Babies with severe Epilepsy are denied immediate treatment if not Dravet Syndrome

BABIES with a severe form of epilepsy risk having their diagnosis delayed and their treatment compromised because of a company's patent on a key gene.

It is the first evidence that private intellectual property rights over human DNA are adversely affecting medical care.

Deepak Gill, head of neurology at the Children's Hospital at Westmead, said he would test at least 50 per cent more infants for the SCN1A gene - which would diagnose the disabling Dravet syndrome - if the hospital could conduct the test in-house.

But rights to the gene are controlled by the Melbourne-based Genetic Technologies, which has already threatened to stop public hospitals testing for breast cancer gene mutations, and the hospital will not risk a similar problem.

Specialists are sending blood samples to Scotland, and only babies whose seizure patterns closely resemble Dravet syndrome are tested. This means children with slightly different symptoms may be treated with the wrong medicines for months, potentially retarding their development.
"It's frustrating that we can't get the test done readily," Dr Gill said. "If we could include it as part of the work-up, we could identify them early."

At present the diagnosis is often delayed until the child is 12 to 18 months old. This is after the optimum time for treatment with strong drugs that are unsuitable for most babies with epilepsy but are used for infants with Dravets to control severe seizures that can damage the brain. Standard childhood epilepsy medications are ineffective with Dravets and may worsen it, Dr Gill said.
The situation comes amid growing concern among doctors and medical researchers over the ethics of granting private ownership to human DNA. A Senate inquiry announced this month will investigate the effects of gene patenting on health-care.

SCN1A is the most important epilepsy gene discovered, Dr Gill said, and is abnormal in about 70 per cent of children with Dravet syndrome, which affects about one in 30,000 babies - almost 10 per cent of infant epilepsy cases.

About one in 20 children have a seizure when they develop a fever, though only a minority had epilepsy, Dr Gill said.

The Scottish laboratory conducts SCN1A testing for all of Britain. Dr Gill said the price of the test - about $1800 - was similar to that offered by Genetic Technologies, but he had more confidence in the expertise of the Scottish laboratory, run by a pediatric neurologist.

Dr Gill said patenting the gene "may have helped initially to define and produce the test, but in 2008 it's not helping kids right now to access the test".

John Christodoulou, director of the Western Sydney Genetics Program, based at the same hospital, said his laboratory could not risk SCN1A testing in case Genetic Technologies - which licenses the gene patent from an Adelaide biotechnology firm, Bionomics - later barred him from testing or imposed a prohibitive royalty.

Genetic Technologies caused an uproar last month when it threatened to sue hospitals that test for breast cancer genes.It is reviewing that position.

Mervyn Jacobson, a founding director of the company, said, "The question is, are public hospitals allowed to break the law and breach patents granted by the Australian Government?"
While in principle the company would insist on its rights, in practice it would be prepared to negotiate, he said. "We don't need to necessarily enforce them against publicly funded institutions."
He was unaware of an earlier approach by Dr Christodoulou to ask how the company would view the establishment of public SCN1A testing, made to a previous management team.

Luigi Palombi, an intellectual law expert from the Australian National University, said legislation needed to be revised to prevent patenting of human genes.

"Why should these people have a patent over DNA, and over treatment?"

Dr Gill said patenting the gene "may have helped initially to define and produce the test, but in 2008 it's not helping kids right now to access the test".

John Christodoulou, director of the Western Sydney Genetics Program, based at the same hospital, said his laboratory could not risk SCN1A testing in case Genetic Technologies - which licenses the gene patent from an Adelaide biotechnology firm, Bionomics - later barred him from testing or imposed a prohibitive royalty.

Genetic Technologies caused an uproar last month when it threatened to sue hospitals that test for breast cancer genes.It is reviewing that position.

Mervyn Jacobson, a founding director of the company, said, "The question is, are public hospitals allowed to break the law and breach patents granted by the Australian Government?"

While in principle the company would insist on its rights, in practice it would be prepared to negotiate, he said. "We don't need to necessarily enforce them against publicly funded institutions."
He was unaware of an earlier approach by Dr Christodoulou to ask how the company would view the establishment of public SCN1A testing, made to a previous management team.

Luigi Palombi, an intellectual law expert from the Australian National University, said legislation needed to be revised to prevent patenting of human genes.

"Why should these people have a patent over DNA, and over treatment?"

Inflammation vs. Epilepsy

A breakdown in a reaction between immune cells and blood vessels in the brain appears to play a key role in epilepsy, Italian researchers said on Monday.

The discovery could mean that some modern antibody-based drugs designed to modify the immune system used in other diseases may one day help fight the debilitating disorder.
A study of mice showed how immune cells sticking to blood vessels in the brain caused inflammation that contributed to epileptic seizures, Gabriela Constantin of the University of Verona in Italy and colleagues reported.

The finding could lead to new treatments to prevent the condition that affects about 1 percent of the general population worldwide, said Constantin, who led the study with Paolo Fabene. Its findings were published in the journal Nature Medicine.

"This mechanism was not previously suspected in epilepsy," she said in a telephone interview.
Epilepsy is considered incurable but medicines can control seizures in most people with the common neurological disorder, although sometimes they can have severe side effects.
Many seizures -- which are caused by excessive electrical activity in the brain -- involve loss of consciousness, with the body twitching or shaking. People who have more than one seizure are considered to have epilepsy.

The researchers found that during a seizure the brain released a chemical that caused the white blood cells, or leukocytes, to stick to blood vessels. The immune cells protect the body from threats such as bacteria, viruses, and infections.

But when these immune cells stuck to the brain blood vessels they caused damage by releasing molecules that caused inflammation and contributed to seizures in mice, Constantin said.
"We found a lot of inflammation in this process in the generation of a new seizure," she said.
Mice that received monoclonal antibodies to block the immune cells from sticking to blood vessels had a dramatic reduction of seizures, in some cases 100 percent, Constantin said.

The treatment worked in a similar way to Elan Corp Plc's multiple sclerosis drug Tysabri and Genentech Inc's Raptiva for psoriasis, she added.

This means these kinds of drugs might also one day be used to treat epilepsy and the findings could also lead to new anti-inflammatory treatments for epilepsy, she said.

"We predict other inflammatory drugs can work and be discovered for use in humans," she said. "We have preliminary data on other inflammatory mechanism."

http://www.reutershealth.com/archive/2008/11/26/eline/links/20081126elin023.html

New diet helps control seizures especially during the holidays

There's a diet out there that's actually promising to make holidays dinners more enjoyable for some people.

It's called the Low Glycemic Index. But its goal, in this case, isn't to lose weight. It's to help people with epilepsy reduce their seizures. Two-and-a-half-year-old Alexandra Quandt of Lake Elmo is benefiting.

This sunny little girl, with big eyes, was born with a physical brain malformation called Bilateral Perisylvian Poly Micro Gyria or PMG. Because of the PMG, Alexandra can have numerous seizures a day.

Her father, Mark Quandt, says, "Right now she gets between 10 and 15 a day, real small, real short."

But she has fewer seizures than she might have otherwise thanks to the Low Glycemic Index diet. Alexandra's mom, Rochelle Quandt, says, "We know when we don't follow it to the 'T' and we go off it there is an increase in severity and frequency."

This same low-carbohydrate diet that has helped many people lose weight has been shown to reduce seizure frequency nearly as well as a more restrictive, low-carb, very high fat diet called the Ketogenic diet.

Karri Larson is a registered dietician at Gillette Children's Specialty Healthcare. She explains what those on the Ketogenic diet might eat. She says, "A typical meal would be two ounces of cream, a couple pats of butter, 1 to 2 oz of high fat meat then two to three carrots or several grapes."
Rochelle Quandt says, for her daughter, "That would be really hard. It just doesn't seem right nutritionally."

Larson says the Low Glycemic Index diet gives patients a greater variety of foods and therefore makes it easier for them to sit down for meals with their family and eat much of the same things.
She says, "It does require counting carbohydrates and learning the glycemic index of foods but its much more family friendly."

She also says the Ketogenic diet requires hospitalization to implement it, while the low glycemic index diet does not and is one that everyone in the family can follow and reap the benefits.
For the Quandt's, that means this Thanksgiving, like last Thanksgiving, Alexandra won't need a special meal just for her. Mark Quandt says, "She had turkey and sweet potato and any vegetable, almost any vegetable is good."

And her parents know she's getting all the nutrition she needs.

Rochelle says, "She's just the love of our lives."

To find out more from Gillette Children's Specialty Healthcare, click here.

By Renee Tessman, KARE 11 News(Copyright 2008 by KARE. All Rights Reserved.)

Company works hard to discover new breakthrough medication to control Epilepsy

For people who suffer from epilepsy, current drugs don’t always control seizures. A startup company with ties to UW-Madison technology, NeuroGenomex Inc., is trying to provide a breakthrough medication. Epilepsy affects more than 3 million Americans every year, with most new cases developing in children and elderly. Epilepsy is a central nervous system disorder whose main symptom is seizure caused by electric activity in the brain.

Seizures can vary in type and severity depending on how much or what part of the brain is affected. They range from distant staring off into space to uncontrollable muscle stiffening or jerking. Seizures can be treated but current medication does not effectively treat all seizures. Fifty percent of epileptic patients, nearly 1.5 million people in the United States alone, still experience some form of seizure while on medication, sometimes more than 100 episodes a day. But relief may be coming in the form of a new drug, 2-deoxy-D-glucose (2DG) from NeuroGenomeX, Inc. 2DG has been used since 1979 for brain PET imaging studies.

NeuroGenomeX, Inc. is a drug development company dealing with the discovery and validation of drugs to treat neurological disorders. Dr. Thomas Sutula, co-founder of NeuroGenomeX, Inc., and other scientists discovered therapeutic actions of 2DG as an anticonvulsant. 2DG acts differently than most drugs in that it reduces the susceptibility to additional seizures by increasing the threshhold level at which seizures occur.

Current medication targets seizures by decreasing the electrical activity in the brain. 2DG has the capacity to significantly reduce seizure frequency in epileptic patients who do not respond to existing drugs. 2DG has had positive results in four different animal epilepsy models, which is proving to be very predictive of human effectiveness.

NeuroGenomeX, Inc., through pre-clinical development, anticipates filing an Investigational New Drug application with the Food and Drug Administration, which will lead to human clinical trials of 2DG. NGX will complete all steps through Phase 2 but then 2DG expects to be acquired by a large pharmaceutical company to carry out Phase 3.

NeuroGenomeX presented to investors at the 2008 Wisconsin Early Stage Symposium, held Nov. 5-6 in Madison. -- Bohn is a senior at UW-Madison majoring in Dairy Science and Life Science Communications.

St. Lucie Humane Society started fund for special-needs animals

The St. Lucie County Humane Society started a new fund to help special-needs animals brought to the shelter by families facing financing difficulties.

The Buddy's Special Need Fund all started with Buddy, a 3-year-old yellow Labrador retriever, after his family turned him into the shelter when they were moving and could no longer afford the medication for his seizures.

"There's a 10 percent spike of family's turning in their pets because they can no longer afford them," said Frank Andrews, the society's executive director. "The biggest thing is families relocating having to find jobs and haven't lined up accommodations for their pets."

The fund is designed for families who come to the shelter saying they can't afford their pet's care any longer because of a special condition. The fund will help pay for the animal care so the pet can stay with its family, Andrews said.

The fund also will help pay for the animals in the Humane Society's care that have special conditions, Andrews said.

Skin conditions, heartworms, seizures, joint problems and more all fall under the umbrella of special-needs problems.

The fund initially started when a donor gave $250 to start the fund after meeting Buddy and hearing his story.

"As the fund grows, we can do bigger and better things," Andrews said.

Cartographic specialist for the County's Property Appraisers Office, Joyce Ingersoll, who has been doing the pet calendars for the Humane Society of St. Lucie County for the past five years, asked Property Appraiser Jeff Furst if the 2009 calendar proceeds can go toward the fund.

With Furst's approval, the fund now has an additional $1,500.

The most surprising donation thus far has been an older car.

Fortunately, Buddy was adopted Tuesday afternoon after spending seven weeks at the shelter with no seizures. A veterinarian from West Palm Beach adopted him and the Humane Society will pay for the first three months of Buddy's seizure medication thanks to the fund that was started in Buddy's name, said David Robertson, spokesperson for the Humane Society of St. Lucie County.

Singer rushed to hospital as she suffered from seizures

Amy Winehouse was reportedly rushed to the hospital after having a seizure. The troubled singer allegedly had a fight with husband Blake Fielder Civil and went on a drinking and drug binge. The Sun reports that Winehouse “just totally lost it” and didn’t stop drinking until she began having seizures.

“It didn’t stop until she was on the floor Sunday. She has ended up in hospital a few times after similar drink and drug related seizures. If she carries on, one of these incidents will be her last,” a source says.

Winehouse is still in the hospital undergoing tests. A rep for the singer says that she was rushed to the hospital for “a bad reaction to the combination of medication she has currently been prescribed.”

Epilepsy Awareness

One in 100 Americans have epilepsy.

It's a disorder of the brain that causes a person to have recurring seizures.

There are 20 different types of seizures, and they can be hard to distinguish, especially in young children.

For any parent whose children are living with epilepsy, it can be scary watching your child having seizures. But there are ways to help raise awareness and eliminate negative images associated with epilepsy.

Four-year-old Emmett Leyden goes to pre-school at Stock School on the Northwest Side.

Two years ago, he started having seizures. His mom, Erin, was terrified.

"In the beginning, he had seizures every day, up to 200 a day, and it was several different types of seizures. It's not your basic or your well-know grand mal seizures," she said.

After Emmett was diagnosed with epilepsy, the Leydens had to learn how to deal with it.

"He would just be standing there and collapse, hit his head on the table when eating on a toy, so he had to wear a helmet most of the time," Erin said.

A year ago, they found the right medication to help control his seizures.

"It took us a lot of trial and error with medications and different treatments," Erin said.

From the Leydens' experience, Erin and her sister-in-law Anne Marie Clancy started the American Epilepsy Outreach Foundation to help educate schools about epilepsy.

"It's important that the schools are aware of all of the different types of seizures, and it's important that the schools have basic information about epilepsy," said Anne Marie.

If the school staff has some knowledge about epilepsy, they can help parents.

"There's a lot of children in school who are having seizures, and oftentimes, parents don't even know it. Usually they say by the time your child's in middle school, the only contact the parent has with their child is at the dinner table, the only eye-to-eye contact," said Anne Marie.

Depending on the type of seizures, there are four ways to assist.

"The first one is to remain calm. And (the second), is to clear the area, you know, spread out the desks," Anne Marie said. "The third is comfort the person, comfort to everyone around them because it's very alarming for the crowd to see somebody having a grand mail seizure. And the fourth one is to call 911 if certain situations happen."

Educating people about epilepsy helps remove some of the stigmas associated with the disability.
"People are judged when they have epilepsy and seizures, and so we just want people that are living with epilepsy to get the compassion and the understanding, and we think that knowledge is power," said Anne Marie.

If you are interested in getting involved or want training from the American Epilepsy Outreach Foundation, go to http://epilepsyoutreach.org/

By Karen Meyer
(Copyright ©2008 WLS-TV/DT. All Rights Reserved.)

Monitors for Diabetes can prevent night time seizures

Monitors that continuously measure sugar levels under the skin can alert diabetics when levels fall too low during sleep and awaken them before a seizure occurs, according to a report in the journal Diabetes Care.

"Concerns over nocturnal hypoglycemia (low sugar levels during sleep) are a major reason for people with type 1 diabetes welcoming the possibility of using real-time continuous glucose monitoring with real-time hypoglycemic alarms," Dr. Bruce Buckingham of Stanford University, California, and colleagues write.

However, they note, continuous glucose monitoring has a 5- to 18-minute delay when compared with glucose levels measured directly from the blood. Greater delays occur when blood sugar levels are rapidly changing. This might mean that a seizure could occur before an alarm sounds, although there are no published reports of hypoglycemic seizures while a patient is wearing a continuous glucose monitoring device.

In the current study, the researchers examined the duration of sensor-detected nocturnal hypoglycemia preceding a seizure by asking investigators from around the world to submit cases. Four were included in the study.

Nocturnal hypoglycemia was documented on the continuous glucose monitoring record for 2.25 to 4 hours before the seizure occurred.

In two cases, the monitors were early models without alarms, but in one instance the alarm was inaudible under the subject's bedding.

"Glucose sensors should have sufficiently robust alarm systems, particularly at night, to insure either the patient or a surrogate is awoken to intervene," Buckingham and colleagues emphasize. "We suggest augmenting the alarm with a bedside device that would turn on a light and transmit the alarm to another location in the house, such as a parent's bedroom."

SOURCE: Diabetes Care, November 2008.

What does it mean to care for children with special needs?

I was looking after Samantha, a young child who has special needs. It was midnight when I heard her stirring and went to check on her. She was wide awake. It was so quiet that we could hear frogs chirping outside the bedroom window.

I leaned over and whispered "Sam, can you hear the froggies?" A big smile emerged on her little 5-year-old face, Sam, who cannot speak, blinked her eyes repeatedly to say "yes!!" I instantly smiled. That was the first time I had seen her respond to me.

Sam was only a year old when she spiked an uncontrollably high fever which, led to continuous seizures. As a result, she suffered severe neurological trauma. Almost overnight, Sam's health declined further and her doctors at BC Children's Hospital made the call: Sam should enter palliative care and Laura and the rest of Sam's potential family needed to prepare for her death.

"Potential" because Laura and her husband were in the middle of adopting Sam, and death was the last thing on everyone's minds. Laura and her husband had been busy preparing for Sam's adoption. The paperwork had been filed but the adoption had not yet been finalized.

Love for Sam prevailed and persistent family, friends and healthcare workers collaborated in support of bringing Sam home to die. But soon after she was home, she stabilized and since has grown into a beautiful wavy-haired, dimple-cheeked little girl.

Sam faces many challenges in her life; she can not walk or talk and is fed through a tube, and has a shunt implanted in her head that prevents cerebral spinal fluid from accumulating in her ventricles due to hydrocephalus. If it becomes blocked, seizures result.

Additionally, she requires daily medications to manage pain, seizures, spasticity, and immune system and vitamin deficiencies, among other issues. But despite her seemingly negative medical prognosis, Sam was and is still beautiful, resilient and loved.

I continue to be amazed by the contentment that exists in a household that is faced with the challenge of raising a daughter with multiple medical issues. Laura and her husband were presented with a dilemma that many of us could never dream of experiencing. Sam was always in need of a loving family but even more so after she suffered brain damage.

How does a family cope with having to make a decision regarding the fate of a child's life? Did Laura and her husband really have a choice? Laura says no; Sam was always going to be her daughter and as a mother, she has a responsibility to give her child the best life she could.

Even though Laura knows of the delicate state of her daughter and of the potential challenges that lay ahead, she personifies an unassuming calm strength. Laura's attitude is simply that she and her family are blessed to have Sam in their lives.

What is the secret to feeling so positive about something that is perceivably so negative? Perhaps it means facing those things in life that frighten us the most. Perhaps we avoid feeling pain or sadness so we can remain within the safety net of our comfort zone.

Freedom from the burden of the unexpected will undoubtedly protect us from feeling let-down but also deprives us of unexpected moments of happiness. This is the only way Laura can explain why adopting Samantha has been one of the best things that could have ever happened to her family.
And Laura's family and every member of Sam's support network seem to be the best thing that could have ever happened to Sam.

When medicine failed, love picked up the slack and provided hope to Sam and her family. Sam has led Laura to explore her greatest fears and feel the heartbreak that comes with the agony of being faced with potentially losing a child.

But Laura and her family do not see the heartbreak, they celebrate the everyday small things and embrace moments as simple as sharing a smile.

Sam and her family are an inspiration to me because they never forget that they are fortunate to have Sam in their lives.

Love can provide a sense of hope when all else seems wrong. I realized this when Sam and I shared that moment with the frogs and made a brief connection.

Regardless of how brief that moment might have been, I was overcome with a deep sense of love and a hope that has stayed with me.

Anja Purchase is in Simon Fraser University's fall 2008 semester in dialogue: health issues & ethics.

Man suffering from seizures is now missing

Police in South Hutchinson are looking for this man who they say has been missing since last week.

Shawn Burditt was last seen on November 13th in the evening hours near 6th and Elm in South Hutch.

Investigators say Burditt was last seen walking on a trail where people ride ATVs, while his friends were yelling at him to turn around.

Investigators searched the area near the ATV trails and Carey Park to Yoder Road for three days on foot, horses, ATV's and through the air with a Kansas Highway Patrol airplane.

Family and friends are worried about Burditt. They say he's has seizures and has disappeared in the past, but never longer than a day or so. They're also concerned because of the cold and wind. They also say he's a great guy who would help anyone.

SHAWN S. BURDITT

D.O.B 01-25-1968 (40 years old)

HEIGHT 5' 09"

WEIGHT 140 lbs.

If you have any information on where he is, contact Reno County Crime Stoppers at (620) 694-2666 or (800) 222- TIPS (8477).

A research team discovered a gene linked to Epilepsy

A University of Iowa-led international research team has found a new gene associated with the brain disorder epilepsy. While the PRICKLE1 gene mutation was specific to a rare form of epilepsy, the study results could help lead to new ideas for overall epilepsy treatment.

The findings, which involved nearly two dozen institutions from six different countries, appear in the Nov. 7 issue of the American Journal of Human Genetics.

In epilepsy, nerve cells in the brain signal abnormally and cause repeated seizures that can include strange sensations, severe muscle spasms and loss of consciousness. The seizures may not have lasting effects but can affect activities, such as limiting a person’s ability to drive. Most seizures do not cause brain damage but some types of epilepsy lead to physical disabilities and cognitive problems. Medications can control symptoms, but there is no cure.

“The study results were surprising not only because the PRICKLE1 gene had never been associated with epilepsy but also because the gene was not associated with any other human disease,” said the study’s lead author Alex Bassuk, M.D., Ph.D., assistant professor of pediatrics at the University of Iowa Carver College of Medicine and a pediatric neurologist with University of Iowa Children’s Hospital.

The nine families involved in the study all lived in the Middle East and came from one of three family lines. Of the 47 individuals in the three family lines, 23 had a form of progressive myoclonus epilepsy accompanied by ataxia — a condition that causes imbalance.

One family line has been extensively described by Hatem El-Shanti, M.D., a University of Iowa adjunct professor of pediatrics who now leads genetics research for the country of Qatar. The two other family lines had been researched by Sam Berkovic, M.D., at the University of Melbourne in Australia.

“By sharing and analyzing data sets, we realized there was a common mutation in the PRICKLE1 gene in the family members with this form of epilepsy,” Bassuk said.

To verify that the mutation might be related to the epilepsy, the team needed to test it in an animal model. This next step to find a suitable animal model involved a surprising coincidence: Bassuk, who had only recently joined the UI, realized through online research that the PRICKLE1 gene in zebrafish had been previously identified by another University of Iowa researcher, Diane Slusarki, Ph.D., associate professor of biology in the UI College of Liberal Arts and Sciences.

“I walked across the river to Diane’s side of campus, and we designed an experiment to test the human mutation in the zebrafish,” Bassuk said. It was ‘Iowa luck.’”

Slusarki and Bassuk’s collaboration revealed that the mutated PRICKLE1 gene does not behave normally in zebrafish. Bassuk noted that collaboration, whether on-campus or international, was essential to the success of the research study.

“We never could have done, or could continue to do this type of research, with just one person thinking about it,” he said. “From the clinicians who found and took histories on the study participants, to antibody testing at Stanford University to DNA shared from colleagues in Japan, the study required a lot of collaboration and coordination. And of course, we greatly appreciated the participation of the Mideastern families.”

Bassuk, and colleagues are now developing other animal models to investigate how PRICKLE1 gene is involved in epilepsy, and are investigating whether PRICKLE1 mutations are involved in the general population of patients with epilepsy. With that information, there is potential to develop new drugs for people with different forms of epilepsy in the general population, as well as for the study participants with the disease.

Dravet's Syndrome, a rare form of Epilepsy

It is a day Christina Reynoso recalls with perfect clarity. On Dec. 14, 2007, she took her 4-month-old son, Christian, to the doctor to catch up on his shots. That evening, he began convulsing and was rushed to Texas Children's Hospital, where he suffered uncontrollable seizures for almost two days.

"I had never seen anyone go into a seizure," Reynoso said. "I was freaking out. Even though they had given him medication, he kept going right back into the seizure."

Christian recovered, but doctors diagnosed him with a rare form of infant epilepsy, called Dravet's Syndrome.

A single mother, Reynoso and her two older sons, 9-year-old Isaac and 8-year-old Joel, were forced to move in with her mother in Conroe to be closer to a hospital.

"It was very emotional. We almost lost him. I don't think anyone should have to go through that," said Maria Barcenas, Reynoso's mother.

'It's a constant fear'Now, every time 16-month-old Christian twitches, rolls his eyes or has a half-second hesitation in his walk, they worry a seizure could follow.

"It's constant fear," Reynoso said. "You don't sleep well at night because you're watching him. Someone has to constantly be with him and watching him. It's opened up my eyes.

"You take things for granted. With the other two boys, I don't remember waiting for their first steps or words, but with him I'm always waiting to see if he's delayed or anything. It's so much more involved."

Not much left for ChristmasThe financial burden also has begun to weigh heavily on the family. Every hospital visit is at least $100 and each test costs $250. Every two to three months, Christian needs an EKG, an MRI or a CAT scan.

"It's expensive. I have insurance, but I spend $100 a month just on his medication," Reynoso said. "I put that before the car payment, before everything else. I'm so behind on bills. Always borrowing money for this bill, already late on that bill."

With Christmas coming, Reynoso hopes Goodfellows will help provide a few presents for her sons.
Funded by contributions from the public and businesses, the Houston Chronicle program uses all money collected to buy toys for needy children ages 2 through 10. The Chronicle pays other costs.
Barcenas said Christian's illness has had a big impact on his brothers.

"They automatically know to come downstairs, put on their shoes and they're in the car before we are," Barcenas said about the family's midnight runs to the hospital.

Barcenas calls her eldest grandson a hero. When Christian began to have a seizure at the baby sitter's house, Isaac knew to administer his brother's medication to stop the convulsions.

Every day is planned around Christian. Heat agitates his epilepsy, meaning if it's sunny outside, the family stays indoors. During Hurricane Ike, Christian needed air conditioning, so Reynoso spent nights sleeping in her car with her son, using what little gas they had to cool him.

Reynoso said the seizures have changed Christian's personality. Now older and dealing with the illness, Christian is happy, but more sensitive, Reynoso said.

"Whenever he has a seizure, he's like a different person," she said. "He's real down. It takes him awhile to recuperate."

Looking to the futureReynoso hopes to move closer to Houston soon to be nearer Texas Children's Hospital and her job as a general manager at a Wendy's. The doctors cannot promise her anything but more tests and waiting.

"They're not able to foresee if he's gone through all the turbulence," she said. "They don't know if he'll grow out of it, but they think he'll deal with it for the rest of his life."

Almost a year since his first seizure, Reynoso said every day she watches for a twitch or a tremor signaling an episode.

"I thought it would be one little seizure and he'd get over it," she said. "Never in a million years would I have thought this would happen to my son. Every day is just waiting to see what happens."

kimberly.stauffer@chron.com

Partial seizures patients may die due to sudden blood oxygen drop

A new study by researchers at UC Davis Medical Center suggests that the sudden unexplained deaths of some epilepsy patients may be a result of their brains not telling their bodies to breathe during seizures.

"Significant drops in blood oxygen levels are more common than we thought in patients with partial seizures," said study senior author Masud Seyal, a professor of neurology at UC Davis Medical Center and director of the UC Davis Comprehensive Epilepsy Program.

The study, published online in the Oct. 24 issue of the journal Brain, studied Sudden Unexpected Death in Epilepsy, what doctors call SUDEP for short, to examine deaths of epileptics not explained by repeated convulsive seizures, accidents or other mishaps.

"What we've known for a long time is that SUDEP appears to be the most important cause of increased mortality in epilepsy patients. What we haven't known is what causes it," Seyal said.
The findings suggest that some cases of SUDEP may result from the brain not signaling the patient to continue breathing during seizures, though more conclusive evidence is needed, he said.
"It may have to do with an abnormal heart rhythm or it just may be that the brain stops sending the proper signals to maintain normal breathing," Seyal said.

In the retrospective study, Seyal and his colleagues examined records of 300 seizures in 57 epilepsy patients with chronic, recurrent, unprovoked seizures. They compared patients with severe convulsive seizures to those with milder symptoms like transient confusion, lip smacking and head turning.

One-third of all seizures were associated with drops in blood-oxygen levels below 90 percent. Seyal said he was surprised to find that 12 percent of these patients' blood oxygen levels actually dropped below 70 percent during their seizures.

They also discovered that seizures in the temporal lobe of the brain are more often associated with significant drops in blood-oxygen levels and that males are more likely than females to experience dangerously low levels of oxygen during seizures.

The findings support the idea that some cases of SUDEP may be caused by a lack of brain signaling that makes the patient keep breathing, though scientists need to do more research before they know for sure, Seyal said.

The study is important, Seyal said, because it suggests that hospitals that monitor inpatients for seizures should use both continuous blood-oxygen monitoring that sets off alarms when blood levels are too low and around-the-clock monitoring by staff or relatives.

In a hospital setting, blood-oxygen levels below 85 percent require intervention, such as giving supplemental oxygen, turning the patient on his side or suctioning the patient's airway, to help the patient breathe.

Patients hospitalized for seizure monitoring in the UC Davis Comprehensive Epilepsy Program must have a relative or friend with them around the clock who can recognize their seizures and summon assistance when they occur, in addition to constant blood-oxygen monitoring.

Some medical centers also use video monitors that are continuously monitored by hospital staff. But many do not employ this kind of close monitoring.

"Our data show that it's important that respiratory parameters be closely monitored in the hospital," Seyal said.

The best strategy to reduce the likelihood of SUDEP is to promptly and effectively control patients' seizures, Seyal said.

Most seizures can be stopped with medication. Patients with seizures poorly controlled with medication often are candidates for surgery, which can have a high success rate. To perform the surgery, however, patients must be observed in the hospital, their medication must be reduced and seizures allowed to take place.

"This is the only way we can pinpoint the region of the brain responsible for the seizures and know where to operate," he said.

Seyal and his colleagues are working to determine the best ways to deal with patients who have severe drops in oxygen levels with seizures.

"The important thing here is to see how we can intervene to deal with the hypoxemia when it happens," he said.

###

Other UC Davis study authors include Lisa Bateman, assistant professor of neurology and Chin-Shang Li, associate professor of public health sciences. Data analysis for the study was partially funded by grants from the National Institutes of Health (NIH).

UC Davis Medical Center is the leading referral center in the region for the most seriously injured or ill patients and the most medically complex cases, covering 33 counties, more than 65,000 square miles and 6 million residents. It operates inland Northern California's only Level 1 trauma center, with comprehensive adult and pediatric emergency departments.

The center has been instrumental in keeping Sacramento County's preventable death rate at or below 1 percent, which is less than half the national average. Studies show patients with specific critical injuries have better survival rates and functional outcomes at Level 1 trauma centers and academical medical centers.

For more information, visit www.ucdmc.ucdavis.edu.

Father responsible for her daughter's seizures gets a slap on the wrist!

A Dartmouth man will not spend any time behind bars for shaking his three-month-old baby so violently that she began having seizures and temporarily went blind.Kevin Bernard Kosinsky, 44, was handed a conditional sentence Monday in Dartmouth provincial court of two years less a day for criminal negligence causing bodily harm to Michaelah Parkyn in 2005.

Three years later, there are signs that the little girl may never fully recover from her injuries. She doesn't speak as well as other kids her age, has trouble understanding simple directions and has yet to be toilet-trained.

Judge Flora Buchan stopped short of placing Mr. Kosinsky on house arrest and instead imposed a 7 p.m.-to-6 a.m. curfew for the first year of the sentence.

She ordered him to undergo mental health and anger management counselling and a neurological assessment.

After completing the conditional sentence, Mr. Kosinsky will be on probation for 18 months.

Michaelah's mother, Karyn Wolf, stormed out of the courtroom before the sentencing hearing was over and later told reporters she was “completely disgusted” with the sentence given to her former boyfriend.

“I expected more,” Ms. Wolf said.

“I don't understand how he can get a slap on the wrist. My child may never be right.”

A reporter asked Ms. Wolf if it was going to be hard to go home to her 3½ -year-old daughter after the judge's ruling.

“It's never hard to go home to my daughter,” she replied.

“The hard day is going to be when I have to explain all this to her — why her father's not in her life, why she has the learning disabilities that she has, and why, in my mind, he got a slap on the wrist for this.

“That's what's going to be hard.”

Mr. Kosinky, who wore a camouflage jacket and pants, pulled his hoodie up to conceal his face from photographers on his way in and out of court.

Accompanied by his current girlfriend and another woman, he left the building without commenting to reporters.

Michaelah was rushed to hospital on the night of Sept. 14, 2005, suffering from seizures. Her father, who had been looking after her at their Pinecrest Drive apartment, told doctors she had fallen off the couch.

Medical personnel at the IWK Health Centre in Halifax discovered bleeding in Michaelah's brain and behind both eyes. X-rays also revealed one of her ribs had been broken in the past.

The infant remained in hospital for a month while doctors worked to control her seizures, which sometimes lasted 80 minutes.

She was monitored by specialists for more than a year and required physiotherapy until she started walking at age 1½.

Mr. Kosinsky, of Windmill Road, went on trial last year and was convicted in July. The Crown wanted him sentenced to two years in federal prison while the defence asked for a conditional sentence of between 18 and 24 months.

He has never admitted abusing his daughter but two weeks ago told the court he was sorry “for what happened to my daughter. I failed my daughter ... and I have to live with that the rest of my life. I love my little girl so much.”

“This has been a challenging case from the start,” Judge Buchan said Monday. “At the sentencing stage, it is no less so.”

The judge described the case as “a single episode of loss of control” rather than a pattern of abuse.

“This was not a premeditated crime,” she said.

Judge Buchan said she was satisfied that Mr. Kosinksy, who had no previous criminal record, poses no danger to the public and that a conditional sentence can “provide appropriate denunciation and deterrence.”

She ordered Mr. Kosinsky, who works as a traffic controller, to complete 240 hours of community service by the end of 2009.

Crown attorney Cheryl Byard said she was “a little disappointed” but not surprised by the sentence.
“We asked for some jail time given the injuries that Michaelah sustained and how this has impacted on the family,” Ms. Byard said.

“However, Her Honour has done a thorough analysis and considered the purpose and principles of sentencing, the aggravating and mitigating factors, and has made a thorough decision. A conditional sentence is within the range.”

Epilepsy a condition often misunderstood by others

One thing people with epilepsy want others to know is "epilepsy is what we have, not who we are."

That quote is the mantra of Judy Dorris, public educator and coordinator of the Epilepsy Foundation for Middle and West Tennessee.

November is Epilepsy Awareness Month. There are more than 5 million reported cases of seizure disorders in the United States, according to the Centers for Disease Control and Prevention. About 40,000 West Tennesseans suffer with epilepsy.

"Over 16,000 children under the age of 14 have been diagnosed with epilepsy," she said. "And one in 10 of us will have a seizure sometime in our lifetime."

That's why it's important for the public to be able to recognize when someone is having a seizure and administer first aid, Dorris said.

Mike and Julie McMahon are advocates for epilepsy awareness. Their daughter, Lindsey, has the disorder.

"I think there is a stigma there," Mike said. "People who have epilepsy feel embarrassed at the mention of their disorder. I think when people know and understand it, the myths go away."

Julie said her daughter's epilepsy was diagnosed when Lindsey was 16 years old. She had been having seizures her whole life, but the family didn't know it was epilepsy.

Mike said it was hard at first dealing with the diagnosis.

"As parents, you're happy to know your child has 10 fingers and 10 toes," he said. "When we learned about her epilepsy, we asked ourselves 'Why?' 'What did we do?'"

But they learned there can be many causes for epilepsy and many ways to make Lindsey's life as good as possible, Mike said.

"We have been through a lot, testing medications, things like that," he said. "We do what we can."
Having knowledge about epilepsy is vital for everyone from doctors to employers, Julie said.

"Education is so important, for parents and everyone else," she said. "It helps me to help her. Every day, it's a learning experience."

About epilepsy

There are different types of seizures, Dorris said.

The first and most well-known type is called a tonic clonic which includes stiffening of the body with shaking. An absence seizure is when a person stops what he is doing.

"Children can have 100 absence seizures a day," she said. "They'll be talking and suddenly they stop. Before their epilepsy's diagnosed, most think the problem is ADD."

Other types of seizures may not involve the loss of consciousness. Eyes may flutter, a person may pick at his clothes or smack his lips.

There might be some tingling in the arms or legs, or sometimes a seizure can be just a person wandering around for a couple of minutes, Dorris said.

"It's important to know that not all seizures are the type everyone is familiar with, the jerking, stiffening type," she said.

How to react

In an emergency, the best thing a bystander can do for someone having a seizure is to turn him on his side so the airway is not blocked. It's also good to call 911 for help, Dorris said.

"It's a common myth that someone having a seizure will swallow their tongue, but it's not true," she said. "The tongue is attached to the mouth. There's no way."

Don't try to put anything on the tongue to hold it down, and don't panic, she said.

"Just stay calm, prop something under their head, and wait for the seizure to end," she said.

Another misconception about epileptic seizures is that they are painful, Dorris said.

"People typically don't remember having a seizure, and they don't feel any pain," she said. "It's a blessing for sure."

Epilepsy is not contagious and is not a sign that a person is mentally retarded or mentally ill, Dorris said. It is a symptom of a disorder of the brain.

"It can affect anyone of any age at anytime," she said. "For about 70 percent of people, the cause of epilepsy is unknown. For the rest, it's usually the result of a head injury, a high fever that leaves a lesion on the brain or drug use."

Most seizure disorders can be controlled by medications, but patients must take several medications to do so, Dorris said.

As a former educator in the public school system, Dorris now spends her days visiting schools and talking with students and teachers about epilepsy.

"People who have it are ashamed," she said. "And they shouldn't feel that way. We have got to fight that."

Visit jacksonsun.com and share your thoughts.

- Tracie Simer, 425-9629

Yoga vs. seizures

Stress has been one of the major causes that triggers epileptic seizures.

Recent studies have proven that yoga, as an add-on therapy to surgery and medicines can reduce the frequency of seizures or attacks among patients suffering from refractory epilepsy.

November 17 is World Epilepsy Day. In Karnataka alone, five out of every 1000 people are said to be epileptic.

The all-India figure for the number of people with epilepsy is 55 lakh to 78 lakh. Irrespective of age, nation and race, epilepsy can affect anyone, and it manifests itself largely during childhood.

A study funded by Free Chitra Tirunal Institute of Medical Science and Technology (FCTIMST), Thiruvananthapuram, found that yoga helped to reduce the frequency of epileptic seizures. More than 50 per cent of the patients involved in the study were totally seizure-free within a year of yoga therapy.

The study was conducted by neurologist Dr Rajesh B Iyer under the guidance of Dr K Radhakrishnan, HoD of Neurology at FCTIMST and yoga guru, G Mohan Das of Yoga Centre for Health Research, Varkala.

Speaking to this website's newspaper, Dr Rajesh who is now with Narayana Hrudayalaya in Bangalore, said that the premise of the study was to check whether yoga helps in reducing the frequency of epileptic seizures. The study involved 20 patients and six months into the study all of them reported reduction in attacks, he said.

During the course of the study, a module was developed wherein the epileptic patients were made to do 20 minutes of meditation both in the morning and evening, under supervision.

Besides meditation, the yoga practice included ‘suryanamaskar’, ‘ardhakati’, ‘salabhasana’, ‘shavasana’ and ‘pranayam’, as part of their daily routine.

Dr Rajesh said: “Yoga importantly helps the epileptics on whom medicine does not work and for whom surgery is not suitable. Yoga helps to improve the alpha activity in the brain and reduces the frequency of seizures.” Reportedly, a proposal has been made to his affiliate hospital in Bangalore to conduct randomised control study for epilepsy. Approval is awaited.

Stressing on the advantage of yoga over surgery, he said: “Some epileptic patients have a misconception. They come to the hospital and ask for immediate surgery, to get rid of the disease as soon as possible. We can conduct an operation or surgery only when the exact focus of cause is detected and this happens only in about 20 per cent of the cases.” NIMHANS, Bangalore is also understood to have conducted a similar study funded by the Central Council of Research in Yoga and Naturopathy recently.

Associate Professor of Neurophysiology at NIMHANS T N Satyaprabha, said: “it was found that there was sinificant improvement in the patients and two of them were completely cured.”

luna@epmltd.com

Seizures in horses

No veterinarian wants to see a patient experiencing muscle tremors, difficulty standing or seizures. When that animal can weigh as much as a thousand pounds, it also becomes a safety concern for the patient and the caregivers.

Dr. Butch KuKanich, a veterinary pharmacologist at Kansas State University's College of Veterinary Medicine, is doing research that could make this scenario less of a worry. He and his colleagues are researching the interaction of two drugs commonly administered together to horses after surgery. The drugs are given to relieve pain and to help alleviate the gastrointestinal tract problems to which horses are prone.

KuKanich, an assistant professor of anatomy and physiology at K-State, said the interaction of lidocaine and flunixin has the potential to cause dangerous side effects.

He said his research is important because it's such a common drug combination for horses, in part because the animals can experience side effects with drugs like morphine.

KuKanich said his research is showing that the drugs may not have the same type of potentially dangerous interaction in horses that they do in a test tube.

"This is good news, because we want to continue giving these two drugs together," KuKanich said.
In 2006, KuKanich and other K-State researchers studied the interaction of Xylocaine, a brand name of lidocaine, with Banamine, a brand name for flunixin. The researchers looked at lidocaine's interaction with horse plasma in a test tube.

They saw that the lidocaine latches onto proteins in the plasma. The researchers then looked at how flunixin interacts and saw that it also latches onto the proteins. In doing so, KuKanich said the flunixin knocks some of the lidocaine off the protein. This sends it floating into the plasma, opening up the possibility for lidocaine toxicity.
"Why we worry about lidocaine toxicity is that it can cause problems like muscle tremors, difficulty standing or even seizures," KuKanich said. "If you have a horse that's unable to stand, it becomes dangerous to the people trying to treat it. It also can fall and break a leg."

The results were published in the Journal of Veterinary Pharmacology and Therapeutics with co-authors Dr. Warren Beard, K-State professor of clinical sciences; Sarah Waxman, currently a fourth-year veterinary medicine student, Leawood; and Dr. Melissa Milligan, a 2006 K-State master's degree graduate in clinical sciences.

KuKanich and other K-State researchers are using a grant from the Grayson-Jockey Club to study whether these two drugs behave the same way in healthy horses as they do in a test tube.

The research group includes Beard, Waxman and Dr. Beth Davis, K-State associate professor of clinical sciences.

"You're always trying to minimize the number of animals in research, but at times that may not be the best thing," KuKanich said. "An organism is a lot more complicated than just a part of it in a test tube."

So far, KuKanich said that the heightened levels of toxicity seen in the test tube studies are not showing up in the healthy horses.

He thinks this might be because the lidocaine is moving to another part of the animal's body and binds to muscle, fat or skin tissue.

In the future, KuKanich would like to repeat the study on horses that have gone through surgery, providing a more realistic model.

"We do see changes in physiology when the horses are sick," he said.

Please donate for service dog to help boy with seizures

If you've seen 7-year-old Jack Berry recently, the first thing you probably noticed are his big, brown puppy-dog eyes, and a wide snaggletooth smile that forms deep folds of skin on each side of his mouth.Many in this community are familiar with Jack's story, and many in the Ellerbe community have reached out to his parents, dad Lee and mom Amy, with their condolences in the past. Now his family believes they have found a way that these same folks can do something tangible that will help him and his family.It involves a dog.A very special dog.

Jack began suffering from seizures as a six-month-old that cause him to convulse and turn blue and purple. Despite the family's earnest attempts to find a way to control them, Jack still suffers from these episodes and has multiple seizures at a time.Because of his condition, Jack can't do some of the things that other kids take for granted, like wandering off in the woods with his big brother Coleman, or playing unsupervised in the yard with his little sister, Ava.

However, Amy located an organization called 4 Paws For Ability on the Internet that provides service dogs for people with all sorts of ailments. The family truly believes that this could be the answer to some of those problems and give Jack the chance to be more of a kid and not have to be under such tight supervision all the time.

"This is a way to give him freedom," his father Lee Berry said.It's a way to give his entire family hope, and to give Jack a more normal life for a seven-year-old boy.His family has already suffered through years of frustration and trying different doctors and treatments. However, the Berry family now knows that Jack has a severe form of epilepsy called Drevat Syndrome. His condition went misdiagnosed and unrecognized for years until his mother's Internet research about her son's condition brought this syndrome to her attention, and she was able to ask that her son be tested for it.

Drevat Syndrome is a rare genetic mutation that was named for a French doctor who was the first to identify and describe it."There is no research being done, but we're hoping that there will be some research starting this year or in 2009," Lee said."Only 600 people in the world are known to have it, but more should be coming out as more people find out what it is and are tested for it," Amy said. "Because it's a genetic mutation, it lasts for a lifetime. He has seizures everyday, and that's something he will have to live with."

Lee explained that over the years the family has tried many treatments, including a special diet and a surgically-implanted device that regulates his nerve endings to suppress his seizures, but while they worked with varying degrees of success for a time, none have offered the family the kind of control over Jack's seizures that they need to feel secure.Jack likes to play outside, likes to play fight and pretend he's running his dad's farm equipment.

He is a rough-and-tumble boy, in every sense of the word.Lee and Amy, can't let him get far away from them, though. They always have to be basically within arm's reach because at any moment Jack could begin to bat his eyes and be unsteady on his feet. When he has an episode he drops to the floor with violent seizures that cut off the oxygen to his brain almost instantaneously."Jack takes 100 percent of our attention, except for the four hours a day he's at school" Lee explained.

"He sleeps in the bed with us, in case he has a seizure and doesn't wake up. He has to leave the door open when he uses the bathroom, and can't even take a bath without one of us there every moment because he's had them in the bathtub before."When he begins to have an episode, his parents have to inject him with a syringe that puts him to sleep for seven or eight hours. "Luckily, he hasn't had any brain damage yet, but he has no freedom, he's always being watched," Lee said.

He also explained that the family is fortunate that Jack's seizures usually come early in the morning and later in the day and evening, so he is able to attend a truncated school day."It seems like for some reason they come early, like at 5 o'clock in the morning, and then they start back up around four in the afternoon," he said."We would like to give him more independence, because he's growing and getting older," Amy said.

"So that his parents don't have to be with him every moment, and honestly, it's to help us as well because we have two other kids and it pulls time away from them."Lee summed it up. "It would help give all of us peace of mind.""Some of the dogs can smell the seizures about to happen, so we as caretakers can get him to a safe place so that he won't fall and hurt his head or injure another part of his body," Amy said.

It seems that for Jack, having the dog would mean companionship. "(I want a dog) so I can play with him, with my dog" he said with twinkling eyes, pulling his chin into his chest."He talks about it every day," Lee added, and Amy nodded her head, smiling with one side of her mouth.Because of the great need for service dogs, 4 Paws for Ability will only provide the dog if the money for it is raised through a fundraiser."We can't write an $11,000 check right now and get the dog, the money has to come from fundraising," Lee explained.

Both he and Amy said that they are hoping that local churches and businesses will be willing to help them, as well as individuals."The checks have to be made out to 4 Paws for Ability," Lee said."And in the memo line, write in 'In honor of Jack Berry,'" Amy added."I'm not bragging or anything, but we are well-known in this community," Lee said. "Everywhere we go, people ask us how Jack is, and they ask us if he's still on his special diet. I think people will want to help. It's not like this is some stranger asking you for something."

The family needs to raise $11,000 to get Jack a service dog, and they believe that that is an attainable amount of money.Once the money is raised, Jack and Amy will travel to Ohio, where the service dog provider is located, for two weeks while the dog is trained to attend to his needs and alert at the onset of a seizure.

Donations may be made to: 4 Paws for Ability, 253 Dayton Ave., Xenia, Ohio, 45385.

Father charged with child abuse when infant son was rushed to hospital

Before dawn on Nov. 6, a husband and wife rushed their 3-month-old son to a New Port Richey hospital because he was having seizures.

From there, the infant was flown to All Childrens Hospital in St. Petersburg and is now on a ventilator, with intermittent seizures and does not respond to stimulation.

The father, Richard A. Degolier, a 33-year-old electrician, was arrested Friday for aggravated child abuse. The Pasco County Sheriff's Office says he was the one who hurt his son.

The baby, bruised and scratched, has injuries consistent with abusive head trauma, squeezing and strangulation.

In an interview with police, Degolier denied the accusations and said, on the night his son fell ill, he heard him whimpering on the baby monitor and found him caught in his crib slats. He said he only shook him for "five to 10 seconds" to see if he was okay.

Degolier is being held in the Pasco County jail in lieu of $25,000 bail.

Suffering from seizures doesn't deprive you of having a good life

Did you know what Socrates, Joan of Arc, Alexander the Great, Charles Dickens, Sir Isaac Newton -- apart from being famous characters and good in their career -- had in common? They were afflicted with epilepsy, yet they were highly successful people.

To create awareness and remove misconceptions of this disorder, National Epilepsy Day will be observed on November 17. The society is known to discriminate against epileptics and the stigma attached to the disorder makes it hard for patients to mingle with healthy people. There are myths and assumptions that epilepsy is a mental illness, epileptics can't lead normal lives or epilepsy is incurable.

But the truth is epilepsy is curable and epileptics -- now normal persons after getting treatment -- can enjoy life. Many epileptics are denied employment, admissions to educational institutes and even marriage. The law, however, states that persons suffering from epilepsy can lead a legally married life.

What causes epilepsy?

Epilepsy is a neurological disorder due to sudden burst of abnormal electrical discharges from the brain. Not every person who has a seizure (convulsions) is said to have epilepsy. A ratio of 1:20 has at least one seizure in their lifetime. Fortunately, doctors say only 1 in 200 develop epilepsy. Despite great strides in medical research, a definite cause for epilepsy is yet to be discovered.

In some cases, epilepsy is inherited to 2-4% and a majority of people are unaffected by hereditary factor. Actual seizures and incidence of developing epilepsy is more before one reaches 20 years and after one is 60 years old.

According to vice-president of Indian Epilepsy Association (Bangalore chapter), GT Subhash, anti-epileptic drugs are available and neuro epidemiological studies says seizures can be controlled in 75-80% patients. With the rest 20%, surgical treatment can be considered. "Persons with epilepsy can marry, plus epilepsy and pregnancy can go together in more than 90% patients." In case of employment, epileptics should avoid jobs -- construction works, engineering that involves direct contact with machines, electrical works, etc -- where seizures may result in injury.

Other well-paying and respectable jobs such as desk positions and assembly line tasks are suited for epileptics. How the world copes with epilepsy Globally, there are certain issues that need attention. In the US, UK and Australia, a driving licence is issued to an epileptic if the person has not suffered from seizure for one or two years.

Also, the person can obtain the licence while under medication (anti-epileptic drugs). The Indian Epilepsy Association has petitioned the government to amend the Motor Vehicles Act so that epileptics can obtain driving licences as in other countries. The government is yet to respond to the petition.

November is National Epilepsy Awareness Month

November is National Epilepsy Awareness Month. There are 80,000 South Carolinians and nearly 3 million Americans living with epilepsy, according to the Epilepsy Foundation of South Carolina. For many the biggest problem they face, besides seizures, are negative attitudes about the condition.

Barbara Brothers, Executive Director of the Epilepsy Foundation of South Carolina said, “70 percent of people with epilepsy can be expected to enter remission, defined as 5 or more years seizure free on medication, if they have access to state of the art medical testing, imaging, diagnosis and treatment.”

Brothers said the state has a level 4 comprehensive epilepsy center at the Medical University of South Carolina in Charleston. “This is the highest designation for an epilepsy center. Level 4 Centers provide the most complete range of evaluations and treatments for epilepsy, including complex surgery. Advances in imaging modalities help pinpoint the origin of seizures, making more effective treatment planning and seizure control.”

For more information on epilepsy and resources available in South Carolina go to http://www.epilepsysc.org.

Family of teenager denies history of seizures

A 13-year-old Detroit middle school student has died after collapsing in his eighth-grade classroom. Detroit Public Schools spokesman Steve Wasko says the male student fell from his desk chair about 9 a.m.

Wednesday at Farwell school on the city's east side. Wasko says the classroom teacher immediately called the school nurse who rushed in to find the boy unresponsive.

Paramedics arrived within minutes, but also could not revive him. The boy was pronounced dead at 10:20 a.m. at Children's Hospital of Michigan. His name was not immediately released.

Wasko says the student's family has denied reports that he had a history of seizures.

Epilepsy can look scary

We're talking about a little-known and even less-understood disability known as epilepsy. This week, we want to spend some time describing the more well-known manifestations of epilepsy, the epileptic seizure. Seizures may look frightening, but they're usually not painful. They affect different people in different ways. Epileptic seizures also fall into two main categories: partial and generalized.

Partial seizures start in one part of the brain. The electrical disturbances may then move to other parts of the brain or they may stay in one area until the seizure is over. A person having a partial seizure may lose consciousness. There may be twitching of a finger or several fingers, a hand or arm, a leg or foot. Certain facial muscles might twitch. Speech might become slurred, unclear or unusual during the seizure. The person's vision might be affected temporarily. He or she might feel tingling through-out one side of the body. It all depends on where in the brain the abnormal electrical activity is taking place.

Genera-lized seizures involve electrical disturbances that occur all over the brain at the same time. The person may appear to be daydreaming, may stare off into space or may pass out. The muscles may stiffen and the person might make sudden jerking motions, such as flinging the arms outward, for example. He or she also may suddenly go limp and slump down or fall over.

Most seizures last only a few seconds or minutes. After a seizure is over, the person might feel sleepy or confused for a few minutes, even an hour or more. People who've had seizures may not remember the seizure or what happened immediately before the event. They may also be alert and ready to resume whatever they were doing before the seizure happened. As one can see, epileptic seizures also vary from person to person.

Certain things can sometimes trigger seizures in people with epilepsy. They include:
Flashing or bright lights.

A lack of sleep.

Various levels of stress.

Overstimulation (like staring at a computer screen or playing video games for too long).

High fevers.

Certain medications.

Hyperventilation (breathing too fast or too deeply).

Doctors who specialize in the brain and nervous system are called neurologists. If you think you might have had a seizure, it's important to tell your doctor about it. He or she will likely refer you to a neurologist who will check for epilepsy or other conditions.

In addition to doing a physical examination, the neurologist will ask you about any concerns and symptoms you have, your past health, your family's health, any medications you're taking, any allergies you may have, and other issues, as well. This is your medical history, and it's important to give the most accurate description possible of the seizure (or seizures) you may have experienced. Because people who've had seizures may not remember anything about them, it's a good idea to get a detailed description from someone who actually witnessed the seizure and, better yet, to write down what they saw after the seizure is over.

The neurologist will most likely perform other medical tests, such as an electroencephalogram, or EEG, to measure the electrical activity in the person's brain. Scans of the brain, such as a computerized tomography, or CT scan, and a magnetic resonance imaging, or MRI, may also be done. All these tests are painless.

If the neurologist determines that a person has epilepsy, he or she will recommend an appropriate type of treatment. Treatment for epilepsy usually involves medication, but sometimes other treatments may be recommended, too. The goal of treatment is to control seizures so a person can live as normally as possible. In some cases, doctors can even implant a device called a vagus nerve stimulator. This device sends signals through the vagus nerve in the neck to control seizures.
The doctor also may recommend a cacogenic diet, which is a special diet that might help people with epilepsy who don't respond well to medication alone. Sometimes doctors can help by performing surgery directly on the brain tissue when the condition can't be controlled using other treatments.

Next week, we'll discuss how people with epilepsy can best cope awith this disabling neurological condition.

Paul Rendine is chairman of the Disabled Advocates of Delmarva Inc. group. Call him at 410-860-1137 or send e-mail to paulrendine@ comcast.net.

Children stricken with seizures

Last year on a typical Saturday morning my husband found our 2½-year-old son on the floor, unconscious. After thinking he could be dead, an ambulance rushed him to the emergency room. This is how our difficult struggle with epilepsy began.

Unfortunately, this is a common scenario for many parents. Epilepsy has little warning. Suddenly a perfectly healthy child is stricken with seizures.Before you assume that epilepsy has not touched your life please consider this:As many as 1 in 100 people have a form of epilepsy. Epilepsy effects all ages, races and countries equally.

Epilepsy can be caused by strokes, brain trauma, brain tumors or scarring, and infections like meningitis or encephalitis. But more often there will be no clear cause or reason for the patient to be afflicted. Often a person with epilepsy can suffer from one or more types of seizures.They can range from a "Grand Mal" type event to brief moments of "blanking out." Other seizures involve quick muscle jerks and uncontrollable behaviors or tics. In most cases, epilepsy can be controlled with appropriate medications.

Despite advances in medicine, the old stigma of epilepsy still exists. Let's change the face of epilepsy. This is the face of a bright, happy child who struggles every day to overcome a disease that can rob them of their basic ability to learn and thrive. This is the face of an adult who deserves respect and compassion at their most vulnerable moments.

Please visit epilepsyfoundation.org for more information and support.

Thelma McGowan
Lake Stevens

Infant from Ireland receives medical care for seizures, in Chicago

A year after a woman from Northern Ireland came to Chicago to get medical treatment for her young son battling severe epilepsy, an Irish couple whose infant daughter suffers from the disease is also seeking help at Children's Memorial Hospital.

The parents of 13-month-old Katie Maguire were told by health-care providers in Ireland that she probably would die of her nearly constant seizures, said Gary McCann, Katie's father. Katie was born prematurely and has cerebral palsy, McCann said."They were treating the epilepsy with drugs on the hope that something would work," McCann said. "We wanted to find somewhere that could save her life."

Dissatisfied, McCann and Katie's mother, Mekila Maguire, researched other options on the Internet. They came across Children's Memorial Hospital and another family, Charlotte and Billy Caldwell, who had been through similar circumstances.About a year ago, Charlotte Caldwell brought her son, Billy, now 3, to Children's Memorial Hospital to treat the seizures he had suffered since he was 4 months old. Like McCann and Maguire, Caldwell said doctors in Northern Ireland had told her that Billy would die so she sought other options.

Strangers from all over Ireland who were touched by her plight helped raise nearly $300,000 to allow her and Billy get to Chicago and pay for treatment.Since then, Billy has improved dramatically, Caldwell said Wednesday. He is nearly standing on his own and has become very "boisterous" like a typical toddler."Billy and Katie were both sent home to die and given no hope," Caldwell said.

Both families live in Glenview. McCann and Maguire were touched by the kindness of strangers, who sent them about $400,000 to make their move to the U.S. and get treatment for Katie. McCann said they already have seen a remarkable improvement in Katie.

She is expected to undergo a brain scan Tuesday at Children's Memorial Hospital that, along with other tests, could determine whether she would be a candidate for surgery that would remove a part of her brain responsible for the seizures, said Dr. Douglas Nordli, director of the hospital's Epilepsy Center.

McCann is hopeful, but said the fund making Katie's care possible is dwindling.

For more information, visit www.keepbabykatieawake.com.cflynn@tribune.com

Service dogs can provide freedom to people living with seizures

Ben, who's 15 months old, can already do a lot of things. He can turn on a light or open a door. He can pick up a remote control off the floor. He can pull a heavy object with his teeth.

Colise Johnson, 42, spent two weeks in September at a canine training camp getting acquainted with Ben.

But Ben, a gangly golden retriever, is more than a family pet. He is a specially trained seizure dog who may one day be able to save the life of his new owner, Colise Johnson.

"Having epilepsy and cerebral palsy is kind of like having a nonstop roller coaster ride," said Johnson, 42, of Portland, Oregon. "You never know what's going to happen, but with him, he slows the ride down so it's manageable."

Johnson, who uses a wheelchair and must wear a helmet because of persistent seizures, is among 3 million Americans who live with some form of epilepsy, a brain disorder that causes recurring seizures, violent muscle spasms or, sometimes, a loss of consciousness.

There are no estimates of how many patients are paired up with assistance dogs, and the benefits of having such an animal have not been studied to any great extent. But Dr. Gregory Barkley, a neurologist at Henry Ford Hospital in Detroit, Michigan, and an adviser for the Epilepsy Foundation of America, believes nearly a quarter of the people who suffer from frequent, severe seizures might be helped by a canine companion. He said the dogs have "an unqualified devotion to their master" that may offer important mental health benefits.

The dogs are sometimes credited with powers they really don't possess, Barkley said. "The dog does not predict a seizure," he said. "It may respond to the earlier stages of a seizure."
Johnson owned a seizure dog for 12 years before he died in 2007, ironically, having his own seizure.

She recalled that the dog, named McKeever, "told me ahead of time when I was going to have a seizure. ... He helped me get off the floor if I fell, helped me retrieve items, helped me get clothes out of the drawer for a bath, open the fridge on command and took out the recycling."

She said she'd felt lost without McKeever since his death, but that recently changed.

Johnson spent two weeks in September at a training camp at Canine Assistants in Alpharetta, Georgia, getting acquainted with Ben. This year, Johnson was one of 1,100 people on the agency's waiting list.

Jennifer Arnold founded the nonprofit service in 1991 and has placed more than 1,000 dogs with adults and children with physical disabilities or other special needs.

"We work primarily with people who have mobility issues and have conditions like muscular dystrophy, multiple sclerosis, cerebral palsy and brain injuries," Arnold said.

In the past few years, Arnold also helped train 100 seizure dogs to assist people with epilepsy.
"We train them to do basically 90 different commands," Arnold said. "They learn to do things like go for help and press buttons to alert 9-1-1."

Over time, nearly all the dogs eventually develop the ability to identify the onset of a seizure, she said.

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"We have no understanding of what it is that alerts the dogs that a seizure is oncoming," she said. "Is it a smell that the body produces? We don't know to what stimuli the dog is responding."

By spending time with epilepsy patients, Arnold's dogs are taught what a seizure looks like and not to be frightened.

Some dogs are able to anticipate a seizure 20 to 40 minutes before it happens.

"If the dog feels that their person is going to have a seizure, they tend to get very restless and distressed. ... They show signs of stress and agitation," Arnold said. "Provided their human can read what that means, you have a really good alert system going on there."

Barkley has heard similar anecdotal information from his own epilepsy patients, but many of those dogs were simply family pets and were untrained, he said.

He warned patients to be wary of agencies that charge a lot of money for a dog that may or may not be able to perform certain tasks.

Canine Assistants offers its dogs free of charge to qualified patients. The group not only covers the cost of airfare and lodging during the training sessions, but it provides a lifetime of food and veterinary care at no cost.

Arnold estimated the total value at $20,000 per dog. She said that a third of her company's operating costs are underwritten by large corporate grants. The rest of the money is raised through private donations.

Arnold helped train some of the 140 dogs currently at the facility. She said she has no trouble letting the animals go to new homes because she knows they'll serve an important purpose, especially for the epilepsy patients.

"They become a prisoner," Arnold said. "They don't want to leave the house ... they're so vulnerable. Just having this dog with you means that you're not ever alone."

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Johnson, the married mother of a 15-year-old, is looking forward to regaining some independence with a new dog in the house. "He's going to be able to give my family a break. He's going to be able to let them rest a little bit easier," she said.

She also looked forward to a new reason to get out of bed in the morning. "With the dog, instead of getting all bummed out or getting depressed over the seizures, I'll spend time with him and play with him and start laughing."

"These dogs will change your life in such a way you won't know how you've lived without him once you've had them."

Man stricken with seizures and more...lives his dream!

Tommy Williams pushed aside an Auburn University umbrella before he lifted the wheelchair of his friend, James “Sam” Colburn, out of the trunk of his car.

Staff photo Dan Lopez Greensboro residents James “Sam” Colburn, right, and his friend Tommy Williams leave Bryant-Denny Stadium on Saturday after the Alabama-Mississippi game. It was Colburn’s first UA game.

“You know [Williams has] gotta have a special place in his heart for Sam to take him to an Alabama game,” said Arthur Thomas, 63, while pointing to the Auburn fan’s umbrella as a chuckle escaped from his lips.

Williams, 60, snickered and walked around to his car’s passenger side to help Colburn get into the wheelchair.

The group had just arrived in Tuscaloosa at about 11 a.m. Saturday after making the one-hour trek from Greensboro.

They had come to town for the reason that most people come to Tuscaloosa on fall Saturdays — University of Alabama Crimson Tide football.

But this trip wasn’t just another game-day trip.

It was Colburn’s first time ever to see the Tide play live. It was a milestone he’s waited for since 1962 when he first decided to roll with the Tide.

“I’m excited about being here for the first time,” said Colburn, 61. “I’ve been an Alabama fan for a long time. I just like how they hold themselves and play.”

Thomas, Colburn’s brother-in-law, said that when Sam was born, he weighed 2 pounds and was diagnosed with rubella, also known as German measles.

The infection caused Colburn’s immune system to weaken, and he contracted paralytic polio. The virus enters the bloodstream and attacks the nerves governing muscles in limbs and the muscles necessary for breathing. The virus makes breathing difficult and can paralyze a person’s arms and legs.

“Besides the polio, at the age of 5, Sam started having what’s called grand mal seizures,” Thomas said. Grand mal seizures cause a person to lose consciousness and have violent muscle contractions, according to the Mayo Clinic.

“He had to avoid coming out in crowds because any sudden sight, like a bird flying by, or a sudden sound, like a clap, would cause him to drop to the ground, black out and have a seizure,” Thomas said.

The grand mal seizures, along with the paralytic polio that affects the entire right side of Colburn’s body, made it unlikely that he could ever attend an Alabama football game in person.

Fate intervened in 1990.

“Sam’s mom died in 1989 and he moved in with us,” Thomas said. “The next year my wife,
Jo Ann, found a doctor in Tuscaloosa that found a way to stop Sam’s seizures.”

With his seizures under control, Colburn’s dream of going to an Alabama game finally seemed attainable.

But Colburn’s plans were set back when he found out he had to have surgery to replace both knees.

He recovered from the surgery, but then, because the polio had made the muscles in his legs weak, the bones in his legs became brittle and broke.

Colburn had to use a wheelchair.

“After his legs broke in 2003, Sam told us he wanted to be put in a nursing home at Colonial Haven Care & Rehabilitation Center in Greensboro,” Thomas said. “We did what he asked, and he’s been a blessing to everyone there since.”

Colburn settled into his new lifestyle by cheering up the other nursing home residents and taking on responsibilities, such as being the public spokesman for the residents.

But Colburn began to feel that his dream of watching a live
Alabama game was slipping away.

“I don’t think he ever thought he would be able to go to a ballgame,” said Jo Ann Thomas, Colburn’s sister.

Perhaps it was divine intervention or just a coincidence, but Colburn met an old friend in the nursing home who restored hope in attaining his dream.

“My mother was in the nursing home where Sam is,” said Williams, who went to high school with Colburn. “In fact, Sam is in the room next to her. I saw that his room had a lot of Alabama stuff in it and was crimson and white, so I used to go over there and fuss with him about football after visiting my mom.

“So one day, about a year ago, I asked him if he had ever been to an Alabama game and he said, ‘No,’ ” Williams said. “I promised him then that if we both were still in good health, one day I’d take him.”

About a month ago, Williams made good on his promise and secured tickets for the Alabama-Ole Miss game.

But Colburn recently had surgery to remove a kidney stone.

“I thought his surgery would throw a monkey wrench into our plans, so I asked Sam if he was going to be able to still go,” Williams said. “He said to me, ‘There’s no way I’m not going to go.’ ”

Williams said he wanted to take Colburn to an Alabama game because Colburn is a good guy who kept an eye on Williams’ mother.

“He’d check in on her when I couldn’t be there to visit and let me know if she was doing good or having a rough week,” Williams said. “Sam’s a nice guy. I’ve never not seen a smile on his face.”
Colburn said he’s thankful for what Williams has done for him. It’s been a dream come true for him.
“I sure appreciate him,” Colburn said. “I tell him that every time I see him.”

Colburn said he’s now just waiting for the Alabama-Auburn game so he can brag to Williams about how bad the Tide will beat the Tigers.

“Tommy’s tried to get me to switch over to Auburn, but I told him today that I have an extra Alabama hat he can wear at the game,” Colburn said, laughing.

Reach Jamon Smith at jamon.smith@tuscaloosanews.com or 205-722-0204.

Safety Tips for people living with Epilepsy

People with epilepsy are prone to injury in the event of a sudden seizure. The University of California San Francisco Medical Center offers these suggestions to help reduce your risk of injury:

Health Tips

* Always wear or carry something that identifies you as having epilepsy — a bracelet, necklace or ID card.

* Make sure that your friends, family and co-workers know what to do.

* If you’ve been having seizures, avoid situations that could be dangerous, such as working in high places or swimming by yourself.

* Understand and follow state rules and laws about driving with epilepsy.

* Never stop taking your epilepsy medication or change your dose without talking to your doctor.

* In addition to your seizure medicine, never take any other medication without talking to your doctor or pharmacist.