Kids and Epilepsy

More than two and a half million Americans are living with reoccurring brain seizures from what is commonly called 'epilepsy' and as many as ten percent are children.

Six year old Haley Smith's first seizure arrived before her first birthday and continues to this day. Her family is working to raise awareness for this often misunderstood condition.

You never know by looking at Haley that she has any health issues. But this little girl has weathered hundreds of convulsive seizures. Cathy Smith, whose daughter is living with epilepsy, says, "The third one came and they said as an epileptic she's going to have to alter her life. "

Epilepsy is broad term to describe recurrent, but unprovoked brain seizures like Haley's. They occur as often as several times a month. Haley has an implant to help control them and takes medication. Haley's mom, Cathy, says, "You talk to your friends and your family and they are supportive as they can be, but they don't really understand it until it happens to them: How frightening it can be, how life altering it is."

Doctor Ehrreich is Haley's neurologist at Children's Hospital and he says, "A lot of the patients don't have seizures that are severe, but of the ones we can't control with medication, it becomes extremely difficult for families."

Children's Hospital in Madera is hosting a day long learning experience this Saturday for patients and parents, as well as their extended family members.

Dr. Ehrreich says, "I think it helps if they know what it is and what to do in the case of a seizure." Educators and health care workers can also benefit.

Cathy Smith believes everyone who attends will find new insight into this treatable condition and new avenues of support. She says, "There's someone else out there going through the same thing and there's lots of different ways to connect."

The Day of Hope event this Saturday is free at Children's Hospital in Madera. Anyone affected by epilepsy, educators, healthcare workers and the children, too are welcome to attend.

National walk for Epilepsy

At 9:15 a.m. tomorrow, while many of us are still enjoying our first cup of coffee, the Demetrovits family will be standing on the starting line in Washington, D.C., getting ready for the National Walk for Epilepsy.

The purpose of the walk is to highlight America's commitment to raising awareness about epilepsy, finding a cure and donating to the cause. All proceeds for the event will go to the Epilepsy Foundation.

According to its Web site, www.epilepsyfoundation.org , the National Epilepsy Foundation is a national voluntary health organization, established in 1967, that "works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure."

"Right now, there is no cure but we will find a cure. The purpose [of the walk] is to bring epilepsy to the forefront and to bring in more research money. The main reason of the walk is to fund research to find a cure," said Fairfield resident Leila Demetrovits.

Demetrovits' 6-year-old daughter, Clare, has what she calls "a very rare brain disorder" known as subcortical band heterotopia epilepsy. Clare was diagnosed with epilepsy at the age of
The Demetrovits family created Clare's Team for the walk and all money donated to Clare's Team will go to the Epilepsy Foundation for awareness and research.

Demetrovits said by increasing public awareness about epilepsy it will help "fight the stigma, raise awareness and find a cure."

Although Clare has been suffering with this disorder for most of her life, Demetrovits said she's just like any other child. "We call it getting the shakies, but it's OK; she's been dealing with this since she was 2," Demetrovits said.

The only difference between Clare and one of her classmates is that the "learning process is much harder, she has to work twice as hard [in the classroom]," Demetrovits said. But that's not because Clare is an epileptic, it's because of the prescription medications. Clare, Demetrovits said, takes 12 anti-compulsive pills a day and on average suffers "partial seizures" four times a week. The medication that Clare takes causes severe drowsiness and short-term memory loss, according to Demetrovits and, most importantly, does not stop the seizures.

"No drug has ever stopped the seizures -- they have lessoned the severity of them -- but never stopped them," Demetrovits said, which is why more research needs to be done.

"The more understanding of how the brain works and more understanding of the neurological disorder, then the more hope there is," she said.

In Clare's Team site, which can be found on www.walkforepilepsy.org, the Demetrovits family states, "Participating in an event that raises money for people living with epilepsy touches all of our lives in some way. Our 6-year-old daughter fights this disorder and we believe there will be a cure in her lifetime. We need your support to find a cure."

As of press time yesterday, Clare's Team had received $3,015 in donations. Although the walk is tomorrow, the team will be accepting donations until they reach its goal of $10,000. For more information on the walk or to make a donation, log onto www.walkforepilepsy.org or call (866) 4EF-WALK or (866) 433-9255.

Teenager shares her life story dealing with seizures

BRIDGEWATER -- Alyssa Brandle's last visit to Walt Disney World was when she was 6 years old, a time when seizures -- often brought on by excitement -- were a daily fear for her and her family.
Brandle seized as she gripped the ladder of the hotel pool. She froze, and after a few frightening moments, she climbed with her brother, Scott Brandle Jr., to safety.

This week, the now-14-year-old girl from the Martinsville section of the township will return to Walt Disney World as a Children's Miracle Network poster child, representing New Jersey with a message of hope and the good that comes from the organization's support of hospitals.

Doctors originally thought Brandle's seizures were caused by a cyst on her brain they found when she was 18 months old. When she turned 6, the cyst burst and the seizures grew more frequent -- despite trying four different medications.

"It made me feel different," Brandle said about the seizures. "Every time I made a new friend, I'd have to explain it. I'd have to explain it again and again. It was annoying."

The seizures would happen daily -- taking hold at birthday parties and every Christmas morning, said her mother and father, Teresa and Scott Brandle.

In 2004, doctors determined her only chance of ending the seizures was surgery -- a risky procedure because surgeons would have to operate on an area of the brain controlling language and peripheral vision.

During the 10-hour surgery at The Bristol-Myers Squibb Children's Hospital at Robert Wood Johnson University Hospital in New Brunswick, a surgeon removed dead brain tissue and found a golf ball-sized tumor that had been hidden underneath.

The tumor was removed, and Brandle has been free of seizures ever since. The Bridgewater-Raritan Middle School student is now a swimmer for the Shimon and Sara Birnbaum Jewish Community Center's team and sprinter on her school's track team.

"Don't give up hope. I didn't let life get me down," Brandle said about her message, serving as a Children's Miracle Network ambassador for the next year.

Alyssa leaves today for Washington, D.C., for a meeting with 49 other Children's Miracle Network state representatives and first lady Laura Bush -- and possibly President Bush -- at the White House. Then, she and her family will spend a few days at Walt Disney World in Orlando, Fla., with the other Children's Miracle Network ambassadors.

Brandle will appear at events throughout the state on behalf of the Children's Miracle Network. Each year, the organization gives more than $1 million to hospitals in the state.

Last year's representative was Lauren Choi, a Flemington girl who suffered a spinal cord injury in 2004. Doctors had told her that she wouldn't be able to walk again, but after six months at Children's Specialized Hospital in Mountainside and now weekly therapy sessions, Lauren is walking again.

Kara L. Richardson can be reached at (908) 707-3186 or krichard@c-n.com.

Playstation makers get sued over seizures

When it was released in 2002, Spyro: Enter the Dragonfly was panned by critics who accused it of offering a choppy frame rate, buggy gameplay, lengthy load times, and a dull story. Last month, the game received a more serious knock against it, as a New York woman whose infant suffered a grand mal seizure while playing Enter the Dragonfly filed suit against Vivendi Games, Sierra Entertainment, Sony Computer Entertainment America, and a defunct rental store called Hiawatha Video.

The suit, filed in New York State Supreme Court, claims that the defendants were "negligent, careless, and reckless with regard to the design and manufacture" of Spyro, such that the game was dangerous when used in the intended manner, and that they failed to properly warn consumers of that danger. According to the suit, the child suffered severe and permanent disabling injuries that will affect him "in all activities of daily living" and necessitate lifelong medical expenses.

The PS2 edition of Spyro: Enter the Dragonfly came with a notice on the inside front cover of the instruction manual advising consumers that "a very small percentage of individuals may experience epileptic seizures when exposed to certain light patterns or flashing lights." The notice also tells users to stop playing immediately if they experience specific symptoms of epilepsy, and to consult a physician before resuming play.

On behalf of her child, the woman is seeking damages "for such fair and reasonable amount as may be awarded by a jury of his peers," along with whatever other relief the court may deem just and proper. Earlier this week, Sony requested that the woman specify the total amount of damages she's seeking.

As of press time, neither Vivendi nor Sony representatives had returned GameSpot's request for comment.

This is not the first time a gamemaker has faced a lawsuit over epileptic seizures. In August of 2003, Nintendo won a case in Louisiana against a woman whose son died as the result of a seizure he suffered while playing the Nintendo 64. The judge in that case ruled in Nintendo's favor after the woman failed to respond to the publisher's motion for summary judgment.

Woman's life with seizures changes, thanks to service dog

A YOUNG woman who was suffering from up to 80 epileptic fits a day has had her life transformed by a four-legged friend. Hannah Baker was just six when she was diagnosed with a non malignant brain tumor and her seizures gradually grew worse. The epilepsy was so incapacitating she was virtually housebound and required a carer 24 hours a day. Simple tasks like showering meant constantly singing to reassure her family that she was alright and as a child she had to sleep in a double bed to avoid falling out and injuring herself.

Hannah walking her seizure-alert dog Milo But accidents, such as breaking her jaw, became common place and an operation to remove the tumor only made matters worse.By her teens, Hannah, from Dedham, became more depressed as her school friends moved away to enjoy student life. Feeling that she had a bleak future, she began self harming.But by chance, her mum, Nicola, heard a feature about a charity called Support Dogs on the radio and Hannah was matched with Milo, a white poodle.

After eight months of training, Milo graduated as a “seizure alert dog”.Amazingly Milo is able to signal when a seizure is imminent by staring at Hannah intently, refusing to be distracted, even by food. Hannah then knows to attempt to stroke him and if he pulls away, she knows she is about to have a seizure.The eight to 10-minute warning allows her to move away dangerous items such as hot drinks and sit down to prevent injury in the event of a larger seizure.

She has now achieved many of the simple aims she set herself before starting the training programme, such as visiting the library, and has even traveled independently as far as Liverpool to visit family and friends.The 20-year-old said Milo had made a massive difference to her life and had helped to reduce the number of seizures. “Milo means the world to me,” she said.Combined with her medical treatment, Milo has helped reduce the number of daily seizures Hannah has to as few as 10.

Pesticides is still allowed by FDA although it can cause health hazards such as seizures

After being under review for nearly 30 years, the pesticide lindane was finally withdrawn by the Environmental Protection Agency for use in agriculture last summer. Called by the EPA "one of the most toxic, persistent, bioaccumulative pesticides ever registered," lindane is still stubbornly being supported by the Food and Drug Administration for use in shampoos and lotions used on children.

While environmental health groups around the country applauded the EPA for the first step in abolishing lindane, these same groups are now calling for a phaseout of the remaining uses of lindane in pharmaceutical products in the U.S. that do more harm than good.Lindane - also known as gamma hexachlorocyclohexane (HCH) and benzane hexachloride (BHC) - is found most commonly in products that treat head and crab (pubic) lice, such as shampoo that kills the lice and their eggs. It is prescribed for use only "after safer medications have failed or have caused side effects," but is still used with alarming frequency.

According to the Pesticide Action Network North America (PANNA), "it is a known neurotoxin that can cause seizures, damage the nervous system, and weaken the immune system. Exposure might also cause cancer and disrupt hormone systems. Since lindane is highly persistent and travels globally through the air and water, its use poses an exposure risk to people far from the source."This chemical has been banned for use on pets and seeds, but still we continue to allow its use on our children's heads? The FDA must learn to keep our children healthy and safe by not favoring the interests of corporations who continue to profit from sales of products containing this toxic chemical.

Actually, the entire warning that accompanies this product is detailed and shocking, and deserves to be printed in full: "Only use Lindane Shampoo if you have already tried other safer treatments and experienced severe side effects or the treatments did not work. Seizures and death have occurred following repeated or prolonged use of Lindane Shampoo, and rarely after a single use according to the directions. Do not use Lindane Shampoo if you have a history of seizures or certain skin conditions where the skin is irritated or broken (eg, atopic dermatitis, psoriasis) or to treat premature infants.

"Use Lindane Shampoo with extreme caution to treat infants or children, if you are elderly, or if you weigh less than 110 lbs (50kg) because you may be at greater risk of serious nervous system side effects. Follow the directions for using Lindane Shampoo very carefully. You may experience symptoms such as continued itching after using Lindane Shampoo, even if it has worked well. If itching continues, contact your doctor. Do not use more of Lindane Shampoo or use Lindane Shampoo more often than prescribed by your doctor."

Children put at extreme risk by LindaneAn estimated 6-12 million people in the U.S. get lice each year, and a good majority of those are children. Lindane has been used as a topical scabicide and pediculicide for years, and in most cases, acute lindane toxicity is most lethal to the elderly and children typically manifested as grand mal seizures. Lindane is also a significant contaminate in urban sewer systems and can pollute drinking water.

Smaller children also have a larger risk of systematic exposure, but it is still not known whether the developing nervous system of children increases their susceptibility to such toxicity. However, case controlled research does show a significant association between brain tumors in children and the use of lice shampoos containing lindane.Lindane and its breakdown products persist in the environment, posing a risk to people and wildlife that may be exposed long after the pesticide is applied.

All uses of this noxious compound "have already been banned in at least 52 countries, including most recently, Mexico," and its use is restricted or banned in most of Europe. Pharmaceutical uses of lindane for lice and scabies have been banned in California since 2002, and are currently being questioned in legislation for a similar ban in states like Michigan and New York, according to PANNA.

The health dangers of lindaneNot only is lindane highly ineffective, it's also dangerous. According to Wikipedia:

• Lindane is a proven carcinogenic and is cited by the EPA as acutely toxic.

• It is a suspected endocrine disruptor, meaning it disrupts hormones that regulate growth and reproductive health.

• Like other agricultural pesticides, lindane is very easily introduced into the water and food supply of an area through rainfall, and can lead to low-level lindane poisoning throughout the local community

• Lindane is volatile, with roughly 90% entering the atmosphere and ultimately being deposited into rain.

• Lindane should not be kept on the head longer than 4 minutes and should not be covered during this time under any circumstances. Rinse only with warm water - hot water is not safe and is not recommended.

Lindane shampoo acts and can permeate your skin, entering your blood supply and affecting your brain and nervous system. It can cause seizures and death in people who use the product too much or too often, and it also can cause seizures even when used as directed.Be careful - Lindane Shampoo is also sold under the one-percent formula as Kwell shampoo and lotions (among other brand names) used to treat human scabies infection, head lice and other ectoparasites.

The topical preparation has a half-life of approximately 18 hours.Research scientists "strongly recommend its removal from the market" because of its low efficacy and high toxicity. It may also interact with certain medications. According to a 2003 study from the U.S. Centers for Disease Control and Prevention, 62% of U.S. residents sampled carry the insecticide Lindane in their body.

Effective alternatives to fight lice and scabies exist and are readily available, including Vaseline, mayonnaise, or the application of regular shampoos and oils. Even careful combing with a fine-tooth comb specially designed for lice control is a viable option.If overdose is suspected, call your local poison control center or emergency room immediately. Symptoms of an overdose could include bloody urine, irregular heartbeat, nausea, restlessness, seizures, unsteadiness, or vomiting.

A public domain U.S. government document at FDA.gov provides further information related to lindane, and is available at: (http://www.fda.gov/cder/drug/infopage/lindane/lindanePHA.htm).

Inmate suffers from meningitis and seizures then dies while in detention center

An inmate dies after becoming sick at the Clark County Detention Center. The family of 26 year old Tyrone Kemp held a candlelight vigil Sunday night; they say he died because of poor conditions at the jail. A doctor told Kemp's mother that her son had meningitis.

Just last week, the detention center announced it was dealing with a norovirus outbreak that made 150 inmates and several corrections officers sick. But doctors say meningitis really has nothing to do with norovirus, which is more of a stomach flu.

"He had to get sick in the jail. They said he had seizures and he never had seizures here, and if he did have a seizure they should have been watching him, he shouldn't have been in that cell by himself," said Denise Kemp, Tyrone's mother.

Kemp was in jail on a bench warrant for grand larceny. An autopsy by the coroner will determine his exact cause of death.

Beware of herbal pills as they may cause seizures

The European Monitoring Centre for Drugs and Drug Addiction (EMCDDA) is to look at the health and social risks of benzylpiperazine, or BZP.

It could lead to the stimulant being banned under controlled substances laws.

BZP - also known as Pep Love, Cosmic Kelly and The Good Stuff - was declared dangerous and illegal by the UK's medicines regulator last week.

It can mimic drugs such as amphetamine and ecstasy when combined with other substances, and usually comes in pill form, often imprinted with a housefly, heart or butterfly.

Although some dealers claim it comes from natural extracts, it is synthetic and can cause vomiting, abdominal pain, seizures and abnormal heart rhythms.

BZP contains piperazine which is used as an anti-worming agent and is found in human and veterinary products.

The EMCDDA said health risks associated with BZP may include hypertension, rapid beating of the heart, seizures, anxiety and insomnia - with some symptoms sometimes lasting up to 24 hours.
EMCDDA director Wolfgang Gotz said: "Keeping our ear to the ground and picking up on new substances and trends is a central part of our work at the EMCDDA to ensure that problems are detected before they become major health threats.

Today we see that our detection mechanisms are working well and we are satisfied that we can now go a step further in our analysis of BZP."

BZP-containing products have been marketed as "natural" or "herbal" highs under various brand names including Pep pills, Flying Angel, Red Eye Frog and Triple X. Last year, the largest BZP seizure of 64,900 tablets took place in the UK, the EMCDDA said, suggesting the involvement of organised crime in its trafficking and wholesale distribution.

These news feeds are provided by an independent third party and Channel 4 is not responsible or liable to you for the same.

Toddler's life with seizures

For Anna Conte, the terrifying seizures began at 2 months.

Without warning, the baby girl would turn blue, the oxygen to her brain cut off by uncontrollable convulsions.

The seizures often continue for more than an hour and can be stopped only with a special drug injected at the hospital.

Wendy Conte has counted 51 emergency hospital visits — including one Friday night — for her feisty little daughter, who is now 22 months old.

Anna is believed to be the youngest child ever diagnosed with Dravet’s syndrome, an extremely rare epileptic condition.

“They’re not typical seizures,” Wendy Conte of Orchard Park said. “Immediately, she stops breathing. She turns blue and arrests within seconds. There’s no indication of when she’s going to have one, either.”

The condition led doctors to cut a permanent hole in Anna’s trachea, so air can be delivered to her lungs as quickly as possible during an attack. She also had a feeding tube installed in her stomach to help her gain weight and more easily take medicines.

And her care has become a community concern in Orchard Park, where many of the volunteer firefighters have come to know Anna and her family by responding to frequent emergency calls at their home.

“She’s like part of the family to every one of us,” said Anthony Balaster, a firefighter and assistant emergency medical services coordinator for the Orchard Park Fire District.

Balaster, who estimates he has responded to nine emergency calls for Anna, says witnessing her gasping for breath hasn’t become any easier.

“No matter how many times you go there, it’s enough to scare you,” he said. “It hits you at home.”
This weekend, more than a dozen Orchard Park emergency responders participated in a training course conducted by Rural/Metro Medical Services to learn more about Dravet’s syndrome and other pediatric conditions they may encounter on emergency calls.

Wendy Conte was scheduled to address the medical technicians Saturday, with Anna in tow, but the little girl’s most recent hospital stay made that impossible.

Instead, the Contes showed up Sunday, mostly so parents Wendy and John could thank the emergency responders better explain Anna’s condition and introduce their playful, blond daughter under normal, non-emergency circumstances.

Anna was diagnosed with Dravet’s syndrome — named after Dr. Charlotte Dravet, a French neurologist — as a 10- month-old.

At one point, the seizures occurred at a clip of three to five times a week, but they have subsided considerably since the tracheotomy in October and the use of a new medicine, stiripentol.

Aside from her frightening seizures, Anna is a normal, nearly 2-year-old, said Wendy Conte.

She taunts the family golden retriever, teases her older brother, Johnny, 8, and sister, Gina, 5, and appears to be just a few weeks away from walking, Conte said.

Still, Anna requires aroundthe- clock supervision and may face a lifetime of health problems.
“You literally cannot take your eyes off of her,” said Wendy Conte, who receives overnight assistance from home health aides four times a week and stays awake the other three nights to watch over Anna.

Fewer than 500 cases of Dravet’s syndrome have been diagnosed worldwide, with fewer than 50 in the United States, she said.

Because of frequent instances of oxygen deprivation, many Dravet’s sufferers have developmental problems, especially with their speech.

The Contes have learned how to use a ventilating bag to deliver as much air as possible while Anna is rushed to Women and Children’s Hospital for a shot of propofol, an anesthetic that breaks the seizure.

Anna’s siblings look out for her, too.

Johnny has learned to grab the phone and dial 911 for his mother during an emergency.

“We have such a system now,” Wendy Conte said. “In the first year, we didn’t know what we were doing. It changes your family, your life, forever.”

Keppra can control seizures in some cases

The U.S. Food and Drug Administration (FDA) yesterday approved UCB's leading anti-epileptic drug Keppra(R) (levetiracetam) tablets and oral solution as adjunctive therapy in the treatment of primary generalized tonic-clonic (PGTC) seizures in patients 6 years of age and older."Almost one in four people with epilepsy have tonic-clonic seizures, which are one of the most recognizable seizure types beginning with a sudden loss of consciousness and stiffening of the muscles, followed by rapid rhythmic jerking of the arms and legs," said Robert C. Knowlton, MD, Associate Professor of Neurology, University of Alabama at Birmingham.

"Seizure freedom with minimal side effects is the ultimate goal for physicians and patients. The results of the trial supporting this new indication demonstrate the growing evidence for Keppra(R) as an effective adjunctive therapy across partial and generalized seizure types."In a well-controlled clinical trial of Keppra(R) as add-on treatment in 164 patients (ages 4-65) with refractory idiopathic generalized epilepsy (IGE), nearly a quarter (24.1%) achieved complete seizure freedom from all seizure types over the 20-week evaluation period, compared with only 8.3 percent of those who received a placebo in addition to their usual treatment (p=0.009).

Nearly three quarters (72.2%) of those who took Keppra(R) achieved a 50 percent reduction in weekly PGTC seizures, compared with less than half (45.2%) of those in the placebo group (p<0.001).>

We are pleased that there is now an opportunity for patients with one of the most debilitating seizure types -- primary generalized tonic-clonic seizures - - to benefit from Keppra(R)," said Troy Cox, President CNS Operations, UCB. "This latest indication for Keppra(R) supports its broad spectrum of efficacy across partial and generalized seizures types."Keppra(R) was approved by the FDA in 1999 as adjunctive therapy in the treatment of partial onset seizures in adults with epilepsy. Since 1999, Keppra(R) has received several supplemental indications as adjunctive therapy for epilepsy, making it one of the few treatments approved to treat seizure types that together account for more than 80 percent of all seizures.

These FDA indications include:-- Partial onset seizures in patients 4 years of age and older with epilepsy-- Myoclonic seizures in patients 12 years of age and older with Juvenile Myoclonic Epilepsy (JME)-- Keppra(R) intravenous formulation for partial seizures as an alternative for adult patients when oral administration is temporarily not feasible-- Primary Generalized Tonic-Clonic (PGTC) seizures in patients 6 years of age and older with idiopathic generalized epilepsyThis U.S. approval closely follows the European Commission approval for Keppra(R) in this debilitating generalized seizure type earlier this year.

About Keppra(R) in the U.S.Keppra(R) is indicated as adjunctive therapy in the treatment of partial onset seizures in adults and children 4 years of age and older with epilepsy, myoclonic seizures in adults and adolescents 12 years of age and older with juvenile myoclonic epilepsy, and primary generalized tonic-clonic seizures in adults and children 6 years of age and older with idiopathic generalized epilepsy.Keppra(R) injection is indicated as adjunctive therapy in the treatment of partial onset seizures in adults with epilepsy.

Keppra(R) injection is an alternative for patients when oral administration is temporarily not feasible.Keppra(R) tablets and oral solution are associated with the occurrence of central nervous system adverse events including somnolence and fatigue, behavioral abnormalities, and coordination difficulties, as well as hematological abnormalities. In pediatric patients 4-16 years of age experiencing partial onset seizures, the most common adverse events associated with Keppra(R) in combination with other AEDs were somnolence, accidental injury, hostility, nervousness and asthenia.

In adults experiencing partial onset seizures, the most common adverse events associated with Keppra(R) in combination with other AEDs were somnolence, asthenia, infection and dizziness. In patients 12 years of age and older with juvenile myoclonic epilepsy, the most common adverse events associated with Keppra(R) in combination with other AEDs were somnolence, neck pain, and pharyngitis. In patients 6 years of age and older with idiopathic generalized epilepsy, the most common adverse event associated with Keppra(R) in combination with other AEDs was nasopharyngitis.

The adverse events that result from Keppra(R) injection use for partial onset seizures include all of those associated with Keppra(R) tablets and oral solution.About UCBUCB (http://www.ucb-group.com) is a leading global biopharmaceutical company dedicated to the research, development and commercialization of innovative pharmaceutical and biotechnology products in the fields of central nervous system disorders, allergy/respiratory diseases, immune and inflammatory disorders and oncology.

UCB focuses on securing a leading position in severe disease categories. Employing over 8,300 people in over 40 countries, UCB achieved revenue of 2.3 billion euro in 2005. UCB is listed on the Euronext Brussels Exchange. Worldwide headquarters are located in Brussels, Belgium.UCB, Inc.http://www.ucb-group.com

Surgery can be the only answer for seizure disorder!

THE FINISH LINE is in sight.

With only a few metres to go in the cross-country run, Claire is tired, very tired.

Claire, trailing a field of 79 runners, is panting as she inches closer and closer to the line.

Parents, teachers and her fellow students are cheering and encouraging her as the then seven-year-old from Hebbville Academy hops and skips her way to the race’s end. She’s not hopping and skipping with joy, although her heart is bursting with pride at what she’s accomplishing. She’s hopping and skipping because, with lack of use of her left leg and arm, and with a brace on the left leg, that’s the only way she can run.

Claire’s last name is withheld because, as her father Greg says, "the story is key, not the name, since many names should come before us."

Now 11 and in Grade 5, with golden hair, a charming smile and conversational ease, Claire was diagnosed at age 5 with a very rare form of epilepsy called Rasmussen’s encephalitis. It usually strikes children under 10 and its effects are devastating. The only known cure is a hemispherectomy, the severing of one side of the brain from the other.

As a result of the surgery, Claire lost the use of her left arm and hand, wears a leg brace and has about half the vision in both eyes.

But, as you will read, Claire refuses to see herself as disabled and is game to try anything and everything.

Before her diagnosis, Claire was like any five-year-old — active, busy with gymnastics, skiing, skating, dancing and swimming.

"Kids with Rasmussen’s have an epilepsy that starts with a seizure or two, then spreads like wildfire to multiple seizures minutes apart, almost non-stop," says Greg, who works in health care. "Just before her surgery, Claire was having as many as 300 seizures a day."

Claire’s mother Kathy, an elementary school teacher, says she and Greg weren’t worried about the surgery to separate the brain and cancel the seizures as much as what the operation would leave her without.

"There were no options," she says.

Now, says Greg, they don’t talk about it at all. "It’s full steam ahead, whatever makes her happy."
"Does that mean I can have a horse?" Claire asks with a twinkle in her eye.

Kathy laughs. "No," she says, and recalls the many times in the last six years Claire has asked if she could do something other kids were doing, like ride a bike or a scooter.

Each time, Kathy has had to be cautious because, with Claire’s vision and mobility problems, she could trip over or bang into something or someone she doesn’t see quickly enough.

However, the leash has been released somewhat and Claire’s grit and determination are shining through as she swims competitively, skis downhill with the aid of an outrigger, skates, and impresses everyone who meets her.

She started swimming five years ago under Bridgewater Barracudas’ winter coach Karen Selig, a sports animator with the South Shore regional school board.

"It’s amazing what she does with one arm and one leg," says Karen. "She’s lighthearted, loves to smile and giggle, and perseveres. Last summer, she won two gold medals at the provincial outdoor meet against swimmers with disabilities. With her dedication, I can see her going much further in swimming."

Claire swims an hour a week in winter and every day in summer, doing all four strokes.
"I’m very competitive. I like to have fun, and win, too," she smiles.

Kathy says it’s hard for her to win with one arm and leg against able-bodied swimmers, but Greg looks at Claire and says: "If the others switched to one arm, they’d be way behind you."

After the surgery, Claire had to learn to walk again and Kathy worried about her safety. While not overly protective, they were cautious, but not Claire.

Greg recalls visiting a friend’s house with Claire, then about seven. The other man followed closely behind Claire to be sure she didn’t fall.

"Claire asked him what he was doing," Greg says. "When he said he was afraid she’d fall, Claire told him, ‘If I fall, I’ll just get back up again.’ "

Sherry Brine, a teacher at Hebbville Academy, was in charge of the cross-country race when Claire decided she should run.

"She wanted to do everything and we wouldn’t hold her back," says Sherry. "We walked the course to be sure she knew where any obstacles were."

Proudly, Sherry adds, "She’s so special. Anyone would be inspired by her."

Teacher, author and Claire’s neighbour, Nancy Wilcox Richards, was so inspired she wrote a children’s book, Claire’s Race, from which all proceeds will go to the Epilepsy Association of Nova Scotia.

"She is a very determined and courageous little girl," says Nancy. "I just wanted more people to know her story."

As Claire nears the finish line, with a hop and a skip she crosses it, her right arm pumping into the air with triumph.

"Look, Mom! I came in 79th. I ran the whole race!"

Read Great Kids in The Sunday Herald and Bright Spot in The Chronicle Herald Mondays, Wednesdays and Fridays. Contact Joel Jacobson via e-mail at jjacobson@herald.ca or fax at 426-1158, or phone 902-426-0128.

Medication can help to control seizures...for a while...

SPENDING your eighth birthday in hospital is no way to have fun, unless it's bringing you one step closer to brain surgery that you desperately need.

Jessica Banik, 8, was diagnosed with epilepsy four years ago.

Since then medication called Keppra has stopped her seizures and Jessica has led the life of a normal little girl.

But doctors at the Royal Children's Hospital warned mum Vanessa and dad Anthony that Jessica would outgrow the medication and her seizures would return.

"We had a three-year holiday where Keppra worked and then Jess was just about to start grade 2 and it came back," Anthony said.

This time, Jessica's seizures were more severe, and she started to have up to 100 a day, increasing at times when she felt tired or anxious.

During a seizure Jessica's pupils dilate, the left side of her face twitches, her muscles tense up and her breathing becomes erratic.

She also becomes very frightened and cries for her mum and dad. "She told me once, 'I'm over it, Mum'," Vanessa said.

Pediatric neurologist Associate Prof Andrew Kornberg said that the seizures occurred as a result of Jessica's brain cells not migrating to the right places during her development.

He said the part of her brain causing the seizures could be removed, but the operation to do so would be an extremely delicate one.

"The abnormal area is just centimetres away from the area responsible for language," Prof Kornberg said.

"We've done these sorts of complex operations many a time, but first we have to map out where all the areas are."

Jessica was brought into the hospital on her eighth birthday to have a nuclear medicine scan.
Dye was injected into her bloodstream, to guide doctors to the exact part of her brain that needs to be removed. The final step is surgery, scheduled for April 4.

Anthony and Vanessa said they were hoping the surgery would free their daughter of epilepsy once and for all.

"We just hope we can look back on this one day and say, 'Wow, we got through it'," Anthony said.
The Royal Children's Hospital's Good Friday Appeal raises money to help treat thousands of sick children.

Rare disorder grows tumors that cause seizures

Some days Lisa Brown wants to cry.

Some days she wonders why her daughter has to suffer.

But most days, the Jackson mother feels blessed.

The Southeast Missouri State women's basketball team cheered Monday night after learning they will play the Oklahoma Sooners Saturday in Austin, Texas, in the NCAA Tournament.Lisa and Charlie Brown's 8-year-old daughter, Natalie, has a rare genetic disease called tuberous sclerosis. The disease causes benign tumors, or tubers, to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs and skin. TS also causes Natalie to have violent epileptic seizures.

Natalie, who was born Nov. 20, 1998, is the couple's second child. They were high school sweethearts whose first child, Garrett, now 13, was born four years after they got married.
When Natalie was born, she developed normally and was a healthy baby girl. But in October 1999, when Natalie was 10 months old, her parents woke up in the middle of the night to the sound of their daughter's abnormal breathing.

Lisa, whose younger sister had seizures as a child, quickly realized her infant daughter was having one. The couple rushed Natalie to the emergency room.

Doctors performed various tests on Natalie that revealed she could have one of two conditions: bleeding on the brain or tuberous sclerosis.

"We knew neither was a good option, but at the time I was more worried about the bleeding on her brain," Lisa said.

But doctors told the Browns that tuberous sclerosis would be a worse prognosis because it would affect Natalie for the rest of her life. Additional testing revealed Natalie had the rare genetic disorder.

"At that time, I felt like my wall started crumbling around me," Lisa said. "Here we had our little boy and our little girl, and as a parent, you didn't want anything bad to happen to either of them."

The Browns quickly learned everything they could about tuberous sclerosis. The disorder affects about 40,000 people in the United States, and an estimated one in 6,000 babies are born with TS each year. Some individuals can inherit the disorder from a parent with tuberous sclerosis, but most cases occur due to a faulty gene mutation.

The prognosis for people with tuberous sclerosis depends on the severity of symptoms. Some individuals with mild symptoms can live long, productive lives, but some may have more serious disabilities.

In Natalie's case, doctors found numerous tubers on her brain, kidneys and a spot behind her right retina. The tubers on Natalie's brain cause her to have seizures, which range from small tremors to status epilepticus, or seizures that last more than five minutes. Without emergency attention, the status seizure can cause permanent brain damage or be fatal.

Emergency room

From the time of Natalie's diagnosis until she was 3 years old, she had numerous status seizures.
"We went through periods where we were at the hospital four or five times a month," Charlie said. "We basically had a relationship with the emergency room doctors because we were up there so much."

Natalie was prescribed various seizure medications, which caused her to have mood swings and extreme vertigo.

"That was a very bad time for our little girl," Charlie said. "She would curl up in a little ball and sit in the corner and cry. It was tough to watch."

On one occasion to the emergency room, when Natalie was 3 years old, she had a status seizure that lasted about four hours.

"We couldn't get her to stop," Charlie said. "The doctors were exasperated. We were running out of options."

A St. Louis Children's Hospital doctor told the Browns he was concerned with the number of seizures Natalie was having and recommended they consider epileptic brain surgery.

"Every time Natalie had one of these seizures, she could die," Charlie said. "So we agreed to look into the epileptic surgery."

Surgery'

Tests determined that Natalie was a candidate for the surgery, which would consist of removing a portion of Natalie's brain where the seizures originated.

"Most kids with tuberous sclerosis don't have the option to do this surgery because their seizures come from too many different places," Charlie said.

Doctors told the Browns the surgery could help reduce or eliminate Natalie's seizures, but she might become paralyzed on the left side of her body and lose vision in her left eye.

"We were faced with the fact that we were going to take away the one thing our girl has, which is physicality and the ability to run, jump, play outside, or you're going to keep her from dying," Charlie said.

Natalie underwent the brain surgery Jan. 28, 2003.

"That was the hardest thing to ever see your child go through," Lisa said.

Doctors told the Browns that Natalie would be confined to her bed for about 15 days after the surgery. But Natalie was running down the hospital's halls two days after the procedure.

"It was a miracle, and as far as we can tell she's never had one sign of paralysis on her left side or any blindness," Charlie said.

Four years later, Natalie is still not seizure-free, but the surgery reduced the number of status seizures she has. Instead of four status seizures a month, Natalie has gone for periods of up to 10 months without a seizure.

'Truly is a blessing'

"Looking back on where she's come from, would I have done the surgery again? Absolutely," Charlie said.

Lisa agrees.

"You have to do something at some point," she said. "We thank God for what he's given us and the blessing that Natalie is, and she truly is a blessing."

Two years ago, Lisa became pregnant again.

"With what we had gone through with Natalie, we weren't planning to have any more children because we were worried the tuberous sclerosis started from us," Lisa said. "So when I got pregnant again, we were really worried."

On Jan. 7, 2005, Gabriel Brown was born. So far Gabriel has no signs of tuberous sclerosis.
Unknowns about Natalie's condition remain. Even though Natalie is homeschooled by teachers from the Jackson School District, her learning has plateaued. She has the mental capacity of a 2-year-old. Doctors continue to monitor her and check for the growth of additional tubers. So far, the tubers on her kidneys haven't caused any problems, but they could as she goes through hormonal changes.

Like most 8-year-olds, Natalie enjoys playing outdoors and loves to swim. Her parents have to monitor her time outside during the summer months because a side-effect of her medication doesn't allow her to sweat.

The Browns say they don't focus too much on Natalie's future but love watching their 8-year-old daughter dance to country music.

"You can't focus on the fact that she might never get married or fall in love," Lisa said. "We don't let that control our lives."

No one knows what Natalie's mental capacity will be, but the Browns say they'll do whatever they can for their daughter.

"We're going to teach her and play with her, and if she grows, she grows," Charlie said. "But if she doesn't, I'm going to love her anyway."

Prisoner denied medicine to treat seizure disorder

When he was booked on burglary charges into the downtown King County jail on June 4, 2002, Troy Deimerly told jail health nurses that he suffered from a seizure disorder and needed the drug Klonopin. The workers noted the information.

He never got the drug, according to Jail Health Services records.

He asked for it on June 9, June 10, June 13 and June 14.

No Klonopin.

On June 18, Deimerly met with another nurse for a health screening, again telling of his history of seizures. The nurse refused to take his word and couldn't independently verify his claim, according to her health assessment.

Deimerly tried again, sending a written request for the drug to the jail clinic on July 19. He got no response.

Then, he was assigned a top bunk. Deimerly told his jailers he could have a seizure and fall.
On July 21, Deimerly suffered a seizure and fell from his bunk. He was treated at Harborview Medical Center for "moderate head and neck injuries," according to court documents.

A month later, Deimerly was sent to Western State Hospital. While there, he was examined and given Klonopin.

Deimerly was returned to the jail on Sept. 9, where he was again denied the drug. On Sept. 11, he had another seizure and again fell from his bunk. This time, he wound up in a cervical collar.

Deimerly sued.

"It seems to me that he has a fairly strong claim that the county employees were recklessly indifferent to his medical needs," wrote attorney Jim Lobsenz, appointed by the court to represent Deimerly's interests.

The county settled the case for about $20,000.
Jail Health Services will not comment on specific cases.

Can helicopter rides cause seizures?

A University of Rochester case report suggests light streaming through whirling helicopter rotor blades during emergency transport can cause seizures in some.

The findings, published in the journal Prehospital Emergency Care, suggest that the phenomenon is an under-recognized but highly preventable complication of helicopter transport.

This shouldn't preclude transporting a patient from point A to point B in an aircraft, lead author Dr. Jeremy Cushman, an attending physician at the university ' s medical center, said in a statement. But this concern does need to register as a legitimate risk for a small number of patients.In a one example, paramedics noted flickering bursts of sunlight cast across the patient's face; the patient's eyes soon began blinking, and his facial muscles began jerking in coordinated rhythm.

The patient, stable and displaying strong vital signs, immediately fell into a seizure, despite paramedics' attempts to block the flashes from the patient's face.

What does brushing your teeth has to do with seizures?

The breakthrough will help neurologists understand how the most common triggers -- sleep and stress -- can spark fits.

"The tooth-brushing trigger is very, very unusual, but now we understand what's behind it the implications are great," said Dr Wendy D'Souza, leader of research published yesterday in US journal Neurology.

The team from St Vincent's Hospital, Melbourne, investigated three middle-aged people who had jerking or twitching-type seizures when brushing certain areas of their mouth.

Using head scans, researchers discovered all three patients had a lesion in the somato-sensory part of the brain, which is close to the hand and speech motor areas.

"The rhythmic act of brushing teeth may excite an already overly excitable area of the brain," Dr D'Souza said.

"It sends an electrical signal to a part of the brain which has this lesion and causes these jerking sorts of seizures."

He said this type was extremely rare, with less than a dozen reports worldwide, but had many similarities to the more common photosensitive type, triggered by strobe lights and moving patterns.

Specialists were able to medicate these epileptics with a specific dose, which overrides the tooth-brushing trigger, and were now investigating the significance for other triggers.

About 2 per cent of Australians have the condition -- one half inherited and the other sparked by a mark or lesion somewhere in the brain.

Sunny days and seizures

A case report published in the current issue of the journal Prehospital Emergency Care suggests that light streaming through whirling helicopter rotor blades during medical air transport can cause symptoms ranging from nausea to full-blown seizures in a very small number of patients. The report, published in the January/March volume, cites several studies, case reports and historical examples related to photosensitive epilepsy, suggesting that the phenomenon is an under-recognized but highly preventable complication of helicopter transport.

"This shouldn't preclude transporting a patient from point A to point B in an aircraft," said Jeremy Cushman, M.D.,, an Emergency Medicine attending physician at the University of Rochester Medical Center and the report's lead author. "But this concern does need to register as a legitimate risk for a small number of patients. Personnel ought to know how to guard against it."

The case report details an account of a patient who suffered a severe foot injury and required an airlift from a remote geographic location to a hospital in Baltimore, where Cushman worked at the time. Flight paramedics noted flickering bursts of sunlight cast across the patient's face, to which the patient's eyes soon began blinking, and then his facial muscles began jerking in coordinated rhythm. The patient, stable and displaying strong vital signs, immediately fell into a seizure, despite paramedics' attempts to block the flashes from the patient's face.

During the hospital examination, the patient reported no previous head injury or family history of seizures; he also had a normal EEG and CT scan, and, at a three-month follow-up visit, reported no recurrence of the seizure.

"He was not diagnosed with a seizure disorder," Cushman said. "But we never exposed him to flickering light again, either, giving us all the more reason to suspect that as the cause."
Giuseppe Erba, M.D., professor of Neurology and Pediatrics at the University of Rochester Medical Center, is a world expert on photosensitivity, including epileptic seizures caused by flashing lights of video games and television. Erba says that he also encounters patients affected by a similar flickering effect caused by sunlight filtering through a row of trees as the patients are riding in cars.

"Photosensitive patients may twitch, then jerk, and finally, if nothing is done to stop it, have a seizure," Erba said. "It's a tricky business, this photosensitivity, because it can exist without a patient having spontaneous seizures, as the paper states. This makes prevention even more difficult, especially since routine EEG tests are not always carried out properly in the lab and too often, false negative results occur."

Cushman and co-author Douglas Floccare, M.D., M.P.H., of the Maryland State Police Aviation Command researched how often this sort of light-induced epilepsy occurs in patients, even pilots, with no history of seizures -- especially in aircraft on sunny days. The team found several photosensitive epilepsy studies and various reports from over the course of decades, even centuries, both on ground and in flight. Together, these pieces create a picture that suggests the condition may be more common and difficult to diagnose than originally thought.

For instance, Cushman highlights second century writings from the Roman novelist and orator Apuleius, who noted that the spinning of a potter's wheel could send onlookers into seizures. Cushman also describes an array of other non-whirling stimuli that have been documented over time to induce seizures, including music, hot water, working with fractions, and even tooth brushing.
The most common photosensitive stimulus is television, Cushman said, and resulting seizures are often dubbed instances of "video game" or "space invader" epilepsy, a condition that Erba studies and has made recommendations to help prevent.

"Almost 10 years ago in Japan, more than 700 children were hospitalized after watching a cartoon explosion on a show called Pokemon," Cushman said. "And with numbers like that, there's more at play than the mere two in 10,000 patients that statistics show are vulnerable to light-induced epilepsy. We've begun to wonder if even people not diagnosed with epilepsy can also be affected, to some degree, by a flickering stimulus like the light in our report."

Cushman noted that other studies further underscore the more widespread photosensitivity evidenced by the Pokemon cartoon incident; one showed that even 28 percent of normal, non-epileptic control subjects exposed to light flashes can suffer symptoms such as nausea, headaches, fear and vomiting, if the flickering light is set to the right frequency.

In that same study, as many as 5 percent of "normal" subjects experienced a loss of consciousness or seized.

Convinced that photosensitivity triggered by spinning rotors, though rare, is an under-recognized and preventable complication of medical air transport -- one that can be produced even in some patients without previous seizure history -- Cushman now instructs flight paramedics to routinely shield patients' eyes while en route.

"More than 30 years ago, there was a case reported of a young soldier waiting to board a helicopter who began seizing without any previous medical history," Cushman said. "Other reports exist for incapacitation of Air Force pilots, with anything from simple spatial disorientation to serious seizures. What's interesting is that these findings were reported for previously healthy individuals."

He and Floccare use the term "flicker illness" to refer to the whole continuum of complications, from wooziness to vomiting to all-out seizing, induced by quick-flashing light.

"Many aircraft commonly used for air medical transport have similar frequencies to the 24 flickers per second of the rotor blades in the helicopter used in the case we highlight," Cushman said. "And though this isn't so common a complication -- I've seen four total cases in the course of five years and thousands of transports -- the more I dialogue with others, the more they recall having encountered something similar."

Cushman noted that the report may be more relevant in sunnier places like Phoenix, where colleagues have been very interested in the report. Baltimore and Rochester see some 105 and 61 sunny days per year on average, respectively, compared to aptly named Phoenix's 211.