Five years old girl suffers from seizures following bone marrow transplant

Bria Banks, the 5-year-old Detroit girl who received a bone marrow transplant last week from her 6-year-old brother, suffered two seizures last week -- causing minor brain damage -- but is returning to her usual, rambunctious self, her family said Tuesday.

Bria got the marrow transplant from her brother, Brandon, last Wednesday. She was diagnosed in September with aplastic anemia and Fanconi's anemia, both of which are rare blood disorders that attack the patient's bond marrow.

For any chance of survival, she needed a transplant.The brother and sister were featured in a Free Press story last week.After an injection of Brandon's marrow was given to Bria intravenously, both children were recovering well at Cincinnati Children's Hospital Medical Center, about 250 miles from home.

But then Bria began acting bizarre and looking ill, said her grandmother, LaTonya Edwards. "All we could get out of her was that she had a headache," Edwards said.That's when the first seizure hit.Another seizure soon followed, and Bria quit breathing.

Doctors revived and intubated her, putting breathing tubes down her throat; she was in the hospital's intensive care unit for about two days.An MRI later revealed both reversible and irreversible brain damage because of the temporary lack of oxygen.

Bria's mother, 25-year-old LaTisha Lockett, said Bria's seizures were reactions to medication; they weren't a sign that her body is rejecting her brother's marrow, she said."She's doing real good," Lockett said Tuesday. "She's back to herself, laughing and talking."Brandon, too, is keeping entertained while he recovers.

Deputies from the Wayne County Sheriff's Office drove to Cincinnati on Saturday -- bringing Edwards and Lockett's sister, Shawnte Lockett -- and delivered a TV, DVD player, PlayStation 3 and some videogames to keep him busy. That's on top of the many gifts donated by employees of Olympic Steel Co. of Detroit, who adopted the family for the holidays.

Lockett said Brandon is expected to return to his grandmother's East Ferry home in Detroit the first week of January.

Christmas, she said, was a blessing. The family received many donations and cards and ate food provided by the children's charity Ronald McDonald House."For the kids," Lockett said, "it was real nice."

Dog is both guide dog and trained to deal with seizures

Harley pays no mind to the saying that you can't teach an old dog new tricks. The black Labrador retriever, who turns 7 years old next month, has learned more than tricks - he is trained both as a guide dog and as a dog that can respond to seizures suffered by his handler.

Trainers at Great Plains Assistance Dogs Foundation in Jud and at Guiding Eyes for the Blind Inc., of Yorktown Heights, New York, call it a first, and a happy collaboration.

Harley spent several weeks last year at Great Plains in Jud, a tiny southeastern North Dakota community of about 75 people that's surrounded by farm fields. It's where Harley added to his guide dog repertoire the ability to activate alert switches and radios through repetition, treats and praise.

Because of Harley's age and the differences in training methods for dogs working with people who are blind and people who suffer seizures, trainers at first doubted he could be both a guide dog and a seizure dog.

Not Jes Smith, who has been paired with Harley since 2002.

Smith, 20, of Winston-Salem, North Carolina, has been blind since the age of 5. He had to drop out of college when he began having epileptic seizures in 2004.

"The scary thing about epilepsy is you have no control over anything," Smith said.

Doctors told Smith's mother, Pam, "If he were my son I would not let him go to school," he said. "They suggested somebody be by my side 24/7."

Smith knew that somebody was Harley.

"I was willing to take the chance on Harley," Smith said. "I was kind of desperate, obviously. This was a matter of life and death for me. Something had to be done."

Late last year, trainers from the facilities in North Dakota and New York met with Smith and Harley at their North Carolina home.

Micheal Goehring, executive director of Great Plains Assistance Dogs, said he wasn't sure if Harley, who was 5 years old at the time, could be taught new tasks.

"I was skeptical until I met Jes and Harley. At that point, I knew it was doable," Goehring said. "I know what I need in a dog and I know what I need in an individual."

Harley's intelligence and his handler's bond with the dog made the team a good candidate for the cross-training, Goehring said.

Trainers from New York and Jud worked with Harley at both locations before the dog was returned to Jes several weeks later.

Guide dogs are taught to keep their handlers safe by stopping at changes of elevation, stopping at each block and avoiding obstacles, said Kathy Zubrycki, director of training at Guiding Eyes for the Blind, which places about 160 dogs a year.

Seizure dogs are trained to respond to handlers' emergencies.

"I don't want to say we were skeptical, but it had never been done before," Zubrycki said of Harley's training as both a seizure dog and guide dog. "We all went into it with an optimistic attitude."

Goehring, a former chef and hunting dog trainer, has known the power of canine companionship since he was a boy. He used to sneak his small dog under his jacket into a nursing home to comfort an elderly friend who had to give up his own pet.

"I was only 10 years old then, but I still remember the emotion," Goehring said.

Great Plains Assistance Dogs graduates up to a dozen service dogs on alternating years, Goehring said.

It has placed 116 dogs in 41 states, and two in Canada, since Goehring helped open the facility in 1990.

Along with teaching dogs to respond to seizures, Great Plains also trains its canine pupils to perform other duties for people with disabilities. The dogs can open doors, hit or pull emergency switches, pull shopping carts and wheelchairs, or fetch items as small as a dime off the floor.
Harley is now able to push a pedal in Smith's home that can make an emergency call if Smith has a seizure. Harley also can pull a rip cord on his dog vest that activates an alarm and a two-way radio that can be staffed by family or friends.

Just knowing Harley is there for her son has lessened anxiety and the chance of seizures, Pam Smith said.

"There is no doubt in my mind that Harley would do what needed to be done," she said.
Though he's one of the most highly trained dogs around, Harley is far from a four-legged robot, his handler said.

"He can be mischievous," Jes Smith said of his best buddy.

Harley can't keep away from doughnuts on the kitchen counter, even though he knows it's a no-no.
Piano music is another story.

Smith, who is a pianist, said it's common for Harley to fall asleep and snore at his feet during performances.

"He could care less about the piano," Smith said.

Smith returned to classes last semester at a technical college, with Harley by his side.
"We've been blessed in the past year," Pam Smith said. "Jes has his confidence and his independence back."

And he's got Harley.

"Harley loves Jes - he sleeps with him, plays with him and is so in tune to Jes," Pam Smith said.
Graham Buck, assistant director of training at the New York guide dog facility, said he's been working with dogs for 18 years and he's always amazed at their intelligence.

"I think we're learning that dogs can do even more problem solving than what we first realized," Buck said. "They are able to multitask on a higher level than we know."

Goehring said the Smiths have tearfully thanked him and other the dog trainers but the credit belongs elsewhere.

"Thank Harley," Goehring said.

What about pet seizures?

Not long ago an owner of a golden retriever called asking for help. Her dog's Petit mal seizures began suddenly three months earlier and were often barely noticeable. But they steadily increased in frequency and intensity. The veterinarian did a complete medical work up and could find no physical cause for the seizures.

We talked about any changes in his environment, diet and vaccination schedule but there seemed to be nothing different -- except for a new toy. As we talked she realized he received his new rubber chew toy shortly before the first seizure. And she mentioned it did have an odd, strong odor. I suggested she remove the bone in case he was sensitive to something in the material.

I did not hear from her for a couple of months and decided to check in to see how her golden was doing. She was happy to report that after removing the rubber bone he did not have any more seizures. This is not conclusive evidence the rubber bone caused the seizures but it is possible that he was sensitive to the materials. Whether it was coincidence or a cause-and-effect we will never know. But she now has a happy golden that is seizure free.

It is often difficult to determine the cause of seizures. They may be a result of an injury, illness, reaction to medication, vaccines or environmental toxins. It is important to keep a journal to record every aspect of your dog's environment and diet to determine if there is a pattern between the onset of the seizure and specific events. A poodle owner I spoke to recently was told her dog had a history of seizures when she adopted him.

She feeds him a high quality diet and checks titers instead of administering regular vaccines. He has not had any seizures since living in his new home. Because of her holistic and cautious approach, she can feel confident she has identified the cause if a seizure does occur after his next vaccine.In their book "The Goldsteins' Wellness & Longevity Program, Natural Care for Dogs and Cats," Robert and Susan Goldstein suggest administering the homeopathic medicine Thuja occidentalis once daily for seven days since some seizures are linked to past vaccinations.

Their diet recommendation is a natural food that is free of chemical additives and preservatives, which can provoke seizures. The nutrients and essential fatty acids they recommend are: Lecithin which rebuilds the nerves' protective insulation; Phosphatidylserine, a phospholipid that is an important component of the cell membranes of the brain and nerves; Vitamin B complex; fish oil; flax oil; and Gamma-linoleic acid, an anti-inflammatory type fatty acid found in evening primrose oil.In addition to the Goldsteins' book I would recommend anyone dealing with canine seizures visit the web site Epi Guardian Angels at canine-epilepsy-guardian-angels.com.

You will find a wealth of information on possible causes, treatments, and support from others dealing with this difficult issue.Jo Bighouse is the proprietor of Midas Touch Naturally Healthy Pets, LLC on Shepherds Mill Road in Clarke County. She is a member of the Organic Trade Association, Flower Essence Society, Animal Wellness Association, and Association of Pet Dog Trainers. Contact her through her web site at MidasTouchPets.com with questions to be answered in future columns.

Yoga vs. seizures

A yoga meditation protocol may be effective as an adjunctive therapy in patients with drug-resistant chronic epilepsy, according to a pilot study conducted by doctors at Sree Chitra Tirunal Institute for Medical Sciences and Technology here.

The results of the study, done at the R. Madhavan Nair Centre for Comprehensive Epilepsy Care, SCTIMST, has been published in one of the recent issues of the Journal of Alternative and Complementary Medicine, an international science magazine.

The seizures in a majority of patients with epilepsy can be controlled easily with routinely available anti-epileptic drugs (AEDs). However, nearly one-third of patients with epilepsy have conditions that eventually become unmanageable even with multiple anti-epileptic drugs.

The study was conducted to explore the efficacy of yoga, as an ancient, inexpensive and non-pharmacological strategy, in patients with chronic medically refractory epilepsy.

Twenty patients with complex partial seizures, who failed to respond to standards anti-epileptic drug therapy at maximum tolerated dosages and who were willing to practice a yoga meditation protocol were recruited for the study. The patients were above 15 years, with unequivocally established diagnosis of epilepsy and who had experienced four or more complex partial seizures in the past three months.

This was an open-label, non-randomised add-on trial. During a 12-week baseline period, seizure frequency was ascertained. This was followed by a 12-week supervised yoga meditation protocol. The frequency of seizures was assessed at three, six and 12 months of the treatment period.
The yoga meditation protocol administered to the patient included `pranayama' (breathing techniques), followed by silent meditation by concentrating on the region in between the eyebrows. Patients were required to meditate daily at their homes for 20 minutes in the morning and evening and attended supervised yoga sessions every week for three months. Continuation of yoga beyond three months was optional.

Reduction in occurence

A significant reduction in seizure frequency of over 50 per cent was observed as early as three months of the yoga trial. In the 16 patients who continued yoga and meditation, a progressive decline in seizure frequency was observed. Further, three out of eight patients who continued the yoga protocol for over a year were free of seizures for over six months.

Even patients who discontinued the yoga therapy after six months also continued to maintain a low seizure frequency.

SCTIMST is preparing to conduct a more detailed study so that yoga and meditation can be used as a cost-effective, adjunctive treatment without side effects, for patients who have epilepsies that are difficult to control with medicines.

Seizures in pets are not always dangerous

My 2-year-old Labrador's jaw chatters sometimes and his forehead twitches. It lasts less than a minute and he seems fine otherwise. Is this something to worry about?

Answer: What you are observing is most likely a very small seizure. Seizures are not always generalized convulsions of the whole body. Sometimes only certain groups of muscles are involved. This is referred to as a partial seizure or a focal seizure.

If this continues, I would recommend you contact your veterinarian. Epileptic seizures of this sort are not harmful and generally do not require treatment.

Dr. Utchen: My dog chews up everything in the house when we are gone. He has chew toys but doesn't always chew on them. Is he angry at us for leaving him alone?

Answer: Anxious is probably the more accurate term. Separation anxiety in dogs is often manifest by destructive behavior like you describe, or excessive barking when left alone. Some dogs urinate and defecate in the house when left alone, but not when their owners are home. All of these are indications that your dog is probably unable to cope with being left alone, and uses these behaviors as ways of diffusing his anxious energy.

Separation anxiety can be treated with diligent work by a dog owner. Strange as it may sound, it is important not to pay extra attention to your dog prior to leaving the house or upon returning home. Treat your exit and re-entry as though you were only gone for a moment, even though you may
be gone all day.

This helps reduce the contrast between how wonderful it is when you are home and how lonesome it is when you are away. No more kisses and hugs and lavishing attention on him when leaving or returning at least not for five minutes after coming home.

It also will help if you can change your routine prior to leaving the house, in order to "fake him out" about you leaving. For example, don't pick up the house or rush around in typical fashion if that is your normal pattern. Ahead of time, put your shoes outside in the garage along with your purse or other things you typically take with you.

Leave your coat in the garage this time of year. When you calmly walk out into the garage in your socks, without a jacket, and without saying good-bye to your dog, he will not begin the typical panic-type emotional wind-up that normally begins when he sees you are ready to leave him.
Additionally, if there are special treats or toys your dog likes, it will help if he is only given those when you are away. The basic idea is to make it more attractive for your dog when you are gone, so that even though he's alone, this is the time when he gets all his best toys and treats.

Do not reprimand him if you come home to find a mess. This will only increase his anxiety. Unless you can reprimand him at the instant he is being destructive, after-the-fact punishment will do no good and will predictably increase your dog's anxiety level. If possible increase your dog's opportunities to run and play each day.

Exercise is a great stress reliever for dogs and humans.

Finally, prescription anti-anxiety medications like Prozac or Clomipramine are often quite helpful in dogs with separation anxiety. It may take a few weeks for these medications to take effect, and they must be given daily to maintain their effect. Over time, as your dog becomes accustomed to reacting in a less anxious way to being left alone, the dosage on these medications can often be reduced or discontinued completely.

Little angel suffering from seizures has been recalled in Heaven

Wednesday night and fondly remembered the child they called “Daddy's little girl” and their “little piece of heaven on earth.”“She had the happiest spirit,” said Lisa Wenger, Prayer's mother. “Even though she was sick, she would look up at us and smile as if saying, ‘I'm OK. Why are you worried?'”

Prayer, 2, died Tuesday afternoon in the emergency room of Chambersburg Hospital. She suffered brain damage when she nearly drowned in July 2005, in her family's above-ground swimming pool in Quincy Township.Since then, she had been in and out of the hospital with a number of illnesses including seizures, fevers and pneumonia.She would have turned 3 on Feb. 6.
Before the accidentLisa Wenger said Prayer used to follow her father, Michael, everywhere he went.Prayer's grandfather, Jay Wenger of Waynesboro, said she was a little tomboy.

“She loved the outdoors,” Lisa Wenger recalled.Prayer also loved watching her father and grandfather fix cars and mow the lawn.“Just a few weeks ago, I remember Lisa had Prayer outside and she started fussing when she had to go back in,” Jay Wenger said. “She could feel the sunshine on her face.”

Prayer also loved music and would go to sleep when her grandmother, Peach Wenger, sang to her.After the accidentLisa Wenger was hanging laundry in her backyard on July 18, 2005. When she went back into the living room where she thought Prayer was watching television with her sister Faith, now 8, she couldn't find her. A few minutes later, she saw her floating in the pool and rushed to save her.

Prayer was taken to Waynesboro Hospital and later flown to Hershey Medical Center, where doctors determined she was functioning on the level of a 14-week-old fetus in the womb.A bout of double pneumonia shortly after the accident left Prayer with the inability to swallow. She also was 98 percent blind and had lung problems.By June of this year, Prayer was showing signs of improvement under a ketogenic diet that her mother said was awakening part of her brain.

She was able to say “Mom” and began swallowing on her own. The diet also lessenedPrayer's seizures which, at one time, she experienced up to 175 times a day. By June, the seizures had dropped to four or five a day. The diet also improved Prayer's eyesight and body movement.But in August, Prayer came down with another bout of double pneumonia - a bout that Lisa Wenger said she never fully recovered from.“She became so sick that I wasn't allowed to take her out of the house,” Wenger said. “Two days ago, she slept all day and wouldn't wake up.”

Prayer was on oxygen all day and on and off antibiotics every two weeks.When asked if anyone in the family had any indication Prayer would soon pass, Lisa Wenger said three women and Jay Wenger all had dreams about Prayer over the past few weeks.“In the dreams, Prayer was walking, talking, laughing and telling us she loved us,” Lisa Wenger said.

“She was singing ‘Twinkle, Twinkle Little Star' (in my dream),” Peach Wenger said. “I used to sing that to her.”The whole family got to hold Prayer after her heart stopped on Tuesday.The day started with a normal doctor's appointment. Prayer's doctor ordered blood work and X-rays in Chambersburg Hospital, where her mother said Prayer's breathing became difficult.

She was rushed to the emergency room, where a breathing tube was inserted and an IV antibiotic started. A rescue team from Children's Hospital in Philadelphia flew to Chambersburg, but medical crews had to restart her heart several times and adjust her trachea tube.“It was time to say goodbye,” Lisa Wenger said.ThankfulThe family said they are extremely thankful for everyone in the community who has helped them. Recently, several families came together and helped the Wengers purchase a new home on Creek Stone Drive through Exit Realty in Rouzerville.

Lisa Wenger said it is the first home she has ever owned and will be the first time the whole family, including Prayer's siblings Faith, Madison, 14, and Loren, 16, can live under one roof.“We knew we could never afford a home with Prayer's medical bills,” she said. “But a woman named Karen from Exit Realty reads the ‘care page' and I called her. She guaranteed within eight months we would have a home.”Lisa Wenger has been keeping the community informed about Prayer's condition on a “care page” on the Internet.The main reason the family wanted a new home was to accommodate Prayer's needs and to keep her respiratory system healthy.“Although our home was a blessing, it was very old,” Lisa Wenger said. “It was built in the 1800s and there was water in the basement. We truly feel that in a new home, Prayer's health would have improved.”

A group of retired men from Penn National, Helping Hands and Hearts, came together to renovate the Wengers' new home. In a little more than a week, the men, ages 71 to 98, had transformed a soot-covered home into a clean environment for Prayer, Lisa Wenger said.“John Jobes came with one friend and rewired the entire house in one week,” Lisa Wenger said.State Rep. Todd Rock and his wife, Nancy, donated all of the carpet and painted all of the interior doors.The Wenger family and members of St. Andrew Catholic Church and Five Forks Brethren in Christ Church came together to help clean and paint the house.

The Wenger family is set to move in this Saturday.Although Michael Wenger didn't say much during an interview on Wednesday afternoon, he reached for Lisa's hand and told her he was thankful she was Prayer's mother.“No other person could have handled it,” he told her. “She never broke down. She vigilantly every day took care of Prayer's every need. She stayed in the hospital for weeks. I know it wasn't fun for her, but she did it without question.”

Family members said they will receive some closure during the viewing and service for Prayer.On Saturday, Lisa Wenger and her cousin plan to fix Prayer's hair and dress her up. On Tuesday at 1 p.m., the family and the second-grade class at St. Andrew Catholic School will recite a Rosary for Prayer. The viewing is scheduled from 6 to 9 p.m. Tuesday in Miller-Bowersox Funeral Home, Greencastle.A Mass of Christian Burial will be celebrated at 10 a.m. Wednesday in St. Andrew Catholic Church, Waynesboro, by Father David S. Keller.

Pastor Wilbur F. Besecker will present the eulogy.Lisa Wenger said Sandy Bowling will read a poem for Prayer. Bowling lost her daughter in a drowning accident nine years ago. White doves will be released at the end of the service.“We're just glad Prayer is playing again,” Lisa Wenger said with a smile.In lieu of flowers, the family is requesting memorial contributions to be sent to First National Bank of Greencastle, P.O. Box 8, Greencastle, Pa. 17225.

Surgery cures seizures disorder of woman

People who have epilepsy often deal with seizures that can cause permanent damage to the brain. But a Little Chute woman became seizure-free through surgery.

Three-and-a-half years ago, life was very different for now-29-year-old Kelly Petersen.
"I couldn't drive for two years, you know? Future family of my own was not an option. Just -- very limited life."

Kelly used to have six to eight epileptic seizures a month. She says people like her husband, Ryan, would watch her freeze up and black out for 15 to 20 seconds, and not be able to do a thing.
"After that, coming back to reality, it would take me over two hours to realize what happened."
Kelly used to take 12 pills a day to try to control her seizures, but they didn't work. Doctors say for one-third of epileptic patients, medication never will.

"So the chances that a surgery is going to be your best bet are vastly superior to any medication after you've tried a couple and been unsuccessful," Dr. George L. Morris III, an Aurora Bay Care neurologist, said.

At a seminar run by Dr. Morris, Kelly learned not all people with epilepsy are candidates for surgery but she was. She decided to go for it.

Surgeons found the non-vital part of Kelly's brain that was causing the seizures and removed it. Kelly's had no seizures since the surgery.

"Really built my confidence again. I ain't afraid to step forward any more if I have something to say. I used to hide in the corner -- and I think that's the biggest thing, it just really builds your confidence."

Aurora Health Care is hosting a seminar on epilepsy February 1st from 6:30 to 8:30 P.M. at Aurora Bay Care Medical Center on Green Bay's east side. Please RSVP online or by calling toll-free 1-888-863-5502.

Check with your health care provider to see if it offers similar services.

Treats and seizures in pets

However, local veterinarians say they may not be doing their pets any favors. Not only could the treats contribute to a weight problem, but they could also cause mild to severe medical complications.

"There's a tendency to slip Fido that extra treat, typically a human treat. But that's really not wise," said Dr. William Kimble, a veterinarian at the Animal Medical Center. "We don't see as much of cats getting the extra food as we do dogs because they're far more finicky." "We want our pets to enjoy Christmas with us, but let's keep it in moderation," he urged . "It is much easier to prevent obesity than to treat obesity."

Pets, like humans, tend to tack on the pounds during the holiday season because of the treats. However, pets that put on worrisome pounds are generally already obese, Kimble said. That's because they're not just getting treats during the holidays. "Obesity is not just external. It's also an internal problem, but that's not as obvious," he said. "Fat gets deposited around the heart and other organs and that's where many of their medical problems arise." Dr. Linda Farris-Guy, a veterinarian at the Animal Health Center, agreed.

"Most of the extra calories will come from the table scraps," she said. There are several ways people can help their pets shed those unwanted pounds and they will all be familiar to those who have dieted before. Obviously, Kimble said, reducing the number of snacks to a minimum is the first step. Playing with or walking the pet will also help. "We need to promote exercise and encourage some activity," Kimble said. "Anything that gets him moving." In addition, he said, weight reduction diets for pets can be found at most retailers.

It's typically not the volume of the treats during the holidays that contribute to the weight, but the richness of the food and the change of diet. "It's not so much that it was bad for them, but it's the major change in diet that causes it. It changes the digestive processes," Kimble said. Major diet changes can sometimes cause pancreatitis, an inflammation of the pancreas. "Once the pancreas gets inflamed they can get real sick and require hospitalization. They can even die," Farris-Guy said. Then there's the temptation to treat the dog to those juicy ham or turkey bones, she said. "If a dog can chew up a bone, they don't need to eat it because it can cause serious problems," Farris-Guy said.

"Bone splinters can cause internal bleeding or obstructions. We have had to surgically go in and remove bone and bone fragments." Although any food in excess can become dangerous to pets, certain foods can be lethal in much smaller amounts, Farris-Guy said. Most people are aware chocolate is poisonous to dogs, she said. "It really only takes a very small amount of that," the veterinarian said. "Some dogs can die within 12 to 36 hours if they consume enough of it." Gastrointestinal upsets that cause vomiting or diarrhea can occur within two to four hours after a dog consumes chocolate.

Major consumption of chocolate leads to restlessness, stiffness and excitement and could progress to seizures after 12 to 36 hours. "The seizures are at the end stage. When they start having seizures they're in trouble and need a vet immediately," Farris-Guy said. Pets are also drawn to alcoholic beverages and those should be placed well out of reach of lapping tongues, she said. The smell of beer is especially attractive to dogs.

Even some holiday plants could pose a danger to pets, she said. Cats are especially attracted to new plants and susceptible to their poisons. "One leaf off of a poinsettia can kill a child or pet," Farris-Guy said. "It's part of the nightshade family. Mistletoe is also bad."

Seizure dog on duty!

The seizures are bad, hitting hard enough to knock her to the ground — helpless until someone arrives or she can gather her senses. But worse, says Heidi Lee Dias, is never knowing when the next one will hit, or where.

Sometimes days will pass without one, "but yesterday I had two ... I had three last week." It has happened when she was on the stairs and when she was out in town.

"There's never a good time or place but some places are really bad," she said. "It's really scares me and it worries my family all the time."

The seizures have dominated her life since she suffered a stroke out of the blue seven years ago at age 29. She had undergone a doctor-recommended hysterectomy and was recovering in the hospital two days later when it hit.

"At first I could hardly do anything. I couldn't talk — the only word I could say for awhile was 'no.'"
Gradually her strength and speech returned but there are still good days and bad.

Telling her story last week, she spoke clearly about what she'd endured.

"But some days I can hardly say a thing. My daughter can always understand me but sometimes she's the only one."

It's the same with her strength. Her right side is weakened but she can usually get about reasonably well, except on the bad days. Or when a seizure strikes.

Veteran, EMT, now housebound

All this is quite a change for a young woman who had set a career path of helping others. After high school in Fall River she entered the Navy and was shipped off to serve in Operation Desert Storm when her daughter Bianca Lee Cardoza, now a senior at Westport High School, was but nine months old.

During the war she was among a special few selected to be a Marine Corpsman, tending to wounded soldiers. Back home she continued that line of work, becoming an EMT for private ambulance services.

"It was work I really liked," she said. "I miss it, I was doing something important."

These days the tables have turned. Since the stroke, she can't work, can't drive, can't go out without fear of the seizures for which doctors can forecast no end.

She's 36 now and gets help from her daughter, husband George Dias and daughter-in-law Kayla Dias.

"They are great about it (the experience has even played a part in guiding her daughter toward a career in nursing or similar field). But I know it's hard on them, someone calling me every 10 minutes to make sure I'm all right."

"I just want my life back, to be able to go places without being afraid of what might happen."
It has been heart-wrenching to see the changes in her daughter, said Heidi's mother Sandra Amarello who lives in Florida but makes trips north to help out.

"She went from a very outgoing, active person who loved to play sports outside with her daughter to someone who is afraid to leave her house," Ms. Amarello said. "She doesn't like to go out to her mailbox alone ... one time she had a seizure right out there in Route 177." And whereas she used to take care of her daughter, "now it's the other way around. Her daughter does so much for her."
Seizure dog

Awhile back, Heidi learned from doctors about something that might help.

"I had never heard of seizure dogs before so I looked it up on the internet." There she found a wealth of information about special dogs trained to help owners who suffer from seizures, dogs that can perhaps even alert them before the seizure hits.

Her research led her to Northern Indiana Service Dogs, a firm that trains dogs for the specific and varying needs of clients. Some are companions and helpers for wheelchair-bound and partially paralyzed people, and others are trained as seizure response dogs.

Ms. Dias is especially hopeful about the possibility that some seizure response dogs may actually sense the onset of a seizure before it begins.

"It may be something to do with their sense of smell, or with the fact that they know their companions so well but they can actually give warning before it starts." This, she adds, would make all the difference and offer a measure of protection from falls or worse.

Northern Indiana Service Dogs makes no assurances along these lines:

"There is no guarantee that a seizure response dog can predict a seizure. However, we would expect that in time, and after bonding ... they will notice oncoming seizures and will alert you to them."

The firm does say the dogs are trained to assist with balance, retrieve dropped or out-of-reach objects, open doors and even bring a phone to a fallen person.

Although she hasn't yet raised anything close to the $5,000 she'll need for her dog (actual cost is higher but a donor program provides some assistance) she has begun the process. Stevie, a yellow lab puppy, has begun training for her specific needs and will be available in several months.
She says she calls the trainers often to find out how it's going.

"They say he's going to be wonderful. I can't wait to meet him," she added.

Knowing all about Epilepsy is better than not

An estimated 2.7 million Americans ---- nearly one in 100 ---- live with epilepsy. But for most of them, having seizures isn't their biggest problem. It's lack of knowledge among those they encounter, and even among themselves.With proper treatment, most people with epilepsy can live normal lives. According to the Epilepsy Foundation, a patient advocacy group, treatment can enable 70 percent to go five or more years without a seizure. They are considered to be in remission.

But many who could just get on with their lives don't. Children are harassed by their peers, older adults may isolate themselves for fear of losing control, or fear that employers will think they're not mentally or physically capable of work.

Hundreds of medical professionals and other experts discussed these issues last week at the annual meeting of the American Epilepsy Society, held at the San Diego Convention Center along with the Canadian League Against Epilepsy. But to make a difference, that information can't stay among professionals. It has to reach the general public.Here's a capsule description: Epilepsy is a family of brain disorders that cause repeated seizures without any external cause.

Seizures are sudden, unexpected changes in the brain's electrical activity that can cause alterations in consciousness or muscle activity.A seizure can be as blatant as falling to the ground in convulsions, or as subtle as a few seconds of blank staring. Or it can be entirely undetectable except to the patient, who feels a sudden surge of fear or euphoria. The seizure's electrical impulses are lighting up the brain's emotional circuitry.

Epilepsy is sometimes caused by brain injuries or infections. In some cases genetic factors are responsible. But in many cases, the exact cause is unknown. Epilepsy occurs in all age groups. It's found in infants and in the previously healthy elderly.And it can kill. There's even an acronym for it: SUDEP, or sudden unexpected death through epilepsy.

The mortality rate among those with epilepsy is two to three times higher than average, and the risk of sudden death 24 times greater, according to a study cited by the American Epilepsy Society.Social stigmaLack of understanding can lead to severe consequences. In September, Daniel Beloungea of Michican experienced a convulsive seizure while walking through his neighborhood.

Police concluded that Beloungea was resisting them. They held him at gunpoint, struck him with a baton, Tasered him, and took him to jail. Beloungea was forced to plead insanity to gain his release, and was jailed for three weeks in a psychiatric facility for the criminally insane.Beloungea is one of the unfortunate minority of epilepsy patients whose seizures are not well-controlled. Anti-epilepsy drugs had failed, and he had recently had brain surgery.

Walking was part of his rehabilitation program.The Epilepsy Foundation carries an account of the incident on its Web site at http://tinyurl.com/yzmbjy.

Adrian Egli of San Diego also has continuing difficulty with convulsive seizures. Not yet 40, Egli has been unable to work full time and is soon to go on Social Security disability. His hobby, which he credits with helping him overcome depression, is building structures with Legos.Egli said he got epilepsy after being struck by a car when he was 5.

He went years without a seizure, and was even considered cured. Then he had a convulsive seizure in a ninth-grade class."It was the one and only time I lost control of my bladder," Egli said. "I looked underneath my chair and thought, what's this puddle of water?"

Suddenly, students didn't want to be near him. "I felt like a freak," Egli said.Egli spoke at a meeting-related press conference sponsored by UCB Pharma, a maker of epilepsy drugs. The company is trying to address the stigma of epilepsy by sponsoring a program to place service dogs with those with epilepsy. (See sidebar.)Research advancesMedication is the first line of treatment for epilepsy. The first anti-epileptic drugs, sedatives called bromides, were introduced in the 19th century. In the early 20th century, phenobarbital and phenytoin (trademarked Dilantin) followed. A long string of other drugs followed. Patients respond differently to these drugs, which come with undesirable side effects such as weight gain or inability to concentrate. The goal is to match the drug to the patient to give the best seizure control with fewest side effects.

From 70 percent to 90 percent of epilepsy cases can be adequately controlled through medication, said Dr. David Bettis, a pediatric neurologist who spoke at the UCB-sponsored event. After a pause in developing drugs from 1978 to 1993, a stream of new drugs has reached the market. In many cases, these drugs are substantially more effective than the old standbys, Bettis said.

For the 10 percent to 30 percent who aren't helped enough by medications, alternatives include a low-carb, high-fat "ketogenic" diet, an implanted "brain pacemaker" that stimulates the vagus nerve, and, as a last resort, surgery."That involves finding out if the part of the brain causing the seizures can be removed without making the symptoms worse," Bettis said. "You wouldn't take out part of the brain if that would leave the person paralyzed or unable to speak.

It would be better to live with the seizures."To do successful surgery, doctors must map each patient's brain to determine the location of such vital areas, as well as the location of the epilepsy-causing tissue. Then doctors have to plan a path that reaches the tissue with the least damage to the brain.

EEGs are helpful to brain mapping, but the skull distorts the path the brain waves take, said Dr. Vicente Iragui, a neurologist and director of the UCSD Epilepsy Center. Other mapping tools include fMRI (functional magnetic resonance imaging), which shows brain activity by measuring blood flow, and an exotic technology with the jawbreaking name of magnetoencephalography, or MEG. This technology measures the magnetic fields created by the brain's electrical activity.

The Epilepsy Society's scientific poster session included several studies indicating MEG's usefulness. Iragui agreed that the technology is helpful because the signal isn't distorted, making targeting more accurate. Two San Diego companies, 4D Neuroimaging (formerly Biomagnetic Technologies), and Tristan Technologies, have developed MEGsA major problem with MEG brain scanning is that the magnetic signals are extremely faint, so the test area must be shielded from stray metal or electrical activity that could override the signal.

Latino outreachEpilepsy can be contracted from undercooked pork contaminated with parasites. These parasites are especially prevalent in Latin America, Africa and Southwest Asia, Iragui said. This form of epilepsy is seen in immigrants to Southern California from the affected areas, mainly from Central America, Iragui said.This disease, called neurocystericerosis, occurs when the parasites lodge in the brain. It is the most common cause of epilepsy in developing countries. The parasites destroy part of the brain tissue, which is replaced by calcified cysts as the parasites die.

The type of epilepsy depends on where the parasites lodge.In most cases, patients experience "partial" seizures, taking place in the part of the brain where a parasite has lodged. However, multiple infestations can occur in one brain, Iragui said.Good sanitation and proper cooking of pork prevent the disease from spreading, said Iragui, a native of Spain, who addressed a workshop at the meeting held in Spanish.

Neurocystericosis can be treated with drugs to kill the parasite while it is alive. Once the parasite has died and epilepsy occurs, the treatment is aimed at controlling the epilepsy, such as with anti-epileptic drugs.Epilepsy and agingElderly people sometimes develop epilepsy because they've had a stroke, brain injury or a disease that affects the brain. But most of the time, the cause is unclear, said Dr. Kevin Kelly of Drexel University College of Medicine.

Kelly specializes in research on epilepsy among the aging. He's trying to distinguish the normal consequences of aging from those associated with epilepsy.The first hurdle is diagnosing the epilepsy, Kelly said. It may not occur to a doctor that epilepsy can develop in a person with no history of the disease. Also, some of the results of seizures, such as falls, could be attributed to the frail condition of some elderly."A lot of seniors have lapses of memory, they may have confusion spells, they may have senior moments," Kelly said.

When epilepsy is suspected, patients are sometimes given a single EEG (brain wave) test. Kelly said that's not enough, because it may take multiple brain wave tests, or even video monitoring with EEG to catch the pattern of a seizure.Cost of care is also a concern, Kelly said. Anti-epileptic drugs can be expensive, and many seniors are taking multiple medications. In some cases, doctors may have to take drug prices into account in prescribing, because a medication that a patient can't afford does no good.

One of those seniors, 77-year-old Kay Burke of Chula Vista, attended the UCB briefing. Burke said her epilepsy was being well-controlled with Keppra, a drug made by UCB. However, she could not afford the $200 monthly cost, which exceeded the coverage limit on her Medicare Part D drug plan.A UCB representative took her information and said she would see if Burke qualified for a lower-cost rate. Many pharmaceutical companies offer such programs for those with medical needs and a limited ability to pay.

Burke said she was diagnosed with epilepsy fairly recently."My children thought I was having strokes," Burke said. "I'd be walking down the street and I'd get pale, blanch, and then I'd have to hold onto something or fall."I went to the doctor two years ago, and he just said I had focal seizures, but he didn't say it was epilepsy," Burke said. "I had this fall and was taken to the hospital where they did the EEG, and that's when I found out."Contact staff writer Bradley J. Fikes at (760) 739-6641 or bfikes@nctimes.com.

About seizuresSeizures differ depending on what parts of the brain are involved. Those affecting motor areas will produce involuntary movements, including apparently purposeful movements. Seizures affecting consciousness or perception will produce sensations such as a smell of burning rubber. They can involve just part of the brain, called "partial" seizures, or "generalized," which involve the entire brain. Combinations of these also occur.

These are the most common kinds of seizures:Partial seizures:

- Simple partial (focal) seizures involve only one part of the brain. They can cause movement, altered sensations, or a change in heart rate. Consciousness remains intact, although seizure-produced movements may impair the person's ability to respond.

- Complex partial seizures start in the temporal or frontal lobe of the brain as a simple partial seizure, and spread to other parts of the brain that control awareness and consciousness.

The person may perform repetitive behavior such as plucking at clothes as if removing lint, or wandering.

- Partial seizures that lead to generalized seizures (see below). Generalized seizures involve the whole brain.Generalized seizures:Tonic-clonic (formerly known as grand mal) can cause the person to lose consciousness, stiffen and fall to the ground. Jerking motions follow, along with possible incontinence. The movements should stop in a minute or two, after which the person slowly regains consciousness.- Absence (abSONCE) seizures put the person on automatic pilot, apparently daydreaming, usually for 10 to 20 seconds.

Often, the person will blink repetitively. They are especially common in childhood epilepsy. The person has no memory of the episode, but is alert immediately afterward.- Myoclonic seizures cause brief muscle spasms.

- Atonic, or "drop" seizures, cause the person to briefly lose muscle strength. If standing, the person will suddenly drop to the floor, possibly resulting in head injury. The person remains conscious.

First Aid:For tonic-clonic seizures, watch, guard and wait are the most important things you can do.Watch and make note of what happens during the seizure, including timing the seizure.Guard against injury.

Remove hard or sharp objects that could injure the person. Clear the area around the person so movement is not restrained. Loosen ties or anything else that may obstruct breathing. Gently turn the person on one side. Place something flat and soft, like a folded jacket, under the person's head.Wait until the seizure ends, which should be within a few minutes. Do not attempt artificial respiration unless the person does not start breathing once the seizure is over.Be reassuring and offer to call for a cab, friend or relative if the person seems confused or unable to get home unaided.

An ambulance should be called for if the seizure goes on for more than five minutes, has happened in water, or if the person is pregnant, injured or diabetic. Also, if the person has no medical ID, does not regain consciousness or another seizure begins, emergency care is needed.For non-convulsive seizures:

- Explain to others what is happening.

The person may be mistakenly considered to be intoxicated.

- Speak quietly and calmly.

- Guide the person gently away from any danger, such as a steep flight of steps, a busy highway, or a hot stove. Don't grab hold, however, unless some immediate danger threatens. Instinct may make an epileptic struggle or lash out at the person who is trying to hold them.

- Stay with the person until full consciousness returns, and offer help in returning home.More complete information on first aid for seizures is available from the Epilepsy Foundation at http://tinyurl.com/yngb4y.

SOURCE: Epilepsy Foundation

Viral infection caused her seizures

FOR seven months, Kate Weston was on a life-support machine after she was struck down by a mysterious brain illness while on holiday.

Now the 26-year-old is coming home for Christmas with her devoted family - and their remarkable story is to feature in a television documentary.

The former Aldworth Science College and BCOT pupil will appear in The Brain Hospital, a three-part BBC series about life at The National Hospital for Neurology and Neurosurgery in London, one of the world's leading brain hospitals.

Miss Weston, who still struggles to speak, told The Gazette that she had found watching the BBC's programme difficult, as she did not remember anything.

She said: "I am looking forward to Christmas and hoping to regain my independence."

Miss Weston was treated at the hospital after becoming ill on a Spanish holiday in August 2005, while working as a nanny.

Certain medecine can cause seizures more often in pregnant women

Women with epilepsy who are treated with lamotrigine (Lamictal) during pregnancy and have low therapeutic levels of the drug have more frequent seizures, according to research presented here at the annual meeting of the 1st North American Regional Epilepsy Congress (NAREC).The meeting is organized by the American Epilepsy Society (AES) is joining with the Canadian League Against Epilepsy.

"Our analysis demonstrates that seizure worsening during pregnancy is associated with a low ratio-to-target concentration [of lamotrigine]," reported Page B. Pennell, MD, associate professor of neurology at Emory University School of Medicine in Atlanta, Georgia. "However, improved results are possible with an active therapeutic drug monitoring approach."The dilemma is that both seizures and anticonvulsants are associated with fetal risks.

However, because lamotrigine is associated with relatively low rates of malformations, physicians are prescribing it more often to women with epilepsy who are in their reproductive years. However, as with many medications, lamotrigine clearance has been reported to increase during pregnancy, resulting in low blood concentrations of the drug and, therefore, more frequent seizures. In fact, such exacerbations have been reported in 45% to 75% of women on lamotrigine monotherapy, according to the investigators.

Dr. Pennell and colleagues conducted a subset analysis of 30 women on lamotrigine monotherapy during pregnancy for whom they had adequate baseline information about seizure frequency and preconception target lamotrigine concentrations. The investigators then used the concentration data for therapeutic drug monitoring and made dosage adjustment recommendations according to the patient's seizure types and type of epilepsy syndrome, as well as seizure frequency, history of lamotrigine-related adverse effects, the fetus's gestational age, and what was considered to be the individual's target concentration of lamotrigine.

For each trimester of pregnancy, the investigators coded the relative frequency of all types of seizures in the following manner: 1 if the frequency of seizures was greater than baseline, 0 if the frequency was the same or less than baseline. For each trimester, they calculated the ratio-to-target concentration as the ratio of the current lamotrigine concentration compared with the baseline lamotrigine concentration.The investigators documented a worsening of seizures during pregnancy in 28% of patients.

Convulsive seizures, which are more hazardous to fetuses, worsened in 10% of patients. In the second and third trimesters, lamotrigene concentration ratios for patients with worsened seizures were significantly lower than ratios among those with stable seizures (P < .001 and P = .05, respectively). However, those associations were not seen in the first trimester.

The findings showed the need for research that could help clinicians define a treatment plan and dosing paradigm for lamotrigine use during pregnancy that would be adaptable to individual patients, Dr. Pennell said during her presentation on December 3rd.The study was funded by a grant from the National Institutes of Health Specialized Center of Research.

Fatal seizures for baby girl

A South Lyon father was charged with murder in the death of his baby daughter in a Novi courtroom Tuesday, Local 4 reported.

According to prosecutors, if convicted Steven McBurney, 31, could get life in prison with no parole.
Police said McBurney called 911 last Thursday and said his 11-month-old daughter was unresponsive and having seizures. His daughter, Madison, passed away at a hospital in Ann Arbor Sunday night.

South Lyon police said McBurney told investigators he threw Madison into her crib when she wouldn't stop crying.

Investigators said the child's injuries were consistent with shaken baby syndrome. Doctors said they had also discovered a month-old injury on the baby, and McBurney said he dropped the baby a couple of months ago.

Police added that McBurney has a 1998 conviction for second-degree child abuse in Wayne County.

Family hopeful that surgery will stop seizures in teen

An Indianapolis teenager is recovering from risky brain surgery that might help him deal with one of his three medical conditions.

Lance Rice, 16, underwent surgery at Ohio's Cleveland Clinic this month in hopes of ending his epileptic seizures. A large chunk of his brain was removed.

The surgery was considered to be especially risky because has hemophilia. The blood disorder, combined with the surgery, could have led to strokes or hemorrhaging.

But Rice, a junior at Lawrence North High School, chose to go ahead with the operation, which he hopes will help his quality of life. He had, for the most part, stopped going out in public because he didn't want to explain his seizures to people.

Rice's epilepsy has been just one of his medical concerns. His hemophilia triggered a stroke when he was 5 days old. When he was 2, tainted blood products used to treat the hemophilia gave him hepatitis C.

After the seizures started in fifth grade, he took 11 pills daily, and none of them helped with the epilepsy. Sometimes, he had seizures three times a week.

"All of (the pills) do some damage since his liver is compromised already," Rice's father, Eric Rice, said.

The operation has offered hope. The teenager hasn't had a seizure in 21 days, 6News' Stacia Matthews reported.

"Already we can see a confidence in him. He sees a future," his mother, Michell Rice, said.
Doctors hope to begin weaning Lance Rice off his drugs in about six months. In about a year, doctors will have a better idea as to whether the surgery was a success, Matthews reported.

Surgery to stop seizures was done on T.V.

A Luton woman who has had epilepsy for more than two decades features in tonight's new BBC1 documentary series The Brain Hospital – as she undergoes surgery to stop her seizures.Lois Higgs, from Stopsley, underwent a number of tests at the National Society for Epilepsy (NSE).Then she had her surgery at the National Hospital for Neurology and Neurosurgery (NHNN), which is the focus of the three-part series which airs its second episode tonight, Wednesday, at 9pm.

Since having her surgery, Lois, who lives with her husband and three children, has seen a significant reduction in her seizure frequency. And she is so grateful to NSE for its support that she is fronting the charity's Christmas Appeal this year to raise funds for its epilepsy information service, which provides 300,000 leaflets to people with epilepsy every year.Lois is a big supporter of NSE's work. She said: "I've always used NSE's information leaflets to help me understand more about my seizures and medication.

"Their wide range of leaflets have always given me the information I've been looking for, in a clear and easy to read format."Although doctors give you information, you can't always take in what they are saying at the time. "That's why the leaflets are so important. "They are clear and informative and the range available answers all my questions about living with epilepsy."To support Lois and the work of NSE, you can donate via its website at www.epilepsynse.org.uk or contact Pat Leighton on 01494 601414