Baby girl's parents need help to raise child with seizures

The baby quilt and sheets in the crib match the purple and blue paint on the walls in the nursery, but at 7 months Delia Binette has never slept in the room that was so lovingly prepared for her. It’s been in only the last month that Delia has stopped sleeping in her parent’s bed at night, although she still stays in their room.

From birth, Delia has suffered from full-body seizures, which include a loss of consciousness and violent muscle contractions. The seizures were eventually diagnosed as epilepsy, but not until after she spent several weeks in the hospital, both at Maine Medical Center and at Children’s Hospital in Boston.

Delia Binette has spent much of her young life in the hospital. It took about a month after her birth in September for doctors to figure out her full body seizures were being caused by epilepsy.

Although Delia is now down to about one seizure a month, she’s already experienced more than 60 seizures. She mostly suffered them during the first five months of her life, when she often had as many as seven seizures a day. Not knowing when Delia could have a seizure is a constant worry to her parents, Jason and Kristine Binette of Sanford.

“Every movement, every gurgle or noise that she makes, I wonder if it’s the start of a seizure,” Kristine said. “That’s the constant dark cloud over our heads. Seizures can happen at any time of the day or night. Since Delia was born, our lives have been a roller coaster – always ups and downs.”

Although Delia, 7 months, just learned to roll over, her parents think she might just walk before she crawls. Delia certainly is able to easily get around the house in her walker on wheels.

But what’s been the most frustrating for the Binettes is that there are no support groups and virtually no resources available in Maine for epileptics and their families. The closest place to reach out for help is the Epilepsy Foundation of Massachusetts and Rhode Island, based in Boston.

To help change that, Kristine Binette has organized two upcoming fundraisers to help bring an affiliate chapter of the Epilepsy Foundation to Maine. One of the fundraisers is a dance that will take place on Saturday night at the Rochambeau Club in Biddeford. The other fundraiser is Maine’s 1st Walk for Epilepsy, a 2-mile walk that will take place on Sunday, May 18, at Young Elementary School in Saco.

Since Delia was diagnosed with epilepsy, Kristine and Jason have only met a few other families with epileptic children. Those meetings only happened by chance, mostly during lengthy stays at the hospital, according to Kristine.

Jason Binette, Delia's father, said it was an anxious time while he and his wife waited for the doctors to tell them why Delia was experiencing so many seizures.

She hopes the two upcoming fundraisers will give families with epileptic children a chance to meet and talk about their struggles and learn from each other. Kristine said even people in her own family don't have a full appreciation of the randomness of Delia's seizures or the effect it has on the Binettes' daily lives.

The paramedics have been to the Binettes’ house four times since Delia was born in September. Kristine and Jason called the ambulance because they couldn’t get Delia’s seizures to stop. Having uncontrolled, prolonged seizures could lead to serious brain damage and developmental delays.

Looking at Delia today – a happy-go-lucky baby with a beautiful smile and big green eyes – one would never know just how sick she was for the first few months of her life. And even though Delia’s almost constant seizures have now stopped, Kristine still carefully watches her daughter’s every move.

Four-year-old Morgan Binette is a big help to her mother, Kristine, in caring for younger sister, Delia. Morgan likes to give Delia kisses on her tummy and gets new diapers out of the closet without being asked.

Delia is never out of her sight for more than a few minutes at a time. Even when Kristine is driving, she keeps watch by putting a mirror over Delia’s car seat so she can see Delia’s face at all times.
Since Delia has had seizures from birth, she is developmentally a little behind other children her age. She just learned to roll over, she still has trouble sitting up by herself and she is not yet crawling. Delia also sees an osteopathic doctor, who works on strengthening her muscles.

“We get so excited every step forward that she takes. Having a child with epilepsy really makes you slow down and not take things for granted. I don’t think people with children who are 100 percent healthy truly know how lucky they are,” Kristine Binette said.

According to the Epilepsy Foundation of America, just about 3 million people in the United States have epilepsy. Epilepsy is caused, according to the foundation, by brief, but strong electrical disturbances in the brain. These episodes lead to seizures, which often affect normal brain and bodily functions.

There is no way to determine how many people in Maine have epilepsy, according to Dr. Dora Anne Mills, director of the Maine Centers for Disease Control. She said no public health agency in Maine keeps track of epilepsy because it’s not considered a fatal disease.

About 200,000 new cases of epilepsy are diagnosed each year and the incidence rate is highest for those under the age of 2 and for those over 65, according to the Epilepsy Foundation. However, epilepsy can strike anyone at any age.

For 70 percent of those diagnosed with epilepsy, like Delia, no cause is apparent. Known causes of epilepsy, according to the Epilepsy Foundation, include head injuries, a lack of oxygen to the brain during birth, lead poisoning or infections like meningitis and encephalitis.

In Delia’s case, doctors did a multitude of tests, including blood tests and imaging procedures such as CT scans and MRIs tests to rule out any other causes of her seizures, such as low-blood sugar, kidney failure or a brain tumor.

Because she has no family history of epilepsy, and since epilepsy is relatively rare – only about 1 percent of all people suffer from it – Delia’s diagnosis took a while.

Only about 30 percent of people with epilepsy have full-body seizures, like the ones Delia suffers, according to Susan Welby, program coordinator for the Epilepsy Foundation of Massachusetts and Rhode Island. She said it’s a common misconception that everyone with epilepsy has seizures that cause their bodies to convulse.

In fact, Welby said, 70 percent of people have what are known as “partial complex seizures” that just looks like “very strange behavior.”

She said some epileptics have seizures that cause them to constantly smack their lips or to wander about aimlessly. Some even pick constantly at their clothes.

According to Welby, the type of seizure an epileptic has depends on the part of the brain affected by the electrical disturbances. She said that since some seizures are seen as just “bizarre and inappropriate behavior,” it can take a long time for someone to get an epilepsy diagnosis.

“It’s a spectrum disorder. Some people can enjoy complete seizure control and a normal life. But others have totally uncontrolled seizures and a poor quality of life,” said Welby.

According to Delia's doctor, Stephen Rioux of Maine Neurology, some people with epilepsy have what’s called a “trigger” – an environmental or physiological reason to have a seizure – but many, like Delia, don’t.

Kristine and Jason have been warned that Delia could suffer more seizures if she becomes overtired or sick. Kristine also said Delia could suffer from seizures more during times in her life when she’s going through hormonal changes, such as puberty and menopause.

Rioux said the first line of defense for people with epilepsy is to put them on anti-seizure medications. After Delia was diagnosed, she was put on a variety of such drugs, Kristine said, but she developed an allergy to one of them and none of them are tested for use in infants. Therefore, Kristine and Jason are keeping Delia off medication for now.

Rioux said for some people with epilepsy it’s a mild irritation, for others the seizures can lead to profound retardation and other learning disabilities. Therefore, in addition to not knowing when a seizure might happen or how bad it might be, Kristine is also constantly worried the next seizure could lead to severe brain damage.

In addition, unlike some children with epilepsy, Delia is not likely to grow out of it, according to Rioux. Kristine and Jason were told Delia is likely to suffer from epileptic seizures her whole life.
“When I think about her being in school, or what her life will be like as a teenager, I worry so much,” Kristine said. She said there is such a stigma associated with epilepsy that a lot of people who have it don’t admit to it, even to friends and co-workers.

“I don’t want Delia to go through that. I want her to be able to say, ‘Epilepsy is not who I am, it’s only a part of who I am’,” Kristine said.

Could air quality problem in high school cause seizures and other health problems?

Kathy Cunningham did not want to take a chance with her son JJ's health. She asked Tempe Union High School District officials to transfer the special-needs student to another school where she would not have to worry whether the air he was breathing might harm him, she said.Cunningham said she was shocked to hear the extent of Corona del Sol's air-quality problems at a district-held forum late last month.

Officials from Health Effects Group, an environmental-consulting firm that tested air quality at the school in 2006, told parents that elevated carbon dioxide levels were not dangerous but could cause their children to be fatigued or lethargic. The district said a 30-year-old ventilation system and an airtight school built to incorporate solar technology were to blame for the lack of airflow and air-quality problems.

The district has worked to upgrade the system but the state School Facilities Board denied its request for emergency funding to complete repairs, which the district estimates would cost $11 million. The district is working on several funding options, including asking voters to approve a bond election in November. But Cunningham listened to one person after another stand to complain about cancer, tumors, allergies, migraines and other health problems that had plagued their bodies since coming to the school.

She contacted the district after the forum and had JJ transferred to another school last week. JJ, 19, began having grand mal seizures after he started attending the school four years ago, she said. JJ's neurologist, Cunningham said, told her she thought the seizures were environmentally related because his brain did not show damage that could cause seizures."We've lived in the same house for years . . . it can't be from here," she said.

Cunningham said she has no proof the school has affected her son's health, but she is upset that the district knew about health complaints for years and knew about the air-quality for more than a year, yet did not notify her sooner. Now parents of other special-needs students at Corona are concerned about how the air-quality might affect their children. Parents of other special-needs students have scheduled an appointment with Corona High School Principal Susan Jilek-Edwards.

Jim Adams said he and his wife Marie would attend the 2:30 p.m. Thursday meeting on behalf of their 16-year-old daughter Kim, who has autism.Adams' daughter, a freshman, began having headaches and migraines after attending Corona, he said.Adams said parents are concerned because the special-needs classroom is located next to the automotive shop and a shop where welding is done.Linda Littell, a district spokeswoman, said the classroom is located next to the auto shop but she did not know if welding was taking place nearby.

She said the principal knew of only one parent attending the meeting Thursday."We're meeting with that parent as we would any parent to address concerns," Littell said.Adams said teachers and parents have smelled engine-exhaust fumes and fumes from chemicals used in the shops. Parents, he said, want the children moved from the classroom until the ventilation system is fixed or the the school stops allowing welding and engines running during school hours. They also want chemicals and pesticides banned in the rooms.

Honey poisoning could be linked to seizures

At least nine people have become severely ill from eating toxic Coromandel honey as health authorities attempt to contain the problem.

Five more cases were reported yesterday, including a Palmerston North draughtsman whose livelihood has been affected after a series of seizures and continuous vomiting.

Doctors banned the 43-year-old from driving for a year till epilepsy can be ruled out as the cause of the seizures. Blood, urine and CT tests at the hospital were inconclusive.

The producer of the contaminated honey - A Taste of Whangamata Pure Honey - has been identified as Kevin Prout, a hobby beekeeper who has run Projen Apiary in Whangamata for about five months. His honey, which was sold at three Whangamata retailers, has been recalled.

The Palmerston North man contacted the Waikato District Health Board after hearing reports of four people who suffered effects from consuming toxic honey, produced as a result of bees feeding on honeydew containing poison from native tutu bushes.

Wellington mother Jo Whittle, her three-year-old son Daniel Fox and her sister's partner, English tourist Joseph Reynolds, were all treated in hospital last week.

Hamilton woman Judy Hall, 70, also became violently ill.

Waikato District Health Board spokeswoman Mary Anne Gill said that the Palmerston North man was admitted to hospital last month after eating half a pot of the honey his mother bought from Whangamata. He became sick again last Sunday.

His 45-year-old brother, a fitter and turner from Rotorua, also ate the honey and became unwell.
Vaughan van Rensburg, 36, the principal of Opoutere School near Whangamata, went to Waikato Hospital last week suffering violent seizures after eating comb honey. His mother-in-law from Christchurch, who was holidaying in Whangamata, was admitted to Thames Hospital with mild seizures. Her husband also felt sick.

The Food Safety Authority does not know how much honey had been sold through the three outlets.
Spokeswoman Trish Pearce said Mr Prout would be interviewed today.

He had been asked to provide a catalogue of his stock and where it has been distributed during the past six months.

The agency says honey should not be collected for eating in Coromandel, Bay of Plenty and Marlborough in autumn because of the danger of poisoning from bees visiting tutu bushes.
Coromandel, eastern Bay of Plenty and the Marlborough Sounds are areas where conditions favour the production of toxic honey.

These include concentrations of numerous tutu bushes, high numbers of vine hoppers and hot dry weather to allow the honeydew to build up on the tutu.

Conditions this year were particularly suitable for toxin production.

DANGER AREAS

The only areas where the toxin can get into honey are Coromandel Peninsula, eastern Bay of Plenty and Marlborough Sounds, from January till April.

Beekeepers are required to remove hives before the danger period or monitor the tutu plant, vine hopper and foraging conditions. Honey becomes toxic when bees gather vine hopper honeydew from tutu.

Exporters must complete a declaration stating when hives produced honey.

Honey is not tested, and small producers who sell locally do not have to sign the declaration.
The Beekeepers Association is calling for a review of current rules.

The last case of commercial honey poisoning was in 1974.

Louisville's zoo loses tiger to seizures

The tiger named Boris died March 16, 10 days after the zoo staff observed the big cat suffering a seizure. He had a second seizure several days later. At age 17, Boris was considered old for a big cat.

Even though a cause of the seizures could not be determined, Boris was given medication in an effort to control them.

"Our medical evaluation suggested the cause of the seizures was most likely in his brain," said Dr. Roy Burns, the zoo's veterinarian.

Boris began to have more seizures on March 16, despite treatment.

"His prognosis was not good," Burns said. "The medication to control the seizures was not working, and he was also showing signs of spinal disease suggested by weakness and instability in his rear legs."

Zoo staff then made the decision to euthanize Boris.

"We miss him terribly," said Dave Hodge, a keeper who cared for Boris, who weighed more than 400 pounds in his prime. "Even though he was big and tough, he really enjoyed greeting visitors when they came to see him at his exhibit. He was definitely a special cat."

Boris was one of a set of triplets born at the zoo in 1990. He was sent to the Ellen Trout Zoo in Lufkin, Texas, in 1994 and then returned to the Louisville Zoo in 2002.

He sired two female offspring, both of whom are now housed at the zoo in Columbus, Ohio.
The death leaves the Louisville Zoo with just one Amur tiger, 16-year-old Sinda, and three Sumatran tigers. The zoo is working with the Association of Zoos and Aquariums to bring in at least one more Amur tiger.

There are about 500 Amur tigers left in the wild. Their native habitat is primarily far eastern Russia. In captivity, there are about 150 in North America and about 315 overseas.

Boy with rare form of Epilepsy in dire need of service dog

Christopher Mull made eye contact with his father before pushing his new Tinker Toy creation aside.

The 3-year-old Salisbury resident, wearing a green polo on Wednesday, was diagnosed with Dravet Syndrome -- a rare form of epilepsy -- in December, which is currently incurable.

"Christopher's been having seizures since he was 10 weeks old," said his mother, Karen Mull, who watched her husband, Kevin, follow their son into the other room. "He used to have as many as 150 seizures a day."

In May, the Mull Family will hold a "Courageous Christopher 5K -- run/walk and stroller strut" to raise awareness about Dravet Syndrome and obtain funding to purchase a seizure response dog, through the 4 Paws For Ability organization.

Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy, is a progressive childhood neurodevelopmental disorder characterized by severe epilepsy that does not respond well to treatment, according to the International Dravet Syndrome Epilepsy Action League. Research estimates the prevalence of this rare disorder has ranged from 1:20,000 to 1:40,000 births.

Mull's life has consisted of multiple seizures, emergency room visits, hospital stays, failed medications, respiratory failure after seizures, a month in the hospital facing near death, the ketogenic diet -- high fat, adequate protein, low carbohydrate meal plan-- and six different neurologists, said Karen, a physician's assistant for Peninsula Regional Medical Center.

"Christopher will want to play with his brothers in the other room while I'm cooking dinner in the kitchen," Karen said. "But he needs to be in there with me in case he has a seizure."

The seizure response dog will help alert Mull's parents to seizure activity, assist him with his balance, and provide emotional support when needed.

"We must raise $11,000 to pay for the cost for the training and placement of this service dog into our home," Karen said.

Seizure response dogs are allowed to go everywhere the child goes as long as an adult team member -- Mull's father, Kevin -- is trained to handle the dog.

Seizure response dogs can also provide a measure of comfort by providing a distraction during unpleasant medical procedures, such as blood tests. Seizure medications can cause behavioral and balance issues for the child.

All 4 Paws dogs are trained in behavior disruption, which allows the parents to give the dog a command to interact with the child. They also can support the child by wearing a harness they can hold onto to stabilize themselves, Karen said.

Dog owner parents have reported their child having fewer seizures since the dog entered their home, according to the 4 Paws organization. This is believed to be the result of a reduction in the child's stress level through the comfort they find in their new companions.

Other parents have reported the dog becomes stressed, wines, or barks when their child has seizures. This is not something the dog is trained to do, but a response they make on their own.
"We keep a baby monitor on at night to listen if Christopher has a seizure," Karen said. "But we worry we might not be able to hear him -- the dog will be able to pull the pillows and blankets away."
For a significant number of children with Dravet Syndrome, secondary problems include sleep disturbance, slowed physical growth, movement and orthopedic disorders. However, despite being at increased risk for accidents and infection, an individual with Dravet Syndrome has an 85 percent chance of surviving into adulthood, says the International Dravet Syndrome Epilepsy Action League.

"Christopher was diagnosed at a relatively young age," said Kevin, a Peninsula Orthopedic physician's assistant. "Some of these children and families go years and years without finding an answer -- because it is so rare."

Once the Mulls achieve their fundraising goal of $11,000, they will go to Ohio for a two-week training session with their new companion.

The new dog will be matched to suit the entire family, which includes three other children, Connor, 7, Casey, 5, and Catherine "Callie", 1, and dog, Molly.

"Christopher doesn't know he's getting the new dog," Karen said. "But he loves them -- whenever you mention 'dog' he'll stick out his tongue."

The child's behavior shows little indication his illness has affected his happiness.

"He greets every passerby with a big 'hi' and anxiously awaits their returned response," Karen said. "He runs with open arms and a huge smile to greet anyone who comes to the house and Kevin and I as we come home from work."

Man with history of seizures faced tragic death

A Topeka man is dead after being pulled from a tributary of the Kansas River.

Emergency responders called to the area by friends of the man Wednesday evening tried to revive him, but he was pronounced dead at the scene near a treatment plant on Topeka's northeast side.
Shawnee County deputies do not suspect foul play, adding that the man's relatives said he had a history of seizures. As of late Wednesday, investigators did not know what caused the man to go into the water.

Authorities have not released his name.

Police say the man had been fishing with a group of people but was alone when he fell into the water.

Patients with seizures volunteers for brain surgery

Brain surgery might seem like a last resort, but some patients struggling to control their epilepsy are volunteering to test a new treatment option. It's one that involves placing wires with electrodes directly in the brain. It's part of the drive to discover a better treatment for epilepsy when medications fail.

Neurosurgeon Peter Weber specializes in brain surgery to treat epilepsy. When we visited Dr. Weber, he was implanting wires with electrodes directly into the brain of patient who was a candidate to have part of her brain removed since her seizures originate from both temporal lobes.
Careful computer mapping insures a safe path through the brain for surgeons to follow in the operating room. The wires with electrodes are attached to a tiny computer.

"We're implanting a computer in their brain that monitors when they're about to have a seizure, and then if it senses that it's about to happen, it sends a small shockwave into the brain to try to stop a seizure even before it happens," says Dr. Weber.

The NeuroPace computer and battery is quite thin and lightweight. It fits right into a tray which is implanted directly to the patient's skull.

"This device can record data constantly over 24 hours, 48 hours while you're walking around town, working in your office, or cooking a meal. It's what's happening in your brain in a normal situation," says Dr. Weber.

Shannen Soldate is one of the trial participants. For more than 20 years, she's struggled to control her epilepsy, even having a small section of her brain removed.

"I had gotten to the point where I was terrified, but I was ready because I really felt that there was no other option," says Shannen.

But her seizures continued. A year and a half ago, she and her husband decided she should enter the NeuroPace clinical trial. Every participant gets the device. Half the group has it turned on right away, the others get theirs activated after five months. The Soldates say the difference is incredible.

"Big changes. She's much more energetic, much more lively, going out, doing things, she's not stuck at home," says Eric Soldate, Shannen's husband.

Shannen's gone from dozens of seizures a day to just a couple every few months.

"What they're seeing with the readings when I upload the data through my device to them, they're seeing it happen, and the device is stopping them before I even know it's happening," says Shannen.

For Dr. David King-Stephens of California Pacific Medical Center in San Francisco, the amount of data he's able to collect and analyze from patients like Shannen is revolutionary.

"In the past, the only way we could get this data was to do invasive EEG monitoring," says Dr. Stephens.

Now patients download their information once or twice a day from home. It's a process that takes just a few minutes. The tiny computer stores about 30 minutes of information over a 24-hour period.
"You can make the computer identify the abnormal electrical pattern and then deliver the therapy. The sooner you can identify the occurrence of the abnormal pattern, and the sooner you can deliver the therapy, the better chance of suppressing the seizure," says Dr. King-Stephens.

Shannen's brain is getting about 400 stimulations a day, but she doesn't feel a thing.

"Stimulating the brain with electricity doesn't hurt because there are no pain receptors in the brain," says Dr. King-Stephens.

"We know that it works, it's just trying to fine tune it now to figure out who those people are who will get the most benefit out of it," says Dr. Weber.

Dr. Weber believes epilepsy treatment may be just the beginning of this responsive technology that's given Shannen the chance to live life without fear of seizures for the first time in decades.
Carolyn Johnson: "What if you were told the trial's over, you have to give it back?"

Shannen Soldate: "I'd fight 'em."

Epilepsy patients are still being recruited nationwide for the trial. California Pacific Medical Center in San Francisco is one of the few West Coast sites. If all goes well with the clinical trials, it'll likely still be several years before the device would be available to the public.

For more information on the NeuroPace clinical trial, call (866) 618-3616.

Generic medecine for Epilepsy patients? Not a good idea!

Epilepsy is a neurological condition that produces disturbances in the normal electrical functions of the brain. These can trigger seizures.Epilepsy and seizures affect more than 360,000 Floridians. About 84,600 of these are children.Ten percent of all Americans will experience a seizure in their lifetime. Three percent will develop epilepsy by age 75.

-Epilepsy Foundation of Florida

A physician writes a prescription for a brand-name drug, and the pharmacy substitutes a cheaper, generic medication. Both are approved by the Food and Drug Administration, which maintains that a generic substitute is equivalent to the original medicine. But are they always interchangeable?
Not if you are a patient with epilepsy, according to the Florida Epilepsy Foundation, which warns that when drugs are substituted, it is a serious medical issue.

The advocacy group is urging state legislators to support a bill called the Patient Safety Act (SB 2414 and HB 811) that would require a pharmacist to notify and secure informed consent of both patient and physician before altering any epilepsy patient's anticonvulsant prescription.

It's legislation that could affect more than 360,000 Floridians with epilepsy. More than 84,600 of them are children.

Dr. Basim Uthman, associate professor of neurology and neuroscience in the UF College of Medicine, explains that living with epilepsy is like walking a tightrope, where one slip can have dire consequences.

"You finally find the right medication at the right dose for a patient, and a small change can result in seizures," he warns. "The consequences can be major."

For comparison, Uthman describes a patient with high blood pressure controlled by medication. The patient sees his physician, who finds his blood pressure slightly elevated and adjusts the dosage of his meds.

The patient didn't feel a change when his blood pressure went up, and he didn't feel a change when his body made the adjustment to the new drug dosage.

In this case, it's more like driving down Interstate 75 than walking a tightrope, according to Uthman, who is also director of clinical neurophysiology laboratories and assistant chief of neurology service at the Gainesville Veterans Affairs Medical Center.

Veer slightly out of your lane, and you've got plenty of room to make the adjustment.
Slip on a tightrope, and you're in trouble without warning.

Uthman describes a 58-year-old patient who had been seizure-free for many years, although he was epileptic.

"His medication was changed by a pharmacist without telling him," the neurologist said. "They gave him the same dose, milligram for milligram, but it was not the same. They can do that, if the doctor does not write on the prescription 'medically necessary.' "

Uthman's patient had a seizure while driving, lost consciousness, totalled his car and subsequently lost his job.

"It took him two years to get his life back on track," Uthman said.

The chief executive officer of the Florida Pharmacy Association, Michael Jackson, said Wednesday that the Tallahassee-based group is not in favor of the bill.

"It is going to create a huge administrative burden on pharmacies and barriers to patients," he said. "We pharmacists cannot do anything without getting authorization from the physician to make a change."

On the other hand, Jackson points out, all the physician has to do is write "medically necessary" on the prescription and there is no problem.

"I certainly would not like to see a patient who's condition is very brittle go without medication because there was a need to get a signature on a piece of paper," he said.

Dr. Chris Sackellares is a professor of neurology and neuroscience at the McKnight Brain Institute in UF's College of Medicine. His research focuses on epilepsy and seizure disorders.

He explains that the FDA requires that generic drug formulations must be bioequivalent to a name-brand, patented drug. That does not mean they must be identical. The active ingredient will be the same, but the compounds they are mixed with need not be.

Currently, 64 percent of all prescriptions filed in the United States are for generics. In many cases, a patient's health plan requires him or her to pay a higher proportion of the cost for name-brand drugs.

Officials with the FDA say these lower-cost generics offer the same dose of the same active ingredient, delivered in the same way and manufactured according to the same quality standards.
Dr. Leslie Hendeles, a professor in the College of Pharmacy and the department of pediatrics at the University of Florida, supports that position.

"The 'bioequivalent' rating means the FDA required an appropriate study demonstrating that the rate and extent of absorption of the generic was not significantly different from the brand product," Hendeles reported in an e-mail to The Sun.

Some physicians, including Uthman and Sackellares, beg to differ. In the anticonvulsant drugs used to treat epilepsy, the two specialists agree that small variations can result in changes in levels of the drug in the patient's blood stream - changes that can trigger a seizure or toxicity. One leaves the patient unconscious, the other leaves him or her drowsy, wobbly and confused.

Uthman emphasizes that he is not campaigning against generic equivalents.

"We all want to have a cheaper drug that works for the patient," he said. "If he is doing fine on a reputable generic, I don't want him switched to a brand name. We'd have the same problem!"
What he wants, he said, is to change the law so that the decision over which drug to take is left to the epilepsy patient and the physician.

"I am not pushing for brand names, I am pushing for consistency in the delivery of the drug," he said.

He advises epilepsy patients who see him as a specialist but also have their own physician to ask the doctor when he or she writes the prescription to put down "medically necessary, no substitutions."

Furthermore, if the patient has been on a generic and it is working, the doctor should look up the name of the generic and its manufacturer and list that on the prescription.

Meanwhile, Uthman supports the Epilepsy Foundation's push to pass the Patient Safety Act in the current legislative session.

"I think it is good medicine, and I hope it will become law," he said.

Can Yoga help control Epileptic seizures?

Stress, among other things, triggers the frequency of epileptic fits a disorder of the central nervous system characterised by loss of consciousness and convulsions.

There is evidence that shows stress results in sudden and unexplained deaths in epileptic patients. A study conducted at the National Institute of Mental Health and Neurosciences (NIMHANS),
Bangalore, suggests certain forms of yoga, along with regular treatment, can help reduce seizures in patients suffering from refractory epilepsy. Patients suffering from refractory epilepsy get more than two seizures every month.

Epilepsy affects 40 million people worldwide. But effective treatment is not yet available. On an average, 15 per cent of patients remain epileptic despite taking more than two drugs. One of the reasons for frequent seizures is that high levels of stress lead to release of hormones that excite brain cells, resulting in seizures. “Yoga maintains the functional harmony between body and mind, lowering stress levels,” says Sumitra R K, yoga therapist with Vivekananda Yoga Anusandhana Samsthana, Bangalore.

The study, funded by the Central Council of Research in Yoga and Naturopathy, was conducted on two groups — one that practiced yoga and the other that did simple exercises.

Regular epilepsy medication was administered to both the groups.

The yoga group practiced suryanamaskar, ardhakati, chakrasana, bhujangasana, salabhasana and savasana followed by pranayama for 20 minutes, six days a week. There was significant improvement in those who practiced yoga, including two who were completely cured, says T N Sathyaprabha, associate professor, neurophysiology, NIMHANS.

The other group that was asked to do simple exercises showed higher physiological stress compared to the yoga group. No other significant changes were observed in the non-yoga group. The study was published in Epilepsy and Behaviour (Vol 12, No 2). Mahesh Kuriyal, a psychiatrist from Dehradun, says epileptic patients tend to seclude themselves.

“Yoga, as an adjuvant therapy, can help regain the psychological fear by lowering stress levels.” Nandkishore, a neurologist from Dehradun, says a detailed study can yield positive treatment for epilepsy patients but it is too early to say that yoga can reduce seizures.

Easter treats can cause seizures in man's best friend!

EASTER might mean chocolate to many, but vets are warning people not to give their pets the treat.

Emergency visits to vets spike over the Easter long weekend.

While the chemical found in chocolate, theobromine triggers the release of the euphoric hormone, seratonin, in humans, in dogs it can lead to intoxication and poisoning.

"Because of their indiscriminate eating habits, Easter is one of the times we see a lot of dogs with chocolate intoxication," said emergency vet Dr Sarah Haldane, from the University of Melbourne Vet Clinic and Hospital.

"And other pets can be affected too."

Fifty grams of dark chocolate per 5kg of a dog's weight, or 200g of milk chocolate, is dangerous.
Initially chocolate upsets pets' digestive systems due to high levels of fat and sugar, triggering vomiting, nausea, increased urination and diarrhoea.

But six to 12 hours later, the chemicals kick in, causing pets to urinate more and become agitated and excitable.

More dangerous symptoms can develop including an irregular heart beat, blood pressure changes and seizures, which if left untreated can be fatal.

Dr Haldane said chocolate and baked goods containing chocolate should be kept out of reach of pets.

"While we like to think of our pets as part of our family, it doesn't mean they can eat what humans eat," she said.

"The tiniest of pieces is not going to do any harm but it gives them a taste for it which can lead to problems for everyone."

If chocolate has been injested by pets, owners should contact their vet immediately for advice, she said.

But if the pet is having seizures it should be taken to a vet immediately.

Service dogs also help patients with seizures

At 3 and 4 months of age, it’s hard for these puppies not to wrestle around and act like, well puppies. But these particular puppies have big responsibilities ahead of them.

Certified as a field trainer for the Hearing and Service Dogs of Minnesota, Linda Livingston Wiedewitsch is helping train several puppies and their foster families.

“We are in training, too,” said Jenny Berube of Pelican Rapids. She has been working with Vern, a 4-month-old yellow lab, since Dec. 28. “He came with a manual,” she said of the things he needs to be taught and how to do that training.

Hearing and Service Dogs, not to be confused with Leader Dogs for the Blind, are dogs being groomed to assist those in wheelchairs, who are hearing impaired, have autism or have seizures.
Wednesday evening, the group of five dogs, plus one Leader Dog in training, made a trip over to the Detroit Lakes Fire Department to get the pups “accustomed to firemen in full gear,” Wiedewitsch said.

After being placed with a person in need, if there is a fire, “that person is going to be stressed already, and don’t need dogs stressed too,” she said.

Dogs were encouraged to sniff the firemen’s suits lying on the floor of the fire hall. With the help of firemen Dave Baer and Jim Sinclair, the dogs were then able to interact with the men suited up and equipped with their breathing masks.

Wiedewitsch said this portion of the training in not just about getting the dogs accustomed to firefighters, but more so, “desensitizing” them to situations that could arise so they can concentrate on helping their owner.

While with the foster families, the puppies are exposed to sights sound and smell they need for training. She said they have gone to the grocery store, Wal-Mart, schools, hair salons, on airplanes, mass transit, anywhere a future owner may need to go in everyday life.

Once the puppies are taught the basic socializing skills, they are given aptitude tests to determine what they excel at and are then trained in more specific areas.

For instance, dogs to be placed with hearing impaired clients learn to distinguish certain sounds like doorbells, smoke alarms, a baby crying and a telephone ringing.

Dogs helping with those who have seizures learn to stimulate the person by licking them, bringing a bottle of pills, getting the phone or getting help in some other form.

For those confined to a wheelchair, dogs are trained to push the button to open automatic doors, place packages on counters and reach other items a confined person wouldn’t be able to reach.
Training the puppies takes anywhere from 13 to 14 months for the basics, and 2 to 5 months more for the more specific training.

Puppy raisers, or the foster families, are the trainers like Berube, working with the puppies on their beginning skills.

Berube said this is her first time training a service dog and not knowing what to expect, there’s been more involved than she thought.

“I always saw Linda (Wiedewitsch) in the courthouse with her dog. I was always interested,” she said.

Wiedewitsch has been working with Leader Dogs for years, and she said training the service dogs is a natural fit for her, and something she’s enjoying.

“It’s an extension of what I’ve been doing.”

She worked with a dog, Rudy, last summer that was then paired with Lake Park resident JoAnn Schermerhorn, who has epilepsy.

Berube said after she saw a flyer recruiting foster families, she decided to sign up.

For Margaret Grondahl of Staples, the decision to foster Maya, a 5-month-old yellow lab, was easier. She had already gone through training with her dog, Biscuit, who is trained as an occupational therapy dog, who Grondahl uses during her work as an occupational therapist.

Grondahl received Maya the first weekend in November. It’s usually not determined until later in the training process what service the dogs will be used for, but Grondahl said she already knows Maya will be used as a breeding dog. Knowing her good disposition and ability to learn, after the pup turns 2 years old, she will be bred to produce future service dogs.

Another puppy raiser who had an easier decision to train is Luanne Thorsvig, Detroit Lakes. Not that giving Ripley back at the end of training will be easy.

Thorsvig was working as a trainer at Lucky Dog Boarding and Training Center, and when Ripley came through the door, Thorsvig said she had to have the golden retriever. This is her first time training a service dog.

“I used to work for home health, and I like to give back (to the community) and thought this would be a good way,” she said.

She started working with Ripley, 10 months, in September and says she “had no clue when I started” what the training would entail. But, “it’s been fun.”

Another newcomer to the puppy raising world is Janie Mullikin, Pelican Rapids. She has been working with 3-month-old yellow lab Guido for only a week.

She said she decided to become a foster family because “my cousin is blind and I was always intrigued by that,” she said of the use of service dogs.

Although she didn’t know exactly what to expect when it came time to start training, she said it’s been better than she thought.

The hard part is when the training is over and she has to give Guido back.
“I try and focus on the fact that he’s helping someone out.”

Dream come true for toddler with seizure disorder

For Peggy Coover, when her 2-year-old daughter Ariel meets the mermaid of her namesake, it will be something she’ll never forget.Same goes for the help it took to set up this magical meeting for the Shippensburg residents.

A trip to Disney World is not exactly something she could have done on her own.There’s the airfare, the paperwork for formula and medicine and the wheelchair, oxygen tank and other hefty equipment that Coover wouldn’t be able to lug around an airport.That’s where the Make-A-Wish Foundation stepped in.

Teen's cocaine dealings caused son's seizures

A Kansas City teenage mom faces child endangerment charges after hospital tests revealed that her 2-year-old son and two other young children ingested crack cocaine.

The children apparently sampled crumbs that the mom left behind when she darted out to sell drugs, court records allege.

Children’s Mercy Hospital staff contacted police after one of the children suffered seizures earlier this week.

Jackson County prosecutors on Thursday charged Tasha Cole, 17, with four felony counts of endangering the welfare of a child. They requested a $75,000 bond.

After giving police several false stories, Cole admitted that she left the children with a friend while she sold drugs, according to the affidavit filed in court to support the charges.

According to court records:

Cole told police that when she returned to the apartment in the 3000 block of Harrison Street, she found the children playing with the plate on which she had “cut” the crack cocaine. A razor blade lay on the floor.

Cole told detectives that when she put the plate down earlier, it had crumbs of cocaine on it. She told police that she picked up the razor blade but left the plate. About 10 minutes later she realized the children were playing with the plate, and she took them across the hall and told relatives what happened.

One relative wanted to take the children to the hospital, but Cole told her not to because she was “scared.” Later, when her son began having seizures, she took him to the hospital.

Not told about the cocaine, hospital staff treated the boy, took a urine sample and released him. Later, the sample came back positive for cocaine.

Hospital staff asked Cole to return and notified police.

As part of the investigation, the other two children who had been in the apartment, ages 3 and 2, were checked. Both tested positive for cocaine, according to the court documents.

The link between seizures and the Tuberous Sclerosis Complex

Margaret Cox believes it was more than a coincidence when UAB and Children's Hospital opened a clinic to manage tuberous sclerosis complex the same month that her baby boy was diagnosed with the rare genetic disorder.

"It was such a blessing from God," Cox said. "All this fell into place."

The clinic, started last April, serves patients from throughout the Southeast the second Tuesday of each month. With its specialists and patients, the clinic has made Birmingham a hub of work involving tuberous sclerosis complex, more commonly known as TSC.

The complex causes tumor-like growths called tubers. These growths can affect the skin and internal organs, and can be life-threatening when found in the kidneys, heart and lungs. TSC often affects the brain, and can cause seizures, mental retardation or autism. It occurs in about 1-in-6,000 births, and it can be inherited or caused by a spontaneous genetic mutation.

Cox said there was no hint of problems when her son Michael was born. Then, when he was 8 weeks old, his hands started shaking and twitching. Cox videotaped the incidents and took Michael to the pediatrician. He was referred to Children's Hospital, and his shaking was diagnosed as seizures. Further testing revealed tubers in his brain, and a genetic test confirmed it was TSC.
It was a disorder that Cox had never heard of, but her husband and Michael's father, Dr. Jared Cox, knew a little about it.

He had just finished medical school and is now a resident in urology at UAB.

With the new TSC clinic opening, the Cox family had a place to go for specialized care. Dr. Martina Bebin, a neurologist, said the clinic is staffed by herself; Dr. Bruce Korf, chair of the UAB Department of Genetics; and Dr. Amy Theos, director of pediatric dermatology at Children's Hospital.

So far the clinic has had about 70 patients from throughout the Southeast, and many of them had never seen a specialist for their conditions, Bebin said. With proper care, a person with TSC can have a normal life span, but the condition sometimes requires careful management.

For instance, Michael is given three medications daily to control his seizures. His mother said the medications work well, but as Michael grows they have to be continually adjusted. "It's a constant balancing act," she said.

The clinic also sparked creation of a chapter of the Tuberous Sclerosis Alliance. Carole Pitard of Mountain Brook, co-chair of the chapter, said the group provides support, education materials and research funding. It also raises awareness about the condition.

"So many people are not aware of TS," she said.

The alliance has planned a fundraising walk Saturday, April 5, entitled "Step Forward to Cure Tuberous Sclerosis Complex." For more information, go to www.stepforwardtocuretsc.org.
Korf, a national authority on medical genetics, said two genes have been associated with TSC, and mutation of either can lead to the disorder.

The genes hold codes for the production of two proteins, hamartin and tuberin, he said. These proteins are involved with cell growth and differentiation. Given the increasing knowledge of genetics, researchers are working on new treatments that go beyond managing symptoms, he said.

"The overall goal of research ... is to develop treatments for the condition based on underlying genetic mechanisms of the disease," he said. "There already have been some clinical trials, and we expect that the pace of developments of new candidates for treatment will increase as more is learned."

What qualifies someone as suffering from Epilepsy?

Dr. Robert Bonwetsch, a member of the Danbury Hospital's Department of Medicine, Section of Neurology, and practicing physician at Associated Neurologists, P.C., defines seizures as a change in awareness, sensation or behavior due to abnormal electrical changes in the brain.
"Having at least two unprovoked seizures qualifies a patient for having epilepsy," said Dr. Bonwetsch, who recently spoke at a Medical Town Meeting sponsored by Danbury Hospital called Epilepsy Update 2008.

The incidence of epilepsy is highest right after birth and then goes up again after age 50. Because epilepsy does not discriminate among races and can develop at any age, doctors must keep a watchful eye on seizure-prone patients.

Some patients with epilepsy will undergo electroencephalography (EEG) monitoring to determine in which part of the brain their seizures are beginning.

Although seizures can derive from almost any part of the brain, they most commonly initiate from the temporal and frontal lobes.

"We use EEG to help us decide which medications will be most appropriate," said Dr. Bonwetsch. "For patients with continuous episodes, we also use video-EEG monitoring which can be done at Danbury Hospital."

In cases that may require surgery, it is common for patients to receive CT scans or MRIs so their doctor can look for any abnormalities that may be causing the seizures.

Treatments for epilepsy are very patient specific, meaning that one particular treatment will not cure the general population of seizure sufferers.

While medication is the most utilized treatment, it is reported that only 70 percent will gain control over their seizures. It also is common for adult patients to remain on medication for the rest of their lives.

Just as there are treatments, there are potential long-term side-effects of which patients must be aware while staying on these long term medications.

Some side effects include weight gain or loss, overgrowth of the gums, numbness caused by neuropathy, hair loss and an increased risk of osteoporosis.

"We typically require patients who have been on the older anti-epileptic medication for over five years to receive bone density scans to evaluate them for signs of osteoporosis," Dr. Bonwetsch adds.

"We like to make sure our patients are getting enough calcium and vitamin D, and I would personally recommend weight-bearing exercise and no smoking."

Complications with medication typically arise in women by interacting with birth control and causing various fertility issues.

The elderly are also affected by running the risk of developing an altered metabolism, enhanced sensitivity to various side effects, and conflicting issues with drug-to-drug interactions.

There are several treatment options in development, including the surgically implanted NeuroPace device.

Those seeking additional information may visit www.danburyhospital.org or call the hospital, 203-739-7247.

Toddler suffered fatal seizures caused by abusive stepmother

A 27-year-old Wichita woman was charged Friday with first-degree murder in the death of her 2-year-old stepdaughter.

Katie Robertson fought to retain her composure as she heard the charge in Sedgwick County District Court. She is accused of killing Daytona Robertson, the daughter of her husband of just a few months.

Her bond was set at $100,000, and her preliminary hearing was scheduled for March 19.
Daytona died Wednesday at Wesley Medical Center, four days after she was brought to the hospital by ambulance, Capt. Randy Landen said.

Katie Robertson called 911 at about 5 p.m. on Feb. 22 to report that the girl was having seizures at their home in the 400 block of North Harding. Doctors at Wesley called police after determining the seizures were caused by "blunt force trauma" to the head, Landen said.

"It would have to be new injuries," Landen said. "I'm not aware of a history of seizures prior to this particular instance."

An autopsy was performed Friday, and Landen said he hoped it would provide answers about how the fatal injury occurred.

Another small child was present in the home when Daytona's seizures began, but investigators were only able to get "limited" information from the child, Landen said.

Daytona's father was not home at the time of the 911 call, he said.

The couple met last fall and had been married a few months, Landen said. Records show the couple obtained a marriage license in December.

Two children, ages 1 and 6, were taken into protective custody and have been released to their biological fathers, Landen said.

A memorial fund has been set up for Daytona at Chisholm Trail State Bank. Donations can be mailed to the bank at Box 4658, Wichita, KS 67204. They can also be dropped off at the bank's branches in Bel Aire or Park City.

Funeral arrangements are pending with Downing & Lahey Mortuary East.

Young girl to be honoured by Scouts for saving brother's life!

Sarah Lindsay was sleeping peacefully on the morning her brother's shouts broke the silence.
Startled, the 11-year-old girl climbed out of bed and followed the sound of her brother's voice down the hall into the living room. Her brother Chase, 21, was trembling on the sofa.

"My medicine," he groaned.

Chase was having a seizure. Sarah knew her older brother had suffered at least two seizures, but neither she nor anyone else in her family had seen him have one.

Cole was turning pale and twitching. And she was home alone with him.

But Sarah kept her cool on that October morning, and that is the reason that today she will receive the Girl Scout Medal of Honor, the second-highest award bestowed by the New York-based Girl Scouts of the USA.

Sarah ran for the kitchen counter and grabbed Chase's medicine. She took Chase the pill and a glass of water, but his body twitched and the water spilled. The pill fell out of his mouth.

Sarah called her father, Gary, at work at Lockheed Martin. He told her to call 911; he was on his way.

Sarah dialed 911 and explained what was happening. She needed an ambulance right away.
She looked at her brother.

"He was sort of snoring with his eyes open," she said. "His face had gotten pretty pale, and his lips were kind of blue. It was a little scary. But I didn't cry."

Instead, she shoved the coffee table away from the couch. Chase was twitching, and she didn't want him to bang his head. She opened the front door to help paramedics and the police spot the house.

She tried to keep Chase calm.

"They're coming, Chase," she said. "It'll be OK."

It only took a few minutes for police and paramedics to arrive. Chase was rushed to the emergency room, where he underwent tests for most of the day. The doctors said he would be OK, though they're still trying to figure out what is causing his seizures.

"I'm proud of my sister," Chase, now 22, said recently. "If she hadn't been there and handled it so well, there's no telling what could have happened to me."

Sarah's mother, Felicia, who was in California visiting her ill father when the seizure happened, asked the Girl Scouts whether Sarah's actions had earned her a patch. But when Scout officials heard the story, they said she deserved more.

Sarah, now 12, is a member of Troop 2507 of the Girl Scouts of Texas Oklahoma Plains.

The sixth-grader at the Applied Learning Academy in Fort Worth will be honored at 9 a.m. at the Bluebonnet Star Community Thinking Day event at Benbrook United Methodist Church.

Sarah is excited. But she also has other important things to worry about -- like what if Chase has another seizure.

Soon after that October day, Sarah got on the Internet and read about seizures. She and her parents sat down together and came up with an emergency plan.

"I'm just glad my brother is all right," she said. "And now we know what to do if it ever happens again."

Can E. Coli be linked to seizures?

A local family is taking their near-tragedy of a year-and-a-half ago and hoping to use it to raise funds for a good cause. Carolyn and Victor Mendoza, along with their son Kevin, will be part of an annual radiothon that will benefit the University of New Mexico Children's Hospital's. The radiothon starts Wednesday and runs through Friday.

In July of 2006, Kevin Mendoza got sick. His parents, Carolyn and Victor, took him to his pediatrician with a bad case of diarrhea. The doctor sent the family to the University of New Mexico Hospital (UNMH) where it was later found that the youngster had contracted E. coli.

"We're not sure where he got it, but it was about two weeks before the spinach outbreak," Carolyn said.

Since there is no treatment for E. coli, they just had to ride it out, Carolyn said. Kevin was put on an IV to keep him hydrated, and the family waited for the disease to run its course.

Once a child has been exposed to E. coli, there is a chance that it will develop into hemolytic uremic syndrome (HUS). "He was diagnosed with HUS, and three days after he was admitted, his kidneys failed," Carolyn said.

Things quickly cascaded from bad to worse — Kevin's lungs filled with fluid, he developed pancreatitis, he required blood transfusions and daily dialysis. "We didn't know when it was going to stop," his mother remembers.

The HUS has different stages, and the further in you get with the syndrome, the higher the fatality rate goes, Carolyn said. At one point, Kevin couldn't control his eye movements and physicians were concerned he was having seizures, Carolyn said.

"They did tests, and he wasn't having seizures, but the next stage is a coma," she said. "He slept for three days straight and didn't open his eyes, but he never went into a coma."

After five weeks of ups and downs, Kevin's kidneys began functioning again, but they are scared and damaged. "Most kids do recover, but with the scar tissue we have a long road ahead," Carolyn said. "We are probably looking at a transplant at some point. The doctors can't say when because they aren't sure what his body will do."

Now that Kevin is out of the woods and home again in Los Lunas, the Mendoza family has been working to help UNMH any way they can. "They have done a lot of things for us," Carolyn said. "We owe tons of thanks to them."

The family has participated in other fundraising efforts for the hospital, which is a Children's Miracle Network hospital, and will be part of the radiothon. "We will be on Friday afternoon," Carolyn said. "I don't really know what to expect. We're just going to tell our story."

Kevin was also featured in a television commercial promoting the radiothon, his mom said. "It's cool to see him in the commercial, but then you remember why," she said. "We thought we were going to lose the little guy."

Jackie, Tony and Donnie of 100.3 The Peak will broadcast the radiothon live from the sixth floor of the UNM Children's Hospital. It will run from 6 a.m. to 6 p.m. nonstop today through Friday.

Listeners can make a pledge by calling 272-1003 or 1-866-811-1003. Visit www.1003thepeak.com for more information about the radiothon.

On Thursday, Feb. 28, those wishing to make donations to the radiothon can visit seven Albuquerque restaurants that will be donating a percentage of their sales that day to the radiothon. The restaurants are Applebee's, Boston's Gourmet Pizza, Golden Corral, Hot Dog On A Stick, Jersey Jacks, Red Robin and Texas Land and Cattle Co.

Pittsburgh had to reinstate firefighters afflicted with seizures

An arbitrator has ordered the City of Pittsburgh to bring back to work a firefighter who had two seizures last year and sued the city in federal court last week.

The arbitrator's award, issued yesterday and separate from the federal lawsuit, compels the city to furnish Fire Capt. David Cerminara with back pay that a union attorney said will total at least $35,000.

Joe King, president of International Association of Fire Fighters Local 1, said the award stems from the city's abandonment of a past policy of accommodating firefighters with health problems. "It's their way or no way, and that's what came back and kicked them," he said.

Capt. Cerminara, 51, of Banksville, is a 27-year veteran of the bureau who suffered seizures while sleeping in March and April. He was placed on medication, suffered no further problems and was released to return to work by his doctors in May.

Then a doctor paid by the city wrote to Capt. Cerminara's neurologist, indicating that the city follows a national standard that a firefighter be off seizure medications and seizure-free for one year before he can work. The neurologist rescinded the work release.

The arbitrator, Downtown attorney John J. Morgan, found that the one-year seizure-free standard applies only to new recruits, not to established firefighters.

Mr. Morgan also quoted city officials as testifying that the bureau does not make accommodations for firefighters with medical problems. He found that to be a change from past policy that the city should have negotiated with the union, but didn't.

"Having a policy stating that you are not going to accommodate employees with physical or mental impairments is equivalent to having a policy that expressly permits unlawful discrimination," said Josh Bloom, an attorney representing the union.

Capt. Cerminara hired attorney Samuel J. Cordes, who sued in federal court alleging that the city violated the Americans with Disabilities Act by using an inapplicable standard and keeping him off work. The complaint demands damages for distress and payment of legal fees.

The city has 30 days to appeal the arbitrator's decision to Common Pleas Court. Administration officials did not comment yesterday.

Are cold medicines linked to seizures?

D.J. Mannello, 9, hops off the school bus, bounces into his dad's insurance office in this seaside town and settles into a chair.

''Hi, honey,'' says Roxanne, his mother. Seconds later, her face freezes.

''Dan,'' she tells D.J.'s father, ``he's having another seizure.''

The boy's bright eyes dull. His head droops. He can't speak. His parents take him into their arms.
His father kisses his forehead: ``You all right, bro?''

Dennis James Mannello isn't all right. Since he was 16 months he has suffered almost-daily seizures, been in and out of hospitals, back and forth to doctors, on and off medicines and diets.
''Nothing seems to help him for very long,'' says Roxanne.

Dan and Roxanne blame over-the-counter cold remedies they gave their son on doctors' recommendations starting when he was 8 weeks old, when a case of near-pneumonia turned into chronic, thick-mucus congestion. They persist in that belief even though D.J.'s doctors disagree, and say his problems might be congenital or caused by early injury, but not by over-the-counter cold medicines.

ON A MISSION

No matter. Since D.J.'s first seizure, his father has been on a mission to get the government to take children's cough syrup and cold medicines off the shelves. The mission has taken him to FDA hearings and put him on national TV. In January, there was a taste of victory -- the FDA warned that over-the-counter cold medicines should not be used in children under 2.

''Serious and potentially life-threatening side effects can occur from such use,'' the agency said in its public health advisory.

To Dan Mannello, 42, it wasn't enough: ``There are still medicines on the shelves. There are still hundreds of thousands of dosages in people's medicine cabinets.''

The search for D.J.'s treatment has gone through half a dozen doctors and hospitals -- most recently to Miami Children's Hospital, where D.J. was examined by Dr. Trevor Resnick, the hospital's chief of neurology and professor of neurology at the University of Miami School of Medicine.

Resnick, while reiterating that D.J.'s seizures were not caused by cold medicines, says preliminary results suggest that he might be helped by surgery. D.J. is scheduled to have brain surgery at the hospital on March 13.

''We're keeping our fingers crossed,'' Mannello says.

Through his persistence, Mannello was the only member of the public to testify in October before an FDA advisory panel on the safety of children's cold remedies.

''It's too late for my son,'' he told the hearing officials. ``But I don't want it to happen to anybody else. Please do the right thing and remove these drugs from the shelves immediately.''

ABC News interviewed Mannello outside the hearing room, and the interview appeared with anchor Charles Gibson on ABC's World News Tonight that evening.

The FDA hearings were based in part on a September 2007 report, which documented how the agency had received 54 reports of deaths associated with over-the-counter decongestants and 69 reports of deaths connected to over-the-counter antihistamines from 1969 to 2006 in children, mostly 2 and under. The Centers for Disease Control and Prevention reported last year that at least 1,500 children under age 2 have had serious complications from the medicines from 2004 to 2005, including three deaths.

The advisory panel voted to ban over-the-counter cold products for children under age 6. Panel members said there was no proof the drugs helped children, and some evidence they caused damage. The FDA subsequently issued its public health advisory in January, warning the medicines not be given to children under age 2, the group most vulnerable to potential harm, studies show. The FDA is studying the issue for children between 2 and 6.

Drug manufacturers responded in three ways:

• Just before the hearings, they pulled from the shelves 14 over-the-counter cold and cough medications for toddlers and infants. These included Dimetapp, Robitussin, Tylenol and Triaminic brands.

• They vowed to fight a ban on medicines for children 2 to 6.

• They promised to study the dosage of children's cold remedies. Dosage has been a concern because, without studies of the medicines in children, doctors have had to extrapolate from adult dosages -- a process that some doctors say does not work.

''There is no problem with these products if they're used at the recommended doses at the recommended intervals,'' said Linda Suydam, president of the Consumer Healthcare Products Association, the drug makers' trade group. ``We feel they are products that parents need and want, and so they should be on the market.''

ACCIDENTS, DOSAGES

Suydam argues that most problems stem from accidental ingestion or incorrect dosage.

''Problems could be dealt with through education,'' she said. ``We want to educate parents not to keep them where their children can reach them.''

Dr. Joshua Sharfstein, Baltimore's commissioner of health, disagrees. He co-authored a petition that led to the FDA hearings. He started the petition after four children died in six years in his city. ''In 2006 the [Maryland] state medical examiner attributed the deaths in part to overdoses of common cold medicines,'' Sharfstein said. ``The labeling is complicated, which causes inadvertent overdoses. If there was a real benefit, you could try to fix that problem by educating the public. But we're talking about a mild illness -- the common cold.

``Why take the risk?''

D.J. Mannello was born in Tampa on Oct. 20, 1998. At eight weeks, his father says, a case of near-pneumonia turned into a chronic thick, sticky mucus.

''The doctor said he's too young for a prescription, so just give him an over-the-counter medication,'' his father says. His mother says that, following the label's instructions, they asked their doctor what dose to give their son -- but she doesn't remember which doctor or what dose was recommended. D.J. was given the medicine over several months, she said.

At 16 months, D.J. suffered his first seizure. Dan Mannello says a doctor at All Children's Hospital in St. Petersburg told them a blood vessel in his son's left frontal lobe had burst. An MRI found scar tissue in his brain.

D.J.'s original diagnosis in 2000: dysplasia without focal point, the father says. (The doctor who made the diagnosis declined to be interviewed.) Dysplasia is defined as ''abnormal development or growth of tissues, organs, or cells.'' The ''without focus'' part means there's nothing concrete on which to operate to correct it.

In the same year as D.J.'s diagnosis, Mannello saw a segment on 60 Minutes about dozens of lawsuits against manufacturers of cold medicines, including over-the-counter medicines containing the ingredient phenylpropanolamine (PPA). Several cold medicine manufacturers voluntarily removed the ingredient after a May 2000 study for the FDA by Yale Medical School suggested it might cause brain hemorrhages. The Mannellos have a bottle of decongestant they say they gave to D.J. that lists that ingredient.

The lawsuits are ongoing, said Hiram ''Ted'' Carey, of Robinson & Cole in Boston, who is handling some of them. But none has come to trial, and the size of out-of-court settlements isn't known because of confidentiality agreements.

''The big question in the trials is this,'' Carey says: ``Did the PPA cause the injury? If you can't get an expert to say so, you have a big problem.''

Dan Mannello tried to join the lawsuits, but his doctors wouldn't give him a diagnosis on which he could base a lawsuit.

Still, Mannello soldiers on. He's working now with Gene Odom, a Tampa product liability lawyer.
Odom is pragmatic: 'Some doctors will tell you, `I cannot say what was the cause.' That will be the battle. We will have other doctors look at the records and see if they think the drug could cause this problem.''

ATTENDING SCHOOL

D.J. is in third grade at Fuguitt Elementary in Largo, near St. Petersburg, enrolled in special classes for Individual Exceptional Personalities. It means no tests, no FCAT.

''He doesn't make it every day,'' his father says. ``But when he does he can run and play and laugh; he's a real hell raiser. He's very good at recognition, but he has a hard time communicating -- talking, writing.

``He gets hurt all the time. The school has me on speed dial. I can be there in five minutes.''

His mother goes on: ``He was having two or three seizures a day. He would start off across the floor and just fall on his face. It was hard to watch. He's had three or four broken noses, any number of goosebumps on his head, eight stitches in his skull, 10 in his leg; he has a scar on his forehead.''
Later in the day after his seizure in his father's office, D.J. is playing in the yard with his sister, Alexis, 12, and their dog, a ''refugee from the pound'' mixed-breed named Ellie. The house, a small ranch, is in foreclosure.

''It's been a battle. It's cost me my business, my house and my marriage,'' Mannello says.
In their most recent attempt to help D.J., the Mannellos took him to Resnik at Miami Children's.
''There's scarring in only one hemisphere,'' Resnik says. ``If it was from medication, it would be both hemispheres. We see scarring, but we don't know the cause.''

Resnick says D.J.'s diagnosis is probably ''dysplasia with focus,'' rather than ''without focus.'' It means there's something on which they can operate.

''We're excited,'' Mannello says of the March 13 surgery.

D.J.'s parents were divorced in 2000, but vow to keep on fighting for their son. They have joint custody, with D.J. living most of the time with his dad.

''The bitterness is gone now,'' says Mannello. ``We're just trying to do the best we can for D.J.''
''I hope he can overcome this,'' says his mother. ``I hope he can meet a girl and fall in love and have a home and a family. I'm sad and frustrated. We've tried so many things, but nothing seems to help him for very long.''

Seizures and other health problems in children are rising!

The number of school pupils with health problems such as life-threatening allergies, diabetes, asthma or seizures has almost tripled in the past six years.

Last year 149 students - including 66 five-year-olds - qualified for the government's High Health Needs Fund. The Ministry of Education refuses to disclose how much money is involved or to release a report, written last July, on the increasing demand for the fund.

Statistics obtained by the Sunday Star-Times under the Official Information Act show that in 2001, only 54 pupils qualified for the grant.

It is mostly younger children, particularly five and six-year-olds, pushing the numbers up.

The ministry says the jump in numbers may be due to increased awareness of the fund.

The fund is intended for severe cases only, and provides teacher aides to help with tasks such as responding to allergy or bleeding disorder crises, monitoring blood sugar and helping children shower or toilet.

The aides also help with wheelchairs or crutches, and ensure classrooms are safe for those with allergies - for example, making sure there are no rubber bands in a classroom if a child is allergic to latex.

Children who suffer infrequent seizures, or who need insulin only a few times each day, will not qualify.

Most of those qualifying over the past six years have needed help with toileting, allergies, seizures, diabetes and feeding.

Other categories include cancer, skin care, bleeding disorders, recuperation from surgery, heart and lung disorders, mobility assistance and fragility.

The ministry flagged the increasing numbers late last year, in briefing papers to the minister of education, but stopped short of taking a paper to cabinet which was initially planned.