Seizures makes a child's life a living hell!

With her blonde hair, blue eyes and a scattering of freckles across her nose, Kayla Sterchow looks like a normal 10-year-old girl as she eats with her family at a busy restaurant.

But Kayla's head is aching. She's dizzy. The talking and laughing, glasses clinking and plates piling up are irritating her. Then her younger sister Hayley, 4, spills her drink.

Suddenly, Kayla explodes. She jumps up from her chair and runs through the restaurant. She screams and cries and makes strange noises, unaware of where she is or what she's doing.

Her parents, Tania and Roy, all too familiar with the situation, struggle to restrain their daughter and she kicks and punches them as the rage takes over. Other patrons stop and stare. Their thoughts are obvious: look at those hopeless parents who cannot manage their delinquent child.

Burning with embarrassment, Tania and Roy bundle Kayla, her brothers Andrew, 17, Ashley, 7, and Hayley out of the restaurant and into the car.

The awful experience reinforces the sad fact that taking their eldest daughter anywhere is just too risky.

"We don't go anywhere any more," Tania says. "We've locked ourselves away from the world. Because she looks quite normal, people don't understand there's something wrong with her. We always said if she was in a wheelchair people would be more understanding but instead they look at us like we're the parents from hell."

Kayla suffers from an extreme form of epilepsy. Epilepsy itself is a chronic neurological disorder that affects one in 200 children. It is characterised by seizures which occur when there is a discharge of abnormal electrical activity in the brain cells. In most children, anti-epileptic medication controls their seizures and they live a full and active life. More than half eventually grow out of the condition.

But for children like Kayla, no drugs have been able to stop her suffering between six and 10 seizures a day since she was a toddler.

Rather than the well recognised "tonic clonic" seizures, where a person loses consciousness and starts jerking around, Kayla has "complex partial seizures" in which she goes into a vague, unresponsive or dreamlike state and acts or speaks strangely.

"It's like she snaps and she's a different person," Tania says. "She gets violent and aggressive and starts attacking everybody. There's five holes in the walls of our house and I'm covered in bruises."
These non-convulsive seizures are difficult to recognise and are frequently misinterpreted as tantrums. Epilepsy advocates say that, for many people, coping with the stigma associated with the condition is harder than living with the epilepsy itself.

Carol Ireland, from Epilepsy Action Australia, says negative stereotypes such as people with epilepsy being a danger to others, mean sufferers and their families are often excluded.
At school in the Wollongong suburb of Figtree, Kayla is an outcast. Frequent outbursts of rage at other students and wild mood swings have made the children - and some of their parents - so scared they completely avoid her.

"Generally at school they think she's a nasty kid," Tania says.

Kayla has become distressed at her social isolation.

"I don't like having seizures because when I go to school I get angry sometimes so some people don't like me and won't play with me," she says.

Her neurologist, John Lawson, from the Sydney Children's Hospital at Randwick, says behaviour problems are common in children with severe epilepsy.

After five combinations of medication failed to reduce the seizures, Dr Lawson and Kayla's parents decided to try the last resort - invasive brain surgery.

He says her epilepsy is caused by a hippocampal sclerosis, which is a type of scar on her brain tissue in her left temporal lobe. The scar tissue sends erratic electrical impulses (brainwaves), causing the seizures.

While the surgery carries inherent risks, including the chance of infection and hemorrhaging, doctors and the family - led by Kayla - were desperate.

"I wanted to have the surgery so that I get better and I can do all the things my friends can do," Kayla says. Tania agrees: "She's got no quality of life and we hoped the surgery would make her better." In a four-hour procedure at Sydney Children's Hospital in February, neurosurgeon Mark Dexter shaved a small amount of hair and made an incision across the top of Kayla's head.
"We lifted out a window of bone between eye and ear, then we removed two parts of the temporal lobe; the first is the part scarred by the epilepsy, then, more importantly, the inside part, which is called the hippocampus, where the epilepsy is generated," he says.

Rugby league great Wally Lewis underwent the same surgery last year after suffering a seizure during a sports broadcast. Former Socceroos captain Paul Wade also went under the knife five years ago and no longer suffers fits.

It will be two years before doctors know if Kayla's surgery is a success. On the positive side, she has not suffered a single seizure in the two-and-a-half months since the operation. However, her behaviour has worsened, an outcome Dr Lawson warned may occur. "It's such a traumatic event for the brain - it's like a death in the family - and it takes a long period of adjustment," he says.

Despite an increase in her aggression, school life has become a little easier for Kayla. Time off and the huge scar she is sporting on her head have alerted students and parents to the fact she has a condition that causes her behaviour.

"We're just hoping to get through the next six months," Tania says. "Then we can help her catch up with schoolwork, she can do things her friends are doing and not miss out on life any more."
Epilepsy Awareness Week begins today.

Carol Ireland, from Epilepsy Action Australia, says negative stereotypes such as people with epilepsy being a danger to others, mean sufferers and their families are often excluded.

At school in the Wollongong suburb of Figtree, Kayla is an outcast. Frequent outbursts of rage at other students and wild mood swings have made the children - and some of their parents - so scared they completely avoid her.

"Generally at school they think she's a nasty kid," Tania says.

Kayla has become distressed at her social isolation.

"I don't like having seizures because when I go to school I get angry sometimes so some people don't like me and won't play with me," she says.

Her neurologist, John Lawson, from the Sydney Children's Hospital at Randwick, says behaviour problems are common in children with severe epilepsy.

After five combinations of medication failed to reduce the seizures, Dr Lawson and Kayla's parents decided to try the last resort - invasive brain surgery.

He says her epilepsy is caused by a hippocampal sclerosis, which is a type of scar on her brain tissue in her left temporal lobe. The scar tissue sends erratic electrical impulses (brainwaves), causing the seizures.

While the surgery carries inherent risks, including the chance of infection and hemorrhaging, doctors and the family - led by Kayla - were desperate.

"I wanted to have the surgery so that I get better and I can do all the things my friends can do," Kayla says. Tania agrees: "She's got no quality of life and we hoped the surgery would make her better." In a four-hour procedure at Sydney Children's Hospital in February, neurosurgeon Mark Dexter shaved a small amount of hair and made an incision across the top of Kayla's head.

"We lifted out a window of bone between eye and ear, then we removed two parts of the temporal lobe; the first is the part scarred by the epilepsy, then, more importantly, the inside part, which is called the hippocampus, where the epilepsy is generated," he says.

Rugby league great Wally Lewis underwent the same surgery last year after suffering a seizure during a sports broadcast. Former Socceroos captain Paul Wade also went under the knife five years ago and no longer suffers fits.

It will be two years before doctors know if Kayla's surgery is a success. On the positive side, she has not suffered a single seizure in the two-and-a-half months since the operation. However, her behaviour has worsened, an outcome Dr Lawson warned may occur. "It's such a traumatic event for the brain - it's like a death in the family - and it takes a long period of adjustment," he says.

Despite an increase in her aggression, school life has become a little easier for Kayla. Time off and the huge scar she is sporting on her head have alerted students and parents to the fact she has a condition that causes her behaviour.

"We're just hoping to get through the next six months," Tania says. "Then we can help her catch up with schoolwork, she can do things her friends are doing and not miss out on life any more."

Australian government promises help for family dealing with seizures

The NSW Government will announce $5million in funding today for services to treat people with epilepsy.

Health Minister Reba Meagher said the new Comprehensive Epilepsy Service would provide assessment and treatment for an extra 400 people each year.

The funding over three years would go towards nursing and medical staff, a medical registrar in neurology and assessment and monitoring equipment.

A co-ordination centre would be also established to collect data and share information across NSW.

Epilepsy is a disruption of the normal activity of the brain that results in recurrent seizures. It affects about 200,000 Australians.

"While there have been significant advances in anti-epileptic medications over the years, in around 30per cent of cases epilepsy cannot be adequately managed by medication, and some experience more than 20 seizures a day," Ms Meagher said. "For those people, this service will provide access to better treatment options, including surgery, and a better chance at managing their epilepsy."

Kayla Sterchow, 10, underwent surgery to try to tame her extreme form of epilepsy, which makes her prone to violent rages.

Mentally disabled man is missing and needs seizures' medication

Barbara Lamascus has four grown sons, six grandchildren and one great-grandchild - Mother's Day should have been full of joy, surrounded by family.

Instead, she spent Sunday calling hospitals and homeless shelters, and wandering around San Francisco peering into the faces of men on the street wrapped in blankets and newspapers. She was looking for her son Bobby Joe Lamascus, 50 years old and mentally disabled.

He disappeared Thursday while on a trip to San Francisco with his San Bruno group home. It's not clear how he went missing and even where he was last seen.

"He always calls me up in the morning and says happy Mother's Day," said Barbara Lamascus, 73. "He calls me three times a week. He doesn't really care about the conversation, he just wants to talk."

Bobby Joe is tall and thin, and missing all of his top teeth - Barbara Lamascus has bought him dentures but he keeps throwing them out, she says with a small laugh. She doesn't know for sure what he was wearing the day he disappeared, but it was almost certainly jeans and a brown jacket, because that is what he wears every day.

He has severe epilepsy and takes medication every four hours to help prevent seizures, which can occur as often as every few minutes. That's what scares her the most, Lamascus said: "We're checking the hospitals every day."

How he went missing is still a frustrating mystery, said Lamascus and two of her sons, who helped her search all weekend. Bobby Joe and four or five other residents of his home were on a regular trip to San Francisco to work for a few hours on Thursday. About 1:30 p.m., they stopped somewhere on Geary Boulevard, but staff at the group home have told police and the Lamascuses different versions of where they stopped and why.

When staff members called police two hours after Bobby Joe disappeared, they said that the group had stopped for a bathroom break at Geary Boulevard and Scott Street, and that Bobby Joe went into the men's room and never came back to the van. On Saturday, fully two days after Bobby Joe had disappeared, the man who was driving the van told the family that the group had stopped for lunch at an intersection one block east, at Geary Boulevard and Divisadero Street, and that Bobby Joe left to buy cigarettes and never returned.

Barbara Lamascus said Sunday she couldn't remember the full name of the group home, but said it has the name Acacia in it. A message left on an answering machine at a home with that name, in San Bruno, was not immediately returned Sunday.

What Lamascus knows for sure is that the group home didn't call to tell her that her son was missing until Friday morning, about 16 hours after he disappeared.

"We could have been up here (on Thursday)," said Lamascus, who lives in San Jose and started searching for her son on Friday, after she learned he was missing.

On Sunday morning, Lamascus and her sons Richard and Jim drove San Francisco from Fisherman's Wharf to Golden Gate Park - Jim Lamascus said that by noon, he had driven 100 miles. It's easier, he said, with more people in the car, so they can stare out the windows and improve their chances of spotting his brother.

Later, they walked around the Western Addition neighborhood where Bobby Joe disappeared, handing out flyers and talking to employees at fast-food restaurants and liquor stores, anywhere he might have stopped.

"It's a worst-case scenario, that the place where he went missing is in the middle of the city. He could be anywhere," Jim Lamascus said. "He could have gotten on a bus to Oakland, he could have gotten on BART. He might just be doing his own thing in a coffee shop somewhere."
Bobby Joe is able to take care of himself, his mother said - he knows her phone number and calls her regularly from pay phones, and almost every day he leaves his group home to buy coffee or cigarettes on his own.

He likes to walk, she said, but he's never wandered away for long. On the few occasions he's gotten lost, he either called his mom or brothers or found a police officer to help.

Barbara Lamascus said her son isn't often easy to be around - he doesn't make friends and he has a short temper. But he's close to his mother. They have a standing date every Saturday, when she picks him up at the home and takes him out to breakfast and lunch.

"He wouldn't ever miss his Saturday, unless something was wrong," Barbara Lamascus said, walking past a park on Geary, where children were playing baseball Sunday afternoon. "I don't want to say what I think happened to him. I'm trying to stay positive."

Have you seen him?

Bobby Joe Lamascus is 6 feet tall and weighs about 150 pounds. He has no upper teeth. He most likely is wearing jeans and a brown jacket. He was last seen on Geary Boulevard around Scott or Divisadero streets.

Anyone with information about Lamascus should contact the San Bruno Police Department at (650) 616-7100.

E-mail Erin Allday at eallday@sfchronicle.com.

Elaine's fight against seizures

Elaine Joost cuddles her 8-year-old daughter, Emily, in the sunroom of the family's home.
She smiles at her daughter, chats with her, hugs her and doesn't complain when Emily can't decide whether she wants to stand or sit.

Emily doesn't engage in the conversation verbally with her mother, but her blue eyes smile, and the corners of her lips turn upwards when Elaine or the girl's father, Lyndon, talk to her and compliment her. She seems to enjoy company.

Emily has Aicardi syndrome, a genetic disorder so rare that only 500 people worldwide have been diagnosed with it. That makes Emily one in about 13.6 million people.

Emily was diagnosed with Aicardi syndrome when she was 3 months old.

"It was very difficult for me, especially that first year," Elaine said. "In the beginning, it was always, 'Am I going to be strong enough? Can I do this?'"

While she is developmentally delayed and is unable to walk, talk or feed herself, Emily is a very happy girl.

And that's really all that matters to Elaine and Lyndon.

"There are a lot of things she can't do herself," Lyndon said. "We feed her and she'll drink through a straw, if she wants to. Sometimes she doesn't want to. But she smiles a lot, she's happy. And when she starts giggling you can't help but laugh with her. She has this happiness around her that you can't help but get caught up in."

Elaine is often surprised by how people respond and react to Emily. She recalled a big, burly biker in black leather walking up to the family and squatting down to talk to Emily. The man told Emily how special she was and how much Jesus loved her. It was a moment of many that touch their lives regularly.

"She's brought a really interesting richness to our lives," Elaine said, pulling Emily into her lap and tucking her child's head beneath her chin. "People will approach her and talk to her and offer prayers for her. But what would she get? To walk and talk? To eat by herself? She'd have those things, but she wouldn't be Emily any more. She wouldn't be this same, wonderful child. She's the happiest person I know. Why would I wish all the worries that 'normal' people have on her?"
Emily can make noises to show her pleasure or displeasure with the world around her, but she can't form words. She might not talk with her own voice, but that doesn't stop the Joost family from helping her out a bit.

"Oh, she talks all the time, with our voices," Lyndon said with a laugh as he reached over to push an unruly wisp of hair from his daughter's eyes. "It's really rather funny at times, especially when we start picking on each other how we think Emily would. But there is probably nothing better than just snuggling with her. Just getting her into your arms and snuggling with her is so wonderful."

Aicardi syndrome was first identified in 1965 and typically affects only girls. It is marked by the absence of the corpus callosum, a bundle of nerves sitting between the right and left sides of the brain that allow the two halves to communicate. There is no cure, and information and research about the syndrome is limited.

Babies develop infantile seizures which follow them through their lives. Emily has, on average, around four seizures a day, with seizure medication and an implant that is supposed to help control her seizures. She has been on nine different seizure medications in an attempt to control them.
The seizures aren't grand mal seizures typically associated with epilepsy; they are more like spasms that Emily can't control. Sometimes the spasms last as long as 45 minutes.

The Joost family day can start around 3 a.m. with a seizure. Emily's seizures usually happen in the morning, but sometime she'll have an afternoon seizure.

"If someone had told me nine years ago that seizures would become an everyday part of my life, I wouldn't have believed them," Elaine said. "The seizures are definitely the biggest thing for us."
When Emily was born, an estimated 30 percent of the girls died before their third birthday and about 60 percent died before their 10th birthday. Now about 40 percent of Aicardi-affected girls live to their 14th birthday, and some are even living into their 40s.

Emily received an iGallop as an early Christmas present last year and it's become one of the activities she looks forward to every day. The iGallop is a machine that simulates the movement of a horse at the walk, trot and gallop, paces that mimic the walking and running movement of a human and strengthens a user's core strength.

Emily's iGallop has been dubbed Checkers.

"A lot of parents at the Aicardi conferences talk about their daughters doing the riding therapy," Elaine said. "So, I started researching and we heard about the iGallop. As soon as we put her up there, she straightened right up. Her therapist has even noticed a difference in her core muscles. Her standing has gotten better with assistance. She is definitely stronger at the hips. And she loves it."

Some days can be hard, especially when Emily's seizures are more numerous than usual, or she isn't feeling well and can't tell her parents where it hurts.

"It's like having an infant all the time," Elaine said. "In the middle of the night when you've been up with her for the past seven nights, sometimes it's, 'Who's going to get up with her this time?' It can be exhausting."

Emily loves music and concerts, and the family takes her to as many as possible. She loves Slinkies, balloons, Jeopardy and Dancing with the Stars. Last weekend, the family took a trip to Giant City State Park in Southern Illinois and spent a day hiking, Emily making the trip up and down hills and through the woods in her wheelchair.

Elaine doesn't worry about the what-ifs. What if Emily was born without Aicardi syndrome? What if she could talk?

"If you dwell on the fact that you'll never hear her say 'I love you' or have a conversation with her, you'll just wear yourself out," Elaine said. "I could push her more. I could make her do more things, but I don't because she's so happy and that's all that really matters, that she's happy.

"I feel really blessed, and lucky, to have her in my family and I've learned a lot from her. I've learned so much patience from Emily. We take things at a little slower pace, we enjoy things a little more. As it gets close to Mother's Day I start thinking about my mom and grandma and how much they would have loved to meet her."

Victims of hackers can suffer seizures

On Easter weekend, a hacker who didn’t intend to steal visitors’ personal information hit the Epilepsy Foundation’s Web site. Instead the hacker posted rapidly flashing images on the foundation’s Web site, causing many migraines and near-seizure reactions.

“This was clearly an act of vandalism with the intent to harm people, and we shut the attack down immediately,” said Eric R. Hargis, president and CEO of the Epilepsy Foundation. “We’ve established deterrents in the system to prevent similar incidences.”People with photosensitive epilepsy are sensitive to flashing or flickering objects.

Oftentimes, these objects can induce seizures, or seizure-like activity.Many people who viewed the at-first harmless-looking messages recently posted on the Foundation’s forums involuntarily froze when they saw what was posted, even if they didn’t experience a full-on seizure, the foundation said.

"They were out to create seizures," said Ken Lowenberg, senior director of Web and print publishing for the foundation.The FBI is now investigating the source of the harmful images, while visitors to the Web site’s support forum are no longer allowed to post animated images.In another recent attack, hackers exploited a simple coding vulnerability in Sen.

Barack Obama's Web site to redirect users visiting the community blogs section to Sen. Hillary Rodham Clinton's official campaign site."I count this in the same category of teenagers who think it's funny to put a cat in a bag and throw it over a clothesline - they don't realize how cruel it is," said Paul Ferguson, a security researcher at antivirus software maker Trend Micro Inc.

"It was an opportunity waiting to happen for some mean-spirited kid."Recently, a logo animation for the 2012 Olympics in Britain caused thousands of people to experience seizures, and others have reported seizures and migraines caused by video games and animated TV series.The foundation estimates that more than 3 million American have epilepsy, while about 3 percent of those people have photosensitive epilepsy.

A diet high in fat and low in carbohydrates and protein reduced seizures in children with epilepsy in the first clinical study to test the food regimen, U.K. scientists said.

Researchers at University College London analyzed results from 103 children between 2 and 16 years old who didn't respond to drugs and had at least seven epileptic fits a week. Patients on the diet had more than one-third fewer seizures after three months, while attacks increased by more than one-third in those who didn't change their diets, the scientists said in Lancet Neurology.
``We have shown that the diet has efficacy and should be included in the management of children who have drug-resistant epilepsy,'' Professor J. Helen Cross wrote in the article.

The high-fat, low-carbohydrate regimen has been widely followed for drug-resistant childhood epilepsy since it was originally reported to be effective in the 1920s. The U.K. researchers said their study is the first to test it as a treatment. The diet is believed to copy the body's response to starvation, in which the brain runs on chemicals known as ketone bodies rather sugars, though its mechanism isn't clear, the scientists wrote.

The study supports conducting more research to try to determine why the diet works, Max Wiznitzer of the Rainbow Babies and Children's Hospital in Cleveland wrote in an accompanying comment.
The most frequently reported side effects were constipation, vomiting, lack of energy and hunger. The researchers didn't specify what foods were included in the study, saying only that it was based on three or four parts of fat to one part carbohydrate and protein.

The study was funded by HSA Charitable Trust, Smiths Charity, Scientific Hospital Supplies Ltd. and the Milk Development Council.

Mother beaten to death by sons and nephew on a account of seizures

A woman was brutally beaten to death by her three sons with the help of their cousins in Ghaziabad on Saturday.

Fifty five-year-old Shashi’s three sons — Rohit, Ashish and Navneet — were trying to exorcise her of the spirit of a relative who had died a few months ago.

The three men, one an engineering student, another an MBA degree holder and the third one a student of Class XII, together with their cousin, beat Shashi to death with rods.

They then tried to sacrifice their sister-in-law to bring their dead mother back to life and even beat up their sister Reena, her husband and other relatives who tried to intervene.

"They thought she was possessed with the spirit of Goddess Kali," Preeti Singh said.

All four aged between 18-24 years were arrested on Sunday and sent to a 14-day judicial custody by a Ghaziabad court.

The assumption of the sons that their mother was possessed was based on the fact that Shashi suffered frequent seizures.

Yet, instead of seeking professional help, the sons decided to take things in their own hands.
Psychiatrists say that the problem lies in lack of education regarding metal illnesses.

The incident has left the family and the neighbours stunned. The fact that three educated young men can kill their mother because of superstition has raised question on whether education can really impart wisdom.

Wind turbines vs. seizures

Wind farms are more than just an eyesore. They can cause epileptic fits.

The flickering of sunlight through the turbines' spinning blades can trigger seizures in the most vulnerable, an expert warned yesterday.

The flicker caused by turbines, like these at Stirling Castle, can cause seizures

Professor Arnold Wilkins, who believes the link has been overlooked, is calling on engineers to consider the risk when building farms.

Epileptics are in danger of a seizure if light flickers at three or more times a second.

Wind turbines usually create three flickers a second, prompting the professor to say: "We don't want more than that. But there may be instances where turbines are close together and their blades cross over, leading to a greater frequency of flickers. You wouldn't want the shadow to fall on a public place.

"The biggest risk is for epileptics living or working in the shadow of blades," he said.

This is not the first time environmentally-friendly technology has been linked to health problems.
Energy-saving light bulbs are also thought to trigger epileptic fits, as well as migraines and skin problems.