Sunday, August 31, 2008

Young boy saves pregnant mom during seizures episode

An 8-year-old boy recently found himself at the center of a 911 drama in which rescuers couldn't find the victim, his pregnant mother.

When Joleen Quigg, a MedStar dispatcher, answered the emergency call for a mother having a seizure, she said she immediately faced two challenges.

"Yes m'am, help is on the way," she said to the young boy who made the call, and who she originally believed was a woman.

First, Quigg couldn't understand what the caller was telling her. Second, the call was made from a cell phone and Quigg had no way to locate the precise address. All she knew was that the caller was somewhere near Highway 377 and Keller Hicks Road in north Fort Worth.

“Ok, since you’re crying I can’t understand what you’re saying," she told Isaac Davis Pelletier, the 8-year-old boy who made the emergency call. "You need to take a deep breath and try to tell me where to send the ambulance so I can send help."

That was all the caller needed to hear.

"I was all business and I was kind of worried," Isaac said.

Isaac didn't know the address because his family had just moved into the home the night before. Isaac tried to do the best he could as he watched his pregnant mom having a seizure on the floor. At times, she wasn't breathing.

"When she was having a seizure I checked her pulse," he said. "My dad taught me that."

The neighbors weren't home and the street sign was too far to see.

"Plus, I had to be right by her side in case something happened," Isaac said.

During the entire 38 minute call, a MedStar unit circled the neighborhood and sounded its siren. But Isaac never heard the siren because it was still about a half mile away.

But, Isaac’s calm demeanor impressed Quigg.

"He never did get upset, have that freak response or anything," she said.

Finally, Quigg asked him to look in the mailbox, which was where Isaac found his address on an envelope. Paramedics arrived immediately.

Isaac’s mom, Rebecca Davis, has had seizures before. After this last incident, she said she feels at peace knowing her son is nearby.

"It means a lot that he's looking after me, making sure I'm okay," she said. "[He] didn't panic and freak out and sit here and just cry."

The experience, Isaac said, has left him thinking he might want to be a doctor. But for now, he’ll settle for a few more hours of cartoons before he has to report to the 3rd grade.

Thursday, August 28, 2008

Epilepsy vs. drowning

People with epilepsy appear to have a much higher risk of drowning compared to people without epilepsy, according to a study published in the August 19, 2008, issue of Neurology®, the medical journal of the American Academy of Neurology. Previous studies have shown a higher risk most likely due to seizures but this study is one of the first to show exactly how high the risk may be.

For the study, researchers compiled information from 50 studies of people with epilepsy worldwide that followed the participants for a total of more than 200,000 patient-years. They also looked at population data and national registries to determine how many regular drowning deaths occur. A total of 88 people with epilepsy died by drowning. By comparison, 4.7 deaths by drowning would have been expected if the rates in the general population applied.

The study found that people with epilepsy had a 15 to 19 times higher risk of drowning compared with people in the general population. That risk was highest for people with epilepsy and a learning disability, those in institutional care and those who have had brain surgery but who were not all free of seizures.

"It is important that people with epilepsy and their caregivers take steps to prevent these tragedies," said study author Ley Sander, MD, FRCP, PhD, of the University College London Institute of Neurology, Queen Square in London, UK, and member of the American Academy of Neurology.

"People with active epilepsy should shower instead of bathe, take medication regularly to control seizures and should have direct supervision when swimming," Sander said.

The study also found that the increased risk of drowning may not be as great in children compared with adults. Sander explains it is most likely a result of more direct supervision.

The Global Burden of Disease 2000 Project estimates that nearly 450,000 people drowned in 2000 worldwide, putting the normal drowning risk at about 7 deaths per 100,000 people.

###

The study was supported by the UK National Society for Epilepsy and by the UCLH/UCL Comprehensive Biomedical Research, which received funding from the NHS National Institute for Health Research.

The American Academy of Neurology, an association of more than 21,000 neurologists and neuroscience professionals, is dedicated to improving patient care through education and research.

A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as epilepsy, dystonia, migraine, Huntington's disease, and dementia. For more information about the American Academy of Neurology, visit
www.aan.com.

Monday, August 25, 2008

Encephalitis transmitted by mosquito caused seizures

The first words in Debbie Solberg’s journal are: SUMMER INTERRUPTED.Her 6-year-old son, Clayton, was busy this summer playing T-ball, taking swimming lessons and participating in the summer reading program.

Clayton Solberg plays in the yard with his mother, Debbie. Clayton, 6, contracted La Crosse encephalitis and has to wear a helmet when walking because his balance has not yet fully returned. Erik Daily photoDebbie, husband Mike, Clayton and his 4-year-old brother, Spencer, enjoyed the summer band concerts and weekend trips to parks.

They had planned a vacation before Clayton started school again.Instead, Clayton spent 27 days of his summer in the hospital, fighting for his life.He was critically ill with complications from La Crosse encephalitis, a disease that affects the nervous system and usually has a death rate of 5 percent to 20 percent among children.A mosquito — Aedes triseriatus — almost killed Clayton.“I knew about mosquitoes and encephalitis, but I didn’t know how devastating it can be,” Debbie said.

“He was one sick little boy, and there was no magic medicine to cure him.”Back at homeClayton was released from the hospital five days ago and returned to his Galesville home.Summer passed him by, and he came home a different child.

“He’s starting to heal and glad to be out of the hospital, but we had no idea it would affect him in so many ways,” Debbie said.Clayton has a wheelchair to use because he wobbles when he walks. When he does walk, he wears a football helmet without the face mask to protect him from a potential head injury.He easily loses his balance and already has fallen several times. He can’t ride his bike or climb or jump.

“We see a lot of deficits, and it’s been devastating to him physically, but he’s so much better and has made so much progress the last 10 days — and that gives us hope,” Debbie said.Clayton has trouble as well with coordination, speech and memory. He experiences mood swings.“He’s very frustrated,” Mike said. “He knows something happened, but he can’t find the words.”Clayton is taking seizure medication and other drugs to help his recovery, and he has received extensive therapy.When he enters first grade at Galesville Elementary School, Clayton will receive physical, occupational and speech therapy, along with other assistance.

“I’m happy how he’s doing and very hopeful he’ll be much better a year from now,” Debbie said. “We feel we have a different boy, but we love him just the same.”Logging the illnessDebbie kept a journal throughout her son’s illness while she stayed with him at the hospital.It all began July 11 when Clayton was tired and had a headache. The next day he was vomiting, so Debbie took him to the urgent care department at Gundersen Lutheran’s Onalaska Clinic.“I noticed something different — the staring spells, and he was real lethargic,” Debbie said.

By the time he saw a doctor, Clayton had improved. He went home, rode his bike and played with his friends.“The next day (July 13), he woke up crying and he said his legs don’t work, and he had a blank stare,” Debbie said.

Debbie and Mike again took him to urgent care in the Onalaska clinic. “He could hardly walk, and he was staring off to the side,” Debbie said. “Within five minutes of getting to the clinic, he started having seizures.”He was hospitalized for five days.Three days after his release, he had another seizure July 22 that lasted more than five minutes.Back at the hospital, another seizures lasted five hours and took six medications to stop. Clayton was sedated and on a ventilator at Gundersen Lutheran.“I thought I might lose him,” Debbie said.

“I told a nurse, I needed a miracle, and the nurse said, ‘They happen all the time.’”Clayton also had an airway obstruction and couldn’t breathe for a short time, requiring emergency surgery, she said.“There are not words in the English language that are adequate enough to describe the horror and terror of watching your child have a seizure lasting five hours or watching helplessly as your child is unable to breathe,” Debbie said.

His illness left Clayton confused and hallucinating as well.“He has no experience to relate to a seizure,” Debbie said. “During the worst of it, he doesn’t remember. He knew something happened.”The diagnosisDoctors first suspected the West Nile virus had caused Clayton’s encephalitis.“I thought, ‘At least it’s not La Crosse encephalitis, that is so much more worse for a child,’” Debbie said. “But then encephalitis was confirmed.

It was a relief that we knew what it was.”Clayton became the first 2008 case of encephalitis in the La Crosse area.Debbie said she and her husband told their son a mosquito had caused his illness.“We told him it was unusual, and that it would never happen again,” he said. “We don’t want him to be afraid to go outside, and he hasn’t been.”

Dave Geske, mosquito control officer for the La Crosse County Health Department, didn’t find the encephalitis-carrying mosquitoes on the Solberg property but did find them in tires in a dump area not far away.“We’re glad Clayton is doing as well as he is, and we’re thankful for all the prayers and support of friends and relatives — and the great medical care he received,” Debbie said.“But I can’t look at life in the same way now,” she said.

Saturday, August 23, 2008

A company's vitamins caused seizures in customers

Over the years, a Woodstock company’s fruit-flavored vitamin supplement gained a loyal following. Customers swore it made them healthier and their testimonials persuaded friends and family to take it, too.

They never imagined it would be the cause of bizarre and frightening symptoms that stumped their doctors.

Felicia Blasingame of Acworth said she suffered intense nausea and threw up for weeks, but she kept taking Total Body Formula daily because she felt she needed the nutrients. Her knees became so painful she had to drop a ballet class, she said, and her long hair fell out in clumps.

TOTAL BODY FORMULA RECALL

Products covered by the recall, announced in March:
• Total Body Tropical Orange -- lot nos. 4016801, 4024801 and 4031801
• Total Body Peach Nectar -- lot nos. 4016802 and 4031802
• Total Body Mega Orange/Tangerine -- lot no. 4031803

Consumers should stop taking these products and consult a health professional if they've experienced adverse reactions.

To report an adverse reaction to a dietary supplement or drug:

FDA's MedWatch program at 1-800-FDA-1088 or online at www.fda.gov/medwatch/how.htm

To learn more about recalls and safety alerts involving dietary supplements and other FDA-regulated products:www.fda.gov/opacom/7alerts.html

At least 197 people in a dozen states — 53 of them in Georgia — were sickened earlier this year after taking the liquid supplement Total Body Formula. Their hair fell out in clumps, their fingernails fell off. They suffered nausea, vomiting and fatigue. Some had disabling joint pain, according to the Centers for Disease Control and Prevention and state health officials.

Doctors treating 21-year-old Felicia Blasingame of Acworth this spring first thought she had the flu, then tested her for everything from parasites to lupus to rheumatoid arthritis, trying to figure out what was causing her nausea, seizures, knee pain and hair loss, she said.

Edgar Gurley, 78, of Marietta said he went from being active and healthy to suddenly in January battling a cascading array of symptoms, including diarrhea, fatigue and confusion. Gurley said doctors struggled to explain why his blood chemistry and thyroid levels were out of whack, his kidneys were failing and his hair was falling out.

As their symptoms worsened, Blasingame and Gurley said they continued to take their daily 1-ounce dose of Total Body Formula, thinking it was critical to their health.

Yet several batches of Total Body Formula and Total Body Mega Formula contained hazardous amounts of the mineral selenium — up to 40,800 micrograms per serving, 200 times the amount listed on the product’s label, according to the U.S. Food and Drug Administration.

The FDA is still investigating how this happened, and state health officials are still tallying the human toll.

Because of several pending lawsuits, lawyers for three companies involved in the manufacture and sale of Total Body products declined to discuss what happened.

3 FDA warnings

Total Body is one of more than two dozen dietary and herbal supplements that in the past year have been the subject of product recalls or FDA warnings because of various safety issues.

Officials at the Council for Responsible Nutrition, an industry group that represents major supplement companies, said problems such as those with Total Body Formula or recalls involving tainted products are rare.

“The overwhelming majority of dietary supplements on the market are safe and they do what they claim to do,” said Andrew Shao, the council’s vice president for scientific and regulatory affairs.
Problems with Total Body Formula products began in January as the first victims fell ill, but health officials were unaware for two more months. Alarm bells went off in early March after a Florida chiropractor notified state health officials about a cluster of patients with unusual hair loss, muscle cramps, nausea and diarrhea. All, it turned out, had used Total Body supplements.

“If he hadn’t said anything to anybody, we might not have known about it,” said Roberta Hammond, the Florida Department of Health’s food and waterborne disease coordinator.

On March 27, the FDA issued the first of three warnings, advising consumers not to use Total Body Formula in tropical orange and peach nectar flavors and Total Body Mega Formula in orange/tangerine flavor.

Tests by the FDA found the supplement contained high amounts of selenium as well as levels of chromium that were 17 times higher than recommended. Total Body recalled 1,484 bottles of the product from the market. The symptoms users experienced are signs of selenium toxicity, the FDA said.

“Some people have been pretty debilitated by this,” said Paul Melstrom, a CDC Epidemic Intelligence Service officer assigned to the Georgia Division of Public Health.

Severe joint pain and muscle cramps have caused people with physically demanding jobs to miss work. “That’s been a big issue with some folks,” Melstrom said. People who already had arthritis were particularly hard hit, he said. “A few found it very hard to even walk around.”

Others have been traumatized by going bald or losing their fingernails, he said.

State officials continue to track the progress of Georgia’s 53 known cases.

Melstrom is in the process this month of doing a third survey to follow up on checks made in April and June.

He has found that as time has passed and the product has left Total Body users’ systems, some symptoms have improved while others have worsened.

When he made his last round of calls in mid-June, the number of people who still suffered from nausea, vomiting and diarrhea had dropped dramatically since he first interviewed them in the spring. Fewer people had joint pain, but still more than half were affected.

The number of people reporting hair loss increased from 63 percent to 81 percent, he said. Those reporting fingernail discoloration or loss increased from 45 percent to 63 percent. These increases are to be expected because it takes longer for selenium to reach hair and nails, which have little blood flow, Melstrom said.

New regulation

Nobody knows how many consumers are harmed each year by dietary supplements. A recent study of 275 calls to a California poison control center about dietary supplements concluded that most adverse reactions are likely minor. But the study found that moderate to severe reactions, even death, occur, especially involving products containing stimulants such as caffeine and yohimbe.

A new regulation that took effect late last year requires for the first time that supplement companies notify the FDA about customer illnesses. But they only have to report serious, life-threatening or deadly events. Still, in the first six months of this year, supplement firms have filed 368 of these mandatory reports, the FDA said.

Most of the symptoms experienced earlier this year by users of Total Body Formula supplements — hair loss, nausea, joint pain and the like — would not qualify as serious enough for mandatory reporting, FDA officials said.

Despite health alerts sent out by the FDA and the CDC, Blasingame and Gurley and their doctors remained unaware throughout the spring that federal officials had an explanation for the illnesses.
Gurley — who had been to numerous specialists and had met with a surgeon about removing his thyroid — said he didn’t learn of the Total Body recall until late April when he went back to a Marietta health food store to get another bottle before he ran out.

Blasingame didn’t know there was a problem with the product until May — after numerous doctors’ appointments, a trip to the hospital for seizures and invasive gastrointestinal tests. She was in the office of a new doctor, a dermatologist, seeking a second opinion about why her long hair was falling out by the handful. The doctor had seen the alerts and asked her whether she took the supplement.

“At first I was really relieved to know the reason for everything that was going on,” Blasingame said. “After that, I got really angry because this was something that could have been prevented.”

Blasingame and Gurley have sued Total Body Essential Nutrition, the supplement’s seller. They and consumers in several other states also have sued two other firms that manufactured the product for Total Body: TexAmerican Food Blending of Hot Springs, Ark., and Wright Enrichment of Crowley, La.

Total Body Essential Nutrition only markets and sells the product, said Rod Cate, an attorney for the company. “They have nothing to do with the manufacturing process. [Total Body] relies upon the manufacturers to do it correctly,” he said.

No treatment

Wright Enrichment attorney Dino Gankendorff said the company denies any liability and stands behind its product. An attorney for TexAmerican declined to comment.

Jennifer Thomas, enforcement division director in the FDA’s Center for Food Safety and Applied Nutrition, said she can’t say what the agency’s investigation has found so far.

There’s no treatment for selenium or chromium poisoning, federal health officials said, and symptoms are expected to go away on their own over time. But recovery will vary depending on how much of the product a person consumed and their underlying health problems.

Blasingame says she’s no longer nauseated, her energy is returning and her hair is growing back. But she worries whether there’s been any long-term damage to her liver or kidneys.

Gurley said he continues to suffer serious health problems that he blames on the product.

“I am very close to having to go into dialysis,” said Gurley, whose doctor is checking his blood every two weeks. Kidney failure can be caused by excessive consumption of chromium.

Gurley said he’s lost the ability to drive and suffers from continued gastrointestinal problems that make it impossible to sleep or go to the American Legion hall to play cards with his buddies.

While he worries about his own future, he fears there may be others who are still taking the product. Each 32-ounce bottle contained enough doses for a month. “I’m sure there are people who still don’t know,” he said.

Seizures are symptoms of strokes in foetuses and babies

Noticing that her daughter, Noelle, didn't reach with her right hand, Judy Bergman assumed the infant was left-handed. But an MRI taken when Noelle was 7 months old confirmed that she had suffered a stroke, most likely before she was born. "I had never heard of a child having a stroke," said the Grayslake mother of two, recalling her shock.

She remembers thinking: "What is the future going to hold? What are her challenges going to be?"The American Heart Association last month issued guidelines to physicians for the first time on the diagnosis and treatment of stroke in infants and children. The group said that strokes are far more common in children than previously thought and that the causes, risks and symptoms differ greatly from those in adults.The guidelines were developed because early diagnosis and therapy are critical to helping children recover the best they can.

'Challenges'Childhood strokes are not increasing in prevalence, doctors emphasized. Instead, improved knowledge has led to greater recognition of it. For example, doctors now believe that cerebral palsy and intracranial bleeding are different forms of strokes.

And though a stroke can be devastating medically, researchers are finding that children have greater potential to recover and adapt than adults because of the plasticity of their brains, said Susan Levine, a professor of psychology at the University of Chicago.For example, a stroke that injures the left hemisphere of the adult brain typically causes problems with speech.

Children, on the other hand, continue to acquire language skills, although language development is usually delayed, Levine said."Up until age 13, there is the ability to transfer language processing from the left to the right hemisphere of the brain," said Dr. Deborah Gaebler-Spira, director of the cerebral palsy program at the Rehabilitation Institute of Chicago. "So our anticipation of recovery of certain very distinct brain functions is much more optimistic for children."

Most children suffer strokes on one side of their brains (Noelle's was in the left hemisphere). The most common risk factors are sickle cell disease and birth defects of the heart.At least half of children who have strokes are left with residual impairment or disability, said Dr. Jose Biller, guidelines co-author and chairman of neurology at Loyola University Chicago Stritch School of Medicine.

As part of a research project funded by the National Institutes of Health, for five years Levine has been studying a group of 40 children as young as 14 months who have had a stroke and 60 children who have not. The researchers videotaped interactions between the children and their parents.So far their research suggests that for children who have had a stroke, "there are slight delays in getting language off the ground, but their progress is pretty similar to the typically developing children," Levine said.

The researchers will continue to follow the children to determine if they have difficulty developing the more complex language skills needed to succeed in school.About 10 in every 100,000 children in the U.S. suffer a stroke in a given year. The risk is greatest in the first year of life, particularly in the first two months.Only people older than 65 have a higher stroke risk than babies younger than a month, said Dr. E. Steve Roach, chairman of the task force that developed the American Heart Association guidelines. Roach is neurologist in chief at Nationwide Children's Hospital in Columbus, Ohio.

SeizuresIn newborns and babies affected in utero, the first symptoms of a stroke often are seizures that involve a single limb. Such seizures are so common that stroke is believed to account for about 10 percent of seizures in full-term newborns, Roach said.Bergman mentioned Noelle's preference for her left hand to the child's doctor during a routine exam.

The MRI diagnosed the stroke. (Children generally do not show a hand preference before age 2.)Noelle, now 5, has been undergoing physical and occupational therapy, and recently completed speech therapy. Casts, and later braces, were placed on her legs to increase her range of motion and correct her gait.

Her biggest challenge now is improving her limited use of her right hand.Said Bergman: "When we started on this journey I was shocked. I was heartbroken. ... Now I think because I see how well she's doing, I know truly in my heart, she will be able to do anything she wants to do."

Young boy battled seizures caused by drunk driver

On Sept. 17, 2005, Michael Hensley, 12, called his mother to tell her that he and his nine-year-old friends Joseph Evans and Dustin Davis were on their way home for a sleepover.

After hanging up Tami Hensley went to the end of the driveway to look for the boys' bikes.


They never came.


She got worried and called Michael. No answer. After a few more unanswered calls, she called again and got a pickup. All she could hear was someone saying, "Son, you've got to lay still."
Tami and husband, Blake hopped in their car and headed out to find their son. One street away from their home, they pulled up to every parent's worst nightmare. Blue and red lights cut through the night air and lit up the autumn trees.

Blake stopped the car and jumped out.

"I went right by Michael," he said. "I'm his father and I didn't even recognize him."

Michael and Joseph had been riding a bike around 8 p.m. when a drunken driver hit them. They went flying - both more than 70 feet across Isley School Road in the northern part of the county.
Dustin had been a little bit further ahead on another bike, but heard it happen. He rushed back to pull the boys out of the street and went for help.

Helicopters were called in to fly both of the boys to Duke University Medical Center. Paramedics attempted to stabilize them for transport. Blake helped where he could while a firefighter calmed down Tami away from the chaotic scene.

Michael started seizing. It took all of the firefighters and Blake to hold the boy down, but the seizure still picked them off the ground.

"After the seizures, I couldn't tell if he had died or not because he was so still," Blake said.
It took a while for paramedics to prepare Michael for the flight. They warned Blake that Michael might not make it to Duke.

Blake fought those thoughts and held out hope. Finally, the helicopter took off and the Hensleys drove to Durham to wait for news.

Meanwhile, their preacher and other family had a prayer circle for the boys.

"I think that was what saved him," Tami said, choking back the tears. "God was with him."

Michael was in intensive care for three days and was moved to a regular room for another two. He had two skull fractures, a concussion, a collapsed lung, broken teeth, multiple road rashes on various parts of his body. There were stitches in and around his mouth, on his chin and on his elbow and a bruised eye that was swollen shut. He had combative seizures.

Joseph was also taken via helicopter to Duke with serious injuries from the accident, but made it through the ordeal. He is back on the honor roll at his school with no major continuing health problems.

Kathy Lail had hit the boys, but thought it was a deer. She told authorities that she got out to look for the deer, but it was nowhere to be found so she thought it ran off. She went to her sister's house with a shattered windshield and a mangled hood. They returned to the scene a little while later and she turned herself in to police.

Authorities determined her intoxication level at the time of the accident was .12. She pleaded guilty a year after the accident to driving while impaired, driving with a revoked license, and two counts of felony hit and run.

"I think maybe the courts are too lax on drunk drivers. It is too easy for them to get back to driving," Blake said, citing the fact she was already on a restricted license for a prior DWI. "I think it is too lenient. She almost killed two kids ... I think she got a paltry sentence."

She was released in March after serving 19 months at the North Carolina Correctional Institute for Women in Raleigh. She was also ordered to pay $17,217 in restitution to the families, but that doesn't even begin to cover their medical bills. Tami said the bills are more than $100,000.

"She got the least amount of insurance she could have with coverage for $30,000 on one person," Blake said as he thought through all the bills they have paid. They received $20,000 for uninsured motorists, but they've had to pay everything else. "I just feel like she should have been responsible for whatever wasn't paid, but it doesn't go that way and the bills are ongoing."

THREE YEARS LATER, Michael is doing better, but still has painful reminders of the accident every day.

He has special $1,000 glasses for double vision, which help, but don't eliminate the problems with his eyes. Words on white paper appear to move, so everything he reads must be on gray paper. He sees a specialist at Duke and another from Colorado.

He must go to the McCauley Family Learning Center twice a week, adding up to $400 a month. He was in 7th grade when the accident happened, but it put him back at a 5th grade level. Now he is going into 10th grade and is only now up to a 7th grade level. He also has an individualized education plan at school for the traumatic brain injury.

He has caps over the broken teeth, but those may have to be replaced with fake teeth because the nerves were showing when he got the caps. He also has a large scar under his chin, as well as on his hands and knees.

Tami has estimates of how much the teeth would cost if necessary, as well as surgery to minimize the scars. The estimates are stuffed in a thick leather binder with all the reports, bills and even pictures to remind Tami how lucky they were.

"You look at the pictures and think about where he is now and you just realize how lucky he was," Blake said. "How lucky we all were."

He said she could have gone further down the road and taken out a family.

"We are lucky the way it went," he said. "We didn't lose anybody."

ALTHOUGH IT HAS been a rough three years, Tami and their daughter Kristal, 18, they said they have forgiven Lail.

"I think I've kind of mellowed a bit towards her," Tami said as she thought hard about the past few years. "I just hope that maybe she did learn a lesson. Maybe she's not drinking anymore. Maybe she's getting her life together."

Michael's feelings toward Lail are more complicated.

"I'm mad because she did something stupid," he said. "I'm mad that she is making my family go through so much pain."

Lail could not be reached for comment, but the Hensleys are hoping that their story will help others think twice before getting in the car after drinking.

They also said they will never forget all those who helped Michael get to where he is today, including North Carolina State Highway Patrol Trooper S.W. O'Shields who went "above and beyond," and Vicky, a woman who lived near where the accident occurred, sat with the boys until authorities arrived.

As for Michael, he is onto a new challenge - battling the high school dating scene and getting his own license. He also has big plans for the future. He likes law enforcement, professional skateboarding, NASCAR or the Coast Guard as possible career options.

"He was always a good kid, but he is more humble now than he used to be," Blake added. "He is more laid back than most 15 year olds."

Friday, August 22, 2008

Brain surgery may change a little girl's life!

MILLIE Mackenzie has suffered debilitating epileptic seizures since birth.
Now pioneering brain surgery may be about to transform the five-year-old's life.Looking at her newborn daughter, Kelly Mackenzie felt the overwhelming love that any parent would. But she also had an uneasy sense that something wasn't quite right.

"All the prenatal scans were fine but when Millie was born, I had this feeling that something was wrong – I just knew," she says.Kelly had noticed that Millie was making strange grimaces and gagging reflexes, and so when she was very sick at six weeks old, Kelly and her husband Mark took her to their local hospital.

"At first they wanted to send us home, but eventually they sent us to the paediatric hospital in Kirkcaldy," says Kelly. "Millie had seizures throughout the night, and in the morning we were sent to the Royal Hospital for Sick Children in Edinburgh."Within the space of 48 hours, Millie had been given what Kelly describes as "every test you could possibly imagine" by the staff, whom the Mackenzies can't speak highly enough of for their support and keeping them informed.

An MRI scan revealed a small lesion on the front of Millie's brain and the initial diagnosis was a condition called schizencephaly, which is treated in the same way as epilepsy."At first, Millie was just a normal baby who had something similar to epilepsy," says Kelly. "But a lot of the drugs they tried with her had such bad side-effects.

They made her lethargic, for example. Then we started noticing that in terms of her development, she just wasn't reaching the milestones she should be."The Mackenzies found that their daughter would learn new skills, such as how to feed herself, or learn new words, but then forget them after a few days of bad seizures. She was also unable to learn how to walk and had to use a wheelchair.

When Millie was four, the Mackenzies returned to the Sick Kids hospital for another scan. "We went along never dreaming that things would change," says Kelly, "but the doctors got in touch and said, 'We're so sorry, the old scanner wasn't picking it up so clearly, but it's not schizencephaly'." Millie was diagnosed this time as having epilepsy with developmental delay, and her parents were told that she might be a candidate for brain surgery.

The Mackenzies knew little about epilepsy or seizures before they had Millie. Epilepsy is the most common neurological disorder in childhood, affecting one in 200 children. It's not a single condition – there are about 30 types of epilepsy and nearly 40 types of seizure, and it can affect anyone, at any age. When epilepsy happens in infancy, the long-term effects can be devastating, resulting in brain damage, developmental delay and behavioural problems.

Despite what her family has been through, Kelly remains positive, and Millie is a happy five-year-old who has a gang of good friends and a busy social life. She has started at Calaiswood School in Dunferm-line, which provides specialist education for children who need extra support. "I don't know where I'd be without them," says Kelly.

"They pick up on every child's individual needs. Millie's now attending the mainstream part of the school two afternoons a week because the staff realised Millie needs to be around talking peers. And these kids are not intimidated at all – they treat her as one of them."While some families of children with epilepsy struggle to find support, it's clear the Mackenzies have a strong network of people who dote on their daughter.

"It's done so much for us as a family," says Kelly. "Robyn, Millie's big sister, is now trying to work as a supply helper in the school."We were flung into a world of special needs; you have no choice, you know nothing about it and at first you think it's a nightmare. And now it's become a great world and I've met some wonderful people. It makes you re-evaluate what's important in your life."

When brain surgery was suggested, Kelly says she and Mark initially dismissed it immediately. They were terrified at the thought of their daughter undergoing surgery. But, as they learned more about the procedure and spoke to doctors, they realised it might be a wonderful opportunity for Millie.The family went to Great Ormond Street Hospital in London, Europe's largest epilepsy surgery centre, where they met a team of specialists. "They all agreed that, yes, this wee girl has got the potential to learn," says Kelly.

After much soul-searching, the Mackenzies decided it would be selfish not to let Millie undergo the operation. "They've given us a 60% chance of her never having another seizure again," says Kelly, "with a further 20% of greatly reducing them."The family are now preparing for a final appointment with the Great Ormond Street team and are waiting for a date for the operation. "If they were to phone me and say bring her down next week, I'd be so happy," says Kelly.

"That sounds crazy that I'm happy for my daughter to get brain surgery, but I feel this is the start of Millie getting a new chance at life. Epilepsy can be soul-destroying and heart-breaking, but it's not the end of the world."Great Ormond Street Hospital is fundraising for a new clinical building, which will allow it to treat more children in modern facilities.

To learn more or donate, visit www.gosh.org or call 0207 239 3000.For more information about epilepsy, contact Epilepsy Scotland at www.epilepsyscotland.org.uk or telephone 0808 800 2200.the facts¥Epilepsy is the most common neurological disorder in childhood.

It affects one in 200 children. Of these, as many as 30% continue to have seizures as well as a range of related disabilities, including learning, physical and emotional difficulties.

In the UK, epilepsy affects more than 75,000 children and young people.

It will cost £15 billion to treat the current UK population of children with epilepsy during their lifetimes. This figure excludes social services and educational costs.

Woman can surf but not take a bath, due to seizures

History student Bex Dawes is a keen surfer, who loves nothing better than taking her board out and catching some waves.

But despite her love of water Bex, aged 21, from Newport, Gwent, is unable to take a bath.
For Bex has epilepsy and has an average of three seizures each day, when she will blank out for seconds at a time.

Most of the time this causes few problems, but it could be fatal if Bex were alone, such as in the bath.

Dangers from epilepsy

"I was diagnosed when I was 13 with photosensitive epilepsy (sensitivity to light) after having three seizures," said Bex.

"It is triggered by flickering lights, TV screens, computers, etc.

People are always keen to say, you can't do this and you can't do that. Of course there are things that you can't do, but there are things you can.

Bex Dawes

"It is like I am having a bit like a day dream, but you come back really quickly.

"When you come back it is like somebody has switched the light back on. I can be talking to somebody and all of a sudden they can be saying something different and I haven't got a clue what they have been saying. I can be very confused.

"I have had near-misses crossing roads and I burnt myself ironing at home once - so I don't iron any more.

"When I was younger, someone had to sit with me when I was in the bath. Now I am older, I take a shower.

"I don't cook alone, there needs to be someone there."

Light sensitivity

Bex says, however, that she has not had a grand mal seizure - a large seizure affecting the whole brain - for a couple of years.

She is getting better at controlling her triggers by eating better, not getting overtired, avoiding flickering lights and wearing sunglasses to minimise the effects of light sensitivity.

And she says she is gradually managing to do more by adopting a sensible outlook on life.

"The websites and leaflets I had growing up were very negative about it. I found there are ways of doing things - not everything was restricted.

Bex is learning to avoid her triggers

"I was told I could never swim or travel alone. I was told I could never do anything alone.

"I found that quite intimidating at first.

"I do not get a lot of time alone. Most of my time is spent with people, but I have taken up surfing and can do this provided there are people around.

"Of course there are things that you can't do, but there are things you can."

New website

Keen to get her message across to others, Bex has told her story on the newly-launched epilepsy section of website Youth Health Talk, which aims to help young people learn about their health from their peers.

Dr Ann McPherson, medical director and co-founder of Youth Health Talk and an Oxford GP, says the site is a valuable resource for young people wanting to hear about the experiences of others.
"It gives voice to young people with epilepsy and presents their real experiences. Learning from others in a similar situation can bring so much hope and encouragement and above all, young people with epilepsy can see that they are not alone."

The site features 41 young people talking openly about all aspects of living with epilepsy, including diagnosis, symptoms, medication and side effects.

Among the topics discussed are school studies, relationships and sex.

Ulla Räisänen, senior researcher on the site, says it is filling a gap in provision.

"There is a lot of information out there, but young people find it difficult to find the information about their particular type of epilepsy - there is such a range - they found it difficult to see what applied to them.

"There was also a lack of awareness in the ways it could affect their lives."

Margaret Thomas, of the National Society for Epilepsy, said it had worked closely with Youth Talk to create the site, and said it would be a great resource.

"Epilepsy is a much misunderstood condition which is still often highly stigmatised. A diagnosis can have a dramatic impact on every aspect of a person's life.

"This site allows young people, who are sometimes quite isolated by the condition, to gain an insight into how other young people with epilepsy are feeling and how they are dealing with situations in their lives.

"This can be enormously helpful in enabling young people to come to terms with having epilepsy, helping to make them feel less isolated and more like any other young person."

Sacrifices made in the name of love...and well worth it!

When she falls, she falls utterly.

She spills to the floor like a marionette, her strings suddenly severed.

Brooke Bee is a 3-year-old Phoenix girl with epilepsy so difficult to manage that her family sacrificed everything in a desperate attempt to make her healthy.

Her father quit his job. His girlfriend, who helps raise her, quit hers, too.

They went through their savings and borrowed until their 401(k)s were bare.

They sold their favorite possessions on eBay to pay for gas and groceries.

Brooke's seizures were so frequent - 50, 70, 80 times a day - that they attached her to a harness with a leash so that when she fell they could catch her before she hit the ground.

The leash became the embodiment of what it can be like to love a child who is so sick. You give up everything. You are always attached. You can never let go.

"I'm losing everything I had," Brooke's father, Brian, said. "It's not because of my daughter. It's because of what happened to her. It's all just material. It's replaceable. She's not."

'Devastating' seizures

One year ago, Brooke was in perfect health. She was fast and funny. She loved princesses. She could sing the alphabet.

Then, without warning, she had a seizure. Every muscle in Brooke's body contracted. She lost consciousness.

Then she had more.

Brian, who was never married to Brooke's mother and has sole custody, was horrified the first time he saw her seizing.

"It's heart-wrenching. It freaks you out," Brian said. "I just wanted to know why it was happening."
When a brain is functioning normally, millions of tiny electrical charges pass between nerve cells and to all parts of the body.

When someone has epilepsy, the pattern is interrupted by intense bursts of electrical energy.
Usually, these disruptions happen in one area of the brain.

In Brooke's case, nerve cells throughout the entire brain crackle with energy. She collapses because her brain overloads. "They are a devastating type of seizure," said Dr. Korwyn Williams, Brooke's epileptologist at Phoenix Children's Hospital.

Brooke spent October and November at Phoenix Children's as doctors tried to help her. They were hoping to control her seizures with medicine.

It wasn't working.

A harness and a leash

Epilepsy and seizures affect more than 3 million Americans of all ages, according to the Epilepsy Foundation.

More than 6,000 children in Arizona have the disease. In some cases, the cause is tumors or brain injuries. But in 70 percent of new cases, no cause is apparent.

Finding the right combination of drugs to control seizures is not easy. The drugs react to each other, and the body reacts to each drug.

So when Brooke went home, around Thanksgiving, her treatment was still a work in progress.

The most immediate problem for Brian and his girlfriend, Jessie Essenburg, was that she just kept collapsing. She was cutting herself on corners of tables, banging her head on the ground, chipping her teeth.

When Brian and Jessie would grab her arm to catch her, they were hurting her shoulder.

Reluctantly, they fitted her with the harness and the leash.

"I don't like it. It's a leash," Brian said. "But it works. And if it helps Brooke, then so be it."

Months after her diagnosis, Brooke's seizures were becoming more frequent.

In June, when asked if Brooke was going to get better, Dr. Williams answered simply. "I don't know."

'Like she had been shot'

Brooke's illness began to take over Brian's and Jessie's lives.

After a seizure, one of them would hold Brooke while she recovered. But the recoveries were taking longer.

She would rest in their arms with a vacant stare.

Some days a seizure blended into the recovery time, which blended into the next seizure.
"Look at Daddy, Brookie. Hey, hey, baby girl," Brian would say inches from her face. "You gotta snap out of it, baby."

Corners were taped with cardboard. Edges were covered on tables. A piece of plywood was rigged between the banisters at the top of the stairs to keep her from falling down them.

"She's a direct danger to herself without constant supervision," Brian said. "It's 24 hours. Every day."

Of all the bad days, and there were plenty, one stands out.

Brian and his father were with Brooke in front of their home.

She had not had a seizure for hours, so they removed her leash. Brooke was feeling good and acting like a little girl.

"She was running to me," Brian said, looking at the ground. "She was 10 or 15 feet away, and she was smiling and laughing and saying 'Daddy.' "

Brian opened his arms.

"Then she was just gone. It looked like she had been shot."

Brooke fell hard, face-first, onto the street. Her front teeth broke in half.

"That was, I don't know why, the saddest day of my life."

At this point, Brooke was taking Lamictal, Depakote and Topamax to control her seizures.
But she was increasingly listless and frequently confused.

The simple act of getting her to take her medicine was becoming a two-person job.

Brian and Jessie realized that they could not work and take care of Brooke.

Brian, 23, was a claims adjustor for State Farm Insurance.

Jessie, 22, was a financial-aid adviser at the University of Phoenix.

"It's not like we were working at Jack in the Box," Brian said. "I was on my way. This was my career."

First Brian quit his job, then Jessie quit hers. "I love her like she was my own kid," Jessie said.

In a matter of months, they went from a young couple with two good jobs and a healthy little girl to a couple with no professional future and no income.

No matter how much they tried, hoped or wished, Brooke was not getting better. She was getting worse.

Running out of money

Brian and Jessie were now facing new pressures.

They were feeling isolated in their home with just each other and Brooke.

They were drifting apart from their friends because they had so little time and even less money.

They also began to realize that when they were spending all of their time and energy trying to make Brooke well, it was too easy to forget that she was still a little girl.

"We need to also raise her; she's a kid," Brian said. "You can't forget that with all of this, you can't."
The couple also were facing a very practical problem. They were running out of money.

They had a few years of savings in their 401(k)s, but once they tapped that money, it went fairly quickly.

Gradually, then suddenly, they needed money to pay for groceries and gas.

Brian sold a collection of guns that he had started with his father. He also had a wall of guitars. He sold those online, too.

"You get emotionally attached to them," Brian said. "I sold my Martin acoustic. That was a great guitar."

Soon the couple were running out of things to sell.

"All through eBay," Brian said. "It's just stuff. I loved it. But what are you going to do? Now it's all gone."

Jessie's parents helped. They mailed dresses for Brooke and small amounts of cash when they could.

Brian's father provided a place to stay and would leave cash for Brian and Jessie periodically.
Brian's mother also helped by sometimes taking Brooke on weekends.

"Everybody throws down to help," Brian said. "It's a community. She's a special girl."

Through all of it, Brooke's condition did not improve.

Her condition, or perhaps her medicine, was giving her headaches that left her crying or, worse, just whimpering.

In mid-June, Dr. Williams presented Brian and Jessie a series of difficult options.

They could think about changing Brooke's diet to one very high in fats but with almost zero carbohydrates. The diet is radical and needs to be monitored full time, but there was a chance it would work.

They could change Brooke's medicines, but some of the options came with the risk of dangerous reactions.

The last option was brain surgery, which would remove the connections between the two hemispheres of Brooke's brain.

Brian and Jessie knew Brooke was nearing her limits.

So were they.

Looking for hope

The lack of progress was becoming overwhelming.

Brian and Jessie were tired and frustrated.

"This has got to get better," Brian said one afternoon with Brooke asleep on his lap. "This has got to get better. This has got to get better."

The couple decided to change Brooke's diet, but a dietitian would not be able to meet with them for weeks.

Dr. Williams continued to adjust Brooke's medications, looking for the elusive combination of drugs that would bring her seizures under control.

He had seen some initial success when Brooke started taking Lamictal. It was short-lived, but it gave him some hope.

Finally, something seemed to click.

On July 1, Brooke had just one seizure.

In the course of one day, she began to look more animated and involved. Her legs grew steady.
On July 2, Jessie and Brian quietly made a decision. That morning, they did not put on Brooke's leash.

She didn't need it.

There was not a long talk about it, Brian said. It just felt like the right decision.

"It was so great. I can't explain the feeling," Jessie said. "We went to the pet store, and she ran around looking at all the animals. It sounds small, but it was such a big deal. She was a little girl."
With an illness like this, it's hard to predict the future.

"She could easily relapse; we know that," Jessie said. "You just completely embrace the moment. I could explode from happiness."

On Tuesday of this past week, Brian began work again, as a claims adjustor at an automobile-insurance company.

Jessie will stay home with Brooke until she has been seizure-free long enough to be able to attend a day care or preschool.

Jessie already is allowing herself to think about a future when Brooke is healthy.

"Ten years from now, I promise you this," she said: "I'll think every single sacrifice was well worth it."
Brooke has started acting like a little girl.

She picks her own clothes. She picks her own movies. She asks lots of questions.

If she likes a person, she gives him a kiss - not on the cheek but on the lips. Then she laughs.

As this girl has re-emerged, Brian has realized that what he missed most of all when Brooke was sick, was Brooke.

"I was with her all the time - like, all the time - but I missed her," Brian said. "She stopped being the Brooke I knew."

Little girl goes home following brain surgery

A 6-year-old Texas girl is back at home after having half her brain removed in June, WJZ.com reported.

Jessie Hall, of Aledo, Texas, has Rasmussen’s encephalitis, a rare illness that eats away at the brain and causes seizures and reduced mobility.She left Cook's Children's Hospital in Fort Worth, Texas, where she had been recovering since late July, on Thursday and spent her first night at home, according to the report.The disease caused Jessie to suffer uncontrollable seizures and lose the use of her left arm.

Doctors removed the right-side of her brain at Johns Hopkins Children’s Center in Baltimore on June 11. The hospital does about a dozen of these surgeries each year.Her rehabilitation focused on training the left half of her brain to take over the functions once controlled by the right side, WJZ.com reported.Some paralysis and other side effects are expected from the surgery, but doctors believe it was Jessie's only hope for survival.

A low percentage of adults suffer from active Epilepsy

An estimated one percent of adults have active epilepsy, and many of them are getting insufficient treatment, according to a 19-state survey released Thursday.

The CDC study found one in six adults with active epilepsy and had recent seizures were not taking medication.

"This is the first time that we actually have data from multiple states," said Rosemarie Kobau, lead author of the Centers for Disease Control and Prevention study, in a telephone interview. "What we learned is that, among adults with active epilepsy, more than a third of them reported not seeing a specialist for their epilepsy, and that's really unacceptable."


A follow-up survey is planned to determine why so many people with seizure disorders said they had not seen a specialist in the past year, Kobau said.

"This is a highly specialized field," said Eric Hargis, the president and CEO of the Epilepsy Foundation, which collaborated with the authors of the study. "It's not possible to get state-of-the-art care" for the disorder from primary care doctors.

One in six (16.1 percent) adults with active epilepsy with recent seizures said they were not taking their medication and two-thirds (65.1 percent) said they had had more than one seizure during the prior month.

More than a fifth (20.4 percent) said cost was a barrier to seeking care from their doctor.

Epilepsy Foundation
Centers for Disease Control and Prevention

Access to high-quality care is key to quality of life, Kobau said. People with recurrent seizures face substantial impairments in their daily activities; many are not allowed to drive and, as a result, depend on public transportation. In some areas, particularly rural ones, that can present a barrier to full participation in life, she said.

That's not all. In addition to carrying stigma, people with epilepsy were more likely to live in households with the lowest annual incomes and to report being unemployed and unable to work.
According to the 2005 findings, 1.65 percent of the population said they had been told by a doctor that they had epilepsy or a seizure disorder, the report said. Half of that group (0.84 percent) said they had active epilepsy -- defined as having had one or more seizures during the prior three months or currently taking medication.

If the findings translate to the general population, that means a stadium filled with 60,000 people would contain 480 people with active epilepsy, Kobau noted, adding, "Epilepsy is not rare."
But that view was disputed by Dr. James King, a family physician in Selmer, Tennessee, and president of the American Association of Family Physicians.

"There are patients that can be managed fairly simply with seizure disorder," he said in a telephone interview. "In my own personal practice, I'd say that I can manage at least half, if not more, of the patients that have seizure disorder."

Many of the others are able to get by with just a one-time visit to a neurologist, said King, whose practice is 50 miles from the nearest neurologist, and 100 miles from the nearest neurologist who accepts Medicaid, the government program for the poor.

Health Library

MayoClinic.com: Epilepsy

"There's only a handful of patients that are managed in my area by the neurologist." He said financial barriers -- from insurance to the cost of anti-seizure medication -- are a bigger problem.
"If you can't afford to buy it -- which is what I run into with a lot of the seizure medicine -- it doesn't really matter" if patients see a neurologist or a family physician, he said.

Many patients, forced to choose between paying their light bill or taking their anti-seizure medication, choose the former, King said.

Epilepsy is a condition in which the normal activity of the brain malfunctions, causing recurrent seizures -- electrical storms in the brain -- that can be characterized by a range of symptoms, including sudden change in awareness, movement or sensation.

Each year, about 200,000 people in the United States are diagnosed with the disease, as was Supreme Court Chief Justice John Roberts after he suffered a seizure last year at his Maine vacation home.

"Many people with epilepsy do lead normal, productive lives despite the hardship of having this disorder," Kobau said.

The study, conducted by the federal government and published in the CDC's Morbidity and Mortality Weekly Report, estimates that 2.7 million people in the United States have epilepsy, and that it costs some $15.5 billion in medical care and lost or reduced earnings or productivity each year.

Hargis said the incidence of the disorder is expected to climb among veterans returning from Iraq or Afghanistan, where head injuries are common. "When you have a head injury, it's common for epilepsy to develop after a gestational period -- it could be a couple of months or it could be years," he said.

And the aging population is also expected to boost the incidence of epilepsy. Conditions of aging, such as stroke and Alzheimer's Disease, are also associated with a higher incidence of epilepsy.
The study was based on data from more than 120,000 adults in the Behavioral Risk Factor Surveillance System.

Febrile seizures rarely fatal!

The findings reported in Saturday's issue of the Lancet Medical Journal shows that about two to five percent of children younger than five will suffer at least one febrile seizure (convulsions caused by elevated body temperature).

But studies on the condition have been too small to estimate how many children die from fever-related seizures.

Saturday, August 09, 2008

Fever and seizures!

Even in high-risk children, death from febrile (fever-linked) seizures is rare, say Danish researchers who analyzed data on 1.6 million children.

Febrile seizure, a generalized convulsion caused by increased body temperature, affects 2 percent to 5 percent of children under age 5. About one-third of affected children have more than one seizure episode. Many parents fear their child is dying during a febrile seizure and are worried death may occur during subsequent seizures, according to background information in a news release about the study.

This study included almost 1,676,000 children born in Denmark between 1977 and 2004, who were followed from three months of age until death, emigration or Aug. 31, 2005. Among the children, there were a total of 8,172 deaths, including 232 deaths among the 55,215 children with a history of febrile seizure.

Overall, 132 per 100,000 children died within two years of a febrile seizure compared with 67 per 100,000 children without a history of the condition.

The duration of the fever episode seemed to matter, however. The death rate for children with simple febrile seizures (lasting less than 15 minutes and none recurring within 24 hours) was similar to that of children in the general population. In contrast, the death rate for children with complex febrile seizures (lasting longer than 15 minutes or recurring within 24 hours) was twice as high in the two years following the seizure than in the general population.

But the researchers emphasized that the overall risk of death among children with febrile seizures is small -- 2 deaths per 1,500 children, compared with 1 death per 1,500 children in the general population.

"Children with simple febrile seizures had a risk of death similar to the background population, whereas those with complex febrile seizures, febrile seizures triggered by a temperature below 39 degrees C, and febrile seizures occurring before 12 months of age had a twofold higher mortality lasting for about two years. The excess mortality was at least partly due to pre-existing neurological abnormalities and subsequent epilepsy ... Parents should be reassured that death after febrile seizures is very rare, even in high-risk children," the researchers concluded.

The study was published in this week's issue of The Lancet.

The U.S. National Institute of Neurological Disorders and Stroke has more about
febrile seizures.

Saturday, August 02, 2008

Nasal spray to cause seizures

Desmopressin intranasal spray has been linked to seizures in at least a dozen Australian patients, seven of which were children. Desmopressin nasal spray is often used to treat bedwetting in children.

Desmopressin is a hormone taken through the nose, by mouth, or given by injection to prevent or control the frequent urination, increased thirst, and loss of water associated with diabetes insipidus (water diabetes). Desmopressin is used also to control bed-wetting and frequent urination and increased thirst associated with certain types of brain injuries or brain surgery. Desmopressin works by acting on the kidneys to reduce the flow of urine.

Last year, the U.S. Food & Drug Administration (FDA) warned that certain patients taking desmopressin are at risk for developing severe hyponatremia that can result in seizures and death. Hyponatremia is an electrolyte disturbance (disturbance of the salts in the blood) in which the sodium concentration in the plasma is too low.

The warning came after the FDA reviewed 61 postmarketing cases of hyponatremic-related seizures associated with the use of desmopressin, including 2 fatalities. Thirty-six cases were associated with intranasal formulations of desmopressin, of which 25 cases occurred in pediatric patients. At the time of last year’s FDA alert, the agency said that the use if intranasal Desmopressin was no longer indicated for bedwetting.

Now, Australia’s Therapeutic Goods Administration (TGA) says it has received 68 reports of adverse reactions linked to the drug. There were 17 reports of convulsions and a further 10 of hyponatremia. The side-effects were mostly seen with the nasal spray formula.

“Of 12 reports of convulsions or hyponatremia following the use of desmopressin nasal spray, seven involved children under 13 years of age,” the TGA said in its latest adverse drug reactions bulletin. The product will not be removed from sale, but the TGA warned doctors to prescribe the product only when a bed-wetting alarm device has failed to work.

Seizures: New form of Valproic Acid was approved by FDA

The US Food and Drug Administration (FDA) has approved valproic acid (Stavzor) delayed-release capsules in 125-, 250-, and 500-mg strengths."The small size and soft gel capsule formulation of valproate should make this new product easy to swallow, which in my experience is critical to helping valproate patients start, and stay on, their medication," said Miguel Martelli, MD, a psychiatrist in private practice in Saint Marys, Georgia.

Valproate products should not be administered to patients with hepatic disease or significant hepatic dysfunction. In a clinical trial of valproate in elderly patients with dementia, some patients experienced somnolence, sometimes requiring discontinuation.Cases of life-threatening pancreatitis, some rapidly progressing to death, have been reported in both adults and children receiving valproate.

Valproate is contraindicated in patients with known urea cycle disorders. Administration of valproic acid and topiramate has been associated with hyperammonaemia, with and without encephalopathy.

Common adverse events (>5% incidence) associated with valproate in clinical studies were nausea, somnolence, dizziness, vomiting, asthenia, abdominal pain, dyspepsia, rash, diarrhoea, increased appetite, tremour, weight gain, back pain, alopecia, headache, fever, anorexia, constipation, diplopia, amblyopia/blurred vision, ataxia, nystagmus, emotional lability, thinking abnormal, amnesia, flu syndrome, infection, bronchitis, rhinitis, thrombocytopenia, ecchymosis, peripheral oedema, insomnia, nervousness, depression, pharyngitis, dyspnea, and tinnitus.

SOURCE: Noven Therapeutics, LLC

Service cat trained to help owner suffering from seizures

An article caught our attention this week because it's pretty rare to hear something about a service cat. In a February 4, 2008 article by Theresa Campbell for the DAILY SUN, a newspaper in The Villages, Florida, Campbell writes about Dusty. He is a Persian cat who belongs to Kathy McDonald. She has had seizures ever since being a teen.

Although she takes medication, sometimes the seizures still occur. That's where Dusty comes in.
Before McDonald is about to have a grand mal seizure, Dusty alerts her by licking her face. That's how she knows to sit down in a safe place where she won't be hurt.


Dusty is a registered service cat. Trained to walk on a leash, the cat wears a badge and accompanies McDonald everywhere. Dusty sleeps by McDonald's head at night, ever vigilant. In the article she says, "I heard about a lady who has a bird that can tell when she's going to have a seizure. The bird can talk and he says, 'She's doing it again.'"

McDonald calls Dusty her "feline angel." We agree.

Have you heard of or experienced animals, other than dogs, who perform healing services for people?

Mosquito Disease may cause seizures and brain damage!

Virginia health workers want you to be aware of a rare disease spread by mosquitoes. They confirmed a case of La Crosse Encephalitis in the Shenandoah Valley area.

They say the child that got the disease has since recovered. It can be fatal, but rarely. In fact, there are only about 70 cases reported every year nationwide, most of them children. Still experts recommend you be aware of mosquitoes, eliminate stagnant water and use insect repellent.

Dr. Kerry Gateley, Central VA Health District - "Overall it's not something for everybody to be worried about but I would say it's something for parents in particular to be aware of."

La Crosse Encephalitis involves an inflammation of the brain. Symptoms can range from headaches and vomiting to seizures and brain damage.

But sometimes the disease is so mild patients don't feel anything.

Strokes and seizures in children

Stroke is primarily a concern of older adults. But cases of childhood stroke are growing more common, the American Heart Association said Thursday as it released its first-ever guidelines for how to recognize and treat stroke in infants and children.

It’s among the top 10 causes of death for children.

Still, “most people, including physicians, don’t think that strokes occur in children,” said Dr. Jose Biller, part of the 11-member panel of doctors who drafted the guidelines.

Biller, the chief of neurology for Loyola University’s medical school, said doctors’ failure to recognize stroke in young patients can lead to delayed treatment, which increases the chances of disability or death.

The guidelines — published in the journal Stroke — detail several conditions, including sickle cell anemia, congenital heart disease and infections such as meningitis and chicken pox, that are possible risk factors for stroke in children.

Also, the symptoms of stroke in infants and children are different — and usually more subtle — than in adults. In newborns, who are more prone to stroke than older children, “the first symptoms . . . are often seizures that involve only one arm or one leg,” said Dr. E. Steven Roach, chair of the heart association panel.

The clot-busting drug known as tPA is the gold standard for stroke treatment in adults. But the panel doesn’t recommend it for kids outside of a clinical trial setting, because most of the research done on tPA involved adults, not children, Biller said.

And while it’s difficult to prevent an initial stroke, because that’s usually the first sign of trouble, Roach said it’s important that doctors “promptly recognize and diagnose a stroke because treating the cause reduces the likelihood of additional strokes.”

Ten-year-old Sideria Hendricks, who has sickle cell anemia, had her first stroke when she was 7. After a second one, the Forest Park girl began receiving regular blood transfusions to prevent further episodes.

Her mom, Vonetta Wright, said she “really wasn’t aware” a child could have a stroke.
“You expect it to happen to a grownup, not a child,” she said. “It’s terrifying.”

childhood stroke awareness wrote:

My name is Dawn Marie Perkins and my son had a stroke in utero. I would like to commend the ASA for it's very much needed recognition of pediatric stroke. It is my hope that this is just the beginning in getting what our children need, answers about causes, efficacy of treatments and implementation of preventative measures. I would also like to let families affected by pediatric stroke know about some wonderful resources:
www.chasa.org, www.hemikids.org, and www.KidsHaveStrokes.org.

CHASA was founded by a mom of an infant stroke survivor when there was literally no support or information out there. CHASA and it’s sponsored sites have been a lifeline for my family as well as families worldwide. CHASA also has set up an Infant & Childhood Stroke Research Fund and distributes awards to researchers dedicated to Infant & Childhood Stroke.

CHASA founded Childhood Stroke Awareness Day, which occurs on the first Saturday in May of each year. Three years ago and continuing, this day was recognized by the United States Senate.
I encourage families to also visit my awareness campaign site at www.childhoodstrokeawareness.org to learn more ways to help raise awareness in their own communities.

I feature a childhood stroke survivor each month and tell their story. We also have a photo gallery of infant & childhood stroke survivors.Please remember that infants have strokes, kids have strokes and even unborn babies have strokes…!!!!!!Dawn Marie PerkinsChildhood Stroke Awareness Campaign Coordinator

Dravet Syndrome and seizures affect 4 years old boy's life

If it weren't for the helmet he wears, you wouldn't think JJ Krentz was different from any other four-year old.

His mom, Tiffanie, describes him as rambunctious and high energy, always laughing with a big, bright smile.

But JJ also has Dravet Syndrome, a rare genetic disorder that causes seizures and cognitive delays. Tiffanie says JJ's symptoms first surfaced when he was seven-months old, and suffered a frightening, 45-minuted seizure. They were sent home, hopeful it was a one-time happening. But a little over two months later, he had another seizure and Tiffanie and her husband Kevin noticed his development had slowed down.

It would be another two years before they'd get the diagnosis of Dravet. Meantime, JJ's seizures increased. He'd often have several a day, and he spent a lot of time in the hospital getting tests.
Today, JJ takes four anti-epileptic drugs. He's getting help at Easter Seals Capper Foundation for his developmental delays, but the seizures still happened. Tiffanie and Kevin don't know when the next seizure might hit, and that is cause for concern. Tiffanie says people can fall from a seizure and suffer a brain injury, or they may suffer one in their sleep "and they don't wake up the next morning."

JJ's family is trying to raise $11,000 so they can purchase a dog specially trained to alert them when a seizure is coming on. Tiffanie says they won't be able to stop it from happening, but a warning will allow them to get him to a safe place and make sure his emergency medicines are prepared.

Plus, the dog would be a constant companion, providing an extra level of support so Tiffanie and Kevin can give JJ what any parent wants for their child - the ability to be the best he can be.

"We'll be able to provide him his own sense of independence and the ability to explore the world a bit more than he can now," Tiffanie said.


Friday, August 01, 2008

Huntingtons' Disease and seizures

A family has paid tribute to their "hero" who fought to the last after becoming the youngest person in the North East to be diagnosed with Huntington's Disease.

Steven Smith was just 13 when he was found to have the rare illness, which attacks the brain.The 25-year-old, from Abercorn Road, Farringdon, Sunderland, died last month, after a courageous 12-year struggle against the condition.Today his mum Jackie said Steven had suffered for such a long time, but fought bravely and never let it get him down.

She said: "He never complained. He was a hero. That's what we played at his funeral, Hero by Maria Carey, because he was my hero. He fought, he really fought."Steven was diagnosed with Huntington's Disease, which affects only a handful of people in every hundred thousand, after his parents noticed stark changes in his behaviour."

The condition, which usually affects adults, is caused by a faulty gene which damages nerve cells, causing gradual physical, mental and emotional changes.The teenager had become short-tempered and was getting into trouble at school, but parents Jackie and John Dixon could not understand why.It was by chance that Jackie, 46, finally found out what was wrong with her son.

While out shopping she saw Steven's biological father – who she had split up with before Steven was born – being carried out of a car in a wheelchair.She then learned the terrible truth. Both Steven's father and his grandfather had Huntington's Disease, a hereditary condition that can be handed down from parent to child.Steven's father was 27 when he developed the condition, and his father was even older. But Steven had a mutant strain of the illness and started displaying advanced symptoms when he was just 13.

Doctors originally told Jackie and John that it was not possible for Steven to have the disease, which has a 50/50 chance of being passed on, because he was so young. But tests confirmed he had Juvenile Huntington's Disease.

"I was devastated, but I knew we just had to try and keep him going as long as possible," she said."I had to explain to him how he came to have this horrible disease and try and do it in simple terms. I told him when a mam and a dad have a baby it gets so many toffees from each, and his dad had passed a broken toffee down to him. He never spoke about it again afterwards. He never spoke about how he felt. I suppose he knew he was going to die, but it was never mentioned."After his diagnosis, Steven left Farringdon School and transferred to Barbara Priestman School. He enjoyed going on trips and visits, and was given an award for his never-ending happiness."He was always smiling, right up until he died. He was always happy," said Jackie.Steven, who had one sister, Sarah, 20, a law and criminology student at the University of Teesside, was an avid film buff.

His parents said he loved holidays to Scotland, the Lake District and the Northumberland Coast, and said his favourite place to visit was Holy Island.Steven's condition continued to deteriorate and he spent the last four-and-a-half years in Victoria Lodge nursing home, where his seizures and hospital admissions became more and more frequent.Most people with Huntington's Disease eventually die from secondary illnesses like pneumonia. But Steven fought off these illnesses and seizures.

"Two weeks ago he had 22 seizures in six hours," said Jackie. "But Steven just kept bouncing back."Eventually Steven could no longer feed and simply did not have enough energy left to live.