Wednesday, December 31, 2008

Dog left to die is a little girl's lifeline!

When the Pieters family adopted Jack, a dog once left to die in a dumpster, they hoped he would act as a constant companion to their daughter, Maya.

They never considered that the Terrier mix would also save the little girl's life, on more than one occasion.

Jack's loyalty -- and keen senses -- have proved that one person's trash can truly become another's treasure.

Just ask 8-year-old Maya, who inspired her family's trip to the Humane League of Lancaster County in 2004. When the Pieters saw how seamlessly Maya bonded with Jack, he had nowhere to go but out of the kennel, and into their home.

"Maya was down on her knees and her face as close to the gate as can be and he's licking her and I heard Maya talk more then to him then she had in a whole week," recalled Maya's mother, Michelle Pieters, of their first encounter with the dog.

The connection was exceptional for the young girl, whose condition forces her to struggle with normal oral and social functions.

When Maya was 3-years-old she was diagnosed with congenital bilateral perisylvian syndrome, an extremely rare condition that only 100 to 200 people in the world are reported to have.

The disease affects Maya's oral motor functions -- such as speech and swallowing -- and could cause seizures. But it also took a toll on Maya's self esteem. Always left out by other children, Maya became very withdrawn at a young age.

Maya's speech therapist, Donna Buss, suggested the Pieters family get a dog in 2003. She thought it might benefit Maya's socialization skills. Buss says Maya's shyness made their sessions difficult -- at the time, very little progress was being made.

So the Pieters launched a search to adopt the perfect dog. It took one year to find one that Maya felt comfortable with -- but the wait, in the end, was all the more worthwhile.

Though flea infested and dirty, Jack was the miracle for which the Pieters were searching.

Maya bonded with Jack instantly and the connection would prove more significant than Maya or her parents could have ever predicted.

Jack was sleeping in his crate one morning last year, when suddenly, without apparent provocation, he leaped from his bed and darted up the steps to Maya's room. The door was closed, but Jack sensed that Maya was inside -- and that she, for whatever reason, needed help.

The dog began to relentlessly claw and bark at the door, until Maya's family took notice of the dog's frantic state.

Jack, the Pieters realized, knew exactly what he was doing. Maya was found in her room, having her first seizure in her sleep.

Jack's urgent response to Maya's seizure probably saved her life, as the seizure was a new, unprecedented symptom of her condition.

The Pieters took to calling the little shelter dog "Maya's guardian angel."

Since that first episode, Maya has suffered other seizures. Each time, Jack has been able to preemptively sense when Maya is about to have a seizure. He has broken her fall, sat on top of her to help settle her convulsing body, and when she finally wakes up, licks her tears dry.

Jack has helped Maya in other ways as well. Upon adopting the dog, Maya's oral motor functions have improved drastically. Before Jack, Maya did not speak very often and was very sensitive to her face being touched.

Jack has helped Maya overcome these problems with routine face lickings, playtime and simply standing in as Maya's constant companion.

All of these accomplishments led to Jack's nomination for the Humane Society of the United State's "Valor Dog of the Year," an award to honor and celebrate dogs that have performed extraordinary acts of courage.

Jack competed against heroic dogs across the country, and although he didn't win the main prize, he was granted the "People's Choice" award.

Jack may have no idea he is nationally known for his good deeds. All he knows is someone once gave up on him, threw him away like a piece of trash. And now, he is loved by a family, cherished by a little girl. In return, as much as Maya Pieters gave him a new chance at life, Jack has given her the same gift, as well. Tell us what you think about " 'Thrown Away' Dog Saves Little Girl's Life" below. Share your favorite videos by clicking on the ZootooTV tab. Send us your story ideas by e-mailing us at news@zootoo.com or by calling us at 877-777-4204.

Tuesday, December 30, 2008

A special dog for a special toddler

He's not quite two years old, but he already wants a puppy. Yet, while many families would say he's too young for a pet, Luke Smolinski's wishes have more at stake than playing fetch with Fido.
The Norton toddler has been diagnosed with epilepsy and a chromosomal disorder that has delayed his development, but the biggest challenge for his family are his constant and unpredictable seizures.


"At eight months, he had his first seizure and it was a pretty horrifying experience," said Jackie Smolinski, Luke's mother. "He has 15-20 a month. In one particular day, a couple of Saturdays ago, he had seven."

Jackie is hoping that a specially-trained Labrador can become the partner Luke needs in his times of crisis.

"The dog basically would just serve as an alert to us, is trained in seizure alert, to come and get us," she said. "They say the dog can actually come and get us before the seizure begins and most definitely after the seizure started."

Luke's doctors at Akron Childrens Hospital support the idea.

"I think it's a great idea," Dr. Cathy Kelly-Lagen said. "And for Luke to have someone able to know 'I'm having a seizure at night and someone needs to know' (will help). So they can at least keep track of the seizures because that will help the neurologist guide his therapy."

A specialized dog for Luke won't be cheap, but a group that trains dogs in Southern Ohio believes one can be found for Luke if his family can raise a portion of the funds.

A seizure response dog is $11,000 and a one-year supply of dog food is $5,700.

A special fundraiser to help with the cost of Luke's Dog will be Jan. 11 from 1 to 4 p.m. at the Independence Civic Center, 6969 Selig Drive, in Independence. The $20 adult tickets (kids are free) include food, prizes and raffles and are tax deductible.

If you can't attend the event but would still like to help, tax deductible donations can be sent to:

4 Paws for Ability, Inc.
253 Dayton Ave.
Xenia, Ohio 45385

Make sure the name "Luke Smolinski" appears in the memo of the check so Luke gets credit for the donation.

To learn more about the training of the dogs and to see photos of Luke and his family visit
www.4pawsforability.org.

If you have prize items to donate to Luke's fundraiser, please contact Laurie Hovater Meadows at 216-952-3698.


Raising funds for Gillian's service dog

Since the day she was born, Gillian Rose Rezanson has had 20 to 100 seizures every single day.
At eight years old, the Ellison elementary school student is less than two developmentally, and her severe epilepsy means she has spent months at B.C. Children’s Hospital in Vancouver.


Despite the thousands of seizures she’s endured, the youngster smiles day after day through all her many challenges.


“She is our angel girl, and she glows with warmth and love for all who get close to her, touching and kissing whoever comes close,” said her mom, Liz Rezanson.

Gillian has always needed one-to-one support and constant care and attention. If Liz needs to run downstairs to get the laundry, she can’t leave her daughter alone, for fear she will seizure or get into a dangerous situation because she has no understanding of danger.

But support is on the way, thanks to 4 Paws for Ability, an Ohio-based organization that trains and provides service dogs to families and children who struggle with life’s daily challenges and who would otherwise be turned away by other agencies.

The dog will be trained to accompany Gillian everywhere and will be tethered to her to prevent her from getting into dangerous situations. The dog will be trained to alert Gillian’s family and caregivers of big seizures by barking, and it will comfort Gillian through her many seizures, retrieve objects she drops as a result of her seizures and help her get up when she is unsteady after seizures. It will also support her through her many medical appointments and procedures.

“This dog would be a unique source of support for Gillian in the home, at school and during hospital stays and an incredible comfort to our family knowing Gillian is never alone when she is seizing,” said Liz.

In her research, Liz discovered that most agencies will not place with children and also have extremely long waitlists. 4Paws is the only agency the family has found that can meet their needs.
The family is looking at a 10 to 12-month wait for a dog, shortened from the usual four to six years because the Rezansons are raising the funds needed.

“It is much quicker than if they have to raise the funds for each dog, so the dog is so-called free, and we’re not paying for it as such, but fundraising as volunteers for 4Paws to raise the money needed, to train the dog,” said Liz.

The funds needed are substantial — $13,000 US — and the Rezansons have been busy, sending out 100 letters to service organizations and businesses, placing donation boxes around town and accepting donations through their website or through Gillian’s trust fund at CIBC.

Once funds are in place, the Liz, husband Brian, Gillian and her siblings, Tristan, 13, and Amy, 11, will travel to Xenia, Ohio for two weeks of intensive training (oldest sibling Daniel, 27, has left home) with the dogs and trainers. Once funds have been raised for the dog, the family will continue fundraising for their travel costs.

“Ideally, they recommend the whole family go and this is what we are aiming to do as Gillian’s siblings are old enough and they need to know how to handle the dog, plus this dog will be part of our family and I think we all need to be there for that reason,” said Liz.

While the family faces many challenges, Liz said a smile from Gillian goes a long way, and they are sustained, also, by their faith.

“I feel surrounded by friends, family and community, as though there is a circle around our family that God’s love flows through these people to us.”

The saying, “It take a village to raise a child,” is particularly apt in Gillian’s case — Liz said it takes a community. And, while it’s possible to give her daughter some independence, it takes therapeutic solutions.

“This dog will truly enhance her life, giving her more independence and the support she needs but we will never be able to get her this dog without community helping us.”

There are a number of ways the community can help. Donation containers — next to Gillians’ photo — are at Save-On Foods, Hunter’s Store, Lyon’s Den Hair Design, Milla and Sol Children’s Boutique, Lavington Shell Market, Lavington Superette, Future Shop, Cotton’s Chocolates and The Morning Star.

As well, the leadership clubs at Ellison and Mission Hill elementary schools and Vernon secondary schools are planning fundraising events.

“The kids in our community are great, very loving, and we are thankful for all the time they are giving to this.”

Donations can be made at any CIBC, transit #00260, account #81-71939. For more information, please see www.hopeforgillian.ca, where online donations can also be made, or www.4pawsforability.org

“One of my goals for the website is for it to be a tribute to our community and family that makes things possible for Gillian, such as the volunteers that make it possible for her to ski with us as a family and horseback ride, and the people who give to Variety, so Gillian can have a tandem bike to ride with her family.”

The link between viral meningitis and fatal seizures

NYU Langone Medical Center scientists have announced the discovery of an unexpected cause for the fatal seizures seen in mice with viral meningitis, an infection of the central nervous system.

The researchers say that their breakthrough may lead to a new way of thinking about how the human immune system responds to viral diseases. Research leaders Dr. Michael L. Dustin and Dr. Jiyun V. Kim employed intravital two-photon microscopy to peer inside the skulls of infected mice. They said that their breakthrough technology could be used to take moving pictures of immune cells in action.


According to them, the cells are tagged with a protein that glows fluorescent green when activated by infrared light, which is able to penetrate living tissue without damaging it. The researchers joined forces with Dr. Dorian McGavern, Associate Professor of Immunology, and Dr. Silvia Kang at Scripps Research Institute, who provided virology expertise and performed many critical experiments that supported the unexpected findings of the study.

For their study, the researchers used lymphocytic choriomeningitis virus (LCMV), which is relatively harmless in humans with a healthy immune system. They revealed that mice infected with LCMV suffered fatal seizures. The scientists said that they had the idea that the seizures were not caused by the virus itself, but by the immune system's response to the infection. They said that something sets off a chain of events that begins with leakage of fluid from blood vessels into the meninges, the protective covering of the brain and spinal cord, followed by swelling, which in turn leads to seizures.

"T-cells, which are designed to attack the virus, were thought to be the bad guys, but no one understood the exact cellular dynamics involved in infection-induced seizures," Nature magazine quoted Dr. Kim, who did the intravital two-photon microscopic imaging in the study, as saying.

Upon noticing the behaviour of the T-cells, the researchers observed that rather than attacking cells infected with the virus, they wandered around, apparently unable to recognize their targets. "Up to a point, the T-cells did everything they should do. They made copies of themselves and migrated to where the virus was, but when they got there, they couldn't do the right thing. At least they didn't do what we expected them to, which was to stick tightly to the infected cells," Dr. Dustin said.


That observation provided the first clue that T-cells could not be causing fluid to leak from the blood vessels into the meninges, said the researchers. Another series of experiments showed that the real villains were monocytes and neutrophils, two types of white blood cells that usually fight bacteria, not viruses. With the aid of intravital microscopy, the researchers found that massive numbers of these white blood cells breaking through the walls of blood vessels into the meninges, opening the floodgates for fluid to pour out and cause swelling.

According to the researchers, unable to kill the virally infected cells, the T-cells appeared to be summoning monocytes and neutrophils to the site of infection, which turns out to be the wrong call. Although many questions remain, "we've discovered a totally new target-the neutrophils and monocytes recruited by the T-cells," Dr. Dustin says, "If you can prevent that recruitment process, either by inhibiting the T-cells or, preferably, inhibiting the monocytes and neutrophils, you can probably prevent the disease."

Source-ANISRM

The proper medication does not only control seizures, it has no side effects either!

Ten miles into the Girlfriends Half Marathon on Oct. 19, Sandy Valentine was feelin’ good.Then ... trouble.As she crossed the new land bridge over Highway 14 into the Vancouver National Historic Reserve, a breakdown added to the challenge of running 13.1 miles.But, after waiting five years for the opportunity to race again, Valentine was determined.

An iPod malfunction wouldn’t keep her from the finish line.“I was probably running too fast,” Valentine joked. “The iPod just froze and I couldn’t get it back again.“Then I saw that hill going up to Officer’s Row and then it’s like, ‘I don’t know. It’s a mind game now.’ “Head games are something Sandy Valentine knows well. Too well.A survivor of two brain aneurysms — 15 years apart — Valentine is an avid runner.

But the Oct. 19 half marathon in Vancouver was her first race since she and some close friends completed the 2002 Hood to Coast Relay.That Hood to Coast was a celebration, coming eight months after Valentine had surgery to repair her second brain aneurysm. She had twice survived a medical challenge that statistically ends in death more than half of the time, and among survivors often leaves lasting brain damage.

She beat long odds just getting to that 2002 Hood to Coast Relay. But it would be six long years before she would race again alongside some dear friends.Instead of pounding pavement, organizing group getaways and enjoying photography, Valentine spent much of the next four years at home on a rust-colored couch.During the winter after that Hood to Coast, Valentine was playing golf with friends on a trip to Palm Springs.

“All of a sudden, I just felt awful,” she recalled.At first, she figured the spells were part of the healing process. Deep down, she knew the seizures were something else.It would be almost five years before friends would again recognize the Sandy Valentine they love.The seizures and side effects including weight gain, weight loss, fatigue, memory loss and allergic reactions often kept Valentine at home. On her better days, she would muster the energy to attend daughter Carly’s soccer games.

Still, Valentine kept faith that the medicines her doctors had prescribed would begin to work their magic. Her previous experience as an aneurysm patient had taught her that a body needs plenty of recovery time.Friends, though, could see Valentine was not well. They watched and worried as she lost weight and slept away long hours. Among those friends were her running pals.Beginning in the early 1990s, Nancy Kerr, Debbie Krebs, Salber, Andie Sperry, Michela Euser and Valentine built a friendship while sharing the road on morning runs in the North Salmon Creek area.

They talked about their challenges in life, and traveled together to races.Valentine was at the core of the Pavement Pounders, the group’s name for itself. When they started traveling to races together, Sandy was often the instigator. Seeing her ill pained her friends.“We were going to have an intervention over her medicine.

We were so worried because it was taking her to the core,” Kerr said.“It was very hard because we did a lot of our talking and keeping up with each other when we were running,” Salber said.Sandy’s Pavement Pounder friends decided an intervention was not their place. But their individual nagging did not seem to register.Sandy said her medicine made her “fuzzy.”

Then came the day she fit into her high school daughter’s clothes, realized how thin she’d become, and decided to seek help.In the spring of 2006, Valentine was referred to Dr. Mary Ransom, a neurology specialist at Oregon Health Sciences University in Portland. Concerned that Valentine was having seizures, but also suffering significant side effects from her seizure medicines, Ransom had Sandy admitted to the hospital for extended observation.

It is not unusual for seizure medicine to cause fatigue and mood changes in patients, Ransom said.“It’s always a challenge finding a seizure medication that is right for a patient,” the doctor said.By hospitalizing Valentine, it was possible to quickly take her off her seizure medicine and watch how she reacted. Valentine did not experience any seizures during that hospital stay — when a seizure might have helped the doctor to better understand her condition.

Still, that hospital stay helped Ransom quickly shift to new medication.It took a while to build up to a full dose of the new medicine, and some time more for Valentine to build the strength to run.“Part of her healing, recovery and improvement is coming from her,” Ransom said. “It’s not so much what we’ve done here, but what she’s done to help herself” by continuing to look for solutions.By June, about a year after meeting Ransom, she felt well enough to contact Euser — who moved away several years ago — with an idea:Salber planned to run the Girlfriends Half Marathon in October to celebrate turning 50.

Wouldn’t it be neat if they ran it, too, with Euser showing up as a surprise for the birthday girl?“Neither of us had run in quite a few years,” Euser said. “I needed a challenge to get me back out on the road running again, I wanted to celebrate Karen’s birthday, and I wanted to support Sandy on yet another optimistic adventure.”

On Oct. 19, Euser was ready. Krebs and Sperry ran, too. Kerr did not enter the half marathon, but was often around to support Valentine during her training runs.But as she crossed the land bridge on Oct. 19, Sandy Valentine was on her own.

She would have to fight through the final two miles of the half marathon without Diana Ross providing iPod energy.“(The finish line) couldn’t have come soon enough,” Valentine said. “I hit the 13th mile and it’s like, ‘Oh, my gosh’, and then it was another block and then another block.”Then she turned the last corner at 13th and Main in downtown Vancouver and, 2 hours, 9 minutes and 41 seconds after the starting gun — and more than six years after that celebratory Hood to Coast Relay — Sandy Valentine finished the race.

For the record, she placed 297th among 856 finishers.“For a healthy person to run a half marathon is something pretty special, so with all that she’s gone through with her health problems, it’s pretty amazing,” Sperry said as the Pavement Pounders celebrated being together at another finish line.For Valentine and her friends, this wasn’t just another race. It was a celebration of life reclaimed.

“I’ve had wonderful, wonderful doctors over the years. I’m so glad they’re practicing medicine,” Valentine said. “And it’s enriched my life in a different way. You appreciate it: your health, your family, your friends.“And I’m back,” she added, her smile saying more than her words.“It feels good to feel good.”

Monday, December 29, 2008

A battle with Epilepsy grants 5 years old girl a wish!

A lot of people have seizures and don't even realize it. New research even suggests severe headaches can be linked to epilepsy.

Grand Mal Seizures are the ones that are hard to miss. It's a life-threatening moment in time that no parent wants to see their child go through.

Hali is a 5-year-old girl who lives in St. Anthony.

Jodi, Hali's mother: "Some people just grow out of it. At this point, we have no idea how she's going to respond in the future."

Some people are born with epilepsy. Hali didn't develop it until she was four. That's when she started having seizures every two to three seconds a day. The scariest part was when she had her first Grand Mal Seizure.

Jodi, Hali's Mother: "She screams before she has them then she locks her jaw. She stops breathing. She turns blue. Her eyes disappear into her head and she shakes out of control."
Jodi says it's hard to control her daughter's seizures. Hali hasn't had a major episode for a year now.


The medication she takes to regulate the sometimes abnormal electrical pulses in her brain has been working but there was a time her mother didn't think she'd live much longer, a possibility that always lingers.

Hali's most serious seizure lasted 45 minutes. She forgot how to walk, how to use the restroom on her own, and how to identify one color from the next. All are skills she has since been re-taught.

After living in a hospital for three months, Hali finally has a room she can call her own.
She recently went on a shopping spree fit for a princess. The red carpet rolled out and she was swept away in what Hali calls the "movie star car".


To top it off, a professional designer lent her expertise for free.

Jodi, Hali's mother: "To her this is a big deal - to have her own space, and she spends every moment that she can in her room, especially at the vanity!"

Hali, Make-a-Wish recipient. "It's beautiful, I love it."

Besides monetary contributions, you can help create magical experiences for Wish kids by donating things like frequent flier miles, building materials and new electronics.

Call 238-WISH or log onto
www.idahowish.org for more information.

New therapies to treat Epilepsy are coming soon!

New therapies for some forms of epilepsy may soon be possible, thanks to a discovery made by a team of University of British Columbia and Vancouver Coastal Health Research Institute neuroscience researchers.

The researchers found that hemichannels – the same channels the researchers previously found to that cause cell death following a stroke – may also cause epileptic seizures that occur following head trauma or a stroke.

The findings, published in Science, will allow researchers to focus on new treatments that block these channels. A hemichannelis a channel that can form in nerve cells which allows chemical ions to pass through.

“The glutamate receptor that is linked to cell death following a stroke also triggers opening of hemichannels,” says UBC Psychiatry Prof. Brian MacVicar, who is a member of the Brain Research Centre at UBC and VCH Research Institute. “Therefore both stroke itself or the glutamate released by a stroke can open hemichannels and cause cell death or epileptic seizures.”

The researchers tested the effect of glutamate at levels less than those reached during stroke and found that more moderate activation of glutamate receptors opens hemichannels and causes seizure but does not produce cell death associated with stroke.

Glutamate is one of the brain’s most abundant chemical messengers. Gap junctions are connections that allow molecules and ions, to flow between cells. Junctions are composed of two hemichannels that bridge intercellular space.

When epileptic seizures occur, hemichannels unexpectedly open near the synapses, which disrupt the normal electrical activity of the brain leading to seizures.

“We found that blocking hemichannels reduced the epilepsy-like discharges,” says Roger Thompson, a former UBC Psychiatry post-doctoral Fellow who is now an Assistant Professor of Cell Biology, Anatomy and Clinical Neurosciences at the University of Calgary.

“With these results we are confident that the discovery of safe blockers of hemichannels will provide a new therapy in the treatment to reduce cell loss and seizures that are caused by stroke,” says MacVicar, who also holds the Canada Research Chair in Neuroscience at UBC.

“The next step will be to develop a compound to block brain cell hemichannels from opening,” says MacVicar. “Therapies for epilepsy patients who have suffered a stroke or head trauma may be available within five to 10 years.”

According to the BC Epilepsy Society it is estimated that one out of 12 people will have a seizure in their lifetime, and close to one in 100 Canadians have epilepsy. An epileptic seizure is an abnormal burst of electrical activity within the brain.

Teddy's battle with Dravet's Syndrome

TINY Teddy Thompson is “a gorgeous little star” who lights up the lives of his loving family.

Yet day and night the five-year-old battles a rare form of epilepsy which affects everything he does.

Teddy has suffered constant fits since he was born, some so severe and long he has to be rushed to hospital.

If a seizure lasts more than five minutes - and it happens every six to eight weeks - his parents have to dial 999 for immediate help.

Teddy has Dravet’s Syndrome, a random genetic condition which is drug resistant and can give him up to 30 seizures a day.

Mum Amy, 32, and 35-year-old dad Richard both work from home in Ingleby Barwick and fit their lives around him.

Accountancy lecturer Amy who writes text books, sleeps beside Teddy and wakes instinctively whenever he needs her.

“I have a built-in alarm,” she said. “It is scary and horrendous, but we’ve learned to cope.

“It didn’t help that there are no other parents around like us to talk to. We think there are only about 50 families in the UK with children like Teddy.”

At first Amy and Richard thought their only child had a brain tumour, but eventually doctors told them Dravet’s was “the best fit” though he only 80% fits the profile.

The family cannot go on holiday as Teddy needs a special enclosed bed so he sleeps safe, but Amy now trusts him to overnight respite care at Zoe’s Place baby hospice.

But she is reluctant to leave Teddy with anyone, trusting only her mother’s instinct for reading the signs of a seizure.

“The trouble is every one he has means Teddy loses a part of himself to epilepsy,” said Amy.

Teddy’s proud nan Anne Honeywell insists that the little boy’s good progress and the way he enjoys life is “down to Amy and Richard’s care.

The James Cook University Hospital theatre nurse added: “I am very proud of them. We don’t want people to think this is a hard luck story.

“We all love Teddy so much and miss him when he’s not around.”

She is keen to help Amy and Richard, who works for BT, raise awareness of Dravet’s by setting up an on-line forum to support families like their own.

But they need £5,000 to register as a charity - and that’s where family and friends come in. “We are determined to do it for Teddy,” said Anne.

A recent coffee morning at Anne’s house in Great Broughton raised an astonishing £500 to take the fund almost to its target.

One hope on the horizon is that Teddy will have an operation in the New Year to fit a vagus nerve stimulator.

“Some people respond, others don’t,” said Amy. “We just hope it will help Teddy.”

Tuesday, December 23, 2008

Father's abuse caused seizures in 4 months old daughter

A Cambridge man is facing child abuse and assault charges for allegedly shaking his 4-month-old daughter.Cambridge police arrested 24-year-old Taurean Mills on Friday, following an investigation into the child's injuries.

Charging documents say the baby's mother, 21-year-old Megan Mills, took her to Memorial Hospital in Easton on Dec. 4 because she was having seizures and was vomiting.

The baby was found to have a head injury and a broken arm and was flown to Johns Hopkins Hospital in Baltimore. She remains in critical but stable condition.Taurean Mills is being held at the Dorchester County Detention Center on $75,000 bond and faces a preliminary hearing Jan. 14.

Young girl stricken with seizures has been seizure free since brain surgery

A NINE-year-old Edinburgh girl, who was suffering up to 100 epileptic seizures a day, has undergone a radical brain operation to allow her to live a normal life.

South Morningside Primary pupil Hannah Goodall, who was born with cerebral palsy, was forced to wear a helmet to protect her head from injury when the constant seizures caused her to fall to the ground.But her parents say she is now looking forward to a bright future following the operation, which is only carried out when attempts to stop the seizures with drugs have failed, at the Great Ormond Street Hospital in London. In a procedure called a functional hemispherectomy, surgeons disconnected and disabled the part of her brain causing the seizures.

She has been free of seizures since the six-hour operation six weeks ago. Her mother Yvonne, an NHS researcher, said she and husband Nick, a software engineer, had faced one of the hardest decisions of their life in agreeing to the operation.

Is the Shaken Baby Syndrome done by accident or on purpose?

It all started with your baby’s natural phenomenon of having periods of inconsolable crying. You did everything you can; and you employed all the ways you know to calm the baby. Yet, the baby was still crying, and this time louder for everyone to hear. Frustrated, angry and losing control, you started shaking the baby, desperate to silence him. And you are right, he did stop crying. But after a few minutes, he became unconscious, and started to have seizures. What must have caused the sudden change in your baby’s condition?

Not many parents and caregivers realize that as little as 5 seconds of violently shaking the baby can cause a severe form of irreversible head injury. This is known as the Shaken Baby Syndrome (SBS), Whiplash-shaken infant, Shaken impact syndrome or Abusive head trauma. First described as a syndrome in 1974, Shaken baby syndrome can be lethal. It is a form of inflicted head trauma. Unlike other forms of head trauma, SBS results from injuries caused by someone vigorously shaking the child.

The anatomy of infants puts them at high risk for this type of injury. The baby’s neck muscles and ligaments are still weak and not well-developed enough to support his large and heavy head. Hence, whether it may be accidental or intentional, when someone forcefully shakes the baby, the baby’s head rotates about the neck uncontrollably. The soft brain of the baby bounces back and forth inside the skull, rupturing blood vessels and nerves throughout the brain. This can cause bruising and bleeding of the brain as well as tearing of brain tissue. After the shaking, the brain will swell, furthermore increasing pressure inside the skull.

In most severe cases, babies become unconscious, in seizure or in shock. In less severe cases, a baby who has been shaken may experience vomiting, poor sucking/decreased appetite, altered consciousness, bulging or spongy forehead, irritability, difficulty breathing, unequal pupil size, blood pooling in the eyes and rigidity. Factors affecting the severity of the infant’s injury include the duration, frequency, and impact of the shaking.

Shaken Baby Syndrome statistics revealed that 50% of offenders are natural parents, 17% are the mother’s boyfriend, 17% are non-relatives, and 6% are step parents. Though shocking but true, most perpetrators are the parents themselves. Thus, no wonder many cases of SBS are misdiagnosed for other medical causes because parents and caregivers, out of fear don’t often give the history that the baby had been shaken.

In the United States, about 1,200 cases of SBS occur each year. Out of 4 babies with SBS, 1 dies. Children who survive may have cerebral palsy, severe mental retardation, hearing loss, blindness, developmental delays, and seizures. As these surviving victims of SBS get older, they may require special educational services and continued rehabilitation and therapy.

Shaken baby Syndrome is 100% preventable. Many times the offender did not intend to harm the baby. Although it may be unintentional for a parent to shake the baby out of anger and frustration, it is still a form of child abuse with devastating effects.An effective way to prevent this incident from happening is NOT TO TOUCH YOUR BABY WHEN YOU ARE ANGRY OR UPSET.

Violent shaking is NEVER an appropriate way to express frustration. It is better for you to walk away and calm yourself first, then get back to your baby and comfort him. In this way, your escalating anger is put off and your patience is stretched out. After all, no parent desires to hurt, or worse- take the life of her very own bundle of joy.

Written by
Edelita R. Jamis, M.D.http://www.gagazine.com/author/edelita

Sunday, December 21, 2008

New treatment for seizures uses magnetism

THE controversial psychiatric practice of electric shock therapy to treat depression could soon be replaced by magnetic technology with no side effects.

The Alfred hospital's Psychiatry Research Centre is testing a machine that induces seizures the way electroconvulsive therapy, or ECT, does, but with less harmful magnetic fields instead of electric currents.

If trials on Australian patients go well, "magnetic seizure therapy" could rapidly replace ECT in Australian hospitals, centre deputy director Professor Paul Fitzgerald said.

"This could benefit thousands of patients … We have wanted to get trials under way for some time now, but have had to wait for the technology to catch up," he said.

Professor Fitzgerald said magnetic fields had already induced seizures in some patients without the side effects associated with ECT, but he said more trials with better technology were required to prove its efficacy.

Despite its reputation as a brutal practice, ECT has become increasingly common in the past 10 years, thanks to improvements in safety and the belief by many psychiatrists that it is the most powerful treatment for severely depressed people.

Medicare data shows the number of Government-funded treatments rose about 55 per cent from 12,480 in 1997-98 to 19,026 in 2007-08, costing the taxpayer more than $7 million.

But Professor Fitzgerald said many patients still suffered distressing side effects, including memory loss and disorientation.

He said the new machine — one of four in the world — was delivered to The Alfred last week to begin trials on Australian patients for the first time.

Professor Fitzgerald said he hoped the technology would benefit people who did not respond to first-line treatments for depression, such as antidepressant medications.

"There has been a lot of energy and effort put into depression awareness and early identification, which is great, but what hasn't been addressed is that about 30 per cent of people don't respond to treatment," he said. "We really need to substantially enhance the range of options these people have because they are at substantial risk of suicide … they are really suffering."

Brain surgery allows teenager to live seizure free

Jenna Carmen, like many 15-year-olds, is looking forward to getting her learner's permit to drive. However, it was never a possibility for her until a life-changing surgery last year.

Since she was 4 years old, Jenna has battled to keep epilepsy from overtaking her life, but she began having as many as 50 seizures a day, which greatly impeded her ability to function.
"It was scary. I didn't know I was having a seizure," said the Unioto High School freshman.


In the beginning

Jenna was 4 and staying with her grandparents since her parents, Denise and Jeff, were at the hospital with her little brother, Jarod. The couple were working through the intricacies of Jarod's genetic mutation, cornelia de lange, which has a variety of attributes.

Denise recalled they had received a phone call that Jenna was not feeling well and while Jenna was being taken to the hospital, she had her first seizure in the back of her grandparents' car. Once at the hospital, Denise and Jeff arranged for Jenna to be taken to the hospital they were with Jarod.
"(The doctors) said it was probably the spike in fever, and most likely she would have no more," Denise said.

However, three weeks later, Jenna's older sister, Paige, ran out of the bedroom, proclaiming Jenna was "doing something crazy." An EEG was conducted and came back abnormal. At that point, Jeff explained Jenna was put on medication to control the seizures and doctors said she may "outgrow" them.

A few years passed before Jenna had another seizure which sent her to (Nationwide) Children's Hospital in Columbus for an MRI that showed a dead spot in her left temporal lobe.

"They said surgery may be an option some day. We thought, 'yeah, yeah, right,'" Jeff said.
The Carmens couldn't imagine the epilepsy getting worse.

Seizure daydreams

As Jenna grew older, her seizures began to worsen, but they weren't always noticeable like one she had at school in January 2006. She had left class to go to the restroom and never came back, Denise said. Eventually Jenna was located and ever since, the school worked to provide Jenna a "buddy" to ensure the same thing wouldn't happen again.

Jenna's classwork was erratic with her skipping lines of questions and coming home with no understanding of what was taught at school that day. Jeff recalled it taking hours to complete homework because he and Denise would have to re-teach the day's lessons.

"I kept going to school counselors saying, 'I don't know what is going on,'" Denise said.

It turned out Jenna was regularly having petite seizures at school no one noticed because she just trembled and looked as if she were cold.

"It was in the seventh grade when someone realized I was having a seizure," Jenna said.

In April 2007, Jenna was having at least 50 seizures a day, not counting non-clinical seizures, which don't manifest visibly.

"Basically, she was living her life in a daydream," Jeff said.

Jeff and Denise took her to Columbus for a 24-hour observation when a doctor came in very excited.

"He came in, 'She go to Cleveland. They do brain surgery. She be fine,'" Jeff said, adding they had trouble understanding due to his heavy accent.

Denise began crying which she said she thought upset the doctor who kept telling them this news was good.

An answer

In no time, the family was sent to the Cleveland Clinic, where Jeff said the brakes were put on so doctors could perform their own tests. During a nine-day stay, Jenna's seizures were stopped with a combination of three medications prescribed at peak dosage. Within a week, Jenna was back in Cleveland because she developed an allergic reaction to one of the medications. In another week, Jenna had a seizure.

Although the process to surgery usually takes more than a year, Jeff explained Jenna's complications with the medication sped up that process.

"They sent parent volunteers in who had children who had the procedure to talk to us," Denise said.
"We decided to have the surgery. Basically, it was the only thing left to do at that point," Jeff added.
However, the area that needed operated on was in the same area that controlled her speech -the left temporal lobe. So after much discussion, the surgeon decided to first do a procedure to map the brain. A square of Jenna's skull was cut out and her brain was hooked to a grid for two days so doctors could determine what areas controlled what parts of her body.

"He said there were 2 centimeters where he needs to cut and the speech," Jeff said, adding he was skeptical. "He said 'that's like a mile to you. That gives me all the room I need.'"

The surgery was done May 30, 2007, and Jenna was home in a few days.

"I thought something would go wrong during the surgery," Jenna said. "I was very upset because I had to shave my head ... When I got ready for school, I couldn't look at myself."

Aside from regaining self-confidence, a scary dream that she couldn't move, a brief loss of speech (around a minute) and regaining the weight she had lost since the cluster seizures began, Jenna's surgery has been a success. For the first time in her life, six months after the surgery, Jenna had a normal EEG.

"You see stuff like that on TV and you never expect it to happen to someone you know," said 17-year-old Paige, tearing up. "She's so brave. I couldn't even imagine going through something like that."

Jenna has now been seizure-free for 19 months and medication free for more than three months. Once Jenna hits six months without medication or seizures, the doctor will clear her to get her driver's permit. And as long as she doesn't have to take medication, she no longer has to worry about birth defects later on in life when she decides to start a family.

"A year (after surgery), we had a reunion (at Cleveland Clinic) and every doctor knew her by name. They called her the tiger because she was so brave," Denise said, tearing up.

"I was screaming on the inside," Jenna quietly admitted.

School also has become easier since she can now concentrate.

"It has changed her whole life. She's gone from a kid who struggled with everything, never being able to drive, to a typical 15-year-old," Jeff said.

Rarely known miracle

Although the surgery was a success for Jenna and many others who have it, too few patients are having it according to a recent study published in the Journal of the American Medical Association. Each year, Cleveland Clinic performs between 250 and 300 of the temporal lobe procedures, however an editorial in the journal indicated not even 1 percent of the 100,000 estimated patients eligible are having surgery.

The study estimates people with temporal lobe epilepsy, the most common form, who have the procedure would not only improve quality of life, but also increase life span by about five years. However, sometimes it's a fight for parents to get the physician to recommend a child for testing, Jeff said, recalling the story of a man he met in Cleveland.

According to the study, patients whose seizures cannot be controlled by medication should be evaluated for the procedure even before all medication options are exhausted. Between 20 percent and 40 percent of people do not respond to drugs and of those who receive the surgery, two-thirds of patients become seizure free.

(Ison can be reached at 772-9367 or via e-mail at
jison@nncogannett.com)

Sunday, December 14, 2008

10 years old girl calls 911 to help mother during seizures episode

A major seizure has not been a part of Kathleen Horyczun's life for years, but one struck the morning of her daughter's 10th birthday."I think I had one while I was asleep," Horyczun said Wednesday. "I ended up falling out of bed. I hit my head on the dresser. I got up and fell down again."The only other person in their West Islip apartment Dec. 5 was Natalie, who was getting ready to go to school and celebrate her birthday with her classmates."I was scared," Natalie said Wednesday. But her mother said she's proud of her: her daughter called 911 and summoned emergency technicians.

After first trying to call her grandmother, who lives nearby, Natalie called 911 and told the operator her address, what happened and her mother's condition."It's hard for me to tell you what happened," Horyczun said, "because I don't remember a thing." She had prepared cupcakes for Natalie to take to school, and then, "all I can recall was they're bringing me down the stairs on the stretcher."She was treated at a hospital and released a few hours later.

Horyczun, 41, said she has had seizures since she was about 12, but medication has limited most of them to minor incidents she describes as "fazing out" briefly.A recent change in her medication may have led to the seizure on Natalie's birthday, a more severe one than she's had in years and greater than any her daughter had ever witnessed.But Natalie made it to the birthday celebration that day at Bayview Elementary school."I'm very proud of what she did," her mother said.

"She's a very responsible little girl."Among her gifts was a $10 bill from Jeremy Matthews, one of the responding Suffolk police officers."He was the nicest one," Natalie said. "He helped me find my cupcakes and was telling me everything was going to be all right."

Abusive father caused 3 weeks old son's seizures, killing him

A father who prosecutors allege abused his 3-week-old baby son so severely it brought on seizures that eventually caused the child's death has been charged with aggravated murder.

Cameron Nielsen, 22, was in 4th District Court Thursday with his parents to hear prosecutors read the new first-degree felony charge.

"We felt the baby was repeatedly assaulted," said deputy Utah County attorney Donna Kelly. "There were a number of incidents of abuse."

Jason Nielsen was born April 6 and taken to Primary Children's Medical Center May 11 with numerous rib fractures, three skull fractures, a liver laceration and brain injuries, according to a police affidavit filed in 4th District Court.

When police interviewed Nielsen, he allegedly admitted to squeezing Jason very hard and throwing him in his crib multiple times over the past few weeks, according to the affidavit.

After being taken to the hospital, Jason developed seizures, something he didn't have before the abuse, Kelly said.

The seizures got worse and worse, and despite being on medicine, they eventually caused Jason's death in October, Kelly said.

Before Jason died in medical foster care, Nielsen had been prepared to enter a plea deal to four charges of child abuse, a second-degree felony. But after his death, prosecutors revoked the plea deal and asked to revisit the charges.

The case against Nielsen marks the fourth aggravated murder case filed this year by the Utah County Attorney's Office.

Because of the potential of the death penalty, it also means the start of an intense and costly mitigation investigation by county funded defense attorneys. Nielsen is unable to hire his own attorney and was given a public defender.

"As you can guess, we'll have a lot of background work to do outside of court," said defense attorney Tom Means, who is the head of the Utah County Public Defender's Association.
Kelly said she had only received the medical examiner's report the day before, which listed the cause of death as "inflicted head injury," she told the judge.

Because prosecutors were waiting on the report, they failed to meet an earlier deadline to file new charges as set by Judge Gary Stott, so Nielsen's bail was lowered to $5,000 cash or bond.
He was able to bail out of the Utah County Jail and appeared in court out of custody, a rare situation for someone charged with a first-degree felony charge of aggravated murder, Means said.

Kelly said the Division of Child and Family Services had investigated the case when Jason was brought to the hospital and ended up taking custody of the couple's children, which included Jason and an older sibling.

However, the mother of the children has since received custody again of the older child, Kelly said. The couple is currently separated and their relationship strained, but Nielsen's parents have been very supportive of him, Means said.

Nielsen will be in court again Jan. 15.


E-mail: sisraelsen@desnews.com

Victim of worst brain surgery dies at 82

The man who fundamentally changed our understanding of how the brain works lived for nearly three decades in a Windsor Locks nursing home, a pleasant man with a damaged memory.Henry Gustav Molaison, a Hartford native, existed in relative obscurity. But as "H.M.," the name used to disguise his identity, Molaison gained an anonymous sort of fame, a man who had been studied by more than 100 researchers and became a staple of psychology class lectures.

Molaison died of respiratory arrest and pneumonia at age 82 on Tuesday, 55 years after an experimental operation in Hartford removed part of his brain. The surgery left him unable to form new memories, though he held on to earlier memories and intellectual abilities."What we learned from him was groundbreaking," said Suzanne Corkin, a neuroscientist at the Massachusetts Institute of Technology who had worked with Molaison since 1962.

Scientists had previously believed that memory was located all over the brain, but Molaison demonstrated that it was localized to a small area.Molaison's inability to form new memories also showed that short-term and long-term memory were two separate systems, not two parts of a continuum as scientists had believed.And Molaison demonstrated the difference between declarative memory — the kind that allows you to remember facts — and procedural memory, the kind used for skills like riding a bike.

Though he could not remember new information, Molaison could learn new motor skills.Corkin equated Molaison's death with losing a member of her family. He never remembered who she was, but he always greeted her like a friend. He told her he thought he knew her from high school.Corkin described Molaison as an easygoing, soft-spoken, polite man with a good sense of humor. He did not typically begin conversations, but if someone prompted him, he would talk and talk, sometimes telling the same story three times in 15 minutes.

Much of what he talked about, Corkin said, reflected his desire to do whatever he could to help people."He had a very positive attitude about science, about wanting to help in any way he could," said Brenda Milner, a scientist at the Montreal Neurological Institute who co-wrote the first scientific article on Molaison, published in 1957. "If he was just sitting quietly, he might say he wanted to help in any way."But Molaison never grasped, in a lasting way, how much he had helped."From a personal perspective, this was a tragedy," said David Glahn, a Yale psychiatry professor and member of the Institute of Living at Hartford Hospital.

"But from the perspective of science, we were able to learn so much from his personal tragedy."Glahn knows H.M.'s case intimately, but Molaison's death offered a reminder that he and most of the rest of the world never knew something fundamental about the man."I've been lecturing about him and teaching about him for years and years, decades, and I've never known his name," Glahn said.Molaison was born in Hartford in 1926, moved to East Hartford as a teenager and graduated from East Hartford High School. His father, Gustave, worked as an electrician at Baldwin Stewart Electrical Co.An only child, he suffered from seizures. The cause of the seizures was never clear; he was hit by a bicyclist when he was 9, but such accidents would not typically have such devastating results, Milner said.

Molaison was smart, but his seizures and the medications he took for them held him back. He had a job fixing motors, but had to give it up because the seizures made it difficult for him to work, Corkin said.By the time he was 27, he was having up to 10 minor seizures a day and at least one major seizure a week.That was when he underwent the experimental surgery, intended to relieve epilepsy. Hartford Hospital surgeon William Beecher Scoville, an internationally known expert in lobotomies, planned to remove a larger area of brain tissue than had been taken from patients in similar surgeries. He removed most of Molaison's medial temporal lobe, including all or parts of the hippocampus and amygdala.

The surgery, which was performed either at Hartford Hospital or the Institute of Living, left Molaison unable to remember anything new for more than about 20 seconds. But it did not change his personality, Milner said."Your autobiography, so to speak, was stopped, but your personality doesn't change," she said."He told jokes," she said. "Of course, he told the same jokes over and over because he didn't remember that he told you before."

But he remembered his life before the surgery.He could not describe specific episodes, but could talk about things like riding with his parents on the Mohawk Trail, his gun collection or roller skating.Molaison's father died in 1966, and his mother, Elizabeth, died in 1981. For a time he lived with relatives, and in 1980, he moved to Bickford Health Care Center in Windsor Locks, where he lived for 28 years. He blended in and was "a joy" to the staff and residents, according to a statement released by Sean Carney, Bickford's administrator."To us at Bickford, Henry was just a regular resident in spite of his exceptional circumstances," the statement said.

Many times, Corkin said, she would tell Molaison how important he was. "I'd say, 'You know, you're really famous, you're more famous than all the doctors who study you.' He'd sort of smile," she said. "He knew. For an instant."

Courant Senior Information Specialist Tina Bachetti contributed to this story.

How to prevent seizures following a stroke?

A joint effort by the University of British Columbia and Vancouver Coastal Health Research Institute neuroscience researchers has led to the discovery of new drug targets. These can get rid of epileptic seizures subsequent to a brain trauma or stroke.

According to the researchers, hemichannels, which were previously found to cause cell death after a stroke, may also cause epileptic seizures that occur following head trauma or a stroke. A hemichannel is a channel that can form in nerve cells which allows chemical ions to pass through. And the new findings will enable the researchers to focus on new treatments that block these channels. "The glutamate receptor that is linked to cell death following a stroke also triggers opening of hemichannels.

Therefore both the stroke itself or the glutamate released by a stroke can open hemichannels and cause cell death or epileptic seizures," said UBC Psychiatry Prof. Brian MacVicar, who is a member of the Brain Research Centre at UBC and VCH Research Institute. By testing the effect of glutamate at levels less than those reached during stroke the researchers found that more moderate activation of glutamate receptors opens hemichannels and causes seizure but does not produce cell death associated with stroke.

Glutamate is one of the brain's most abundant chemical messengers. Gap junctions are connections that allow molecules and ions, to flow between cells. Junctions are composed of two hemichannels that bridge intercellular space.

New technologic device helps control seizures

Epilepsy patients in a clinical trial who received an experimental brain treatment from Fridley-based Medtronic saw a significant reduction in seizures — a result released Saturday night that will spur the company to seek Food and Drug Administration approval so it can sell the device.
The trial was the most rigorous study thus far of Medtronic's deep brain stimulation device for epilepsy. The results were presented at the annual meeting of the American Epilepsy Society in Seattle.


They mark a significant milestone in Medtronic's drive to further develop the market for brain stimulators, which already are approved for use in patients with tremor disorders such as Parkinson's disease.

Much like pacemakers use electrical energy to regulate heart rhythms, implantable stimulators like the epilepsy device target specific portions of the brain.

"While the exact mechanism of why this works is not known, it has something to do with disrupting the highly synchronized abnormal electrical activity in the brain during a seizure," said Robert Fisher, professor of neurology and director of the Stanford Epilepsy Center, who was principal investigator of the trial.

The device consists of a pulse generator that is implanted in the chest and connected to small electrical wires that are tunneled beneath the skin and up the neck to the top of the head. The wires pass through the skull and reach deep into the brain, where they deliver electrical stimulation.

Brain stimulators are part of a group of so-called neuromodulation devices that Medtronic and rivals Boston Scientific and Little Canada-based St. Jude Medical see as key to future growth.
Houston-based Cyberonics already has approval from the FDA to sell a neuromodulation device for epilepsy patients, although that product sends electrical pulses to the vagus nerve in the neck — not the brain.

Epilepsy is a neurological condition that produces seizures affecting a variety of mental and physical functions. Seizures occur when a brief, strong surge of electrical activity affects part or all of the brain.

Patients enrolled in the study have had epilepsy for an average of 22 years, and their cases have been so severe that epilepsy medications haven't helped much.

The study found that 53 patients using the device in conjunction with epilepsy medications saw a median reduction in seizure frequency of 38 percent at three months — significantly better than the result for a control group of 55 patients who received the device but weren't receiving stimulation.
After three months, patients in the control group also had their devices turned on, and more patients saw a higher level of improvement, Fisher said. One of the key findings, he said, is that 60 percent of study participants for whom researchers had long-term data reported a 50 percent or greater reduction in their baseline rate of seizures at the end of the study period — anywhere from one to four years.

"If it hadn't been sustained, I wouldn't be so interested," Fisher said, adding that patients likely wouldn't let doctors put "wires in their heads" for a treatment that stopped working within six months. "But it turned out to be lasting."

Although Fisher said the results were "promising," he stressed that the device doesn't provide a cure for epilepsy. While a few patients in the study were seizure-free for long periods, a few saw no benefit, he said.

Others saw some level of reduction in seizures and, in some cases, a reduction in the intensity of seizures.

About 11 percent of study participants suffered an infection — not in the brain, but in the chest, neck or scalp where the pulse generator and wires were implanted.

Even if all goes well with Medtronic's forthcoming application for FDA approval, Fisher added, the treatment likely wouldn't be available until mid- to late 2010.

Christopher Snowbeck can be reached at 651-228-5479.

Saturday, December 06, 2008

Brain injuries vs. seizures

Traumatic brain injuries, one of the signature injuries of the wars in Iraq and Afghanistan, can be linked to such long-term problems as seizures, aggression and dementia reminiscent of Alzheimer's disease, according to a long-awaited Institute of Medicine report released Thursday.
Even mild brain injuries, the report found, appear to be associated with some of these outcomes.
The report by the Institute of Medicine, a government advisory group that studies health and medical issues, was the latest installment in a series of studies commissioned by the Department of Veterans Affairs on the health of veterans.


It was intended to aid officials in understanding what other conditions they should look out for in brain-injured patients and in determining disability benefits, said Dr. George Rutherford, chair of the committee that wrote the report.

The authors reviewed 1,900 studies on traumatic brain injuries, looking for problems that persisted more than six months. The report showed a "big hole" in medical knowledge about blast injuries, which have only recently come to doctors' attention because they are hallmarks of the Iraq and Afghanistan wars, Rutherford said.

"Some 5,500 military personnel have suffered brain injuries from mild to severe. The wounds account for an estimated 22 percent of all casualties in Afghanistan and Iraq — about twice the rate in Vietnam. Experts attribute this increase in part to better on-site medical care and body armor that allows ground troops to survive blasts that would otherwise be deadly.

Both the Veterans Affairs Department and the Pentagon have stepped up efforts to address the problem. In a telephone interview, Brig. Gen. Loree K. Sutton, director of the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, said there was "no daylight between the recommendations and actions the Department of Defense has taken already." She called that "a source of confidence, and reassuring."

The New York Times contributed to this report.

What is the difference between a stroke and seizures?

A person having a seizure may appear to be having a stroke, but there are some differences in the symptoms. However, when uncertain, the safest course is always to call 9-1-1 immediately.
Seizures

A seizure is a sudden change in behavi or due to extra electrical electrical activity in the brain. There is a wide range of possible symptoms of seizures, which may or may not include:


* lack of awareness

* blocked communication

* change in emotion

* change in vision

* convulsions

* staring spells

* temporary changes in sensation or vision

* incontinence

* loss of muscle control and falling

* tasting a bitter or metallic flavor

Focal seizures can be "simple" with no change in memory or awareness or "complex," with loss of memory or change in awareness. Seizures can also be classified as generalized (whole body affected) or focal (only one part or side of the body affected).

Common causes of seizures may include:

* brain injury

* metabolic abnormalities

* infections

* tumors

If someone has never had a seizure before or this is an unusually long seizure in someone with a seizure disorder, call 9-1-1 immediately. These symptoms can be caused by life threatening conditions, such as a stroke or meningitis.

What else should you do?

* Stay with the person until recovery or until you have professional medical help.

* Report all seizures (even a mild one) to the health provider.

* Prevent the person from injuring himself or herself.

* Do not give anything by mouth until convulsions have stopped and the person is fully awake and alert.

* Do not move the person unless he or she is in danger or near something hazardous.

* Do not place anything between the person's teeth during a seizure.

* Do not restrain the person

* Do not try to make the person stop convulsing.

Strokes

Occasionally, someone who has a stroke can show signs of a seizure. A stroke is a sudden neurological loss due to an interruption of blood flow to the brain. A person can have paralysis on the left side or loss of speech.

FAST is an acronym recognizing stroke symptoms. If you think some one is having a stroke, use this simple test:

* Face: Ask the person to smile. Does one side of the face droop?

* Arms: Ask the person to raise both arms. Does one arm drift downward?

* Speech: Ask the person to repeat a simple sentence. Can he or she repeat the sentence correctly? Are the words slurred?

* Time: Time is critical. Call 911 and get the person to a Stroke Center right away.

According to the American Stroke Association, 700,000 Americans suffer a stroke each year, making it the third leading killer behind heart disease and cancer and a leading cause of long-term disability. The good news is that fewer people die of stroke than they did 20 to 30 years ago, thanks to advances in treatment and prevention.

-- Dorothy Weinberg

Seizures caused by music and other unusual conditions

Persistent sexual arousal syndrome. An allergy to cold temperatures. Music-induced seizures.
They are conditions that you may be hard-pressed to find in the medical literature. Bring them up in front of a physician, and in some cases you may get little more than a blank stare.


But they exist. And while such rare conditions are cocktail-party fodder for some, they can be a source of difficulty and shame for those who experience them firsthand.

The following pages feature some of the more unusual medical conditions that have received recent media attention.

When You Can't Open Your Eyes for Three Days

Natalie Adler, 21, of Caulfield South, Melbourne, Australia, says she can sense the onset of her unusual condition -- and when she should start preparing for three days of darkness.

"The night before it sets in, my eyes get quite heavy and that is how I know it is coming," Adler told ABCNews.com.

Invariably, the next morning Adler finds herself unable to open her tightly shut eyes. The bouts generally last for about three days, after which she can open her eyes and once again see normally.
Adler said she has suffered from the condition for the last four years. Doctors, both in Australia and the United States, are baffled as to the exact cause -- or indeed, whether her condition is physical or psychological.

"We're not really sure of the diagnosis," said Catherine Mancuso, an orthoptist who coordinated Adler's treatment plans at The Royal Victorian Eye and Ear Hospital in Melbourne, Australia.
"There's nothing that would cause symptoms of a woman to close her eyes for three days, and open her eyes for three days," said Dr. Dean Cestari, a neuro-ophthalmologist at the Massachusetts Eye and Ear Infirmary in Boston.

Cestari believes that at least part of Adler's condition may be attributed to a psychological condition that has manifested itself in a physical way.

"It can be hard, because sometimes these patients come in with real experiences. They aren't making this up," said Cestari. "But the mind converted a conflict into a physical manifestation."
For now, Adler receives Botox treatments to the muscles surrounding her eyes. The injections often help her to keep her eyes open, but she said that the effectiveness of the treatments is starting to wane.

Now she is holding out hope for a more permanent solution, as well as a way to continue her day-to-day life despite the condition.

"In the beginning, I tried to ignore it but have now learnt to live with it," she said.

Persistent Sexual Arousal Syndrome

For those who have never experienced persistent sexual arousal syndrome, or PSAS, its symptoms may seem more like a godsend or a dirty joke than a debilitating condition.

However, for the women who experience PSAS -- which causes them to live perpetually at the brink of orgasm -- the condition is a nightmarish curse. And up until 2001, it was a curse that didn't even have a name.

"I thought I was alone in this," Heather Dearmon, a 34-year-old South Carolina woman who experiences PSAS, told ABC News' "Primetime." "And this is after seeing every kind of doctor imaginable -- gynecologist, psychologist, psychiatrist you know, everything. And none had ever heard of anything."

Relief from the condition is often as elusive as sympathy. The sensations, which are not brought about by fantasies or other sexual thoughts, are often only partially relieved through orgasm. For some women, even sex does not help quell their arousal, and on occasion can even make the sensations worse.

Dr. Irwin Goldstein, a professor of surgery at U.C. San Diego and the head of the Sexual Health Program at Alvarado Hospital, studies the condition. And he says understanding of the condition is spare, even within the medical community.

"Every lecture I give on this, there's always smirks in the audience: 'oh I wish my wife was like this.' These are professional physicians," Goldstein said. "And I said, 'no, no, you're, you don't really want this. You do not want your wife to have this, please.'"

Indeed, the mortifying nature of PSAS leads Goldstein to believe that perhaps thousands of women suffer from the condition without seeking a doctor's help.

"To me this is a sickness," Dearmon said. "This is not, it's not something we've chosen. ... I would rather never have another orgasm in my life for the rest of my life than to have this problem."

The Man Who Never Gets Cold

Wim Hof, 49, of the Netherlands, possesses such a strong resistance to cold that scientists remain baffled as to how he endures many of the tests to which he exposes his body.

The Guinness world record holder has immersed himself, nearly naked, in ice for one hour and 12 minutes.

In January 1999 he traveled 100 miles north of the Arctic Circle to run a half marathon in his bare feet. Three years later, dressed only in a swimsuit, he dived under the ice at the North Pole and earned a Guinness world record for the longest amount of time swimming under the ice: 80 meters, almost twice the length of an Olympic-size pool.

Hof earned more recent renown for scaling Mount Everest in his shorts.

Hof told ABC News' "20/20" that his ability to withstand cold temperatures was something he discovered more than two decades ago.

"I had a stroll like this in the park with somebody, and I saw the ice and I thought, 'what would happen if I go in there?' I was really attracted to it. I went in, got rid of my clothes. Thirty seconds I was in," Hof said. "Tremendous good feeling when I came out, and since then, I repeated it every day."

Dr. Ken Kamler, author of "Surviving the Extremes," has treated dozens of people who tried to climb Mount Everest, and instead nearly died from the frigid temperatures. When he heard that Hof had ascended the mountain wearing shorts, he became intrigued and began to study the Dutchman. He believes that Hof's ability lies in the wiring of his brain.

"It's very easy to speculate that the same mind control that you use to control your heart when you're scared also can be called upon to control the other organs in the body. And maybe that's how Wim Hof does this," said Kamler. "That's& it's speculation, but it sort of makes sense, and a lot of scientists are working very hard to try to figure this out now."

People Who Are Allergic to Cold

On the other end of the spectrum from Hof are those with a condition known as cold urticaria -- quite literally, an allergy to cold temperatures.

"If you put an ice cube on somebody that has cold urticaria, they're going to have a big welt right where the ice cube was," said Dr. Thomas Casale, chief of allergy and immunology at Creighton University and executive vice president of the American Academy of Allergy, Asthma & Immunology.

Worse, those with the condition can expect to experience similar reactions to bitter winds and cold surfaces. A minor exposure, such as taking a few snowflakes to the face during a blizzard, can result in the formation of itchy, uncomfortable bumps. A major exposure -- such as from diving into a chilly swimming pool -- could theoretically be enough to send the body into a potentially deadly allergic shock.

"There are patients that we've been talking to who have had full-blown vascular collapse and ended up in the emergency room, at death's door," said Dr. Gerald Gleich of the University of Utah, who studies patients who suffer from cold urticaria. "This is a very, very potentially serious problem."

Gleich said that as with other allergies, the hives that occur in those with the condition are brought about by an inappropriate immune response. Specifically, an antibody known as immunoglobulin E is likely to blame, as Gleich's studies have revealed that it is this component of the immune system that is activated when these patients encounter a cold stimulus.

Fortunately, this feature of the condition may also point to possibilities for treatment.

"Many of these patients are taking antihistamines, and some are getting good relief," he said. "We would like to see whether antibodies to immunoglobulin E would block all symptoms in these people. If it does, the FDA [Food and Drug Administration] might be willing to approve it and then we would have a treatment."

The Boy Who Couldn't Sleep

While nightmares are most often associated with sleep, for a few the inability to get any sleep is a nightmare in and of itself.

Such is the case with 4-year-old Rhett Lamb, who according to his mother stays awake nearly 24 hours a day.

"We went to the doctor after he was born, and I kept telling him something was wrong. He didn't sleep," Rhett's mother, Shannon Lamb, told ABC News' "Good Morning America."

"They thought I was being kind of an anxious mom, and we went back and forth," she said. "Finally, they [were] starting to realize now that he really doesn't sleep at all. But we've had a lot of different diagnoses and nobody really knows."

After a number of conflicting opinions, Rhett's parents finally learned what was wrong with their child: Doctors diagnosed Rhett with an extremely rare condition called chiari malformation.
"The brain literally is squeezed into the spinal column. What happens is you get compression, squeezing, strangulating of the brain stem, which has all the vital functions that control sleep, speech, our cranial nerves, our circulatory system, even our breathing system," said ABC News medical consultant Dr. Marie Savard.

In order to relieve this pressure, doctors earlier this year performed a surgery that would afford more space in the boy's skull for his brain. Surgeons made an incision at the base of Rhett's skull to the top of his neck and removed the bone around the brain stem and spinal cord.

Doctors expected results of the surgery, conducted in May, to take up to a year to manifest.
"There is a 50-50 chance that the sleep will improve," Lamb said. "Once the sleep improves, we can work on the behavioral stuff. He's very irritable all of the time."

"I would love to see him play and have a good time and be happy," she said.

For others with similar sleep-deprivation conditions, a lack of sleep can have serious detrimental health effects. Several studies since 2001 have linked a lack of sleep to heart disease and various mental disorders.

When You Can't Forget

For most of us, it is difficult to imagine a life in which nothing is forgotten.

But for a few people, every moment they live is indelibly etched into memory.

Wisconsin resident Brad Williams is one of these people. His extensive memory allows him to recall almost any news event and anything he has experienced, including specific dates and even the weather.

"I was sort of a human Google for my family," the 52-year-old told "Good Morning America" in his first television interview earlier this year. "I've always been able to recall things."

Another case is a woman who is simply known as "AJ" who revealed her condition to University of California at Irvine brain researcher James McGaugh, one of the world's leading experts on how the human memory system works.

Like Williams, AJ can answer obscure questions with mind-blowing accuracy -- such as the weather on a particular day several years in the past, or the details of a decades-old news item.
The condition is known among brain researchers as hyperthymesic syndrome, based on the Greek word thymesis for "remembering" and hyper, meaning "more than normal."

McGaugh told ABC News' Lee Dye that while the brains of these people are able to perform amazing feats of recall, it is still not fully understood exactly how this occurs. One hypothesis is that the "wiring" of the brains of those with hyperthymesia is set up in such a way that their brains are better able to organize and categorize information for later access.

Past this, however, researchers are stumped.

"In order to explain a phenomenon you have to first understand the phenomenon," McGaugh said. "We're at the beginning."

When Your Memory Disappears in a Flash

Memory can likewise be exceedingly fragile. Perhaps no one is more familiar with this fact than 57-year-old Beki Propst, who 10 years ago experienced a grand mal seizure that robbed her of a lifetime of memories.

"Everyone I knew before says my personality is the same," Propst told ABCNews.com. "But I don't know if I'm the same person."

Details of Propst's case continue to baffle doctors. What they do know is that a devastating "electrical storm" in her brain caused her declarative memory to be wiped clean. Facts, events, dates, acquaintances and even her identity were wiped away. As Propst describes it, "If I was a computer, it would be like my hard drive was erased."

David Ewing of Centennial Neurology in Greeley, Colo., Propst's doctor, said that it is remarkable that Propst has adjusted so well to her new life, which, in a way, began slightly more than 10 years ago. The seizure, he says, effectively disconnected the area of her brain in which her memories were stored.

"The area is still there, still intact," he said. "But it was like someone threw a breaker switch. ... She had a single general event, after which she woke up and all of her memories were wiped out."

Since the event, however, Propst has rebuilt her life. Her persistence in rejoining the work force has led to stable employment as a custodian at a state facility. She enjoys strong relationships with her family. And she has written a book, titled "Absent Memories: Moving Forward When You Can't Look Back," which documents her experiences.

"Every single person I met said, 'You need to write a book about this,'" Propst said. "I thought, 'what the heck, what do I have to lose?'"

While Propst's experience is rare, there have been numerous documented cases in which an injury has led to long-term amnesia.

Foreign Accent Syndrome

Traumatic events in the brain can have other unusual effects as well. For 52-year-old Canadian Rosemarie Dore, a stroke on the left side of her brain in 2006 led to a very unusual side effect -- she began to speak with a different accent.

Specifically, Dore, who lives on the Western side of Lake Ontario, adopted a distinctively eastern Canadian accent. She has never been to this region, and she does not know anyone from that part of the country.

"[There was a] nurse that was from Newfoundland," Dore told ABC News. "She comes down the hall, and she come into the room and she says, 'who's the Newfie here?'" referring to Newfoundland.

"I said, 'There's nobody here like that.'"

"And she said, 'I think I'm talking to her.'"

Though rare, foreign accent syndrome is not entirely undocumented in medical literature. Researchers who have studied the syndrome estimate there are only as many as 60 legitimate recorded cases.

One of the first known patients was reported after World War II by Norwegian neurologist Georg Herman Monrad-Krohn. He described a Norwegian woman who was hit on the head by a bomb fragment during the war and began to speak with a German-like accent. Because of her speech, she became the target of anti-German sentiment.

More recent cases include a Florida woman speaking with a British accent, a Japanese woman sounding to other Japanese as if she were Korean and a South Carolina man developing a French-like accent.

"I have only seen a couple of people with [foreign accent syndrome] ... and I've seen a lot of stroke patients in my time," said Dr. Julius Fridriksson, an associate professor of neuroscience at the University of South Carolina who worked with the South Carolina patient. "These folks have brain damage that alters the way the neurological system works."

Music-Induced Seizures

While it may be true that musical taste resides in the ear of the beholder, it is somewhat less common that a song can send a listener into an epileptic seizure.

But such was the experience of Stacey Gayle. Worse, the song that brought about her seizure was by dance hall reggae artist Sean Paul -- a favorite or hers.

"It was terrible," Gayle, a 24-year-old New Yorker, told ABCNews.com. "It didn't even have to be that loud."

One of Gayle's first music-induced seizures happened at a cookout where the song "Temperature" was being played. Some time after this, she had a similar experience at a restaurant.

The seizures were so bad that Gayle finally had part of her brain surgically removed in an effort to control her problem.

"She realized her life was going out of control with these seizures happening," said Dr. Ashesh Mehta, the director of epilepsy surgery at Long Island Jewish Medical Center.

Mehta recalled meeting Gayle in February to discuss her condition. When Gayle's mother played '"Temperature" on an MP3 player for her daughter to hear, a music-induced seizure followed.
"It was amazing to me," said Mehta. "We got a seizure when we put her music on."

Brain researchers believe such seizures can occur when the part of the brain that processes emotions associated with a certain type of music overlap with areas of the brain that trigger seizures.

About 70 percent of people with epilepsy are able to control their seizures through medication. For those who still have seizures or cannot handle the side effects of the medication, doctors consider brain surgery.

"We did try a number of different anti-seizure medications, but it was clear that her epilepsy was not responding," said Dr. Alan Ettinger, chief of the epilepsy center at Long Island Jewish Medical Center. "In her case, in addition to music setting off the epilepsy, even the very thought of the song started to provoke the seizures."

The Girl Who Feels No Pain

While pain is a sensation that few of us relish, the absence of it can be tremendously hazardous. And for a young child, the lack of ability to feel pain can be especially dangerous.

Such is the case with 8-year-old Gabby Gingras, whose parents recently learned that she had a rare condition known as hereditary sensory autonomic neuropathy, or HSAN for short.

"I was massaging Gabby's gums one day, and she bit down on me ungodly hard. It was so hard, I couldn't stand it," Gabby's father, Steve Gingras, told ABC News' Primetime. "When I pulled my finger out, I pulled a tooth out of her mouth -- and she's just happy playing like nothing happened."
Gabby's lack of pain sensation eventually led to the loss of all of her teeth. A badly scratched cornea forced doctors to remove her left eye, and she now wears a helmet and goggles every day to protect herself from serious injury.

In Gabby's case, the condition arose from a genetic accident that stunted the development of nerve fibers crucial in the detection of pain and temperature.

As children with this condition get older, the hazards associated with never knowing the sensation of pain persist. However, a number of people have lived into adulthood with the condition.

Gabby's parents have started a foundation called Gift of Pain, a support group for people with HSAN. So far they have found 39 people who think they have the condition.

"I don't want another mother to ever sit where Steve and I sat five or six years ago and say, 'what is going on? Why can't I get help? Why can't I get information?'" Trish Gingras, Gabby's mother, told "Primetime." "That's really what motivates me."

Valproic Acid used during pregnancy may be linked to Autism

Pregnant women taking the drug valproate to treat epilepsy, may significantly increase their baby’s risk of developing autism, according to a new study published in the journal Neurology.

However, experts say the benefits of the drug and the high risk of seizures during pregnancy may outweigh the risk of autism.

The study followed more than 600 children from pregnancy to birth and into childhood from 2000 to 2006.

Half of the children were exposed to epilepsy drugs while in the womb and the other half was not.
Statistically speaking, those children exposed to valproate sodium were seven times more likely to develop autism later in life compared to the children not exposed to the drug.

Although the findings were strong, the study was relatively small -- nine of the 632 children developed autism.

Autism is a brain disorder that affects a person's ability to communicate, form relationships, and respond to the environment. Individuals can have mild, moderate or severe autism.

An estimated one out of every 150 U.S. children has autism, according to the
U.S. Centers for Disease Control and Prevention.

The study raises questions for autism researchers and parents in the epilepsy community, says
Dr. Michael Goldstein, vice president of the American Academy of Neurology.

Depacon, also known as valproate sodium and valproic acid, is an anticonvulsant indicated in the treatment of certain types of seizures related to epilepsy. Approved by the U.S. Food and Drug Administration in 1997, Depacon is made by Abbott Laboratories.

Antiseizure medications, especially valproic acid has been known to cause “teratogenic malformation,” visible birth defects in the limbs.

Treating Epilepsy While Pregnant

Doctors are aware that some antiseizure medications can cause abnormalities in the brain. According to Goldstein, pregnant women with epilepsy are often forced to choose between the lesser of the two risks.

“Generally, we try to avoid valproic acid in pregnant women,” said Goldstein. “But, for some women who have trouble controlling epilepsy, they may be better off taking the medication then having seizures. Consensus is that seizures are worse for the babies than the drug.”

Uncontrolled seizures can cause permanent damage to the brain and for pregnant women can be fatal for mother and child.

“When considering the fetus developing inside the mom, the main thing parents are concerned about is organogenesis – do the limbs form right, are there ten fingers and ten toes – all of those things which are completed by the end of the first trimester, said French, also a fellow of the American Academy of Neurology.

That means, according to French, women with epilepsy and their doctors are more worried about the medications taken at the beginning of the pregnancy and less about which are taken at the end.
“But the brain develops after the first three months and throughout the pregnancy in the womb,” she said. She believes research that links valproic acid with brain development problems, including autism, should change the way these drugs are prescribed.”

Women that have epilepsy should not be afraid to have children, but they should consult their neurologist before deciding to start a family.

Brain surgery can help with untreatable Epilepsy

People with the most common form of epilepsy who don't respond to drugs would gain about five years of life, and dramatically improved quality of life at that, if they had a certain form of brain surgery.

That's the finding of a new study that relied on computer modeling to assess the benefits of surgery of the temporal lobe region for people with temporal lobe epilepsy.

"In light of what we found, some patients with this type of epilepsy, whose seizures are not controlled with medication, should consider getting further evaluation to see if they would be eligible for a procedure at a specialized epilepsy center," said study author Dr. Hyunmi Choi, an assistant professor of clinical neurology at Columbia University Medical Center in New York City.

And doctors perhaps should not wait to exhaust all medication options before considering surgery, Choi added.

"There are some physicians who just continue trying different medications, not realizing that there is a small surgical complication rate. But the chances of becoming seizure-free with this procedure is so much higher," Choi noted.

One expert agreed that the surgery should considered more often.

"The increased survival of five years is really a significant benefit. That's really a dramatic number," said Dr. Michel Berg, a neurologist and medical director of the Strong Epilepsy Center at the University of Rochester Medical Center, in Rochester, N.Y.

"People have been aware of the benefit of temporal lobe epilepsy surgery and the substantially greater portion of people that end up seizure-free, which substantially improves quality of life. Then, in addition to that, [there] is a survival benefit, which is just an additional piece of information that further emphasizes that we should be offering this treatment option to people with medically refractory temporal lobe epilepsy as early as possible," added Berg, who was not involved with the study.

The findings were published in the Dec. 3 issue of the Journal of the American Medical Association.

An estimated 20 percent to 40 percent of people with epilepsy do not respond to drugs, and are more likely to die early than people who do benefit from medication.

Yet despite scientific evidence and a statement from the American Academy of Neurology that temporal lobe surgery reduces seizures (two-thirds of patients become seizure-free) and improves quality of life, such surgery appears to be greatly underused.

According to an editorial in the same issue of the journal, an estimated 100,000 patients in the United States alone could be candidates for surgical treatment, but less than 2,000 actually had such a procedure in 1990.

What's more, those who do have surgery are often referred late, after an average of 20 years of illness. This delay may result from difficulty in diagnosing tough cases early enough. And new drug treatments may actually have lengthened the time to surgery, the editorial stated.

Temporal lobe epilepsy (when seizures come from the temporal lobe region of the brain) is the most common form of epilepsy, and the most amenable to surgery.

For the new study, the researchers used the "Monte Carlo" computer simulation model, which evaluated information on possible surgical complications, quality-of-life information, and patients' seizure status.

Surgery was the preferred treatment in almost 100 percent of the simulations, increasing survival by five years. When considering quality-adjusted life years (QALYs), surgery was preferred 96.5 percent of the time and increased QALYs by 7.5 years. Patients, who were an average of 35 years old, would gain 15 more years without seizures, the study found.

The benefits are likely understated, according to the editorial, by Dr. Jerome Engel Jr., a neurologist at the David Geffen School of Medicine at the University of California, Los Angeles. The reason: The model patient used in this study was 35 years old, and many people could benefit from surgery much earlier.

More information

Learn more about temporal lobe epilepsy at the
New York University Comprehensive Epilepsy Center.