Saturday, April 26, 2008

Can vaccines be linked to seizures?

Families of two children from Pennalurpet near Poondi who died after being given measles vaccine shots on Wednesday told the central team, deputed by the Union Health Ministry, that their children had seizures soon after they were given the shots.

The committee, headed by Shiv Lal, National Institute of Communicable Diseases, visited the families of Puja and Nandhini at Pennalurpet in Poondi Panchayat Union on Friday morning. Puja’s father Allimuthu said his daughter was normal prior to administration of the vaccine. After a few minutes, she developed some problems and was rushed to the Primary Health Centre at Katchur.
“From there, we took our child to Tiruvallur Government Hospital. En route, blood began oozing from her hand. We came to know only at around 1 p.m., when the hospital staff moved her body to the mortuary, that our child had died”, they said.

After making enquiries with the affected families in Pennalurpet and nearby Plazpalayam, the team reached the Katchur PHC at around noon.

The team was informed that oral polio vaccine was also administered to these children prior to the measles shot.

The PHC staff informed the Central team that they had received 40 vials and 40 dilutors from the Deputy Director (Health) office at Tiruvallur.

While 39 diluents carried the name of one company, the other bore the name of a different company, manufactured in February 2006 and due for expiry in January 2011.

The team collected details with regard to the number of measles shots and other vaccines given to children on that day at Katchur, number of vials sent for chemical analysis, status of cold chain and the manner in which the vaccines were usually distributed and administered to children.

Later, they went to Government Hospital, Tiruvallur, and made enquiries with the DD (Health) and other District-level senior officials of the Health Department.

Stricken with seizures and Autism, boy taught people a lot!

Though he couldn’t use words to communicate, Dylan Brewer’s life spoke volumes to others.
“He had this real gentleness about him — he never got angry,” said his mother Cathy at the family’s home in Campbell County. “Even though the world was so confusing to him, he had this good nature.”


That goodness and ever-constant smile in the midst of struggle still inspire family and friends.
Dylan died April 12 at age 19.

The oldest of three brothers, Dylan was developing normally as a 2-year-old, Cathy said, but then began having severe seizures and lost his ability to speak.

“We didn’t have a prognosis for him,” she said. “The doctors could never really find out what he had. The only thing they could say was that he had autism and a seizure disorder of an unknown origin.”

Cathy and Dylan’s father Craig believe an immunization Dylan received when he was 2 contributed to his condition. They said many other families across the country have faced similar situations and doctors are working on studies to prove or disprove a link between autism and immunizations.

The family was constantly in and out of hospitals due to the seizures, Cathy said, but it was a comfort to know his younger brothers only remembered the good times.

Though non-verbal, Dylan walked and always got into things, she laughed. The only true toy he ever connected to was a miniature sea turtle that he had held onto since he was 4.

“He kind of became known as the turtle guy,” said Cathy.

He occasionally turned lights on and off, swung from a leisure device in his room and he had many caregivers and teachers working with him.

But his life was reciprocating lessons of its own.

“They all said they learned something from him,” Cathy said. “They learned how to be patient, compassionate and how to see through people’s differences.”

Blake, Dylan’s 17-year-old brother, also found out valuable lessons Dylan knew.

“Dylan enjoyed the much simpler things in life that we have a harder time understanding because of our busy schedules,” Blake said at Dylan’s funeral. “He would many times throughout the day stop right in his tracks and just look around, observing everything surrounding him, in finest detail, just smiling.”

Dylan knew how to live in the moment, Cathy said, with perfect innocence.

In hopes of helping others through the research of autism, the family donated his brain to the Brain and Tissue Board for Developmental Disorders at the University of Maryland.

Cathy said it was his last gift.

Though his life had challenges, she said his spirit was never defeated.

“People that have intellectual disabilities still have a spirit,” she said. “We need to learn to see past their differences and see their spirits.

“That’s what I think Dylan taught us to do.”

Family stricken by seizure disorders and Autism feel abandoned by Queensland

A Caloundra family battling to cope with two severely disabled children claim they have been abandoned by Queensland authorities in their hour of need.

Michael Graham and partner Rosemaree Butler never know how many seizures their six-year-old son, Johnny, will have each day or how badly he will be hurt.

At the moment he is averaging 30 to 40 blackouts caused by his epileptic chronic toxic seizures, but on really bad days that can climb to 130.

And when Michael and Rosemaree haven’t got their hands full dealing with Johnny’s distress, they have to cope with seven-year-old Chloe, who suffers from autism as well as epilepsy.

Both kids have been in need of special care since they were two.

Three weeks ago the two stressed-out parents steeled themselves and made the move from Wynnum to Little Mountain so their children could attend the well-resourced Currimundi Special School.

And while they are over the moon with the new learning environment, they say life at home is a living hell due to lack of support from state government agencies.

Johnny’s face is badly damaged from constant falls on the bare concrete floors of their department of housing home, which now has some matting – thanks to the Society of St Vincent de Paul.

But the deepest cuts have been inflicted emotionally by the latest rejection by Disability Services Queensland of special support funding for their children.

Michael is struggling to comprehend their fourth rejection for funding that could help meet their children’s special needs and provide urgent parental respite.

The strain was evident in Michael’s voice as he told how their life was threatening to unravel.
“They are putting us through hell,” said the invalid carer, who gets $100 a fortnight on top of his normal pension. “We weren’t going to put in for the latest application for funding, not after the last three rejections, but DSQ said this time they would look after us and things would be right.

“They seem to set us up and then keep knocking us down – we haven’t had respite in three months and we badly need it.

“Johnny needs a $40,000 special wheelchair to go to school because of his seizures, and that money would help towards that.”

Michael said they had been hoping for funding of $15,000 to $20,000 to help provide for the children’s special needs, and were not told why their application had again failed.

They have been unable to talk to the DSQ about arranging a funding appeal, which must be lodged in 10 days, and fear they are being fobbed off.

“It’s bad enough having the stress of looking after Johnny, and then you have to deal with Chloe, without having all this extra worry,” Michael said.

While Michael appreciated the housing authority moving them into a home in Caloundra in a relatively short space of time, promises to provide additional fittings had not been met.

“They said they would look after us and even provide shatter-proof glass and specially rounded edges,” he said.

A DSQ spokesman could not be contacted yesterday.

Young daughter saves her mother's life during seizure

A FRIGHTENED nine-year-old saved her epileptic mum's life as she suffered a terrifying seizure.
Chelsea Cameron cleared mum Christine's mouth and put her into the recovery position.


Her quick thinking stopped her mum from choking on her tongue.


And last night medics praised Chelsea, who has been looking after Christine since she was six.
Christine, 31, of Airdrie, Lanarkshire, said: "She's my wee lifesaver, my wee angel. I really rely on her.

"If Chelsea wasn't there, I don't know what would have happened.

"I was out of the game. But she just went into autopilot and helped.

"She does everything for me when I'm in seizures. I don't know what I'd do without her."

The episode happened while the pair were at Christine's mum Pearl's house.

Chelsea said: "Mum came into the room and fell and banged her head and started fitting. I got a pillow and tried to put it under her head.

"I turned her on her left side into the recovery position and held her hand and tried to get a response out of her.

"I tried to move her forward to see if she was sick or anything, and she wasn't, but I kept the towel under her mouth in case.

"I also opened her mouth, in case she couldn't breathe."

Chelsea admitted that her mum's seizures frighten her but she has since overcome her fear to care for her.

She said: "I do feel scared when it happens, but I don't let it overtake me so that I can go and do things that I need to and not run away."

And Pearl, 59, said: "Chelsea is so good at working with her.

"Adults have been in the house and have been frightened and then you see how that wean can work with her mum. She should get an award. She's such a brave wee girl.

"She doesn't even go out with her friends in case something happens to her mum."

Chelsea learned her skills through a worker at the charity Quarrier's.

A spokesman for the Scottish Ambulance Service said: "What she did would save her mum's life.
"There's a risk with certain medical conditions of the tongue blocking the airway. It's not the prettiest thing to see, given the condition.

"It can be quite frightening and intimidating for an adult, never mind a child.

"So if you've got a nine-year-old aware of how to conduct that manoeuvre, it's excellent."

Saturday, April 12, 2008

Recommendations for vaccines to prevent seizures and more...

It seems that each year we add another vaccine to the schedule of shots babies need, making it feel like babies are little pincushions. Efforts have been made to combine as many vaccines together as possible to minimize the number of pokes a baby gets at one time. Unfortunately, one of the new combinations-MMRV, which combines vaccinations for measles, mumps rubella, and varicella-is no longer recommended, and we are going back to giving MMR and varicella separately.

This change is due to the fact that fever-related seizures are seen more often in children who receive MMRV instead of the two separate shots. The Advisory Committee on Immunization Practices (ACIP) of the U.S. Centers for Disease Control and Prevention updates its vaccine recommendations from time to time to keep them in line with the latest research.

Here's what my colleague, Dr. Henry Bernstein, wrote about the change recently:The ACIP used to recommend that children receive a combination vaccine rather than separate shots. Why? Well, as any parent can tell you, children don't like shots. However, a recent study has found that children who receive MMRV are almost twice as likely to have febrile seizures-fever and shaking-7 to 10 days after the vaccine than children who receive MMR and a separate varicella vaccine. That sounds worrisome, but don't be alarmed.

The risk for febrile seizures due to these vaccines is very low: 9 children for every 10,000 who receive MMRV, and 4 children for every 10,000 who receive two separate shots. Moreover, these seizures more often occur outside of the context of vaccine. One in every 25 young children will have at least one febrile seizure, usually before the age of 5. Febrile seizures can be scary for the baby's caretakers, but they usually do not lead to any problems down the road for the baby. I hope that parents don't misunderstand the findings and become needlessly alarmed.

This updated recommendation does not mean that your child should not receive the MMRV vaccine. It just means that the MMRV is no longer the clear favorite over giving the MMR and varicella vaccines separately. Here are some suggestions:

· Remember that vaccines are safe. All vaccines are studied in large numbers of children for many years before they are licensed for routine use. Then, they are monitored for safety and effectiveness after they are licensed.

· Make sure that your child receives all recommended vaccinations. The benefits of immunizations outweigh the risks. No one likes to see their child receive an extra shot, or, as sometimes occurs, get a fever or possibly have a febrile seizure. Still, things are much better today than before the introduction of vaccines. Many childhood diseases are now rare because of immunizations, but outbreaks can and do occur. With proper immunization of all healthy children, there hopefully will continue to be fewer and fewer cases of these diseases each year.

· Stay informed about vaccines. There is currently a lot of misinformation about vaccines. Make sure you know where to go to get the most accurate information. For reliable information about vaccines, it is always best to consult trusted sources, such as your child's pediatrician or the Web sites of the National Immunization Program or the American Academy of Pediatrics.

In addition, don't just read or listen to the headlines - these are designed to capture your attention, but may be slightly misleading. Read the details of the article or listen to the whole story, so you can have all the facts. There have been many celebrities who have latched on to the "vaccines cause autism" movement as a result of having a child with autism or a friend who has one.

While this type of testimony can be compelling, the data do not support the conclusion that vaccines cause autism. So be a savvy reader and observer and be sure to read the less sexy material generated by scientific work.Dr. Victoria McEvoy graduated from Harvard Medical School in 1975 and is currently an Assistant Professor of Pediatrics at HMS.

She is the Medical Director and Chief of Pediatrics at Mass General West Medical Group. She has practiced pediatrics for almost thirty years. She has been married to Earl for thirty six years and raised four children. She currently enjoys writing, traveling, reading, almost all sports, and spending time with her two grandsons.

Stress and seizures

One of Kathryn Sykes's biggest fears is that someone will stick a spoon in her mouth when she's having a seizure.

"Because that could break my teeth or I could choke on that," said Sykes, who occasionally suffers from tonic-chronic seizures. "It's a complete myth that you could swallow your tongue."

But since the 26-year-old was diagnosed with epilepsy eight years ago, she's learned how to better handle stress related to a chronic, uncontrolled condition. "That's a major thing with epilepsy that's really difficult, is the lack of predictability and the lack of control," said Sykes, community development coordinator with the B.C. Epilepsy Society. "Essentially, what a seizure is, is losing control on what your brain's doing in one way or another for a little while and so, as you can imagine, that's pretty upsetting."

Tonic-chronic seizures were once called grand mal, which is French for "big bad." Now they're called tonic for stiffening, and chronic for shaking.

Knowing how to cope with daily strains is especially important to people who have epilepsy, because stress can trigger seizures. That's why the B.C. Epilepsy Society, a non-profit charitable organization, is presenting an April 17 talk by psychologists Josef Zaide and Audrey Ho on stress management and seizures. The talk is part of the organization's lecture series.

Zaide said most people are children when they are diagnosed with epilepsy, a neurological disorder for which the symptoms are seizures. The diagnosis and disorder can be especially rough on teenagers who don't want to stand out from their peers. And having uncontrollable seizures can mean a person with epilepsy can't drive, an important milestone often equated with independence for adolescents.

Sykes also has seizures that briefly affect her speach and comprehension, which can be awkward in social situations.

But Zaide says the stress of trying to keep the condition a secret because of stigma leads to increased anxiety.

Zaide and Ho recommend adopting a regular exercise or relaxation routine and examining one's beliefs that could be contributing to stress.

Zaide noted many successful people, including Neil Young, Danny Glover and Agatha Christie, have or have had epilepsy.

The stress management talk is April 17 in the Chan Auditorium in the Education and Research Building at the Children's and Women's Health Centre, 4480 Oak St. It's free to B.C. Epilepsy Society members and $10 otherwise. Register at 604-875-6704 or info@bcepilepsy.com. For more information, see bcepilepsy.com.

Toddler fights rare neurological disorder following extreme surgery

He can recite his ABCs, count to 20 and wants to know the "why" behind almost everything. But some things don't come easy for 3 1/2-year-old Magiting Mina. Like opening and closing his left hand or wiggling the toes on his left foot.

The Lake Hopatcong toddler, who goes by the nickname "Kiko," was born with a rare neurological disorder, making the right half of his brain abnormally larger than the left. The imbalance caused frequent and violent seizures during the first two years of his life.

That's no longer the case. Eighteen months ago, doctors removed the right half of Kiko's brain -- where the seizures originated -- during a five-hour operation at the Cleveland Clinic in Ohio.
While it sounds extreme, the surgery -- known as a hemispherectomy -- has become more common in recent years, especially among children. After the damaged side of the brain is removed, the healthy side gradually takes over some of the lost functions and the void created by the surgery fills with fluid.


"He really was one of the kids who flew right through the operation without really batting an eye," said William Bingaman, the pediatric neurosurgeon who performed the procedure. "He certainly is doing quite well from a cognitive standpoint."

Bingaman, who has performed about 300 of the operations since 1996, said some children who undergo the surgery attend college and live remarkably normal lives, while others are left with physical and cognitive problems.

Kiko does have some physical limitations resembling those of a stroke victim, mostly left-side weakness, which he exhibited even before the right side of his brain was removed. He also has diminished peripheral vision in both eyes.

"These kids may turn out rather normal, but they're not going to be professional athletes or something that requires both hands for manual dexterity," said George Jallo, associate professor of pediatrics and neurosurgery at the Johns Hopkins Children's Center in Baltimore, who has performed similar surgeries.

Kiko is enrolled in a preschool for the disabled and attends weekly outpatient therapy sessions at Children's Specialized Hospital in Mountainside. There he engages in exercises to strengthen his left arm and leg, which he tends to neglect.

The bubbly toddler is cooperative and at one point even reminds physical therapist Adrienne Darpino about the "left-side rules" before he ascends a ladder leading to a sliding board. In a few minutes, he is ready to move on.

"We are going to do something else?" he eagerly asks.

Soon he is playing soccer, with his therapist encouraging him to use his left foot to kick a small red ball.

"I win," he shouts, as the ball rolls across the floor.

THE ULTIMATE SURGERY Kiko's disorder -- called hemimegalencephaly -- wasn't apparent until he was nearly seven months old. That's when he had his first seizure, which was marked by continuous blinking and uncontrollable drooling.

"From the first moment the seizures started, he would have them every single day," recalled his mother, Lina Mina, 42, a nurse who hasn't worked since 2005 because of her son's illness.
Kiko began taking anti-seizure medication, but the convulsions continued and even worsened, delaying his speech and impeding his ability to walk. Doctors at Morgan Stanley Children's Hospital of Columbia Presbyterian in New York performed two surgeries to separate the right side of Kiko's brain from the left, in hopes the seizures would stop.


They did for a while, but soon returned.

"He would drop his head and slump down almost to the floor. Sometimes, if he was sitting, his head would end up banging against his toys," said Lina. She and her husband, Joseph, also have a 10-year-old son, Dax.

The Minas, after consulting with doctors and researching their son's disorder, decided to go for the ultimate surgery -- having the right side of Kiko's brain removed. The operation took place in August 2006.

"Our worry was his cognitive ability, but he came out of surgery breathing on his own and could even call his brother's name," his mother said. "It was like magic."

Cigdem Akman, a pediatric neurologist at Columbia Presbyterian, said the boy's "cognitive function is quite impressive."

"He understands, can follow instructions, you really wouldn't think he went through such a big surgery," said Akman, who referred Kiko to the Cleveland Clinic.

There are times when Kiko is playing and suddenly stops, with a blank stare on his face. After a few moments, he seems fine. Bingaman said there is no clinical evidence to suggest that what Kiko is experiencing is an actual seizure.

"We're not quite sure what these spells are, but they usually go away (with time)," he said.
One thing appears certain, however, Kiko won't be slowed down by anything.


The Children's Miracle Network, the alliance of hospitals to which Children's Specialized Hospital belongs, recently selected him to represent New Jersey in a national program that honors children who have overcome severe medical challenges.

Last month, Kiko and his family visited the White House, where he posed for pictures with President Bush. He also hung out with Miss America 2008, Kirsten Haglund of Michigan. There also was a visit to Disney World, where he met and danced with Mickey and Minnie.

The staff at Children's Specialized recently welcomed Kiko home with a party, complete with a cake, colorful balloons and a commemorative collage of his trip.

"I'm Kiko. I have my medal," he said happily, as he playfully circled a room full of hospital well-wishers, showing off the gold medal around his neck.

Soon it was time for his favorite sandwich, ham and cheese, and afterward, a piece of cake.
"Umm, good!" Kiko said as he dug in with a fork.

Sunday, April 06, 2008

Mom arrested for drugging baby

Denver police have arrested a mother whom they suspect of giving her 3-month-old child methamphetamine.

Police say the child was brought to a hospital suffering from seizures last week, and doctors found methamphetamine in the child's system.

Twenty-7-year-old Katreice Trujillo was arrested Wednesday on suspicion of child abuse resulting in serious bodily injury.

Saturday, April 05, 2008

Cruel hackers created Javascripts in order to trigger seizures on Epilepsy site!

Thirty-three year-old RyAnne Fultz, pictured here, is among the victims of the attack. Fultz suffered a severe seizure when her webpage was directed by attackers to a malicious page. Hackers commit the first known attack designed to cause physical harm on victims.

Internet troublemakers, known as griefers, conducted an organized hack attack against an epilepsy support message board last weekend. The attack, designed to inflict bodily injury, is the first known example of a large scale hack designed to inflict physical damage on the victims. The attackers used injected JavaScript to trigger flashing images on the computers of their victims, causing them severe migraines and seizures.

The site is run and maintained by a nonprofit organization, the Epilepsy Foundation. Its goal is to provide a place where epileptics and family members can provide each other with support. The group had to close the site briefly on Sunday to remove the malicious code and beef up security.Ken Lowenberg, senior director of web and print publishing at the Epilepsy Foundation states, "We are seeing people affected.

It's fortunately only a handful. It's possible that people are just not reporting yet -- people affected by it may not be coming back to the forum so fast."Hackers launched the attack Saturday, March 22. They used a script to generate hundreds of messages with flashing animated GIF files attached. On Sunday the griefers upped their assault injecting JavaScript into many posts. The script would redirect the users’ page to a complex image crafted to induce seizures.

The malefic page was specially designed to trigger seizures in both photosensitive and pattern-sensitive epileptics, two major classes of epilepsy.One pattern sensitive epileptic, RyAnne Fultz, a 33-year old mother who regularly uses the group, was a victim of Sunday's attack. After initially clicking an innocent sounding post, her screen was filled with a large pattern of blinking squares. She says she "locked up".

Fultz who works IT Coeur d'Alene, Idaho explained, "I don't fall over and convulse, but it hurts. I was on the phone when it happened, and I couldn't move and couldn't speak."Fortunately, Fultz was rescued by her 11-year-old son who came into the room and forced her gaze away from the screen and killed the process. Fultz emphasized how bad a seizure the attack caused, stating, "It was a spike of pain in my head.

And the lockup, that only happens with really bad ones. I don't think I've had a seizure like that in about a year."Browen Mead, a 24-year-old epilepsy patient in Maine, suffered from a daylong migraine from the posts. She said it was worsened by the fact that she lingered on the page, trying to figure out who was responsible. She states, "Everyone who logged on, it affected to some extent, whether by causing headaches or seizures."There is some circumstantial evidence that the attack was carried out by the group Anonymous, who gained public attention for their hacks on the Church of Scientology and successful protest campaign against the Church. Anonymous was allegedly incensed by posts mentioning EBaums World, a site much despised by the group.

Those who believe Anonymous to be behind the attack point to a since-deleted post on 7chan.org; an Anonymous stronghold that allegedly organized the attack.Despite their suffering, many epileptics expressed their support and appreciation for the site and the Epilepsy Foundation's work and response. Said Fultz, "We all really appreciate them for giving us this forum and giving us this place to find each other."Epilepsy comes in many forms with about 50 million people affected worldwide.

Approximately 3 percent are photosensitive meaning that flashing lights and colors can trigger seizures. DailyTech had previously discussed proof-of-concept attacks on medical implants such as pacemakers, but this is the first known real world attack with the intent to physically injure.