Pain linked to seizure disorder

As many as 400 people die unnecessarily each year from epilepsy because of a shortage of specialists, according to experts. Campaigners are demanding an urgent overhaul of what they describe as a disgraceful system.

Stumbling out of the restaurant, Susie White, 31, tried to steady herself. All of a sudden, the world around her turned black and her legs buckled. Moments later, she found herself on the floor with no idea how she had got there.

“I’d met friends for a meal when I suddenly started feeling hot and faint,” she says. “I thought fresh air might help but by the time I slipped outside I could barely walk.

“I can remember hitting the window, then the pavement hard as I crashed. It was still early evening and I hadn’t even had a drink.”

Baffling black-outs

Unknown to Susie, the episode in the street was an alarm call. Susie had epilepsy, a condition she knew precious little about at the time.

“I presumed I’d fainted,” she says. “My GP referred me to hospital but only because my knee was sore from the fall. Blood tests to check for low iron and hormonal deficiencies were taken but nothing showed up.”

Susie is far from alone. In the UK there are almost half a million people, or 1 in 131, who are diagnosed with epilepsy – a neurological condition which causes recurrent seizures.

Epilepsy campaigners, who went to Parliament last week, feel a lack of awareness combined with a shortage of specialists are the reasons so many cases like Susie’s go undetected – as well as why so many die.

Contrary to popular belief, epilepsy can affect anyone, at any age. A person does not have to be born with the condition or have a family history to develop it. Susie’s experience is only too common, according to Dr Hannah Cock, a senior lecturer and honourary consultant neurologist at St George’s Hospital and University in London.

She says too many people die from the condition each year – some while waiting to see a specialist.

“Epilepsy is a hidden disease. It has the same prevalence of strokes but isn’t given the same attention – despite inflicting a much bigger burden on society,” she says.

“Non-specialists have a high rate of misdiagnosis and GPs are wrong in about half of cases,” she adds. “Some people are wrongly diagnosed with epilepsy when they don’t have it at all.

“The good thing about Susie’s story is that she is still alive. Too many people die each year, either from the seizures themselves, or from injuries sustained.”

For Susie, from Milton Keynes, Bucks, the incident in the street wasn’t the first time that she had blacked out without warning.

Ten years earlier, aged 15, she’d suddenly collapsed while out shopping with some friends.

“When they couldn’t bring me round an ambulance was called.

“I only remember waking up, in a hospital bed, about six hours later – even though I’d been chatting to doctors for hours apparently,” Susie explains.

“Doctors couldn’t find anything wrong and we put it down to seeing my friend have her belly button pierced, as I’m a bit squeamish.”

According to guidelines set out by the National Institute for Clinical Excellence (Nice), all people with suspected epilepsy should be seen by an specialist within two weeks.

Experts says a staggering half of all acute trusts do not even employ a specialist. And 90% of trusts have longer waiting lists than two weeks.

When Susie’s black-out episodes returned out of the blue 10 years on, she became increasingly anxious.

“I thought low blood-sugar levels were to blame and became obsessive about eating regularly after the black-out,” she explains. “I always carried a cereal bar or snack in my bag.”

Then, in February 2004, Susie fainted one evening while her husband, Paul, now 39, was away on a business trip.

“Luckily, I was going up, rather than down, the stairs when I keeled over without warning,” Susie recalls.

“I rang Mum in tears – terrified. And from then on, the attacks became more frequent.

“I knew when one was coming on as I’d start to feel shaky, hot and panicky.

“I felt so stupid going to the doctor saying: ‘I’ve fainted again. What do you think could be wrong?’ All the tests for iron levels and thyroid functions came back clear.”

The Epilepsy Action Charity president, Baroness Ford of Cunninghame, blames a lack of information about the condition for cases of epilepsy going undetected.

“The majority of trusts lack even the most basic information to allow them to design adequate services,” she says.

Meanwhile, Susie’s fainting attacks were gradually getting worse.

“I started getting what I called ‘zone-outs’,” she recalls. “I couldn’t move or speak until it passed. They would last anything from 30 seconds up to three minutes.”

Susie racked her brain trying to think of what could possibly be causing her black-outs. “I’ve always had a healthy diet but started taking extra supplements,” she says.

“I even wondered if it was claustrophobia or panic attacks.

“I started avoiding crowded places and wore layers, so I could easily cool down if I became hot and shaky. These attacks were taking over my life.”

Over the next 18 months, the zone-outs became more frequent with Susie experiencing up to three a day – and more frightening symptoms had begun to develop as well.

“When I started getting shooting pains in the back of my head, like a bolt of lightning, I became convinced I was developing a brain tumour.” Things came to a crisis in September 2005, when Susie woke in the early hours to find paramedics in her bedroom. “My husband, Paul, had woken to find me thrashing around the bed – limbs flailing,” she says. “He thought, at first, I was having a nightmare but he couldn’t wake me. Terrified, he called 999.”

Doctors at Northwick Park Hospital, London, suggested Susie ask her GP for a referral to a neurologist, the first time a specialist had been mentioned.

“After listening to my symptoms he immediately said I was displaying classic signs of temporal lobe epilepsy,” she recalls. “You could have knocked me down with a feather. I started crying – with both shock and relief that it was nothing more serious.”

Diagnosis a huge relief

A brain scan confirmed the diagnosis and Susie now takes anti-epilepsy drugs twice daily to stop the seizures.

With her epilepsy under control, she was given the go-ahead to start a family and her first baby is due in September.

“I can’t believe it took so long before I was diagnosed,” she says. “I’m completely open about my epilepsy. I don’t see it as anything to hide.“

Dr Cock hopes the epilepsy campaign will bring change and avoid a repeat of Susie’s situation. “People with epilepsy are still discriminated against and too many of them are still not getting the right treatment,” she says.

“We need more awareness, both among the public and medical profession. Hopefully, this campaign will fix that. It’s been a long time coming.”

Baroness Ford adds: “It is disgraceful that many people with epilepsy do not have regular contact with specialists and are unable to access key services. People with epilepsy deserve better.”

A Department of Health spokesperson said: “People with epilepsy now receive more information, have greater choice and control over their care.

“Many are receiving excellent care provided by dedicated multi-disciplinary teams and we are taking steps to spread this good practice and make sure these sorts of services are available to everyone.”

What to do if you’re worried

“Insist – and keep insisting – that your GP refer you to an epilepsy specialist,” says Dr Cock. Quote the NICE guidelines (find them at www.epilepsy.org.uk) and enlist the support of your MP if necessary.

For advice call Epilepsy Action’s freephone helpline on 0808 800 5050 or email helpline@epilepsy.org.uk.

For more more information on epilepsy and its symptoms, visit www.epilepsy.org.uk.

Dog seizures: Symptoms and Treatments

If you own a dog, you ought to have yourself updated with the ailments which dogs face. Epilepsy seizure in dogs can be very scary. Epilepsy seizure is found mostly amongst Cocker Spaniel, Keeshond, Poodle, German Shepherd, Collie, Golden Retriever, Labrador retriever, Irish Setter, Saint Bernard, Siberian Husky, and Dachshund.

Symptoms:

During Epilepsy seizure, your pet may fall over, chomp its teeth, drool, salivate, and whine. Losing control over urination and bowel, paddling of paws, and eye enlargement may also be observed. When your pet gets these kinds of symptoms, and does not respond, it is frightening and worrying. It is obvious that you will start feeling panicky and seem helpless. It is advisable to know these symptoms and take an action whenever required.

Why it happens:

Due to low blood-sugar, tumors, poisoning, kidney and liver ailments, may lead to Epilepsy seizure in dogs. It has also been observed that dogs allergic to dog-foods having chemical ingredient and artificially flavored are prone to Epilepsy seizure.

What you should do:

How should you react and what you should do when your pet gets Epilepsy seizure? The foremost thing you should do is to stay calm and try to comfort your dog. Your voice may give some comfort level to your pet. Pat gently on the dog’s hip. Also place a small soft pillow like stuff beneath the dog’s head to give additional comfort. Try to keep the surroundings as peaceful as possible.

Note down all the details which you observe and immediately call the veterinarian. Co-operate your veterinarian with all the feedback he wants. So keep a note of the seizure time, time duration of the seizure, and time duration between each seizure, and all other relevant information.

Treatments:

Nutritional supplements, herbs, acupuncture, and a natural diet are the various treatments available for countering Epilepsy seizure in your dog is very tiring. So after required medication ensure a peaceful environment and give adequate rest to your pet.

Being vaccinated could mean suffering from seizures but refusing it could cause other serious problems!

Children whose parents refuse to have them immunized against it are 23 times more likely to get whooping cough, according to a new study that is perhaps the most definitive yet linking vaccine refusal to disease.

The Colorado study, which spanned 12 years and included more than 700 children, is expected to become a weapon in the medical community's fight against a growing number of parents refusing vaccines for their children.

Immunization programs have been so successful that diseases including polio and measles virtually have been eliminated, shifting concern instead to the safety of vaccines, said Jason Glanz, study author and an epidemiologist with Kaiser Permanente's Institute for Health Research.

Parents refusing vaccines

cite safety concerns as well as ineffectiveness.

"The perception the vaccine doesn't work isn't true," Glanz said. "We showed it clearly does work."

Glanz studied electronic medical records from 156 children who had whooping cough and 595 children who did not from 1996 to 2007.

One in 20 children whose parents refused the vaccine got whooping cough, compared with one in 500 vaccinated children.

A small percentage of children who are vaccinated against whooping cough still get the disease because they don't develop an immunity response or because their immunity wears off by adolescence. The whooping cough vaccine requires five shots, beginning at 2 months and ending between 4 and 6.

Violent coughing

The highly contagious bacterial infection causes violent, uncontrollable coughing — so intense that a long coughing fit often ends with a sharp intake of air, the "whoop."

Whooping cough, also called pertussis, is deadly in about 1 percent of infants younger than 2 months — who are too young to be vaccinated.

Many parents would prefer their children get whooping cough rather than suffer the consequences of a bad reaction to the shot, said Barbara Loe Fisher, co-founder of the National Vaccine Information Center, a vaccine "watchdog" group in Virginia. She faulted the study for not evaluating bad reactions to the vaccine or determining the reasons for parents' refusal.

Side effects she links to the vaccine include high-pitched screaming and seizures. It's difficult to get medical exemptions for the vaccine, so many parents seek personal-belief exemptions, she said.

"When it happens to your child, the risks are 100 percent," Fisher said. "We need much better scientific studies to see who is at higher medical risk."

Colorado is among the states with the easiest exemption rules. Parents only have to sign a form at the school nurse's office.

Before a whooping cough vaccine was developed in the 1940s, about 200,000 people each year in the United States came down with whooping cough and 10 percent of infants who got the disease died. The deadliest year was 1923, when 9,000 people died.

10,000 cases annually

Today, there are typically about 10,000 cases each year in this country and about 800 in Colorado.

The new version of the vaccine, developed in the 1990s, is "cleaner" and safer, said Dr. Sean O'Leary, a pediatric infectious disease fellow at Children's Hospital in Aurora. The original vaccine — which some parents associate with neurological side effects — was basically whooping cough bacteria, ground up and injected, he said.

The modern vaccine uses only a few proteins from the bacteria, he said.

Immunization rates continue to increase across the country, but so do the number of parents — including actor couple Jenny McCarthy and Jim Carrey — who believe vaccines are unsafe, linking them to autism and neurological diseases.

Doctors fear, though, that as more parents refuse vaccines, "herd immunity" will diminish, meaning diseases knocked out by vaccines could make a comeback. That's particularly worrisome for babies too young to receive vaccines and children who aren't vaccinated for health reasons.

"Vaccination is the victim of its own success," said Lydia McCoy, executive director of the Colorado Children's Immunization Coalition.

Diseases such as polio and measles are no longer "a visible threat" because vaccines are protecting people, she said.

In Colorado, 78 percent of children up to age 3 are fully vaccinated, according to 2007 statistics from the federal Centers for Disease Control and Prevention.

The study, funded by the National Institute of Allergy and Infectious Diseases, appears in the June issue of the journal Pediatrics.

Jennifer Brown: 303-954-1593 or jenbrown@denverpost.com

Medication's downplayed side effects include seizures

A drug used to treat ADHD children is causing concern in the United States.

It is called Risperdal and it is supposed to be used primarily for adults with sever psychological problems.

But last year it was prescribed more than 6.5 million times.

The side effects include young males developing female sex organs.

Nineteen-year-old John was just seven when he began taking Risperdal for ADD.

Even though the FDA approved the drug only for adult patients who were psychotic, John's doctor and others widely prescribed it to kids for less severe behaviour problems.

Once taking Risperdal, John's mum says he became aggressive, sleepy, and developed bowel problems. But the biggest shock came when he was 14 and started developing women's breasts.

“He asked me if he was a girl,” she says.

It turns out Risperdal can increase production of a hormone called prolactin, which stimulates breast growth. It is called gynecomastia – and it is irreversible.

Risperdal and other so-called "atypical anti-psychotics" have exploded in use.

Hundreds of thousands of kids have been prescribed Risperdal in the 14 years it has been on sale - long before the FDA approved it for very limited pediatric use in 2006.

John and most of the other children were not psychotic at all, but were given Risperdal for behaviour disorders including autism and ADD.

Attorney Stephen Sheller is suing Janssen, which makes Risperdal. He claims Janssen marketed Risperdal for unapproved uses in children, downplayed serious risks like diabetes and seizures.

Janssen would not agree to an interview but told us the breast growth risk is "clearly stated in the FDA-approved" labelling, and "we only promote our products for their FDA-approved indications."

Nobody knows how often it happens. But in Janssen's own clinical trials with fewer than 2,000 children (1,885), 43 developed the abnormal breasts.

Mr Sheller represents John and nine other boys – one of whom was only four when he developed a breast on one side and began producing milk.

The treatment for the unbridled breast growth is as unthinkable as the disorder: painful removal of the breasts.
Eventually, the boys can appear normal again.

The family's lawsuit is still in court.

But John’s mother says surgery did not fix all of the problems from the medicine.

When asked if John still thinks he’s a girl his mother wells up and cries before answering, “yes.”

As for Risperdal - it's still on the market. And families say putting even more children at risk.

CBS News

Author tells her own story: Living with seizures

On Halloween 1997, Beki Propst couldn’t remember earning a degree from Kearney State College, running Marine Corps marathons, working for a senator or being a broadcast journalist.

“It was pitch dark and I was wondering why I was standing up beside my bed,” Propst told a group of listeners at Lexington Public Library last Thursday evening.

Concerned, she contacted her doctor, who told her to increase the medication she was taking. From that day 11 years ago, the 58-year-old Propst began to collect memories.

Her story has been featured in the Sunday Denver Post, in addition to several other newspapers from the Midwest to Florida and has recently been a guest of Diane Sawyer on Good Morning America.

“In late 1997, a neurologist told me I had epilepsy.”

Propst revealed said she had been having grand mal seizures once a month for over seven years.

“Seizure occurs when the brain is sending signals very fast, kind of like a lightning storm in the brain,” Propst explained. “There are grand mal seizures and complex partial seizures, that can be as mild a the brain blanking out for a few seconds to a couple of minutes.”

Those seizures are what took away the first 47 years of Propst’s life.

Some of her past she has been able to reclaim through transcripts and photo albums, although she doesn’t remember living it.

“My closets were full of surprises,” Propst said. There were skis, athletic equipment, a camera and a strange box full of items she had no knowledge.

“I asked my neighbor what it was and he told he it was a sewing kit.”

“I still don’t know what I knew or experienced before my last seizure,” Propst said, “but why worry about it? I didn’t know what I was missing, so how could I miss it?”

Propst did try to figure out her past, however, asking various family members what she did, what she was like.

“It’s difficult to figure out your past by asking someone else,” she said. “They all have a different version of the facts.”

More importantly than her memories, Propst tried to find out everything she could about epilepsy and memory loss. In the late 1990s, the Internet was still in its infancy and there wasn’t a lot of information available.

Epilepsy is the number three neurological disorder behind Alzheimer’s and strokes. Doctors and scientists still don’t know what causes the condition, and a reliable test for epilepsy has yet to be developed.

“Doctors have to rely on observations before they can make a diagnosis,” Propst said.

Epilepsy has a wide variety of causes, and a variety of affects, but in Propst, the seizures destroyed her long-term memory.

She likens her memory loss to a computer whose hard drive has been erased..it can still work, but all of the data is gone.

“My first memories are likewise—hazy,” Propst said, comparing her first memories since that Halloween day 11 years ago to the memories most folks have from when they were two or three years old.

As Propst tells her story, questions crop up from the audience, asking her if she had to learn to speak again or drive.

Using three cards as visual aids, Propst showed examples of procedural memory, those automatic things we do each day, like dress ourselves each day; semantic memory, memory that allows us to communicate, to read and write and finally, episodic memory, facts and details of specific events.

Propst took the card with the words Episodic Memory on it and threw it off to the side.

“I didn’t have that,” she said, flatly.

“I couldn’t add or subtract, but remembered how to drive, but had no knowledge what the rules of the road were. I could ride a horse, but not a bike. I had no conception of what role memory played in normalcy.”

After Propst talked a little about her experience as an amnesiac, she addressed the subject of epilepsy.

“There is a stigma surrounding epilepsy—seizures can be frightening,” Propst said, “especially grand mal seizures.

“It’s scary, even for people who know what they’re dealing with. People with a complex partial seizure can appear drunk and disorderly or be overly aggressive and emotional.”

Propst said notables with epilepsy have been Albert Einstein, Chief Justice John Roberts and actor Danny Glover, who had the condition at age 15, but it stopped about the time he was 35.

“No one knows why,” Propst said.

Although Propst has responded well to recent medications, there are those who don’t. She explained there are people who have to take secondary drugs to alleviate the side effects of the drugs that control epileptic seizures.

Over the years, as people have heard Propst’s story of her absent memories, she has been encouraged to write about her experiences. In the beginning, her answer was simply, “I don’t know enough about life or living to write a book.”

But after six years and countless revisions, her book, Absent Memories, was published. She calls it “A bird’s eye view of what I did to survive.”

And summing up her experiences these past 11 years?

“It’s been an amazing adventure,” she concluded.

Pests cause seizures for pets

Not long after Jennifer Croezen applied flea and tick drops to the back of her Chihuahau, Saki, earlier this month, the dog's back began to turn red.

The next day, Saki seemed tired and lost her appetite. Ms. Croezen, a 26-year-old medical assistant, took her dog to the vet the following morning, where Saki was treated for chemical burns on her back and diagnosed with a dangerous anemia. "It makes me really mad," Ms. Croezen says. "If I would have known it could have done this to my dog, I would have never put it on her."

Central Life Sciences, manufacturer of the Bio Spot brand Spot On Flea & Tick Control used on Saki, says its product isn't responsible for the anemia. "Skin sensitivity could have been exacerbated by the presence of severe anemia which led to blistering of the skin," said Laura Petree, manager of technical services at Central Life Sciences, in a statement.

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Saki's Sickness

Some pet-owners are taking action because they believe their animals had reactions to fleas treatments applied directly to the pet's back.

An increasing number of pet owners are reporting what they believe to be harmful side effects from over-the-counter and prescription flea and tick treatments. The Environmental Protection Agency, which regulates topical pet treatments, says the number of reported incidents stemming from so-called spot-on flea and tick treatments -- drops that are applied directly to a pet's skin, usually on the back -- increased 53% to 44,263 in 2008 from the previous year. As a result of the increase, the EPA said last month that it is intensifying an evaluation of spot-on products.

Product manufacturers are required by law to pass along reported incidents to the EPA. In its advisory on the topic, the agency said it is evaluating all spot-on products and posted a list of those it is examining. The list includes products by major manufacturers such as Sumitomo Corp.'s Hartz Mountain Corp., Central Life Sciences, Bayer AG, maker of Advantage, and Merial Ltd., a joint venture between Merck & Co. and Sanofi-Aventis SA, that makes Frontline products. EPA advises consumers who buy treatments from any of these companies to read the label closely and apply the products as instructed.

Incidents reported to EPA range from skin irritation to seizures and sometimes death, the agency says. The reason for the rise in incidents is unclear, the agency says, adding that it is investigating the size of the market relative to the increase in reported incidents. "We are investigating and having discussions to learn more about the problem and will take action when we determine that it is warranted," EPA spokesman Dale Kemery said in an email.

Spot-on treatments generally kill fleas and ticks by affecting their nervous systems, and some products contain chemicals that keep flea eggs from developing. Veterinarians consider them more effective than other treatments, such as shampoos and sprays, and say their use has increased in recent years. "The market has moved dramatically toward spot-ons in the last 10 to 15 years," says Steven Hansen, a veterinary toxicologist and director of the Animal Poison Control Center at the American Society for the Prevention of Cruelty to Animals.

Manufacturers are required to submit safety and efficacy studies of their flea and tick products to the EPA before they go on the market. The EPA says safety standards are the same for brands sold at pet retailers -- such as Hartz and Bio Spot -- as they are for those that are sold at veterinary offices, like Frontline and Advantage.

Consumers who believe their pets have had reactions to spot-on treatments are increasingly questioning the products' safety. "I will never put flea and tick medication ever again on my dog," Ms. Croezen says. She says Saki is doing better, but is still taking medication for her anemia.

As spot-on treatments have grown in popularity in the past decade, online forums like HartzVictims.org and BioSpotVictims.org have popped up for people who say their pets have experienced side effects following the use of flea and tick products. The Natural Resources Defense Council, an environmental group, has a site called Greenpaws.org that advocates ways to take care of fleas without chemical treatment, such as using flea combs and washing a pet's bedding once a week.

Dr. Hansen of the ASPCA says that in general, most spot-on treatments have good safety records. He says that if used appropriately, "in healthy animals we are not going to have very many reactions." Veterinarians and manufacturers say that most of the problems they see are cases where the treatment has been misused.

Manufacturers emphasize that their treatments are safe only for the pet profile listed on the box. Product labels specify the species, age requirements and weight range of the animal to which the treatment should be applied.

One common misuse that veterinarians see is that consumers apply flea treatments meant for dogs on cats by mistake. A review of toxicity studies published in the Veterinary Journal last year concludes that cats are "most often affected by inappropriate application of the spot-on" treatments, though misuse can occur in other species.

For example, the chemical permethrin, found in spot-on treatments such as Bayer's K9 Advantix, is safe for dogs but not for cats. In cats, "it causes their nervous system to go into overdrive," says Mark Stickney, director of general surgery services at the Texas A&M College of Veterinary Medicine and Biomedical Sciences. "They can develop seizures." Dr. Stickney says he sees such cases once or twice a month in the emergency room.

Also, certain animals may be more susceptible to side effects than others, veterinarians say. If an animal is pregnant, heavily flea infested or has an illness, for instance, the owner should consult with a veterinarian before applying flea treatments.

Dr. Hansen of the ASPCA advises against applying flea powders and sprays in addition to a spot-on treatment because chemicals in different products could interact with each other. "You probably do not want to double up on these," he says.

Consumers whose pets experience unusual reactions following treatment should wash the animal with soap, unless the product label specifies otherwise, and immediately contact a veterinarian, the EPA says. They should also contact the manufacturer via the number on the product label. Manufacturers advise saving the box so that consumers can describe exactly what product was used. Companies like Central Life Sciences and Hartz say that they review complaints and decide whether to cover veterinary bills on a case-by-case basis.

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Josh Anderson for The Wall Street Journal

The chemical burn on Saki's back, which appeared soon after the dog received its spot-on treatment, continues to heal.

Sometimes pet owners and manufacturers disagree about whether the animal had a reaction to the flea treatment or if the pet had a pre-existing condition.

Richard Parsons, 64, of La Quinta, Calif., applied Hartz Advanced Care 4-in-1 Flea & Tick Drops for Dogs on his Scottish terrier Duffy in May 2007 and dropped the dog off at a kennel the next morning. He says he received a call two days later from the kennel saying that Duffy was experiencing seizures and vomiting. Duffy died the next day.

"It was a torturous, tragic, painful death," says Mr. Parsons, who believes the death resulted from the Hartz treatment. He says he believes the product should be taken off the market.

Hartz reached a different conclusion after investigating the case. The company says Duffy's illness and death was directly related to elevated sodium levels in the blood that resulted from an undiagnosed, pre-existing disease. The company says its spot-on products are safe. "You can't get a product to market without showing a high level of safety and efficacy," says Bill Ecker, Hartz's chief executive.

Write to Anjali Athavaley at anjali.athavaley@wsj.com

Printed in The Wall Street Journal, page D1

Mother responsible for results of seizures on son due to negligence

A Gold Coast mother, who waited until her profoundly disabled son turned "septic" and was close to death before seeking medical treatment for him, has been sentenced to probation.

The 38-year-old Nerang woman, who cannot be named, was found guilty by jury on a single charge of cruelty to a child under 16 during a trial at Southport District Court last month.

At a sentencing hearing in Brisbane District Court this morning, the court was told she failed to get medical help for her severely disabled seven-year-old son who had a "grapefruit-sized lump" in his neck caused by an abscess.

Crown prosecutor Peter Kelly said the boy's paternal grandfather first pointed out the lump to the child's mother on June 30, 2007.

But the mother waited a further nine days when the boy was bleeding from the eyes to raise the alarm, the court was told.

The boy, when finally taken by ambulance to Gold Coast Hospital, had gone into septic shock and his vital organs were shutting down.

"He was as close as one could be to death," he said.

"She should have known something was wrong. The hospital was only minutes up the road."

The court heard when the boy was eventually taken to hospital, medical staff were "flying blind" while treating him because the woman refused to provide any assistance and "stayed away."

The boy was airlifted to the Royal Brisbane Hospital for emergency treatment and may have died had he not received it, Mr Kelly said.

The boy suffers from Sturge-Weber syndrome, a genetic condition which causes calcification of the brain.

His condition means he suffers up to 12 epileptic seizures a day and cannot communicate or walk.

He also suffers from glaucoma, is fed by bottle and is incontinent, the court was told.

Defence barrister Levis Menolotto said his client had been a single mother since separating from the boy's father in 2002.

He said she had cared for her son, as well as six-year-old twin boys, on her own "with no support from anyone."

He said when the woman saw the lump, she made the decision to nurse the child herself.
"There had been such a lump in the past and it was massaged and managed," Mr Menolotto said.

"This is not a case of deliberate neglect over a long period of time."

All three children were removed from the mother's care in September 2007, two months after the incident.

She had not seen the boy, who now lives with his paternal grandparents in Hervey Bay, since he was taken away.

Mr Menolotto said she had once tried to make contact with the child but her phone calls to the grandparents were unanswered.

"He pines for his mother. The maternal bond is far from broken as far as the mother and child is concerned," he said.

He said his client's estranged partner who is the father of her children had testified she was "a good mother" and there was no doubt that she loved her children.

Judge Walter Tutt ordered the woman, who represented herself at last month's trial, to take part in parenting counselling as part of her probation order.

He recorded a conviction.

Rare treatment for Childhood Epilepsy provide hope to parents

Four months after Allie Jacobs was born her seizures began.

"Both arms would go out to her side and her little body would suddenly go into a crunch-like position, usually after waking," explains her dad.

These seemingly involuntary movements often came in clusters or waves, sometimes up to five to 10 at a time - a frightening ordeal for any parent. Her parents felt helpless.

Why was this happening to their daughter and were treatments available to help Allie? Parents Josh and Jodie Jacobs of West Bloomfield, Mich., sought the help of Gary Trock, M.D., director, Pediatric Neurology, Beaumont Children's Hospital (Royal Oak, Mich.) and co-medical director, Epilepsy Monitoring Unit at Beaumont Hospital, also in Royal Oak.

After Allie underwent an MRI scan, blood tests and an electroencephalograph, Dr. Trock diagnosed her seizures as infantile spasms, also known as West Syndrome. The EEG gives a "snapshot" of the brain's electrical activity.

Infantile spasms, also known as "IS", are a rare condition constituting 2 percent of childhood epilepsies. It is estimated that 8,500 infants in the United States have been diagnosed with the condition. Dr. Trock sees just a few cases each year.

Explains Dr. Trock, "It usually develops in the first few months of life and can be difficult to treat. Developmental delays in speech and movements frequently occur, especially if the seizures are not diagnosed early and treated aggressively. Even then, development may be delayed, leading to permanent deficits. Therefore it's important that children like Allie work with therapists - physical and occupational therapists, speech pathologists and early childhood educators."

Fortunately for Allie and her family, the drug Sabril, with the generic name vigabatrin, has helped her become seizure-free. After only three to four days on the medication, she stopped having spasms.

"It's been a lifesaver," says Josh Jacobs. "I call it her miracle drug."

At present, this medication is only available in Canada, so Josh Jacobs fills Allie's prescription in Windsor. In January a Food and Drug Administration Advisory Committee recommended Sabril for the treatment of two epilepsies, including infantile spasms. Based upon that recommendation, it is hoped the FDA will approve Sabril soon, making it available in pharmacies across the nation.

Physicians also treat infantile spasms with the hormone ACTH, although Dr. Trock pointed out it can have serious side effects and is very costly. Children usually stop having infantile spasm seizures by the age of 5, but may experience other types of seizures.

There is no single cause for the spasms. It is believed that infantile spasms can have many causes - a birth injury, metabolic and genetic disorders. Sometimes no cause can be identified.

Now almost 2, Allie goes to The Center for Children's Rehabilitation in West Bloomfield twice a week for physical therapy. Her parents are pleased with the services offered by the Beaumont Children's Hospital center.

Says Jodie Jacobs, "Everything has been so collaborative and well coordinated among Allie's specialists. As parents, you want the best for your child and we feel good knowing everybody is in our corner - doctors, nurses and therapists. We're grateful and thrilled with her progress."

Similarites between ADHD, seizure disorders and other conditions

ADHD, or Attention Deficit Hyperactivity Disorder, is a relatively harmless neurological and psychological disorder that inhibits the rate at which a child learns to focus his or her attention on a subject matter.

This usually manifests in irritating but “natural” childish behavior, like hyperactivity and getting bored easily, along with other problems like a short attention span and very short memory retention. ADHD is never fatal, and while it has been diagnosed as incurable, it DOES fade over time as the child grows.

It is simply that the child’s discipline and focus takes longer to develop than it normally would for his or her peers. However, a number of other mental and physical disorders have symptoms that can easily be shrugged off as ADHD, so parents should keep an eye out for the additional symptoms of these other problems instead of shrugging a child’s behavior off as ADHD and “something to grow out of“.

Psychological Shock Trauma

Whether due to verbal, physical, or even sexual abuse, a child can exhibit the “spaced out” short attention span often connected to ADHD. This inability to focus, however, will NOT be accompanied with hyperactivity and boundless curiosity and energy. Rather, abused children will often be withdrawn, shy, and afraid of being touched. In the case of physical abuse, also look for bruises, or monitor if the child has a tendency to stay bundled up in long pants and jackets that may hide constant bruising.

Manic Depression

In it’s manic phase, a manic depressive will exhibit all the hallmarks of ADHD - a short attention span, an inability to stop moving, poorly thought out logic, single-synapse reactions, constant happiness or energy, and getting bored easily. However, the depressive side will do a total 180-degree turn and the child will become brooding, grumpy, angry, and withdrawn. These sudden mood swings are the hallmark of manic depression, also known as bipolar disorder.

Thyroid Problems

Thyroid problems lead almost exactly to all the behavioral symptoms of ADHD. The only real indicator of difference between the two is that thyroid problems will also be accompanied by an irregular physical growth pattern, whether stunted growth or getting too tall/heavy too fast. The hormonal imbalances that accompany thyroid problems cause nerve impulses that lead to ADHD-like behavior.

Anxiety and Stress Disorder

Anxiety and stress tends to lead to a short attention span, “jittery” nerves, and an over abundance of adrenalin in the system which leads to hyperactivity just like ADHD. The best way to differentiate the two is that anxiety and stress are often accompanied by paranoia and fear, whereas a child with ADHD will often be almost fearless (due to lack of forethought and consideration of any consequences of actions taken).

Substance Abuse

Substance AbuseAlcohol, nicotine, and especially illegal drugs can take a heavy toll on a child’s body. Each of the three major types of substance abuse have their own unique symptoms that parents should familiarize themselves with to be sure that their child just has ADHD and isn’t indulging in any bad habits. An addict will exhibit almost all the ADHD symptoms, but will have others depending on the type of substance being taken. Common behavioral symptoms to watch out for are aggressive behavior and minor theft from family members (to sell things for money to support the habit).

Subtle Seizures

For a variety of reasons, there are also different physical ailments that can cause subtle, almost imperceptible seizures in a child. These seizures don’t start out as major shakes, instead taking the form of minor trembling that’s almost undetectable unless you’re watching out for it. These manifest as hyperactivity, clumsiness, and the low attention span that’s most commonly taken for ADHD. The symptoms are due to the fact that seizures affect a person’s nervous system, reflexes, and coordination.

Sleep Disorders

Lastly, a child suffering from a sleep disorder like narcolepsy or insomnia will often exhibit the absent minded lack of attention that it shares as a common symptom with ADHD. However, in ADHD the lack of attention span is accompanied by restless energy and hyperactivity, and these will not be present if your child has a sleeping disorder. Instead, the absent mindedness will be accompanied by a tendency to be tired, drowsy, and dozing off suddenly.

Spina Bifida and seizures

This week we'll start by describing a condition called spina bifida, a birth defect that involves incom-plete develop-ment of the spinal cord or its coverings. The term spina bifida comes from Latin and means "split" or "open" spine. Spina bifida occurs at the end of the first month of pregnancy, when the two sides of the spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back. This condition is usually detected and treated before birth.

The causes are largely unknown. Some evidence suggests genes may play a role, but in most cases there is no familial connection. A high fever during pregnancy may increase the risk of spina bifida. Women with epilepsy who have taken valproic acid to control seizures may also be at risk. The two forms are spina occulta and spina bifida manifesta. Spina bifida occulta is the mildest form and most children with this defect never have any health problems. Spinal cords are usually unaffected.

Spina bifida manifesta includes two forms -- meningocele and mylomeningocele. Mylomeningocele is by far the most serious. Most babies born with this condition also have hydrocephalus, an accumulation of fluid in and around the brain.

Mylomeningocele patients typically suffer paralysis, the degree of which largely depends on where the opening occurs. The higher the opening, the more severe the paralysis.

Children with spina bifida often have bowel and bladder control problems. Some may have attention deficit hyperactivity disorder or learning disabilities. Parents usually receive help from a medical team that may include doctors, nurse practitioner, physical and occupational therapists, and social workers. The goal is to create a lifestyle in which the disability interferes as little as possible with everyday activities.

We thank Dr. Michael Alexander of the Nemours Foundation for his invaluable description of spina bifida and his work to improve the quality of life for spina bifida patients.

Paul Rendine is chairman of the Disability Advocates of Delmarva Inc. group. Call him at 410-860-1137 or e-mail him at prendine@1stallied.

Couple lived nightmare when baby dealt with seizures for the first time

John and Jenni Markello know they’re the lucky ones.

The Canton couple watch as their 8-month-old son, Parker, gets up on all fours in that “I’m ready to start crawling” position, and they know their little bundle of joy has come a long way since suffering a head trauma when he allegedly was shaken by a caretaker.

“Statistically, it’s like winning the lottery for how well he’s doing,” said John Markello. “It’s amazing for him to go from near death to no movement on his left side … and now anyone who sees him can’t tell what he’s incurred.”

No criminal charges have been filed in the case.

Fulton County State’s Attorney John Clark said the problem is, there isn’t enough evidence pointing to who inflicted the abuse on Parker.

“Was it the father? The mother? A caretaker? From what we have, there really isn’t enough evidence to where I feel comfortable bringing charges,” Clark said. “Here we have no adult eyewitness and no confession.

“It’s one of the most frustrating parts of our job — telling someone we can’t file criminal charges,” he said. “Wish we could, but it wouldn’t be the right thing to do.”

But this story isn’t about placing blame.

This is a story of awareness.

It begins on Jan. 16, when John received several urgent phone messages from the baby sitter, setting in motion a chain of events this couple never imagined they’d deal with.

What happened

Jenni, 33, who teaches high school-age kids at Canton’s alternative school, was at an in-service meeting in the high school library when John rushed in, waving his hands and yelling “Jenni” to a roomful of teachers.

She grabbed her belongings and ran out. Parker was on his way to Graham Hospital in Canton and would be taken by LifeFlight to Children’s Hospital of Illinois at OSF Saint Francis Medical Center, John told her.

John’s morning began by dropping off the kids — Parker, then about 5 months old, and his 2-year-old sister, Sydney — at the baby sitter’s house across town.

It was opening day of the late season for deer hunting, and John, 34, a technical document author for Caterpillar Inc., had taken the day off. It was one of those crazily frigid days in January, so John decided to hang out at home until the temperatures warmed up for him to hunt in the afternoon.

He played some Xbox 360, and at one point he checked his phone and saw he had four missed calls from the baby sitter.

He immediately called her and was told, “Parker hit his head and was acting funny,” he said. “I took off and got there within just a few minutes. I went in and called 911 immediately, before I even reached him. He was in a seizure — stiff as a board, his arms were straight out, his wrists were turned in, his feet were turned in and he was moaning.”

John followed the instructions of the 911 dispatcher and waited for the paramedics to arrive. When they arrived, he hurried to scoop up his young daughter, who was witnessing her baby brother in duress.

The baby sitter told the couple she was sitting on the hardwood floor holding a standing Parker between her legs. Parker was jumping up and down, got away from the baby sitter’s grip and fell back and hit his head, the Markellos said.

The couple arrived at Graham, “and it was all a blur,” John said.

The Journal Star contacted the baby sitter involved in the case. She did not respond to requests for comment.

The next step

At Children’s Hospital, Parker was intubated for a brief time because of another seizure and spent three days in the children’s intensive care unit. He eventually spent nine days in the intermediate care unit as the seizures continued.

Through various tests, doctors determined Parker had a nonaccidental traumatic brain injury, or shaken baby syndrome. There was bleeding on the brain but no external bumps or bruises indicating that he was struck on the head, his parents said.

Further, Dr. Steven Lichtenstein, associate clinical professor of surgery and pediatrics for University of Illinois College of Medicine at Peoria with a specialty in pediatric ophthalmology, saw a “lot of blood in the retina in the back of both eyes.

“It was very severe. It takes a lot of shaking to make the blood vessels in the back of the eyes to burst,” he said. “The eyes literally go back and forth within the orbits and causes blood vessels to break.”

Lichtenstein is the ophthalmologist called in for these types of cases at Children’s Hospital.

“Unfortunately, we see hundreds of these cases,” he said. “We had a real rash of them a couple months ago.”

As for Parker’s case, Lichtenstein said there was concern about a loss of vision. The blood has since cleared in the left eye, and the more damaged right eye is beginning to focus better.

“But it’s too early to tell if the optic nerve has been damaged,” he said. “It’s a watch and see.”

The road to recovery

Parker has endured three months of anti-seizure medications, CAT scans and endless occupational, speech, eating and physical therapies.

Dr. Andrew Morgan, medical director for pediatric rehabilitation at Children’s Hospital, said Parker has improved so greatly that he doubts he’ll have to see him for any follow-ups. Parker has been receiving therapy through Morgan’s office but has dealt only with the individual therapists.

“There are no significant concerns,” he said. “I know he’s doing well.”

Admittedly, though, the whole recovery process takes times.

“With shaken baby syndrome, there’s a lot of hidden damage,” Morgan said. “In my experience with these kids, interestingly, it seems they really do well or end up devastatingly impaired — cerebral palsy, seizures, mental retardation, visual impairment, and it’s very severe.”

For Parker, who is hitting his six-month benchmarks, his mother sees progress every day.

“He’s seriously our miracle child,” she said.

Jenni recalls during the worst of things hearing that various prayer chains were established.

“Someone told me about one lady from Utah. I don’t know how it worked, but it worked,” she said. “I’m very, very positive he’s going to make a full recovery.”

Jenni knows freak accidents can happen, but she’s not convinced that was the case with Parker.

“I talked to (Dr. Lichtenstein) about two weeks after the incident, and he described the extent the forward and back shaking motion had to have been to have caused the damage he saw in Parker’s eyes,” Jenni said. “That was when I finally was convinced it wasn’t some freak accident.”

But she doesn’t dwell on what happened.

“I’m just 100 percent trying to focus on him,” she said. “I don’t want to let anger seep in. I don’t need that in my life.”

John said the whole experience has been “really, really tough on our marriage and family in general. We have amazing support in our family, and I don’t think we would have gotten through it without them.

“I’m a person who likes to get results very quickly, but with this injury we have to wait and wait and wait until he gets older and see what comes about,” he said. “You try to keep it out of your head, but it never goes away. Through this all, Jenni and I have realized how strong we are and how great we are together.”

As for Parker, “he’s just doing phenomenal,” John said. “His spirit is awesome.”

Sharing their story

The Markellos wanted to share their experience with others to bring awareness to child abuse (April is child abuse awareness month).

“I think it’s just that I was the last person who would believe this would happen,” Jenni said. “People need to know it does happen, it can happen, and he deserves something. Parker saved his life, he fought for his life, and now no one is fighting for him. It breaks my heart.

“I’m not out for blood, I just want people to wake up and be aware. It’s not always a bad person who does this. In a split second, they can make a bad decision.”

John agrees, and he also wanted people to understand what the entire family goes through in situations like theirs.

“You hear about incidents, but you don’t understand how much that family is going to go through, and not just for a few months or a year, especially with babies. It’s going to be years,” he said.

“And the person who inflicted the abuse, they’ve already done their part, they don’t have to worry about the development — is he going to be able to see, have speech problems, agility programs — the list is endless.

“There’s no baby out there that does anything to justify any abuse. When they cry, it’s for a reason,” he said. “It’s just the innocence that’s ripped away from them that bothers you.”

Lisa Coon can be reached at 686-3041 or lcoon@pjstar.com.

Community helps boy get a seizure alert dog

JJ Krentz lights up when he walks in the room and sees his new dog. Liza is just as excited, rushing to sniff him, tail wagging furiously.

But Liza is no ordinary dog, and this is no ordinary routine. JJ has Dravet Syndrome, and Liza is specially trained to sense when one of the many seizures the disorder causes is about to strike.

JJ's mom, Tiffanie, says those seizures can be more than just frightening. She says if they are not stopped quickly, they can grow into life-threatening events.

Community donations helped the Krentz family purchase Liza. Tiffanie, her husband Keven and JJ met Liza in February for two weeks of training before bringing her home. Tiffanie says the results so far are amazing. If Liza sniffs JJ and senses an impending seizure, she'll bark or paw. She did it when they were training and has done so at least once a week since they've been home. She's been right every time - and hasn't missed any either.

"It's unbelievable that an animal can sense something like a seizure," Tiffanie says.

Liza gives them as much as an hour and a half warning. It gives them time to get JJ to a safe place to prevent injuries from falls.

It's so successful, they're gradually working Liza into JJ's routine at Easter Seals Capper Foundation's Kidlink Preschool Program. Teacher Linda Burger says the children have gone through some training. They've read stories about working dogs versus pets and have had Liza into the classroom for periods of time so she can get used to working with children around her.

At home, Liza is opening up a world of possibilities. Tiffanie says they're looking forward to going to the park or boating and not worrying about being stuck without help should a seizure suddenly strike.

"Tha'ts important," Tiffanie says, "We want him to be as normal as possible."

Evening as a Child
The Krentz family will be featured guests at the Capper Foundation's "Evening as a Child" fundraiser
6 to 10 pm
Saturday, April 25
Kansas Expocentre
Tickets: $50 (available at door)

The link between immunization and seizures

The following is a story submitted by Georgina Green, a Public Health Nurse with Northern Health, as part of the national immunization week from April 25th-May 2.

In 1998, a study published in the United Kingdom resulted in widespread misconceptions about vaccines and a subsequent decline in immunization rates; many parents began choosing not to give their children any immunizations at all. At that time, I was working as a pediatric nurse in a Paediatric High Dependency Unit, which is where the very sickest of children were admitted. Unfortunately, we admitted a 15 month old toddler with meningitis C, which is a vaccine preventable disease.

Meningococcal C is a bacteria that causes an infection of the fluid and lining that covers the brain and spinal cord and septicemia which is an infection of the blood. For every 100 children who get sick with meningococcal C disease, 15 will die. Those that do survive can be left with permanent complications such as brain damage and deafness.

After a week in the High Dependency Unit, the toddler started to recover but unfortunately was left with severe brain damage, seizures, deafness and lost both feet due to septicemia. During my time working within the High Dependency Unit, I saw many other cases that were similar; all had heartbreaking outcomes. After a while I was lucky enough to secure a position in a Paediatric Palliative respite facility, where I nursed this same child on and off for the next 12 months until sadly, she died from further complications.

I want to share my story and highlight the importance of immunizations, to ensure that no other family has to suffer the loss of a child in this way. I still see how the misconceptions from this study have affected immunization rates, even in Canada; that parents and the general public still have concerns around vaccine safety. What I do know is that this child’s life would have been saved had she received the meningitis C immunization to prevent this infection.

It’s easy to forget the severity and heartbreak associated with communicable disease that thankfully, we rarely see today. This is due to the overwhelming success of modern immunization programs in reducing the incidences of these horrific diseases.

Immunization - It’s a family affair. Please protect your loved ones and your community by ensuring that all members of your family are up-to-date on their vaccinations.

National Immunization Awareness week is an annual event to highlight the importance of protecting Canadians from vaccine-preventable diseases and will be held April 25 - May 2, 2009.

- It is important to get ALL vaccines on time, following the BC schedule for immunizations.

- Vaccines are safe; they are thoroughly tested and monitored.

- Immunization is important throughout the lifespan.

- Vaccines protect individuals, families and communities from disease.

- We must continue to immunize or we will see an increase in the diseases we are immunizing against.

Please call your local Public Health Unit if you have questions or would like to book an appointment for immunization. You can also visit www.immunizeBC.ca or call 8-1-1 to speak with a registered nurse.

Georgina Green

Public Health Nurse

Northern Health

Catastrophic Antiphospholipid Syndrome and seizures

Antiphospholipid Syndrome is an immune system disorder characterized by excessive blood clotting that may present complications with pregnancy such as premature birth, miscarriage, or even unexplained fetal death, as well as the presence of antiphospholipid antibodies in the person's blood.

The antiphospholipid antibodies involved include lupus anticoagulant antibodies or cadiolipin. Persons with this syndrome may develop symptoms while these antibodies are detectable in their blood.

One of the ways that a person's immune system fights off infections is by producing antibodies, which are proteins in their blood and other body fluids that bind to viruses and bacteria. These antibodies help the immune system to destroy and remove viruses and bacteria. There are times when the immune system does not function the way it should, and produces antibodies that work against the person's organs and other tissues in their body; these antibodies are referred to as,' autoantibodies.' The autoantibodies in APS were at first thought to recognize certain phospholipids, therefore the name, 'antiphospholipid antibodies.' Science now knows that the majority of these autoantibodies in persons with APS recognize particular blood proteins which bind to phospholipids, not the actual phospholipids themselves.

Antiphospholipid syndrome is also referred to as, 'Phospholipid Antibody Syndrome,' or, 'Hughes Syndrome,' after the doctor who described it. People who do not have this disorder may also have antiphospholipid antibodies in their blood; about two-percent of the population does. Some of these antibodies are harmless, and can be found in association with a number of conditions such as parasitic, bacterial, and viral infections. Certain medications can cause these antibodies to be produced in a person's blood, such as quinine, antibiotics, procainamide, and hydralizine. The illegal drug cocaine can cause these antibodies to be produced in a person's blood as well.

The antiphospholipid antibody is a protein, although it is not considered to be a normal one, and it has been found in people with a variety of illnesses. The illnesses that these people have experienced include stroke, phlebitis, thrombosis, low blood platelet counts, migraine headaches, as well as a rare form of inflammation of the nervous tissues of the spinal cord and brain referred to as, 'Transverse Myelitis.' These antibodies have been found in greater than half of persons with Lupus Erythematosus. Persons with atypical Multiple Sclerosis, as well as those with slowly progressive memory issues also have these antibodies in their blood stream.

APS Statistics

* 1-5% of the population is believed to have APS.

* 75-90% of those affected by APS are women.

* 10-25% of women with recurrent miscarriages have APS.

* 15-20% of all cases of blood clots in large veins, including blood clots that go to the lungs, are due to APS.

* One third of strokes occurring in people under the age of 50 are due to APS.

* 40-50% of persons with lupus also have APS.

Features of APS

People with APS have an increased risk for several different things including issues related to blood clotting. Blood clots in the arteries, clots that go to the person's lungs, or clots in the person's veins are risks. Persons with APS may experience miscarriages that can occur at any stage of pregnancy, although they are more common during the late first trimester or early second trimester. Pre-eclampsia, eclampsia, premature delivery, and fetal growth retardation are complications that may be experienced. Heart attacks, angina, and strokes, as well as transient ischemic attacks and loss of vision are additional risks. Persons with APS may develop heart problems which may require either valve surgery or replacement. They may experience decreased levels of blood platelets that are involved in blood clotting, and they may develop a bluish rash that may be either transient or persistent. The feet or legs of persons with APS may develop skin ulcers.

There are some other features that persons with APS may develop, including neurological symptoms that are similar to Multiple Sclerosis. The person may experience migraine headaches, visual disturbances, and difficulty thinking clearly. Neurological symptoms including dizziness, vision loss, seizures, loss of balance, and abnormal movements may occur as well.

Testing for Antiphospholipid Syndrome

There are a number of different laboratory tests that can detect Antiphospholipid Syndrome. One of these tests is actually a Syphilis test, which returns as false in persons with this syndrome. Another is a Lupus Anticoagulant test; there is also a Prolonged PPT test, and a Cardiolipin test. The presence of anticardiolipin antibodies may indicate Systemic Lupus Erythemotosus; something that is characterized by production of a number of abnormal antibodies.

Causes of Antiphospholipid Syndrome

While the causes of this syndrome are not currently known, what is understood is that the antibodies associated with the syndrome reduce levels of, 'Annexin V;' a protein which bind phospholipids as well as presenting clot-blocking activity within a person. Reduction of Annexin V is believed to be a potential mechanism for an increase in the tendency for a person's blood to clot, as well as the issues related to pregnancies that are characteristic of Antiphospholipid syndrome. Something else that is understood is that anticardiolipin, as well as other antiphospholipid antibodies, are associated with a decrease in levels of prostacyclin. Prostacyclin is a chemical which prevents blood clotting elements from clumping together.

Treating Antiphospholipid Syndrome

Every person with this disorder is treated individually. There are a number of illnesses that are associated with the abnormal grouping of blood clotting elements related to this syndrome, and treatment many times involves prevention of clotting through blood thinning. People with this syndrome tend to form blood clots that can affect the function of nearly every organ in their body. Administration of medications that thin their blood such as Warfarin or Heparin are commonly used. Prednisone and other cortisone medications may also be used in order to suppress the person's immune activity, as well as inflammation, if they present certain features related to the syndrome. Common Aspirin can help by inhibiting the grouping of blood platelets when used in low doses in some people. Persons with Systemic Lupus Erythematosus who have Antiphospholipid syndrome as well may be prescribed Hydroxychloroquinine as added protection against blood clotting.

Additional treatments may involve the use of intravenous gamma globulin for persons with a history of premature miscarriage, or for people who have low amounts of blood platelets during a pregnancy. Some studies have shown that intravenous gamma globulin might not be any more effective than a combination of common aspirin and heparin treatment.

Catastrophic Antiphospholipid Syndrome

Catastrophic Antiphospholipid Syndrome is a type of antiphospholipid syndrome which is characterized by blockages of a variety of blood vessels throughout a persons body. The person's organs may be affected; organs such as the person's heart, kidneys, lungs, bowels, brain, and skin. This type of antiphospholipid syndrome is rare, and is treated with corticosteroids, anticoagulation, as well as plasmapherisis. Catastrophic Antiphospholipid syndrome affects less than one-percent of persons with antiphospholipid syndrome, and is also referred to as, 'Asherson's Syndrome.'

PET Scan could help to treat seizure disorders!

AUSTRALIAN researchers are pioneering a technique to accurately pinpoint the area of the brain that causes seizures, which could allow more people with epilepsy to undergo life-changing neurosurgery.

Chemists and nuclear medicine experts in Sydney and Melbourne have developed a radioactive drug called 18FMZ that targets the brain receptors associated with epilepsy and helps surgeons identify which part of the brain to remove.

The clinical director of the Co-operative Research Centre for Biomedical Imaging Development, Rob Ware, said the breakthrough could help patients with poorly controlled epilepsy, who often have significant medical, psychological and economic difficulties.

"Although neurological surgery can be a very effective treatment for these medication-resistant patients, surgery can only be applied in a small proportion because of problems localising the source of the seizure," he said. "The radiopharmaceutical 18FMZ may help to solve this issue."

Following promising results from laboratory studies, 20 people with epilepsy and 20 people without the disease will undergo a positron emission tomography (PET) scan using 18FMZ at the Peter MacCallum Cancer Centre in Melbourne.

A further 40 people with epilepsy will also be scanned using the current nuclear medicine imaging agent used in PET scans, known as FDG.

Dr Ware said PET scans using FDG can help identify the seizure focus in some patients, but it provides far less detail and often shows a relatively wide area of abnormality, all of which does not need to be surgically removed for effective seizure control.

The head of radiopharmaceutical research at the Australian Nuclear Science and Technology Organisation in Sydney, Dr Ron Weiner, said the technique had been tried in Europe for PET scanning using radioactive carbon (11C-FMZ) as the tracer. However its very short radioactive half-life of 20 minutes meant scanning was limited to the few research centres that had both sophisticated radiotracer synthetic capabilities together with an onsite cyclotron, a type of particle accelerator that makes isotopes suitable for PET imaging.

ANSTO chemists had achieved a half-life of 109 minutes through molecular manipulation, meaning it could be transported to other hospitals and research centres and reach a much large number of patients.

Source: The Sydney Morning Herald

Can seizures be fatal?

The deaths of the Gardasil girls have remained a mystery for some time now. Many of the parents of these Gardasil girls do not have any closure because the cause of death is unknown. On my Memorial page for these girls I have listed over 30 young women and girls that have passed as of January 2009 with brief bio's of a few.

When I look at this page I see beautiful, vivacious young women with their whole lives ahead of them. They had goals and dreams for their future. They were the apple of their parent's eye. I know this because I have spoken and corresponded with many parents who have lost their daughters suddenly.

Today I hope to bring closure to some of those families with the unknown diagnosis as to the cause of death for their precious daughters.

First a little background about the girls who had some symptoms before their demise. Some of the girls had headaches and flulike symptoms. After speaking to several parents I found that mucus was found in the lungs, mouth and/or nose of many of these young women and girls. The cause for this mucus was never truly determined by the autopsy report as to a cause.

The one and only common factor with all these deaths has been the Gardasil vaccination.

Another thing I want to bring to your attention is SIDS (Sudden Infant Death Syndrome). This is another case of death by unknown causes. What is the common factor with SIDS deaths is that these babies all received vaccinations sometime before death. In some of the VAERS reports it is stated that the baby had vomit or spit-up in their mouth or on the bedding. I have read where a baby too young to roll over yet was found on the other side of the crib. How is this possible? My opinion is that maybe the seizure was violent and caused this movement. (Some people in the medical community hate it when I say this but I am going to say it anyway.) I am not a medical professional and this is my opinion as a lay person.

The next item of interest is our environment. We are told not to eat too much fish because we could experience mercury toxicity which could cause neurological damage. An example of this toxicity hit the media when Jeremy Piven had to leave the Broadway play Speed-the-Plow because of "shocking levels of mercury" which caused severe fatigue. At the end of this article it states, "It is very serious. Mercury can kill — it can absolutely cause cardiac arrest, kidney failure, even psychiatric problems," says Colker, who was first interviewed by Entertainment Tonight. "He is going to be OK. This is completely reversible," adds Colker, who believes Piven will be "rockin' and rollin' and ready to be his old self for Entourage" by March. He just needs to really lay low and rest."

http://www.people.com/people/article/0,,20247781,00.html

We are now being told to limit our use of aluminum products especially processed foods from cans because the aluminum can leach into the product. This is what the ASTDR (Agency for Toxic Substances and Disease Registry) has to say about aluminum. "Eating large amounts of processed food containing aluminum additives or frequently cooking acidic foods in aluminum pots may expose a person to higher levels of aluminum than a person who generally consumes unprocessed foods and uses pots made of other materials (e.g., stainless steel or glass)."

Then you have the water that we drink from our tap that has aluminum and fluoride and other chemicals too numerous to go into here. We also have cleaning chemicals that we were led to believe were safe to use around our homes that also have harmful chemicals.

We have been surrounded by neurotoxins without even realizing it or believing that what we use could harm our children. We believed that there were systems in place that would prevent this harm. We are learning now that we are wrong in our beliefs. Somewhere along the line something went astray.

Now, I want to bring your attention to Jett Travolta. This young man suffered with seizures for most of his young life. It was a seizure that took this life at the young age of 16. This young man was the apple of his parent's eye. Here is an excerpt from KDKA out of Pittsburgh. "We are heartbroken that our time with him was so brief. We will cherish the time we had with him for the rest of our lives," Travolta and Preston said Sunday in their first public statement since Jett's death." http://kdka.com/national/john.travota.son.2.899690.html You can see the love this family had for this young man in every picture. I grieve for the loss of this young life being taken from this loving family.

I bring up this tragedy because I believe that this young man's life was taken for a greater purpose this day. I say this day because I was able to make the connection to the Gardasil deaths and SIDS deaths and this young man. I was able to do that by watching this video. http://kdka.com/topstories/jett.travolta.john.2.900533.html



To me, Jett Travolta was not only a victim but he will always be in my heart a hero just like Jenny who also recently passed. Jett Travolta was able to bring to the forefront the fact that the cause of death was a seizure. Why is this important? It is because of the statement made by Dr. Cyril Wecht, a Forensic Pathologist, that Jett Travolta had a convulsive seizure disorder. He also talks about fluid in the lungs and the fact that other tests that were done were negative.

This is significant in the fact that the autopsy report findings that were given to me via communication with mothers of Gardasil Girls that have passed due to unknown causes are similar. Many of these girls had the fluid or mucus in the lungs and/ or mouth and some mothers even brought up cardiac function to me. It also fits some of the findings in the VAERS reports from babies that died of SIDS.

The common factor to all three is the fact of brain damage due to a toxic substance. Here is another excerpt from KDKA, "Preston blamed household cleaners and fertilizers". I looked up aluminum and fertilizers and I came up with 807,000 hits. I found out that Hydrangea plants will change color if you use Aluminum Sulfate fertilizer. So this is a very distinct possibility as to what happened to Jett.

Now, if you look at all the different products that contain aluminum from cosmetics to antacids we have more environmental aluminum that can enter our bodies in addition to the aluminum that is in vaccines. I do want to state here that Jett Travolta was never vaccinated so his injury was due to environmental toxins.

The bottom line here is that the Gardasil Girls, SIDS babies and the environmental aluminum can cause brain damage that will produce a convulsive seizure disorder which can cause death if intervention is not available immediately upon onset as stated by Dr. Cyril Wecht. It is my belief that this is what could have happened to the Gardasil Girls and SIDS babies.

My special thanks to the Travolta family for loving this very special young man. Because of his passing I have been able to prove why many of the Gardasil Girls and SIDS babies probably died. Your son Jett Travolta will always remain in my heart and the heart of others because he has brought closure to many families this day.

It is because of these young people that I founded the "International Coalition of Advocates for the People." I believe that we need positive change to correct these issues and it can be done by positive people. In essence "positive change for positive people" is our motto.

One of ICAP's visions is to build clinics that will have the ability to treat the environmental and vaccine injuries that children and adults are presently suffering from.

Please visit ICAP's website today to see what our vision is for the future. http://www.i-c-a-p.org/index.html

© Cynthia A. Janak

Insurance companies refuse to help toddler dealing with rare seizure disorder!

Insurance companies keep telling 3-year-old Matthew Sloan Walker no.

It’s tough for a toddler to understand that word sometimes, but it is even more difficult for his family to hear in this case.

Matthew is one of about 35 boys in the world born with subcortical band heterotopia — a brain disorder that causes cognitive and physical impairment. Because his condition is so rare, his family said insurance companies won’t cover most of his treatments or equipment that helps him get around.

Matthew is the son of Cynthia Hadzick-Walker and Jonathan Walker, of Heathron, Fla., and is the grandson of Alexandra and Michael Hadzick Sr., of Freeland.

His mother, a Freeland native, lived in Florida with his father for about seven years.

The condition

Matthew’s muscles don’t move.

He has feeling but the disorder prevents him from differentiating between textures and impedes his motor skill development. He can’t walk but pushes himself on his bottom to move, Alexandra said.

Matthew can’t chew so at the age of 3, he still eats baby food and is still in diapers.

“He doesn’t know to tell you he’s hungry or wet,” Alexandra continued.

“He is 100 percent dependent for his daily living skills and activities,” Cynthia’s brother, Michael, said.

Matthew also has focal seizures. Michael said his eyes become frozen and even when you call his name, Matthew doesn’t respond. The episode ends with Matthew vomiting and then falling asleep.

Doctors have no idea what his prognosis is, though they hope he can walk someday, Michael said. For now, Matthew can use a walker, almost like an infant walker to move about.

He attends a school for children with cerebal palsy, though the treatments they offer aren’t expected to help him.

Two specialists, one in Delaware and the other in Chicago, are consulting on his condition. They are the only two known experts for the disorder, Michael said. Both agreed, when Matthew was 4 months old, the child should undergo early intervention therapies. Matthew receives physical, speech and occupation therapy.

He attended a summer school program for about three months last year, which cost around $3,000. Tuition wasn’t covered by insurance, Michael said.

His parents have a van but it isn’t handicap accessible, making it difficult to lift the growing boy into and out of the vehicle. Cynthia and Jonathan have to lift him into and out of the bath tub. Retrofitting the family van and tub is also not covered by insurance.

The family is on a list for a service dog that will likely cost them $15,000. The dog is also not covered by insurance but will help alert Matthew’s family to when the boy will take a seizure.

Michael and Alexandra Sr. bought him a wheelchair for $5,000, however being that it’s not motorized, Matthew relies on his parents to wheel him around. The insurance company said they would buy the wheels for Matthew but not the chair.

Michael said he became frustrated after hearing the insurance company tell his sister and nephew no, time and again.

“It’s just so frustrating to see. You would think because his condition is so rare insurance would cover expenses. It’s appalling that it’s just the opposite,” Michael said.

Uncle Michael sending help

His disgust with the insurance situation prompted Michael to organize fundraisers to support his nephew.

Michael said he is amazed at how Matthew’s parents take care of their family’s challenging life. Matthew has a sister, Morgan Elizabeth, 5, and a brother, Adam Patrick, 1.

The entire Hadzick family is pulling together to help Matthew live a better life. They hope the community does too.

Uncle Nathan Hadzick and his family from Lancaster will make the trip in and uncle Jeremy Hadzick, who serves in the Air Force, will be there in heart. Jeremy is stationed in South Carolina and can’t make the trip in for the fundraisers.

Michael also took his nephew’s fundraisers to another level.

As an infant, Matthew seemed very normal. His mother, a pediatric nurse practitioner, saw a change in a few months. Alexandra said when Cynthia put her hand on Matthew’s hand or foot, he didn’t curl his fingers or toes like other babies. Worried, she sought medical treatment.

Michael wanted to ensure that another mother and father won’t have to deal with the stress of being told no by an insurance company on top of the stress of knowing your child needs help.

He wrote to the governors of Pennsylvania and Florida to help the National Organization for Rare Disease in its quest to raise awareness. Michael said both states now recognize there is a problem.

The hope is that one day these diseases will be recognized by insurance companies, as well.

achristman@standardspeaker.com