better option was a frightening reality!

As technology and medicine improved over the years, my doctor switched me over to a medication that had fewer side effects. But I still didn’t feel like my old self. In 2003, however, my doctor suggested I try Carbatrol because he had seen positive results with other patients on the medication and felt that I also might benefit from this treatment. I tried it, and I finally felt like me again! Since my doctor prescribed Carbatrol for me, I have not experienced a seizure when I have taken my twice-daily dose, and I am also side-effect free. The Carbatrol Full Prescribing Information states that the most common side effects are dizziness, drowsiness, unsteadiness, nausea and vomiting.

Since being prescribed Carbatrol, I have been able to enjoy the very active, athletic lifestyle that means so much to me. Because I am confident with Carbatrol, I can now push myself to perform at the highest level without worrying as much about having a seizure.

In fact, I am now doing things I would have never dreamed of back when I was first diagnosed with epilepsy. In the span of seven months in 2005, I completed the Ironman Arizona and the Ironman World Championship in Hawaii. These triathlons each combine a 2.4-mile swim, 112-mile bike race and 26.2-mile run. I also completed five half-Ironman triathlons and placed second and third in my age division in two of the competitions.

I realized I have a gift and the perseverance to participate in these events, but I know that I couldn’t do it without regularly taking my medication. I depend on Carbatrol.

This patient testimonial reflects one man's experience with epilepsy and his treatment with Carbatrol. Patients on antiepileptic drugs may experience breakthrough seizures. This information is not intended as a substitute for medical advice. Patients are advised to consult with their physician before beginning any medical treatment for epilepsy.

11 months old boy dies from seizures due to abuse

A 23-year-old Crawford County man will stand trial on charges he killed his girlfriend's 11-month old son by throwing the boy onto his bed.

Eugene Fenton, of Espyville, was ordered to stand trial after a preliminary hearing Monday on charges of criminal homicide, aggravated assault, reckless endangerment and child endangerment.

Hunter Shoenberger died Oct. 24 at Children's Hospital of Pittsburgh. Authorities say the boy's mother called paramedics the day before when the boy was having seizures and difficulty breathing.

Testimony at Monday's hearing indicated the boy was injured while his mother was working overnight as a nurse's aide on Oct. 22-23.
Fenton remains in the county jail.

Saturday, December 15, 2007

Surgery used to stop seizures

Doctors have split the brain of a teenage girl in two to stop a rare brain-eating disease from spreading, the Daily Mail reports.

Janine Leach, 15, from Sunderland, U.K., has a disorder known as Rasmussen s Encephalitis, which could trigger upwards of 100 seizures a day as surges of electricity in her brain made her nervous system misfire.

Leach was diagnosed with the condition at age 11. She decided to undergo a risky surgical procedure in order to stop the seizures.

The surgery involved cutting away the diseased half of her brain, but leaving it inside her skull to prevent an increased risk of blood clots.

The procedure stopped the seizures, but left Leach paralyzed on the left side of her body. Doctors believe that with physical therapy she'll be able to walk again.

Doctors treat Epilepsy in pregnant women

Government Stanley Hospital in the city proposes to put in place a pregnancy epilepsy registry that will be linked online to the international registry.

The move will provide patients details of medicine and ensure follow-up, neurologists at the hospital said on Tuesday.

The decision to set up a registry was made as 50 pregnant women were currently registered with the Neuro Medicine department for treatment, said assistant professor R. Lakshmi Narasimhan. On Tuesday, a dozen patients undergoing treatment for epilepsy were given awards and certificates for compliance in drug taking, reporting complications promptly, and for ‘best behaviour’ in the department’s outpatient ward. The event was attended by over 200 patients and their attendants.

The department has invalid patients whose attendants come regularly to collect their medicines. The attendants were also honoured. It is the only hospital in the State that provides medicine refills on a monthly basis, the doctors said.

They also conducted a patient education programme, teaching them about the disease, first aid and the medicines to be given in case of emergency. Fatigue and poor diet can trigger seizures. A diet rich in greens, sodium, magnesium and calcium and yoga helps prevent seizures. Women could lead a normal life as their condition is not hereditary, doctors said.

Epilepsy is caused by uncontrolled electrical activity in the brain, but is not a lifelong condition for many people. “If you are seizure free for five years the chances of recurrence are very less. We have thousands of patients who have been weaned away from drugs,” Dr. Lakshmi Narasimhan said.

A person has to spend Rs.600 a month on medication that includes multi vitamins. The hospital records the dosage and encourages the patient to maintain a diary of seizures. This helps the doctors monitor the patients’ progress.

For several years now, the hospital has been conducting rehabilitation programme for women, with support from pharmaceutical firms. So far, over a dozen women have been trained in making decorative flower vases, fabric painting and manufacturing household cleaning products such as phenyl.

Friends sing to friend to get him out of seizures

Mahlon Moore knows her Social Security number by heart. He fills her pillbox every week. He reaches the things on the top shelf that she can’t.

She sings to him.

“I give her a pill at night and she sings me out of my seizures,” he said.

The pair has lived together for almost 10 years in a house that smells a mix of air freshener, laundry detergent and staleness. They live behind loosely drawn shades in the lights of a Christmas scene blinking on a shelf.

Two or three times a month, Moore leaves the house. Sometimes for doctors appointments, other times to pick up essentials, like light bulbs. Anne Good leaves maybe once a month.

Multiple sclerosis and nerve problems have folded her body in on itself, confining her to a wheelchair.

“I sang the ‘Star-Spangled Banner’ last time until I couldn’t remember the words,” Good said. “Then I just hummed.”

She said when Moore has a seizure his head turns to the right. If she can get him to turn it to the left, he can usually break it. The seizures last anywhere from five seconds to five minutes. Once, when he was a boy in Meadowview, a seizure lasted three-and-a-half hours. The doctors didn’t think he’d live. But he did and went on too work at Columbus-McKinnon in Damascus in the 1970s. He stayed there until his seizure got too bad. He decided to quit when he had 35 in just one week.
“I didn’t think what I was drawing each week was worth it,” he said.

Moore met Good on the street in 1994. He was walking up a steep hill, the hill that the two now live on. She invited him to rest in a chair beneath a tree.

“After about 20 minutes it was as if we’d known each other all our lives,” he said.

A few years later, after Good’s mother died, the two decided that Moore should move in. He has fewer seizures now, since he has moved in. The house is calmer, less stressful than the apartments where he had lived. Still, the seizures act up now and again, especially when people visit.

Some days he has more, some days less. Not long ago, he had three in one day.

“It’s scary, I never know when I’m going to have one,” he said. “I’ve got no control and I’m just left awfully, awfully weak.”

Family, friends, church and civic groups and a home health nurse take care of Moore’s and Good’s daily needs. The drugstore down the road delivers Good’s medication to her.

“You were out not long ago,” Moore said, but he can’t quite remember when her last doctor’s appointment was.

“I have no other reason to go out,” Good said. “I listen to the news and I guess I’m happy to be at home. I’m not a cold or a hot weather fan anyways.”

“I’d rather be here with her than anything else,” he said.

“I feel safer here than anything else,” she said.

He reads to her and cooks. Cheese omelets, unless she’s in the kitchen too, telling him what to do. She loves to cook, she said, but can’t reach stove anymore. So he does the cooking, dirtying every dish in the house in the process.

They’re happy where they are.

Neither Good nor Moore say they need much. Good doesn’t even want anything for Christmas, except for Moore to get better. He was diagnosed with cancer about a year ago. He has three more chemotherapy treatments to go, but quit them last week after he got too dizzy and his blood pressure got too high.

And they have fun where they are.

Sometimes “when we get wound up,” Good said, they sing along with Andy Griffith at the top of their lungs.

“We don’t get wound up, not too often anymore,” she said.

They did last Christmas, though, cranking the stereo so loud that Moore swears you could have heard it in Kingsport.

“That might be fun to do at Christmas,” he said, looking at her.

Between them, on the coffee table, a Christmas cactus droops. It hasn’t bloomed yet. Moore said it looks as if the buds could pop through any minute now.

Tuesday, December 11, 2007

Nasal spray causes seizures in children

A nasal spray designed to stop kids wetting the bed is under review by Australian authorities after US regulators linked it with seizures and death.

The drug, desmopressin, has been found to trigger potentially-fatal attacks in some people who have used the intranasal formulation.

The US Food and Drug Administration has received 61 reports of serious adverse events, including two deaths, and warns it should no longer be used.

It said children were particularly at risk of the seizures, which are caused by hyponatremia, or an abnormally low concentration of sodium in the blood.

A spokeswoman for Australia’s Therapeutic Goods Administration said the authority “was aware of the issue” and would review the product in light of the new reports.

This would ascertain whether warnings should be strengthened or the product listed as restricted use, she said.

Desmopressin is made by several manufacturers and comes in a variety of formulations, including tablets.

The FDA had received 61 reports of hyponatremic-related seizures associated with the use of desmopressin. The nasal spray was used in 36 of the cases, with 25 involving children.

More than half of all affected were also taking another medication, making it difficult for authorities to establish a definite causal link.

The formulation in no longer approved in the US and the FDA has warned all other formulations should be used cautiously in patients who are on other medication or might need to drink more fluids because of activities such as exercise.

The drug works by limiting the amount of water that is eliminated in the urine and is used to prevent excessive thirst, urination and dehydration caused by injury, surgery and certain medical conditions including a form of diabetes.

Can Police lights cause seizures?

Hattiesburg Police said Saturday they are investigating a pregnant woman's complaint against two officers during a traffic stop.

Valerie King of Hattiesburg filed the complaint after the car in which she was a passenger was stopped about 8:15 p.m. Wednesdayby an unidentified officer who was joined by a second officer.
King, in a letter to the Hattiesburg American published in Saturday's edition, said she is seven months pregnant and suffers from juvenile myoclonic epilepsy, which, when exposed to flashing lights, can cause small seizures.

"I stepped out of the vehicle to explain this disorder and ask the officers to consider the health of my unborn baby and turn off the flashing lights," King wrote.

"The assisting officer screamed for me to get back in the vehicle and close my eyes if I had a problem. We were detained another five minutes after which I had three small seizures induced by the police strobe lights.

"My health and the health of my baby were disregarded by the police. I was never disrespectful or rude to the officers."

Police spokeswoman LaShana Sorrell said in a prepared statement, "Our department has received a complaint and an investigation into the allegations is in the beginning stages. All allegations are taken seriously and at the conclusion of our investigation all persons involved will be notified of our findings."

Police declined further comment.

Radio gets involved in informative session on Epilepsy

A radio personality noted for playing oldies, perhaps, inspired a younger audience in Vilonia this week.

Don't be afraid. Instead, be a friend to someone with epilepsy is the message that radio personality John Lee of K106.3, was teaching kindergarten classes at Vilonia Elementary School Friday in observance of Epilepsy Awareness Day.

"If someone has seizures we call it epilepsy," Lee told kindergartners. "It's not a disease. It's not something you can catch like a cold. The best thing to do for them is to be a friend."

The pint-sized participants, listened tentatively as Lee encouraged them to not be afraid of a class mate should they see one appearing like " a fish on a dock flopping around." Instead, he encouraged them to watch for warning signs as well as to react responsibly.

"Make sure you get things out of the way so they don't hurt themselves," he said. "Put something under their head such as a sweater or your arm."

Seizures, he told the students, are muscles tightening and loosening.

"If you are the buddy, don't panic," Lee said. "Remember it's just a seizure. Don't try to hold them down. It shouldn't last but a few seconds or at the most a few minutes."

He told the students when their buddy ceases seizing they might be confused.

"Tell them they were seizing and everything is cool," Lee offered. Should a seizure last more than five minutes, Lee told the children that their teacher or an adult would need to call 911. But, for anyone seizing less than five minutes there was no need to call.

"Just make them comfortable," he said. He also described some other symptoms of epilepsy including looking off into space.

Kids with epilepsy, Lee said, take medications that should result in the seizures to "well, kind of going to sleep."

Lee allowed the children to ask questions which he attempted to answer on their level. One youngster said she had suffered a seizure once. Having one seizure, Lee told the children, does not constitute epilepsy.

Lee told the children that he knows a lot about epilepsy because his son, Robby, has epilepsy. Lee said his son had his first seizure at age seven in a classroom. At one point, Lee said, he was having 65 episodes per day. Several surgeries and medical procedures as well as medicines later, Lee said, now his son is in a regular school in the seventh grade.

"Everything seems to be good," Lee shared.

Although many of the youngsters appeared to have a little difficulty pronouncing the word exactly right, most pledged to be friends to people with "epilexy."

Lee also entertained the children by singing "You've Got a Friend in Me," from Toy Story while playing a ukulele. The children returned the favor by singing "Happy Birthday," to him.

In addition, other educational activities involving Epilepsy Awareness Day were being conducted on other campuses in the Vilonia School District.

Brain surgery is the answer to violonist seizure disorder

After Martha Curtis awoke from surgery that removed much of the right side of her brain to stop epileptic seizures, doctors handed her a violin and told her they wanted to test her ``music memory.''

Wearing a hospital gown, and with the right side of her head shaved to reveal a red, curving incision, Curtis began playing a violin solo composed by Johann Sebastian Bach in the 18th century.

``They kept saying they were worried about music memory and so I played solo Bach because it's the hardest stuff in the world to memorize,'' said Curtis, 51, of Squirrel Hill.

``What I didn't realize is, that's not what they meant. They were afraid I would open my case and not know what to do. Music memory is the memory that there's music in the world. They were wondering if I'd know what to do with a violin.''

Curtis spent a recent afternoon this month, National Epilepsy Awareness Month, playing the violin in her living room and telling her story. She lived with epileptic seizures while pursuing a career as a concert violinist. When the seizures threatened to silence her music, she turned to brain surgery in 1991.

``Most patients with epilepsy are usually controlled by medication close to 60 to 70 percent of patients,'' said Dr. Hans Luders, director of Case Western Reserve University School of Medicine's Department of Neurology. ``In Martha, it was not. Her case was unusual in that she is a highly performing artist. We did not want to take away the music.''

When Curtis was 3 and living in Ann Arbor, Mich., she suddenly began convulsing with seizures, which makes breathing irregular and starves the brain of oxygen. Her mother took her to a hospital, where doctors stopped the seizures with the barbiturate Phenobarbital.

Though no one is certain why, doctors think her seizures might have begun when she contracted measles.

``My mother started to hover this is an important thing for people with epileptic children to know mothers get scared and start to hover, which is an understandable response, but isn't helpful,'' Curtis said. ``My doctor said to her, 'Your child has a medical problem, but you could make it a very serious problem. Get out of her way.'''

So her mother, Anne Curtis, gave her daughter more freedom. She introduced her to the piano and dance lessons. When she was 9, Curtis picked up the violin.

``What that did was put me in an orchestra. And that's what saved me,'' Curtis said. ``You have 100 people on stage vibrating together. It's huge; it feels really good.''

The early exposure to music likely helped rewire Curtis's developing brain, shifting memory, emotions and spatial navigation to the undamaged, left side.

``I don't know if she would have survived at all without music,'' said Charles Castleman, a violinist who became Curtis' teacher at the University of Rochester's Eastman School of Music. ``She was at an age that she was capable of moving all those functions in the part of her brain that had gone bad to the other side.''

Music ultimately forced Curtis to pursue brain surgery.

She graduated salutatorian from the Interlochen Center for the Arts, a Michigan high school, and with honors from Eastman. But through it all she had small seizures, called simple partial seizures. As she learned later, they originated in a part of her brain that controls fear.

When the seizures started, Curtis felt a growing sense of dread that sometimes got so bad she panicked and thought something was coming over her left shoulder to attack.

Because of the seizures, she didn't think anyone would hire her as a full-time violinist. Instead she worked part time for three orchestras in northeastern Ohio and played concerts throughout the tri-state area.

She met her future husband, Walter Jackson, in 1983 when she was playing with a string quartet in Wheeling, W.Va. She knew she'd marry him after her first seizure with the quartet.

``I came to ... and there's this cellist smiling at me,'' Curtis said. ``No one had ever smiled at me after a seizure. No one. And he smiled at me and told me I had a seizure and it's OK now. ... I married him because he was that special that he could be OK when I wasn't.''

Jackson, who read about epilepsy after meeting Curtis, had learned what Curtis is striving to teach others: People with epilepsy should be treated normally, not feared.

``I knew that she was not, at that point, in a life-threatened state and that what she needed most was reassurance that she was safe in her surroundings,'' Jackson said. ``Showing anything else would have detracted from my ability to convey that message.''

In April 1990, Curtis had four grand mal seizures serious seizures that cause the body to convulse. She hadn't had one since she was 14. Three of the seizures happened on stage.

``Once I came to, my husband was right there with me, smiling,'' she said. ``I said, 'It's going to be OK, just give me my violin.' Even he wouldn't give it back to me. It just crushed me.

``By June, two months later, I was sitting in Cleveland Clinic with Hans Luders.''

A series of tests showed doctors that Curtis' seizures were originating in her right temporal lobe, buried deep in her brain behind her right eye. If doctors could remove that part of her brain, the seizures would stop. Her first and second surgeries didn't work. Doctors didn't want to do a third for fear they'd remove too much brain and paralyze her left side or blind her.

``The problem was, I couldn't be on stage unless I challenged my brain like this, unless I got rid of this,'' Curtis said. ``I had to put on the line the playing, in order to save the playing.''

The third surgery, almost three years after seizures forced Curtis off the stage, succeeded. With the front half of her right brain gone, her seizures stopped.

Curtis returned to Eastman to study with Castleman in preparation for a recital to restart her career. As she began performing again, she found herself sharing her life story with audiences, and illustrated it with a slide show featuring her brain scans.

Eventually it turned into a choreographed performance. She travels the world as an inspirational speaker, averaging 30 concerts a year.

Along with playing to audiences again, Curtis became a mother. After her husband's computer science career moved the couple to Pittsburgh, they adopted a daughter, Eliana, 8, and later a son, Ian, 6.

``It took a lot of involvement from me to have a life that I wanted to live. That's what's important,'' Curtis said. ``You have to call your own shots.''

Saturday, December 01, 2007

Driver experiences seizures while behind the wheel

A driver who was experiencing repeated epileptic seizures was airlifted from Route 107 early Sunday afternoon after Bethel firefighters extricated him from the wreckage of his small station wagon.John Merrick, 41, of Northfield was listed in fair condition Monday afternoon at the Dartmouth Hitchcock Medical Center in Lebanon, N.H.

"He ended up with a broken leg and a minor concussion. It looked worse than it was," Vermont State Police Trooper Mark Harvey said on Monday.Harvey said the onset of the seizures was the apparent cause for the accident that occurred when Merrick's vehicle, which had been northbound, went off the right side of Route 107 and head-on into a tree just north of Tozier's Restaurant.

Merrick was trapped inside the car with his dog."Both of his feet were pinned in pretty good," recalled Bethel Assistant Fire Chief David Aldrighetti who was in command of the rescue effort, adding, "He was having epileptic seizures – quite a few of them actually."Bethel's volunteer firefighters were joined at the scene by White River Valley Ambulance and White River Valley Rescue which brought additional hydraulic rescue tools.

With the large turnout of personnel, the groups were able to pry Merrick out of the vehicle despite his on-going seizures and transfer him to the DHART medivac helicopter, which landed in a small field nearby.

Aldrighetti said Merrick's fiancé arrived on the scene shortly after the accident and was able to talk to him before he was airlifted out.Aldrighetti added that while the dog was limping after it was freed from the car, "it was taken off to the vet and it looked like it was going to be okay."