Rare congenital disorder may cause seizures!

Lanti Carlson says his battle against Sturge-Weber syndrome has made him a tougher person.Lanti Carlson of Kila not only understands the Sturge-Weber Foundation’s motto — “the stronger the wind, the tougher the trees”— he lived it.

Born with Sturge-Weber syndrome’s port wine stain on his face, Carlson said he got ejected from several schools for fighting before the second grade. He remembers the pain of childish taunts.“Kids called me cherry-pie face,” he said. “It’s definitely made me a stronger person — because of my strong parents.”

Carlson finally found an academic home at Muldown Elementary School. By the time he reached the fourth grade, the teasing and harassment stopped, thanks to work by the principal and staff.But insensitivity hasn’t just been confined to children. Carlson said adults stare for prolonged periods.“My mom and I would embarrass people right and left,” he recalled with a laugh.

“I’d say don’t get too close, you’ll catch it.”Carlson, now 38, credits his mom’s support with helping him adjust to living with Sturge-Weber syndrome, a rare congenital disorder that may cause seizures, cognitive losses and even death, along with the port-wine-stain birthmark.Even though he lost vision in one eye, Carlson considers himself lucky because he suffered no mental delay or other dire consequences.“The eye was really the only problem I ever had — I grew out of the seizures,” he said.

“There are just so many who weren’t that lucky.”Carlson keeps abreast of others with the syndrome as well as ongoing research via the Sturge-Weber Foundation and its founder, Karen Ball.“My mother got in touch with Karen back in 1987,” Carlson said with a smile at Ball.Ball came with Carlson to the interview to help raise awareness of the syndrome, which afflicts her 22-year-old daughter Kaelin.

Ball was in the Flathead visiting her parents, Bev and Stan Fisher of Bigfork, while reaching out to other families coping with Sturge-Weber.As chief executive officer of the foundation, she develops resources for support and treatment of the syndrome and raises money for research for a cure.“I started the foundation when my daughter was 3 years old,” she said. “That was before the Internet and there was nothing.”She and Carlson urge people to accept differences in how people look and teach their children to do the same.

They also hope to motivate people to donate to the Sturge-Weber Foundation, which makes grants for medical research and provides support to people with the syndrome.“Our most-requested item is a card that tells about the syndrome,” she said. “If you have a day you don’t want to talk, you can just hand people the card.”She recalled many incidents when, as a young mother, people asked for an explanation of Kaelin’s prominent port wine stain. Some days she didn’t mind, but other days, the stress of coping with the syndrome tested her patience.

Kaelin Ball had three surgeries for glaucoma in her first three months of life. Karen Ball still recalls the impact of hearing from doctors that she should expect Kaelin to have seizures and perhaps serious cognitive challenges.“It was really devastating,” she said. “Sure enough, at one year, she started having seizures.”Carlson said his seizures also started at 12 months. At the time, his mother had no idea that the port wine stain that included his left eye was anything more than a cosmetic concern.

“Then at 1 year old, I suddenly slipped under the table,” he said.Growing up, Carlson and Kaelin suffered from indiscreet stares but neither have mental delays. Ball said children who begin having seizures earlier, at six months, have a less favorable outcome.According to foundation information, three in every 1,000 children are born with a port wine stain referred to as the most common vascular malformation. Of these, only 8 to 16 percent have Sturge-Weber syndrome.“It has a genetic basis but it’s not necessarily hereditary,” Ball said.

“It happens during the eight- to 10-week gestation period.”She foresees a cure just over the horizon with continued support for research. So far, the foundation has awarded about $750,000 in seed grants of $60,000 to $90,000 for research to spawn larger investments through the National Institutes of Health.Treatments under investigation include cancer drugs that attack angiogenesis, the unchecked proliferation of blood vessels at the root of the syndrome’s destructive results, such as the loss of Carlson’s sight at age 18.

“In my case, the extra blood made the eye wall grow thick,” he said.Several operations failed to restore his vision. Carlson said he only realized he was completely blind in his left eye when he walked into a wall at Whitefish High School.He also has had 25 laser treatments, which lightened but did not eliminate his port wine stain.“My goal was to eliminate blood blisters, which it did,” he said.Without treatment, the vessels causing the stain may grow and become raised, causing puckering of the skin that may interfere with seeing, breathing and eating.

Ball said her daughter has lip problems from that process.Both Carlson and Ball have spent thousands of dollars out of pocket for expenses related to travel as well as co-pays for treatments. The foundation, including a Kaelin Ball Scholarship, has helped other Montanans go to specialists.“We have 11 centers of excellence,” Ball said. “An example is Denver’s Children’s Hospital.”Neither Ball’s daughter nor Carlson have let their struggles with Sturge-Weber hold them back from pursuing their dreams.

Although Kaelin has a birthmark over two-thirds of her face and glaucoma in both eyes, she has achieved a 3.5 GPA at York College in Pennsylvania.Carlson wrestled competitively in high school, won a college scholarship and recently returned to the Flathead where he works at Plum Creek. Along the way, he also earned a pilot’s license, learned to scuba dive, was married and now has a family.The Sturge-Weber Foundation has also thrived.“We started with 40 families and now have about 4,000 worldwide,” Ball said.

Along with helping people with Sturge-Weber, the foundation assists patients with port wine stains and Klippell-Trenaunay syndrome, another vascular disorder with a port wine stain and dire consequences, such as atrophy of a limb.Ball encourages people to donate what they can, adding that as little as $5 helps to mail out information and to keep the Web site current to help families cope.“Not every parent is as strong as Karen or mine,” Carlson said with a smile.

“They can go to the Web site and get empowerment.”For more information, visit www.sturge-weber.org or call 1-800-627-5482.

Warning! Diet supplements can cause seizures!

Health Canada is warning consumers not to use bodybuilder dietary supplements called 6-OXO and 1-AD because they can trigger seizures and blood clots in the brain that can lead to lasting disability.

The department is also warning people not to use other supplements containing the ingredients found in 6-OXO and 1-AD, chemicals known as 4-androstene-3,6,17-trione and 1-androstenediol.
Both 6-OXO and 1-AD are manufactured by ErgoPharm-Proviant Technologies in Champaign, Ill., and are promoted for bodybuilding.

Health Canada says it has received one report of a serious adverse event linked to use of the supplements in this country.

A man who had no known medical conditions developed seizures and blood clots in his brain after using the supplements, which he had bought in the United States.

The product 6-OXO is an unauthorized natural health product in Canada, while 1-AD contains an anabolic steroid that is regulated as a controlled substance in Canada.

That means it can only be dispensed by prescription and used under the supervision of a health professional.

Neither is authorized for sale in Canada, but Canadians can buy them over the Internet or while travelling abroad.

Anyone using either supplement, or others containing the same ingredients, should stop taking the products immediately and consult with a health care professional if they have concerns, Health Canada says, adding it is taking action to block further importation of the products.

Boy who suffers from seizures and Autism has service dog refused by school

Clint Schroeder, like many kids, loves spending time outdoors, but a disability sets him apart.
Clint suffers from epileptic seizures and autism. Three years ago his doctor suggested he get a service dog.

His Lab, Chalet, is trained as a medic alert dog to give Clint warning when he’s about to have a seizure.

Clint’s mom, Sherry, says the Goddard School District Clint attends was supportive at first. But Sherry says once Clint got the dog, everything changed.

"It was all of the sudden a problem,” Sherry said.

According to Sherry, the school told her the Para that worked with Clint was allergic to dogs and that the teacher didn’t support a dog in her classroom.

"They told us we the parents had to provide a certified adult to attend school with him every day,” Sherry said.

Sherry hired an attorney and for the past two years she and the school have been trying to reach a compromise.

"We were hit with now we need scientific documents that she can detect seizures that she can calm him when he's having an outburst,” Sherry said. “It was never ending."

The next option for Clint’s family was filing a federal lawsuit. But that would cost an additional $15,000 to $20,000 and would likely take at least three years to get through the court system. By that time, Clint would be out of the Clark Davidson School.

"The school districts have a lot more money than the average parent has,” Sherry said. “They have deeper pockets they can keep this going, which is what they've done for two years."

Instead, they are selling their home to move to another school district. It was a tough decision for Sherry as her father designed her home --- her dream home.

"It's heartbreaking to have to move, but why stay here and fight for something we don't have to fight for there?” she said.

The Goddard School District says it cannot discuss the matter because it involves a confidential student issue.

Gifted dog can predict seizures

If you are a dog owner, most likely there's a special place in your heart for your furry friend. If you're not, you can't deny they're, usually, pretty cute. But what if you knew that your dog could save your life?

That's exactly what Rogue has the potential to do for Shannon Vande Krol every day. Shannon works at Banner Gateway in Gilbert, 3 days a week, 12 hours a day. Everyday she brings her dog Rogue. Let's go back a bit, about 6 years ago Vande Krol started having seizures, not grand mal's but smaller, "I just look like I'm asleep," she says. It was about that time she adopted a dog and got pregnant. The pregnancy seemed to spur on the seizure's to a point that she was having about 6 a day! Shannon couldn't even leave her house.

During this time she started to notice Rogue, acting weird. Every time she would begin to have a small headache her dog would bark at her. "Then the third time, I said, I was like, that's kind of strange," so she started to pay close attention to her dog's reaction which seemed to be in line with her health situations. Not only did Rogue bark, but depending upon the severity would do other things, as if to warn Shannon. Rogue's ears would stand up, her tail between her legs, she would trip her, even walk back and forth to Shannon's bed over and over again.

And then, after Shannon had a seizure, Rogue would be laying right next to her when she woke up. It became clear to Shannon that her dog was warning and protecting her. Rogue knew she was going to be in trouble even before Shannon did. She would do this 15 to 45 minutes ahead of the danger so that she could seek safety.

How does Rogue do this? That's a question even scientists don't have an answer for right now. They wonder if it has something to do with a person's smell, "electrical" outputs or even a small change in body movements before an onset of seizure comes on. So it's not a question of if, but why, they're trying to answer.

Today, Shannon's seizures are less severe. In fact, she only has about one a month, but the danger is still there. So Rogue goes everywhere with Shannon. She has special permission, under the American with Disabilities Act, any service dog trained to provide assistance, regardless whether they are licensed or certified by government can perform that service. Rogue has no special training, just has a innate ability that's undeniably helpful.

So every other day or so.... the folks at Banner Gateway get to have a friend on four legs join them and they love it. Yes, Rogue helps Shannon, but maybe she's doing more than that... you can see on the face of a person who looks at a dog in an unexpected place, like in a hospital "the dogs presence alone here does something special for the rest of the staff," says Art Gallardo, Shannon's boss. And when you watch them work you see it.

Shannon brings a type of blanket, almost a security blanket, everyday when Rogue does to work with her.... she lays it down so she can get stuff done while her friend takes a break on a familiar spot. But Rogue finds security in much more than that piece of cloth, she finds it in the woman she loves and protects everyday. And Shannon gets it right back.

Research on marine drugs find some may cause seizures!

Scientists, reporting in the current issue of the online journal Marine Drugs, state that an increase of epileptic seizures and behavioral abnormalities in California sea lions can result from low-dose exposure to domoic acid as a fetus. The findings follow an analysis earlier this year led by Frances Gulland of the California Marine Mammal Center that showed this brain disturbance to be a newly recognized chronic disease.

John Ramsdell of NOAA's Center for Environmental Health and Biomolecular Research in Charleston, SC, in partnership with Tanja Zabka, a veterinary pathologist at the Marine Mammal Center, conducted the first-of-its kind analysis of poisoning by the algal toxin, domoic acid, during fetal brain development. The results, analyzed across multiple animal species, point to the toxin as a cause for behavioral changes and epilepsy that does not become evident until later in life.

Domoic acid is produced by harmful algal blooms. The algae is consumed by fish such as sardines, herring and anchovies, a significant part of the sea lion diet. Exposure during pregnancy concentrates the domoic acid toxin in the mother's amniotic fluid, which normally protects and aids in the growth of a fetus. In sea lions exposed to domoic acid, the fluid retains the toxin, thus subjecting the fetus to repeated direct absorption through immature skin cells and swallowing during gestation.

The results, demonstrated experimentally in laboratory animals and projected to occur in fetal sea lions, is abnormal development of brain neurons which does not impact the animal until it enters later life stages. This phenomenon, known as "fetal basis to adult disease," is expressed through seizures and abnormal behavioral changes.

"This represents a significant break through in understanding the origins of this behavior and will help us better understand the long-term consequences of exposure to harmful algal blooms during pregnancy," notes Ramsdell.

Algal blooms have been increasing in the sea lions' habitat, resulting in more cases of acute poisoning and increased concern over the long-term effects of algal toxins.

Scientists in NOAA's Oceans and Human Health Initiative are studying the impact of harmful algal blooms on marine mammals to determine if similar impacts could affect humans exposed to the similar harmful toxins.

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The National Oceanic and Atmospheric Administration, an agency of the U.S. Commerce Department, is dedicated to enhancing economic security and national safety through the prediction and research of weather and climate-related events and information service delivery for transportation, and by providing environmental stewardship of our nation's coastal and marine resources. Through the emerging Global Earth Observation System of Systems (GEOSS), NOAA is working with its federal partners, more than 70 countries and the European Commission to develop a global monitoring network that is as integrated as the planet it observes, predicts and protects.

On the Web: NOAA: http://www.noaa.gov Marine Drugs Journal: http://www.mdpi.org/marinedrugs

Epilepsy is the heart of a theatrical play!

At age 3, Alicia Fournier was diagnosed with epilepsy. At age 6, she auditioned for, and won, her first role on stage.

Now 9, the Scarborough girl lives with daily seizures that rob her of huge blocks of time from her memory. She spends her school days at Wentworth Intermediate in classrooms close to the nurse’s office, and, because of the seizures, she struggles to keep up academically with her peers.
But epilepsy hasn’t slowed Alicia’s performing career. And, thanks to frequent visits to Children’s Hospital in Boston, she’s developed a concern for others that is far beyond her years.

On June 21, Alicia will take her first steps in her public anti-epilepsy battle, starring in a two-hour Broadway revue, “Alicia and Friends,” in South Portland, to raise money for the Epilepsy Foundation.

“I tell (my daughters), ‘You have a good life and therefore you should do what you can to help others,’” explained Alicia’s mother, Julie Fournier.

Alicia is more aware of that than most 9-year-olds because of her visits to Children’s Hospital, Fournier said.

“That’s when you realize how good you have it,” she said. “You see kids who aren’t going to go home.”

Alicia has participated in several other fundraisers in the past, but this is her family’s first effort focusing exclusively on epilepsy. And it’s a family affair – all of the performers, adults and children, are people who know and have worked with Alicia, including her uncle, Mark Barrasso, an actor and one of Alicia’s biggest admirers.

“For her to be at such a young age and to have the control and ability that she has is amazing,” Barrasso said in a recent interview. “She doesn’t use (epilepsy) as a crutch. If anything, she uses it as an inspiration. She inspires other people.”

He describes the performers in "Alicia and Friends" – six children and a number of adults – as “the upper echelon of talent in the Portland area.”

“I’m very excited about it. I’m getting to perform with a lot of peers and a lot of talented people young and old,” he said. “I am so happy to be doing it because it’s my niece, but I’m happy to be seeing the cause get some attention.”

One fundraiser won’t cure Alicia’s epilepsy, but she and her mother hope it could bring scientists closer to a cure.

Epilepsy has woven itself into the fabric of the Fournier family’s life since the day six years ago when Julie brought her seemingly normal 3-year-old daughter to Children’s Hospital to explore some puzzling behaviors: Alicia had begun “falling down all the time” and her parents had noticed her head bobbing and her eyes darting. Fournier expected to stay in Boston a day or so for some tests.

But as soon as she was hooked up to the monitors, Alicia went into a state of “almost constant seizure activity” that lasted 10 days. She began vomiting severely and when medication was introduced to bring her symptoms under control, she lost all motor skills.

“She was a giant infant,” her mother recalls. “It was devastating.”

A self-described problem-solver, Fournier and her husband Brian, a tugboat captain, had a healthy 11-year-old daughter Jacqueline – now a senior at Scarborough High School – and knew very little about epilepsy. Julie recalls having difficulty accepting the idea that doctors didn’t really know what caused Alicia’s seizures, or what her prognosis was.

After 10 days in Children’s Hospital, Alicia stopped seizing and regained her motor skills, and doctors were able to keep her epilepsy under control for about two years. When she was 5, the seizures started again. They’ve continued, on a daily basis, ever since.

“She has seizure ever single day,” Fournier says. “It’s just part of life for us.”

Alicia had had a seizure earlier in the day she was interviewed, landing her in the nurse’s office, but she seemed quite recovered as she danced, hummed, twirled and talked about her plans of becoming “an actress and a marine biologist.”

But few minutes later, with the nonchalance of a weather commentator, she announced, “Mom, I’m having a seizure.”

Like the majority of Alicia’s seizures, this one was barely perceptible, a far cry from the Grand Mal seizure many people envision when they think of epilepsy. During her seizures, Alicia loses track of time and sometimes of her surroundings. Her eyes may dart around, or she may seem to stare. At the end of the seizure, she may have a headache or lapse into sleep.

But the seizures are a constant challenge to Alicia because of the time she loses – time when other children are learning things, interacting with other people, growing. Even if the seizure activity lasts only a few minutes, it can be intensely disorienting. After a seizure, Alicia and her mother will trace back the events leading up to the seizure until Alicia remembers where she “left off.”

“Sometimes we have to go back pretty far,” Fournier says. “She misses all these chunks of the day.”

Her peers have teased Alicia on occasion – though not since Julie and Alicia explained epilepsy to them – but the biggest challenge for Alicia is keeping up academically when large chunks of her days are missing.

“She learns so much slower than all of her peers,” Fournier said. “The older she gets, the only place she doesn’t struggle is onstage.”

Actually, Alicia takes to the stage like a fish to water. Since playing Molly in "Annie" at age 6, she’s been in a handful of Portland-area plays, and she will play young Cosette this summer in the Maine State Music Theater's production of "Les Miserables."

She now takes weekly singing lessons, giving her a technique far beyond her years. And she’s growing ever-more the natural drama queen, packing wistfulness, passion, drama, jealousy and longing into even her living room rendition of Ariel’s “Part of Your World” from "The Little Mermaid."
And she claims she’s better on stage.

“I want everybody to come!” she said, grinning, her arms spread wide. "... (I want people to know) about epilepsy, and that it's okay to have seizures and to raise lots of money to help!"

If you go: "Alicia & Friends: A Musical Benefit for the Epilepsy Foundation"Saturday, June 21, at 7 p.m.The Portland Players420 Cottage RoadSouth PortlandTickets: $50 (includes champagne reception and raffle for items including Red Sox tickets, a Portland Sea Dogs luxury box, a spa package and Anthony's Dinner Theatre tickets).885-1307 or jfourni2@maine.rr.com

A CLOSER LOOK

The cast:Director: Michael DonovanChild performers: Alicia Fournier, Amanda Doughty, Rachel Friedman, Alina Grimshaw, Shannon and Colleen Howard.Adult performers: Mark and Anthony Barrasso, Fran Page, Thomas Smallwood, Brian McAloon, Jenn Miller, Becky Rinaldi, Kelsey Franklin,and Jamie Lupien.Music Director: Denise Calkins.

Based in Westbrook, Reporter Meggan Clark can be reached at 207-854-2577 or by e-mail at mclark@keepmecurrent.com.

A brain pathway that stops seizures?

A brain pathway that stops seizures has been found by Iowa researchers.

Applying modern genetics and molecular biology to clinical observations made more than 80 years ago, a team from the University of Iowa and the Veterans Affairs Iowa City Health Care System found that increased acid (pH) activates an ion channel in the brain that shuts down seizure activity. The findings were expected to be published online June 8 in Nature Neuroscience.

"Although this work provides insight into how seizures normally stop and might help us learn more about how to terminate those seizures that don't stop, it will take more work to turn the finding into a new therapeutic approach," senior study author Dr. John Wemmie, an assistant professor of psychiatry in the University of Iowa's Roy J. and Lucille A. Carver College of Medicine, said in a prepared statement. "We will be working with colleagues in neurology and neurosurgery to try and translate the findings to treatments."

Clinical experiments from the first half of the 20th century show breathing carbon dioxide, which creates more acid in brain tissue, helps stop epileptic seizures while the seizures themselves lower brain pH. The modern discovery of an acid-activated ion channel (ASIC1a) in the brain helped the team piece the puzzle together.

"We found that ASIC1a does not seem to play a role in how a seizure starts, but as the seizure continues, and the pH is reduced, ASIC1a appears to play a role in stopping additional seizure activity," study co-lead author Adam Ziemann, a student in the Medical Scientist Training Program at the university, said in a prepared statement.

Researchers found that seizures are more severe and longer in mice lacking the ASIC1a gene than those with the gene. Also, chemically blocking ASIC1a causes the seizures to be longer and more severe in mice with the gene, while increasing ASIC1a in mice protects them from severe seizures.

"One of the most exciting aspects of the work is that it highlights the potent anti-epileptic effects of acid in the brain -- effects that have been recognized for nearly 100 years but until recently have been poorly understood -- and it identifies ASIC1a as a key player in mediating the anti-epileptic effect of low pH," Ziemann said.

Seizures occur when brain neurons work out of synch, causing physical spasms or convulsions and even disrupting vital functions, such as breathing. Most seizures stop by themselves, but if they don't, a life-threatening condition called status epilepticus that claims a mortality rate of up to 20 percent could occur.

It is thought that 2 percent to 4 percent of people will have a seizure at some time. People who have epilepsy experience repeated seizure activity.

More information

The U.S. National Library of Medicine has more about seizures.

Special oil enriched diet reduced boy's seizures!

A DAILY diet of cream, fried eggs, and breakfast cereal dripping in oil would have most parents running for the fruit bowl, but for Leah Eminovski it has been a lifesaver.

Her son Arrian, 4, was having constant seizures after developing a debilitating form of epilepsy at the age of three. He wore a bicycle helmet to protect his head and could never be left unsupervised, losing his personality, staring into space and drooling.

But within a month of being put on the high-fat, low-carbohydrate regime, known as the ketogenic diet, his seizures reduced from more than 20 a day to about three, and his family "has its boy back", a Sydney Children's Hospital pediatric neurologist, John Lawson, said yesterday.

"Initially, I was sceptical about how a change in diet could have such a dramatic effect on an illness as traumatic as epilepsy, but this has completely transformed their lives," he said.

The ketogenic diet comes in two forms. On the classic version, children receive about 90 per cent of their calories from fatty foods, with small amounts of protein for body growth and repair, while children on the oil version, used at the Sydney Children's Hospital, are given a diet of 80 per cent fat, with about 50 per cent of that obtained from a tasteless medium chain triglyceride oil added to all food and drinks.

The diet, which was developed in the 1920s, mimics starvation by forcing the body to burn fat for fuel, rather than carbohydrates and protein. The liver then produces ketones, which replace glucose as the brain's main energy source, and have an anti-convulsive effect on the brain, reducing the number of seizures a child will experience each day.

"This is not an alternative to medication though," Dr Lawson said. "This is an extremely unhealthy diet that most of us couldn't tolerate so it is a treatment we use only for people who have not responded to several drugs, which accounts for about one-third of all children with epilepsy."

A study in this month's Lancet Neurology, which followed 145 children who were having seizures daily and had failed to respond to at least two anti-epileptic drugs, found that those on the ketogenic diet had 50 per cent less seizures and many were not having seizures at all after three months. About one-third experienced a greater than 90 per cent improvement. But the side effects, which include constipation, lack of energy, pancreatitis, kidney stones and cardiac, renal and liver complications, can be debilitating and dangerous.

"It's not for everyone," Dr Lawson said. "But for some people, it can be life-changing."

For Arrian's mother, the diet has meant a radical change to family life, with his meals made up of cheese, cream, margarine, nuts and the oil.

"It's certainly been a challenge," Ms Eminovski said. "It takes a lot of commitment and organisation, but it has more positives than negatives."

Giving babies too much to drink may cause seizures

Water is the best way to hydrate people of almost every age, but giving too much water to a baby can cause a seizure. Melissa Schroeder never gave her daughter Mia water before age one, and hasn't given a drop to five-month-old Ezra Rose yet either. "I always thought I was airing on the side of not giving water as a bad thing," said Schroeder.

Pediatricians at Johns Hopkins Children's Center say her decision is smart. They say babies under six-months-old should never have water, and it's best to stick to breast milk or formula until age one. Too much water dilutes sodium from a baby's blood, which alters brain activity and can cause a seizure, they say. "That causes a low volume of sodium in the bloodstream so they have less sodium available to the cells in their muscles, heart and brain where it needs to go," said pediatric emergency physician Dr. Jennifer Anders.

Doctors at Hopkins see a few babies every month admitted because of hyponatremia, especially during the summer, possibly because many parents like Melissa don't know about it. "I've never heard of that before, no," said Schroeder. "No, i've never heard of that but even if I gave her water she would refuse to eat it," said Qi Chen.

"That actually is very scary, I would have never would have had any idea that that would have been dangerous," said Steffani Sanders.Symptoms of water intoxication include unusual irritability, low body temperature, facial swelling and seizures.

Doctors say the condition is very hard to detect, and often the first sign a parent notices is the seizure. "If they're brought to medical attention right away they should be fine and recover quickly," said Dr. Anders.Schroeder says she's not going to take any chances and will wait until Ezra Rose is one before giving her water.

Doctors say formula and breast milk have the perfect nutrition to nourish babies. Infants instinctively know when they need to eat and doctors say parents should just follow their lead.

Five years old girl, her mother's hero!

Sara Evans of Burleson may not have a red cape or the ability to fly, but she was recently declared a hero in her own right.Burleson Mayor Ken Shetter declared Evans an official hometown hero at a recent city council meeting “for the act of life-saving heroism performed on behalf of her mother, Elizabeth Ford.”

Ford has suffered three grand mal seizures within the last six months, and each time 5-year-old Evans responded by calmly calling 911 and providing the dispatcher with the necessary information, according to Shetter’s proclamation.“I taught Sara how to call 911 when she was 3,” said Ford, who has suffered from a seizure disorder since she was about 14.

Because of her medical history, Ford took emergency-dispatcher courses several years ago to learn about handling scary situations calmly, information she passed onto her daughter.“I want to be a dispatcher, too,” Evans said eagerly.During Ford’s last grand mal seizure, which occurred in late May, Ford fell off the couch, and Evans was quick to respond.“I called 911 and told them that she was pregnant and had had a seizure,” Evans said.

“Whenever she has a seizure, she can always count on me.”Grand mal seizures feature a loss of consciousness followed by a period of disorientation, and Ford said Evans’ help has been comforting.“I don’t know when seizures are coming on, and with Dad being gone all the time, I know I can count on her,” Ford said of Evans.

Before proclaiming her a hometown hero, Shetter said Evans’ quick response in calling 911 was heroic and helped avoid catastrophe.“This courageous action averted what could have been a tragic loss to family, friends and the community and deserves special recognition by the governing body of the city of Burleson,” he said.

Although Ford said Evans’ special recognition was great, she believes everyone should know how to react in an emergency situation.“I’m very proud of Sara, but I’m surprised it’s such a big deal because it seems like something all kids should know,” she said.Evans agreed.“Some other parents do have emergencies and the kids might panic,” she said.

The Web site www.emergencypreparednesstips.org offers advice on staying calm and handling such situations.

Seizures may be sign of passed stroke

Stroke patients who suffer seizures are more likely to die within 30 days than stroke patients who don't have seizures are, a new study shows.

Seizures may be a sign of significant brain injury and may occur in patients who've suffered any type of stroke. This study found that the overall incidence of seizures within 24 hours of a stroke is 3.1 percent. Patients with intracranial hemorrhages (bleeding within the brain) have a higher rate of seizures (8.4 percent) in the first 24 hours after stroke. Overall, there was a 30 percent mortality rate within the first 30 days of a stroke.

The researchers also investigated any racial differences in post-stroke seizures and found that, even though blacks are known to have higher rates of both seizures and strokes, there were no racial differences in seizure incidence or death rates.

"Patients with seizures in the setting of acute stroke may constitute a target population for the development of drugs that may prevent seizures," study author Dr. Jerzy P. Szaflarski, said in a prepared statement.

"Because patients with stroke have high incidence of immediate and long-term seizures and epilepsy, they constitute a population where seizure prevention with anti-epileptic drugs can be studied," Szaflarski said.

The study was published in the June issue of Epilepsia.

More information

The American Stroke Association has more about stroke effects.

Drevats Syndrome causes seizures

"She progressed normally the first year," said Jeff Ames. "She was an early talker, an early walker."

It was the Ames' first child, Tessa. Little did they know as parents, they'd spend so much time in the emergency room.

"Tess went through a phase where she had 300 seizures a day," Ames said. "Every time she got sick or had a temperature, she generally ended up in the intensive care."

She was almost one-and-a-half when they got a diagnosis.

"He knew it the minute we walked in. He actually didn't say she had Dravet's syndrome, he actually pushed a piece of paper that listed Dravet's syndromes pathology and it is something you do not want to read as a parent. I remember going home with Heath and reading this and saying, my God she can't have this," Ames said.

She did. Dravet's is an extremely rare seizure disorder. At age two, a major seizure. Tessa didn't walk for a year.

"I quit my job and Health quit her job and we shut down for five years and tried to make the most of the situation we had," said Ames.

Now, at age 7, the seizures have taken their toll. "A cumulative thing. Some of the seizures have caused epic brain damage and certainly, all the little seizures have a cumulative effect," Ames said.

Dravet's syndrome

By age three, seven out of 100 children will have experienced a fever induced seizure. Most won't have another one, but some are not so lucky. Marcie Frasier has more.

She's walking, but is unstable and can talk but limited.

The fear with this disease is that the seizures can last hours and the risk of heart attack even death, is very high. To keep Tessa’s seizures under control, she’s on six medications that she has to take several times a day.

They work hard in their restaurant called Cantina and are giving back with The Cantina Kids menu. Buy one of their kids meals and 100 percent of the money goes to the local hospital. They are also holding the first Cantina Kids Fun Run, for kids and their parents."It is really is one of the little life blood parent so the community, department is something you never want to know about until you are in it. We just thought it was a graceful way to get kids involved in a philanthropic way," Ames said.

Tessa still has seizures, but they are less severe. Precautions are necessary, because sun light can trigger her seizures, she must always wear sun glasses and a hat. Academically, she is at pre-kindergarten level and will most likely remain there. Considering most kids with Dravet's cannot talk or walk, she is doing wonderfully.

"Just knowing where she could be and where she is, is satisfaction for us. On a daily basis, the fact she can look at Heath and say, 'I love you mommy' what does any other parent want to hear? Right?” Ames said.

Tragic faith for man with history of seizures

A 60-year-old man is dead after falling out of a canoe Saturday afternoon in Lakeville.Authorities were called to Lake Marion just after 1pm after someone spotted a body floating on the water.

The victim, identified as William Beaman of Apple Valley, was found in a bay of the lake located west of 35W.Beaman was pulled from the water but police say it was apparent he had drown. He was not wearing a life jacket.

Investigators believe Beaman was alone and fishing from his canoe at the time of the accident. The canoe was upright and didn't appear to have capsized. Authorities say Beaman has a history of seizures.

Infants younger than 6 months can suffer seizures caused by water

Babies younger than six months old should never be given water to drink, physicians at Johns Hopkins Children's Center in Baltimore remind parents. Consuming too much water can put babies at risk of a potentially life-threatening condition known as water intoxication.

"Even when they're very tiny, they have an intact thirst reflex or a drive to drink," Dr. Jennifer Anders, a pediatric emergency physician at the center, told Reuters Health. "When they have that thirst and they want to drink, the fluid they need to drink more of is their breast milk or formula."

Because babies' kidneys aren't yet mature, giving them too much water causes their bodies to release sodium along with excess water, Anders said. Losing sodium can affect brain activity, so early symptoms of water intoxication can include irritability, drowsiness and other mental changes. Other symptoms include low body temperature (generally 97 degrees or less), puffiness or swelling in the face, and seizures.

"It's a sneaky kind of a condition," Anders said. Early symptoms are subtle, so seizures may be the first symptom a parent notices. But if a child gets prompt medical attention, the seizures will probably not have lasting consequences, she added.

Water as a beverage should be completely off limits to babies six months old and younger, Anders and her colleagues say. Parents should also avoid using over-diluted formula, or pediatric drinks containing electrolytes.

Anders said it may be appropriate in some cases to give older infants a small amount of water; for example to help with constipation or in very hot weather, but parents should always check with their pediatrician before doing so, and should only give the baby an ounce or two of water at a time.
If a parent thinks their child may have water intoxication, or if an infant as a seizure, they should seek medical attention immediately, she advised.

A combination of seizures and a stroke can be fatal!

Seizures may be a sign of significant brain injury, and may occur in patients that experience any type of stroke. A new study finds that stroke patients with ensuing seizures are more likely to die in the 30 days following stroke than patients without seizures. The findings show a mortality rate of over 30 percent at thirty days after stroke.

The study, to be published in the June issue of Epilepsia, finds that the overall incidence of seizures within 24 hours of an acute stroke is 3.1 percent. Patients with intracranial hemorrhages (bleeding within the brain), have an even higher incidence of seizures – 8.4 percent – in the first 24 hours after stroke.

Cerebrovascular diseases, including strokes, have long been recognized as a risk factor for the development of epilepsy, particularly in elderly populations. However, the incidence of seizures within 24 hours of stroke has not been studied extensively.

The authors also aimed to establish any racial differences in the incidence of these post-stroke seizures. They found that, despite the fact that blacks are known to have higher prevalence rates of both seizures and strokes (especially in younger age groups), there were no racial differences in seizure incidence or mortality rates in the studied population.

“Patients with seizures in the setting of an acute stroke may constitute a target population for the development of drugs that may prevent seizures,” says Dr. Jerzy P. Szaflarski, lead author of the study. “Because patients with stroke have high incidence of immediate and long-term seizures and epilepsy, they constitute a population where seizure prevention with anti-epileptic drugs can be studied.”

Ted Kennedy suffered seizures

Senator Edward M. Kennedy was hospitalized today after suffering a seizure, triggering shock in the political world and drawing an outpouring of support from across the nation and the ideological spectrum.

The 76-year-old Democrat, a tireless advocate for liberal causes and the surviving patriarch of the storied Kennedy political dynasty, was talkative and joking with family members this afternoon, friends and associates said. His condition was considered serious, they said, but his life did not appear to be in imminent danger.

‘‘Senator Kennedy was admitted to Massachusetts General today after experiencing a seizure at his home,’’ Kennedy’s personal physician, Dr. Larry Ronan, said in a statement released tonight. ‘‘Preliminary tests have determined that he has not suffered a stroke and is not in any immediate danger. He’s resting comfortably and watching the Red Sox game with his family.‘‘Over the next couple of days, Senator Kennedy will undergo further evaluation to determine the cause of the seizure, and a course of treatment will be determined at that time,’’ Ronan said.By the evening, the mood of Kennedy family and friends contrasted markedly to that of the morning, when he was stricken at his Hyannis Port compound at about 8:15 a.m., rushed first to Cape Cod Hospital and then transported by helicopter to Massachusetts General Hospital in Boston.

His children were urgently summoned to Boston. Telephone lines buzzed with politicians in Washington and Boston exchanging scraps of information, and television crews rushed to set up in the front drive of the hospital.

Kennedy, who underwent surgery in October to prevent a stroke but had appeared to rebound quickly, was undergoing a battery of tests to determine what caused the seizure.

Hospital personnel declined to comment on his condition, and the longer term impact of the episodes remained unclear.

But one family associate said yesterday evening that Kennedy was alert and joking with family and was watching the Red Sox play the Milwaukee Brewers. They planned to dine on takeout from Legal Sea Foods in his room last night, the associate said.The senator was stricken by what was initially believed to be strokelike symptoms at his Cape house, but Kennedy’s Senate office released a statement around 2 p.m. that confirmed he had experienced a seizure.A government official said he was believed to have suffered a second seizure on the flight to Boston.

‘‘He is undergoing a battery of tests at Massachusetts General Hospital to determine the cause of the seizure,’’ a brief statement from his Senate office read. ‘‘Senator Kennedy is resting comfortably, and it is unlikely we will know anything more for the next 48 hours.’’

A seizure is an electrical disturbance in the brain that usually lasts no longer than a couple of minutes, and it can have multiple causes, including a fever, infection, dehydration, a stroke, a tumor, or an old head injury.

Over the day, members of his famous family, including his niece Caroline Kennedy, the daughter of assassinated President John F. Kennedy, and all three of his children — Patrick, a congressman from Rhode Island, Edward M. Kennedy Jr., and Kara — rushed to his side, either pushing through throngs of reporters gathered outside the hospital or slipping into a side entrance by Storrow Drive. Kennedy’s nephew, former Massachusetts congressman Joseph P. Kennedy II, also visited, as did Senator John F. Kerry.It was the second time in seven months that Kennedy has been hospitalized. In October, doctors performed surgery to clean out a partially blocked neck artery they said had put him at risk of a stroke.The chief of vascular surgery at the hospital described it at the time as ‘‘routine, uneventful, and successful,’’ and days afterward Kennedy friends were privately laughing over how quickly the senator demanded his release.

But doctors also described the extent of the buildup in Kennedy’s artery as ‘‘a very high-grade blockage’’ and said there was a slight chance it could recur in the next few years.

Reports of Kennedy’s hospitalization prompted a media frenzy and statements of sympathy from all three presidential candidates, who are Kennedy’s colleagues in the US Senate.

Democratic presidential candidate Barack Obama, beginning a tour of hospitals in Eugene, Ore., ahead of next week’s primary, told reporters he had been in touch with Kennedy’s family.

‘‘Ted Kennedy is a giant in American political history,’’ Obama said. ‘‘He’s done more for healthcare than just about anybody in history. We are going to be rooting for him. I insist on being optimistic about how it’s going to turn out.’’

Kennedy gave Obama’s presidential campaign a major boost this year with his endorsement and has campaigned actively for the Illinois senator.

The other Democratic contender for president, Senator Hillary Clinton, said: ‘‘My thoughts and prayers are with Senator Ted Kennedy and his family today. We all wish him well and a quick recovery.’’

John McCain, the presumptive Republican nominee, said Kennedy’s role in the US Senate could not be overstated.

‘‘He is a legendary lawmaker, and I have the highest respect for him,’’ McCain said. ‘‘When we have worked together, he has been a skillful, fair, and generous partner.’’

Kerry, the state’s junior senator, said in a statement: ‘‘Teresa and I are praying for Teddy, Vicki, and all of his family, and we know that everyone in Massachusetts and people throughout the nation pray for a full and speedy recovery for a man whose life’s work has touched millions upon millions of lives.’’

Governor Deval Patrick released a statement saying: ‘‘The senator, Mrs. Kennedy, and their whole family are in our thoughts and prayers. Diane and I are sending good wishes and hoping for the senator’s speedy recovery.’’

Governor Mitt Romney, who lost his Senate bid to Kennedy in 1994, said: ‘‘Having run against him, I know firsthand what a fighter Ted can be. I trust he’ll fight through this, as well. We’re all pulling for him.’’

Kennedy, arguably the best known member of the US Senate, is an icon to those on the left and a scourge to conservatives nationwide. He was first elected in 1962 to fill the seat left open when his brother, John F. Kennedy, was elected president.

Edward Kennedy made an unsuccessful run for the presidency in 1980, losing the Democratic nomination to President Carter; it was an upstart challenge to an incumbent president that infuriated some in Kennedy’s own party.

He was hospitalized yesterday as the Kennedy family was involved in a charity bicycle ride that began at the John F. Kennedy Library in Dorchester earlier today and was scheduled to conclude at a Hyannis Port beach with a concert and lobster bake.

‘‘Massachusetts General is one of the best hospitals in the world; I’m 100 percent confident he’ll be fine,’’ Kennedy nephew Anthony Shriver, founder and chairman of the nonprofit Best Buddies, said as riders arrived this afternoon at the event.

State Senator Mark C. Montigny, who also attended the event and had visited the Kennedy compound earlier in the day, said: ‘‘From everything I’ve heard, he’s doing great. ... I’m shocked, but I’m equally pleased he seems to be doing very well.’’

At Mass General, dozens of reporters stood outside the entrance waiting for word on Kennedy’s condition, with more than a dozen television cameras from local stations and national networks.When Kennedy underwent surgery in October, his doctors said that the blockage found in his left carotid artery could have triggered a stroke by choking off blood flow and preventing oxygen from getting to the brain or by breaking off and lodging in the brain.

About a quarter of strokes are due to carotid artery disease. Such surgery is typically performed on patients who have had a stroke or have an artery that is at least 70 percent blocked.

Kennedy felt no symptoms from the blockage, which was discovered from a routine MRI conducted to check on his spine, which was injured in a 1964 plane crash. At the time, his personal physician deemed his overall health excellent and said he exercised daily and ate well. After a short period of rest, Kennedy returned to the Senate floor Oct. 30.

Before the surgery, Kennedy’s only serious hospitalization is believed to have been after the crash of a small private plane more than 40 years ago. Kennedy suffered several fractured bones in his back, broken ribs, and internal bleeding in the crash, which killed two people.

The youngest of the nine children of Joseph P. Kennedy and Rose Fitzgerald Kennedy, Edward Kennedy was first elected to the Senate in 1962 to finish the final two years of his brother’s term. He has been reelected to eight full terms and is now the second most senior member of the Senate.

Twice married, Kennedy also has two stepchildren, Curran and Caroline Raclin.

Kennedy has two surviving sisters, Eunice Kennedy Shriver and Jean Kennedy Smith. The latter was among his visitors today. Two other sisters, Rosemary Kennedy and Patricia Kennedy Lawford, died within the past three years.

4 years old girl, tumor caused more than seizures

A once-suffering little girl is learning to enjoy life now that a bizarre tumor that caused her to begin menstruating at the age of 14 months has been removed, The New York Times reported.

Grace Webster suffered until the age of 3 with a hypothalamic hamartoma or H.H., a benign tumor on the hypothalamus that affects just a few thousand people in the world.

Although the tumor is not malignant, it causes a host of problems including early puberty, symptoms of autism and social maladjustment, and gelastic seizures, also called laughing seizures because of the crooked smile that often accompanies them, according to the report.

When Grace was 14 months, her parents, Erica and Perry Webster, were told she had the reproductive system of a 12-year-old.

The tumor was removed last year at Barrow Neurological Institute in Phoenix, The New York Times reports.
Dr. Isabelle M. Germano, professor of neurosurgery, neurology, oncological sciences at Mount Sinai School of Medicine in New York City, told FOXNews.com she recently saw a patient for a similar condition.

"Mt. Sinai has been doing the surgery for several decades," said Germano, who is also the director of stereotactic and tumor program at Mt. Sinai.

Germano said surgery is risky and can bring with it a host of problems.

"It's very similar to the risks associated with any neurosurgery," she said. "It could cause an additional neuro-deficit, injury, bleeding, infection."

A year after having the operation at Barrow, Grace still suffers from a form of diabetes and low thyroid function, but her health is improving.

She also must get injections every 28 days until she is 11 to hold off the early puberty she once experienced, according to the report.

Can a brain pacemaker control seizures effectively?

Tony Mendoza fractured his ribs and mangled his nose after he had an epileptic seizure and fell down a flight of stairs.

Sydney Pershing often cried in her room because of the depression resulting from her epilepsy, a neurological condition characterized by recurrent seizures, usually of unknown cause.

Those episodes occurred before Mendoza, 40, and Pershing, 30, heard about Vagus Nerve Stimulation therapy, in which a surgically implanted device sends mild electrical pulses to the brain to prevent electrical irregularities that cause seizures.

The therapy, which costs about $25,000 and is covered by most insurance companies and Medicare, is used in conjunction with medication. The Food and Drug Administration approved it in 1997 for epilepsy that cannot be controlled with anticonvulsant medication, which involves about about 30 percent of the 2.7 million cases in the United States.

Seeing success in treating epilepsy patients, the device's manufacturer, Cyberonics, petitioned the FDA to expand its use to cover the most severe form of depression.

The FDA approved it in 2005, but the decision was controversial. The agency initially overrode its advisory panel and withheld its approval, after reviewing studies and petitions questioning whether the device worked for depression. Medicare and most major insurance companies don't cover it, calling the treatment for depression experimental.

Karen Riley from the FDA said Friday in an e-mail that the device ``is intended for people with chronic or recurrent depression who are experiencing a major depressive episode and have not had an adequate response to four or more adequate antidepressant treatments. FDA reviewed the data and decided to approve the device to provide an alternative for this narrow patient population.''

Despite the doubts from some, doctors and patients say the pulses to the brain appear to work in epilepsy cases.

The surgery usually lasts two hours. The battery-operated pulse generator, ''about the size of an Oreo cookie,'' is placed in the chest and electrodes are placed in the neck around the vagus nerve, which originates from the brain stem, said Dr. Jose Gonzalez, medical director of the Epilepsy Foundation of Florida.

''It's like a cardiac pacemaker,'' says Dr. Eugene Ramsay, professor of neurology and psychiatry at the University of Miami's Miller School of Medicine. ``It activates the vagus nerve in the neck on the left side and sends signals to the brain stem.''

About two weeks after the surgery, a neurologist will program the device to stimulate the nerve in regular intervals. When a seizure is about to occur, there will be an electrical disturbance on some neurons in the brain. ''VNS will counteract this disturbance and . . . eliminate the possibility of a seizure,'' Gonzalez says.

Optimum results take time. It could be months or a year before the proper setting is found.

CHILDHOOD ACCIDENT

Mendoza, of Hialeah, waited about nine months before he could control his seizures. He developed epilepsy and had about three seizures a day after a softball hit him in the head when he was 10.
''They didn't let me play sports because I was having seizures,'' he says. ``At school I got no respect. . . . It was so stressful for me because I couldn't go to the prom. It really hurt. The military, the police academy, I couldn't enter it. I entered college, but it didn't go well for me.

``I was at Miami-Dade North and I had a seizure and fell off the second floor, down the stairs. When I woke up my ribs were broken in half, my nose was cracked.''

In 1997, he underwent brain surgery, which reduced his seizures by 70 percent. Although they never reached the grand mal level, which involves a loss of consciousness and violent muscle contractions, Mendoza still saw Ramsay, his neurologist, every three months. Ramsay recommended the VNS therapy.

In 1999, Mendoza had the device implanted in his chest. Afterward, ''I still had some seizures,'' he says. ``This happened for eight or nine months. Ever since then, I've had only five seizures in nine years. It's been a blessing.''

Mendoza sees Ramsay less frequently now -- once or twice a year -- and last December he started a travel business, Tony2Travel Inc. ``I'm going to Mexico in July . . . In the future I want to sky dive, scuba dive, enjoy my life.''

THERAPY'S SIDE EFFECTS

Side effects of the VNS therapy include a change in the patient's voice when the pulse generator activates, increased coughing, difficulty breathing and the possibility of an infection occurring around the implant. Unlike some epilepsy medications, the device poses no threat to the heart, liver or kidneys, says Ramsay, one of the first clinical investigators for VNS therapy.

The device is intended for patients 12 and older, but a study in the April 30 edition of the journal Neurosurgical Review concludes that it might be beneficial in toddlers affected by severe epilepsy and multiple developmental disabilities. On the subject of depression, another study, in the March 27 edition of Journal of Affective Disorders, concludes that despite promising results, more clinical trials are needed.

Pershing, of Coral Springs, is convinced that VNS therapy has helped with her depression as well as her seizures.

''I was terribly depressed. I cried a lot and I gained weight, but I have done a total 180-degree change,'' she says.

Pershing, a medical assistant, was diagnosed when she was 13. ''At the beginning I had just one grand mal seizure, then they were consistent, maybe four or five a month,'' she says. ``The seizures lasted five to 10 minutes, and they happened just about anywhere.''

Now, Pershing has a seizure every two months or so, and they last two to three minutes. ''When I get stressed or irritated I have a seizure, so I try not to get stressed,'' she says.

Pershing carries a VNS magnet with her at all times. The hand-held device can be swept over the implant to stop or shorten the seizure and lessen its intensity. ''Sometimes I have partial complex seizures where you stare in space.'' She'll come out of it when the magnet is slid over the stimulator.

''All my friends and family know I have the implant,'' she says. ``If you were to have a seizure in the middle of the street and no one knows, they would call 911. You don't need to go to the hospital every time you have a seizure.''

Hemisperectomy for six years old suffering from seizures

Jessie Hall is 6 years old and she suffers from a rare disease called Rasmussen's Encephalitis which causes her to suffer constant life threatening seizures and unending twitching. To fix this, doctors from John Hopkins will remove half of her brain.Rasmussen's is a rare nervous system disorder which causes chronic inflammation of the brain and usually affects only one hemisphere of the brain.

Besides the inflammation, other symptoms characterize this rare disease, such as, frequent and severe seizures, loss of motor skills and speech, paralysis on one side of the body and mental deterioration. The procedure to help Jessie Hall is known as a hemispherectomy and will be performed at the John Hopkins Children's Center.

A hemispherectomy is a procedure where half the brain is removed to relieve frequent severe seizures that resist medicines given to help prevent them. In a study performed by John Hopkins in 2003, which was reported on by ScienceDaily, shows that 86 percent of the 111 patients that received a hemispherectomy as of conclusion of that study, were either seizure-free or had non-disabling seizures that do not require medication. I

t is said that surgery has no apparent effect on personality or memory.

JESSIE HALL'S STORY.

Jessie and her family went out on Lake Texoma, in August of 2007, sailing with a friend and about an hour-and-a-half into the trip where Jessie went from being the chattering little girl her family knew to a little girl falling asleep while eating her sandwich, one that they couldn't awaken. The parents would later find out she was suffering from Complex Partial Seizure.

Jessie on her boat trip before her first seizure on 8/4/07When she did awaken, her left eye and her head started jerking, she was making grunting noises, her legs started twitching and she was drooling. The parents called 911, while still on the lake and started their trip back to the marina, where they were met halfway by a game warden who had heard the call and he took them in his speed boat the rest of the way for a faster trip back.

About five minutes out from the marina another speed boat met them with paramedics on board who immediately started working on Jessie, but at that point she was through the worse part of the first seizure. The ambulance took Jessie to the hospital where the family was told Jessie has low potassium but that blood, urine, chest x-ray, CT, ECG were normal.

Two days later the family met with another doctor at Cook's Children's Hospital and preliminarily it was believed that Jessie had Epilepsy. The next week was busy with further tests being done, more scheduled and little Jessie started kindergarten. On September 4, 2007, Jessie had her second seizure while in kindergarten class.

The parents say that the teacher and staff were "amazing" in how they handled the situation and got Jessie to the hospital. By September 18, 2007, Jessie was put on Anti-Convulsant drugs to control any further seizures. On October 3, 2007, Jessie had her worse seizure yet, which the parents were able to stop using medications they were given but that was only temporary and she started seizing again the same day.

Again the parents rushed their little girl to the hospital, still under the impression that it was epilepsy, just a worse form than originally thought. Jessie was put into the

Epilepsy Monitoring Unit where the rooms are all wired with infrared cameras and EEG interface boxes.


Jessie in the Epilepsy Monitoring UnitThroughout the next couple months, Jessie had seizures or partial seizures and her parents kept their logs of times, dates and all pertinent information for the doctors. Jessie had developed a 24 hour twitch and had lost some use of her left arm and hand, so the parents decided it was time to get a second opinion from another hospital and another doctor.

On December 10, 2007, the took Jessie to see Dr. Steven Lender at Medical City Dallas, who observed the twitching of Jessie's fingers and hand as well as the loss of dexterity in that hand, asking if the treating doctor had seen that, to which the parents said no because they hadn't had an appointment in a while.

He encouraged the parents to get her in to see her original doctor immediately because he suspected Encephalitis, which is inflammation of the brain. Two days later Jessie was back in the hospital, hooked up to machines and she was diagnosed with Focal Encephalitis in the Right Occipital Lobe and Jessie was put on a 7 week course treatment with Anabolic Steroids.

The doctor had also discussed Rasmussen's Encephalitis with the parents and while that was not diagnosed yet, he told them it couldn't be ruled out. By this time the parents were in constant fear for their daughter as well as having four other children to care for, but they were hopeful the new medications would work.

Long term effects of the Anabolic Steroids does not allow for them to be used for any extended length of time, but while Jessie was on them, the twitching left, she started regaining the use of her left hand and the family had a wonderful Christmas and New Year. they were optimistic. As they reduced the doses of the Steroids, the twitching started to return as did the seizures.

By January 2008, Jessie was back in the hospital after another very bad seizure. By February, Jessie's twitching was back again, she would have periods where she lost sight and would speak gibberish and she was having Simple Partial Seizures about once a day. This led Jessie's parents to write a letter to the treating doctor:

Dear Dr. Chacon, In the EMU, on 12/14/2007, Dr. Malik diagnosed Jessie with Focal Encephalitis. She was put on a high-dose steroid cycle, which temporarily ended the continuous twitching in her left hand, returned the function of her left hand, and significantly reduced her Simple Partial Seizures; an indication of reduced inflammation in her brain.

On 02/12/2008, and prior, we reported that the twitching was back and worse, and that she had lost almost all use of her left hand.

1.) Has the diagnosis changed?

2.) If not, why are we experimenting with Anticonvulsants instead of going after the root cause and reducing the inflammation in her brain before she has permanently lost function in her left hand and arm or worse?

3.) Are we waiting for test results? Realistically, how long can we wait before we risk Jessie losing function in her left hand and arm permanently? As parents, we have an innate feeling that something is dreadfully wrong and that the symptoms (seizures) are being treated, and not the root cause (encephalitis).

We can cope with her simple partial seizures (hers are short, and don’t hinder her day), but losing function in her left hand and arm are driving us both toward a nervous breakdown. Sincerely, Cris and Kristi Hall More tests, higher doses of Steroids again and Jessie's case was to be presented at a Neurologist Conference on February 20, 2008.

February 20, 2008, a team of neurologists at Cooks Children's Hospital in Fort Worth, Texas, agreed and diagnosed Jessie with Rasmussen's Encephalitis, they believed she was in Stage III. The team recommended a Right Hemispherectomy (Removal of the entire right half of Jessie's Brain), they also recommended that the Hall's get a second opinion from Johns Hopkins in Baltimore, Maryland, who are the experts in this field.

The next weeks followed and the parents were on pins and needles waiting to hear from John Hopkins and they finally got an appointment date for Monday, March 10th. In earlier calls and communications, the the staff at John Hopkins had suggested the family do a few things in preparation. One of those things was to talk to families that have been through the procedure, which the Hall's did.

Meet Cameron. She is 7 years-old and a real cutie. She is in school and doing well and likes to do things that normal 7-year old girls do, like play dress-up and celebrate birthdays, and hang out with her friends and family.

Cameron had a hemispherectomy at Johns Hopkins in June of 2007 (nine months ago). Her story is here http://www.blogger.com/profile/09618184310533248537 .


Mayor Kit Marshall Declared the Day as "Jessie's Day" and gave her a parade as a send off for her trip to prepare for her surgery.The public response to the family was more than they expected. Jessie received a letter from the Make-a-wish Foundation, granting her any wish that she wants, A fund was set up to help the family with the costs that would be associated, Midwest Airlines wrote to the family offering to take care of the air travel needs between

Dallas Fort Worth and Baltimore for Jessie's surgery, Jessie's school principal declared Friday, April 4th as "Jessie's Day" at school, the media highlighted Jessie's situation, the family had an amazing trip to Give Kids the World, and Cracker Barrel sponsored Jessie's Carnival. Jessie also celebrated her 6th birthday on March 8, 2008. The mayor of their town, Kit Marshall, declared May 10, 2008, "Jessie's Day" and they send her off to Baltimore in style with everything pink because that is Jessie's favorite color and the dallas cowboys cheerleaders showered her with attention, and she was the Grand Marshall in a giant pink parade.

Jessie Hall's surgery has been scheduled at John Hopkins Children's Center for June 11, 2008. The family is now in Baltimore at the Children's House which is special housing for the parents of children with life-threatening illnesses that are being treated at Johns Hopkins.

The parents keep Jessie's blog updated for friends, family and everyone that has shown such caring and interest in Jessie's story, so if you want to leave the family a little note of encouragement, the comment section is open.