Mixed reax from parents on peanut allergy advance

Date: 3/18/2009

By HOLLY RAMER
Associated Press Writer

CONCORD, N.H. (AP) — One mom says she'd be first in line for a promising treatment that exposes children with peanut allergies to tiny amounts of peanut flour. Another remains fearful, with the painful image of her son's face blown up beyond recognition still fresh in her mind.

While some parents of children with life-threatening peanut allergies see a glimmer of hope in a recent study suggesting a possible cure, others remain dubious that it will ever change their children's lives.

"It's like when we were growing up 20 years ago and we saw the flip phones on Star Trek — that was going to be the wave of the future, but we thought that would never happen," said Eva Stilkey of Raymond, N.H. "It's great, but those of us who live with the disappointment and the reality of it, you kind of protect yourself. We really do hope it happens someday, but we don't want to have false hope."

Earlier this week, scientists announced the findings of a small study that involved giving a handful of highly allergic children tiny amounts of peanut flour daily for more than two years. Gradually, the children became less sensitive, and so far, five show no remaining sign of the allergy.

Larger studies are beginning to see if the treatment works for more people and how long it lasts. But it was big news for the nearly 2 million Americans who are allergic to peanuts.

Stilkey's son, Nicholas, who turns 5 on Friday, was 2½ when a single bite of peanut butter pie sparked a severe reaction.

"We had him spit it out, and when he did, when he lifted his head back up. I couldn't even recognize him. His face was blown up to a point where there was no separation between his nose or his lips. He was stuffing his hands frantically down his throat trying to breathe," she said.

Stilkey considers the study participants heroes, but she's in no hurry to follow in their footsteps.

"I am full of complete admiration for the parents and those children who put themselves through that because I know as a mother, I would be absolutely fearful to try to put Nick through that, just because I've seen what happened to him," she said.

Tamara Leibowitz, who runs a support group for parents of children with food allergies in Portsmouth, N.H., said it would be a leap of faith to subject her son to small doses of what essentially has been considered poison, but "I think we'd jump at the chance."

"My son would be terrified at the beginning, but he's been paying attention, too, even at 9 years old, and he's really encouraged by what he sees," she said, describing her own reaction as "cautiously optimistic."

In Orange County, Calif., Louise Larsen said she, too, would seek out the treatment if it becomes available.

"Would I put my child through that? Sure, if I sat right next to her, and we went very slowly and it was in a very controlled setting," said Larsen, whose 12-year-old daughter is allergic to peanuts. But she said she would never be completely convinced that the allergy was gone.

"Even if they did conclude she no longer had any allergy, as her mom, I'm going to send an EpiPen with her until she goes to college," she said, describing the portable injections used to treat anaphylaxis, a severe allergic reaction marked by swelling of the throat or tongue, hives, and breathing trouble.

Another California mom, Lori Fletcher, would be just as eager to try the treatment on her 6-year-old son, though she and other parents worry that publicity over the breakthrough would create more misconceptions about food allergies. She doesn't want people who have heard the news to assume that it means her son now can have "just a little bit" of food containing peanuts. "We still need to be avoiding it," she said.

But she also found the news inspiring, and plans to use it to promote an upcoming fundraising walk.

"I hope people take from it that if we do raise money, we can get a treatment fairly soon," said Fletcher, of Danville, Calif.

In the meantime, parents said they will remain vigilant, obsessively checking each food label and ensuring their children's safety at home and school.

"Every time you think you finally have come to a point where you can sit back a little and trust the school has everything in place, you get the phone call that someone has brought this in by mistake," said Stilkey.

Lori Pelletier-Baker, of Concord, N.H., hasn't faced that situation yet because her 4-year-old daughter isn't in school, but kindergarten is just around the corner.

"It is a constant weight that I think everybody, including Kaleigh, carries on their shoulders," she said. This week's breakthrough doesn't lessen that weight, she said.

"There's that piece of me that thinks, 'Wow, that's so amazing!' But the reality is that it may take a long time to reach us," she said. "I'm not going to give up hope, but I know that things aren't going to change any time soon."

Copyright 2009 The Associated Press.

10 drink windshield wiper fluid at Ark. day care

Date: 3/13/2009

By JON GAMBRELL
Associated Press Writer

LITTLE ROCK, Ark. (AP) — Ten children at a day care center drank windshield wiper fluid after a staffer served it from a container mistaken for Kool-Aid and placed in a refrigerator, authorities said Friday.

The day care owner surrendered her state license Friday.

Doctors estimate the children, ages 2 to 7, drank about an ounce of the blue fluid late Thursday afternoon before realizing it tasted wrong, said Laura James, a pediatric pharmacologist and toxicologist at Arkansas Children's Hospital in Little Rock.

Only one child remained hospitalized Friday morning, after blood samples showed "measurable levels" of methanol, a highly toxic alcohol that can induce comas and cause blindness, officials said. The day care also provided the fluid for testing.

The windshield wiper fluid was bought with several other items on a recent shopping trip, James told The Associated Press. "This product was mistakenly grabbed and thought to be Kool-Aid and put in the refrigerator," she said.

The day care's operator, Carolyn Bynum, was interviewed Friday by child welfare investigators and gave up her license, said Julie Munsell, a spokeswoman for the state Department of Human Services. Bynum declined to comment to the Associated Press.

"She was so upset about what had occurred and she was definitely worried some of the children had been injured," Munsell said. "It was just a mistake, she says. She says it was just a horrible mistake."

Bynum's license had allowed her to care for 10 children in her home in Scott, about 15 miles east of Little Rock. Munsell said Bynum had no found complaints or serious compliance issues in the past.

By surrendering her license, Bynum can no longer care for children without reapplying.

The toxicologist warned that many antifreeze or windshield wiper solutions have bright colors, which can be mistaken for fruit drinks.

"I think the take-home message is not to have these products in the kitchen or where you're doing any kind of food preparation," she said.

Copyright 2009 The Associated Press.

Coroner criticizes doctors over girl who starved

Date: 2/16/2009


LONDON (AP) — An 8-year-old girl starved herself to death because of an extreme dental phobia that doctors failed to diagnose properly, a British coroner said Monday.

Coroner Emma Carlyon said staff did not realize the severity of the condition afflicting Sophie Waller, who died in December 2005. Carlyon said this prevented the girl "from receiving the medical support that could have prevented her death."

Witnesses at the inquest testified that Sophie had an extreme phobia of dentists and refused to eat, sleep or drink after her baby teeth became loose. Medical staff ultimately decided to pull out all her baby teeth under general anesthetic in November 2005.

She was sent home a few days later but would not eat and died three weeks after the operation.

Her parents said they contacted doctors and a psychologist but no one saw Sophie in person before she died.

The Royal Cornwall Hospital in Truro, 250 miles (400 kilometers) southwest of London, acknowledged there had been failures in Sophie's care, and said it had made changes.

A coroner's inquest is required in Britain to establish the facts when someone dies unexpectedly, violently or of unknown causes, but has no power to punish anyone.

Carlyon gave a narrative verdict, in which a coroner simply outlines the circumstances that led to the death or deaths.

She said the immediate cause of Sophie's death was kidney failure due to dehydration and starvation.

Copyright 2009 The Associated Press.

Don't just talk to your toddler — gesture, too.

Date: 2/13/2009

By LAURAN NEERGAARD
AP Medical Writer

WASHINGTON (AP) — Don't just talk to your toddler — gesture, too. Pointing, waving bye-bye and other natural gestures seem to boost a budding vocabulary.

Scientists found those tots who could convey more meaning with gestures at age 14 months went on to have a richer vocabulary as they prepared to start kindergarten. And intriguingly, whether a family is poor or middle class plays a role, the researchers report Friday.

Anyone who's ever watched a tot perform the arms-raised "pick me up now" demand knows that youngsters figure out how to communicate well before they can talk. Gesturing also seems to be an important precursor to forming sentences, as children start combining one word plus a gesture for a second word.

University of Chicago researchers wondered if gesturing also played a role in a serious problem: Children from low-income families start school with smaller vocabularies than their better-off classmates. It's a gap that tends to persist as the students age. In fact, kindergarten vocabulary is a predictor of how well youngsters ultimately fare in school.

One big key to a child's vocabulary is how their parents talked to them from babyhood on. Previous research has shown that higher-income, better-educated parents tend to talk and read more to small children, and to use more varied vocabulary and complex syntax.

Do those parents also gesture more as they talk with and teach their children?

To see, university psychology researchers Susan Goldin-Meadow and Meredith Rowe visited the homes of 50 Chicago-area families of varying socioeconomic status who had 14-month-olds. They videotaped for 90 minutes to count both parents' and children's words and gestures. Quantity aside, they also counted whether children made gestures with specific meanings.

This is not baby sign-language; parents weren't formally training their tots. Instead, they used everyday gestures to point something out or illustrate a concept. A child points to a dog and mom says, "Yes, that's a dog." Or dad flaps his arms to mimic flying. Or pointing illustrates less concrete concepts like "up" or "down" or "big."

The researchers found an income gap with gesturing even in toddlerhood, when children speak few words.

Higher-income parents did gesture more and, more importantly, their children on average produced 25 meanings in gesture during that 90-minute session, compared with an average of 13 among poorer children, they reported in the journal Science.

Then the researchers returned to test vocabulary comprehension at age 4½. The poorer children scored worse, by about 24 points. Researchers blamed mostly socioeconomic status and parents' speech, but said gesturing contributed, too.

It's not just that richer parents gesture more, stressed Peggy McCardle of the National Institute of Child Health and Human Development, which funded the work.

"It's that there's a greater variety of types of gesture that would signal different types of meaning," McCardle said. "It sure looks like the kids are learning that and it's given them kind of a leg-up."

The study doesn't prove gesturing leads to better word-learning, but it's a strong hint. Now scientists wonder if encouraging low-income parents to gesture more could translate to toddlers who do, too, and in turn improve school readiness.

"It wouldn't hurt to encourage parents to talk more and gesture more," Rowe said.

Copyright 2009 The Associated Press.

Texas girl gets new heart; sis awaiting transplant

Date: 1/20/2009

By JAMIE STENGLE
Associated Press Writer

DALLAS (AP) — A 7-year-old girl received a new heart Monday, more than eight months after she and her older sister were put on the transplant list because of the same rare ailment.

Their mother said Shayde Smith is relieved now that her sister Emily has received a transplant. "She's still nervous about it, but she said that now that Emily's made it through, she knows she will," Natalie Van Noy said.

The girls have restrictive cardiomyopathy, which means the heart doesn't relax between pumps and doesn't fill properly with blood. The condition can cause blood clots or death.

Emily was a higher priority for transplant than 9-year-old Shayde because she had more symptoms, including wheezing spells and her lips, toes and fingertips turning blue when she got cold.

Van Noy said Emily's hands and feet are now warm. "She looks awesome," her mother said.

The girls' condition is rare, with less than one-in-a-million children diagnosed, said Dr. Kristine Guleserian, the pediatric cardiothoracic surgeon who led the team operating on Emily at Children's Medical Center Dallas. Without a transplant, the chance of survival is 40 to 50 percent one to two years after diagnosis.

Restrictive cardiomyopathy doesn't have a known cause. It seems to run in families, but the condition hasn't yet been proven to be genetic.

While it isn't rare for siblings to need transplants, it is rare that they would need them at the same time, said Pam Silvestri, a spokeswoman for Southwest Transplant Alliance, one of the organ donation agencies across the country that provides organs to transplant hospitals.

The girls are from the Boyd area, about 30 miles northwest of Fort Worth.

___

Children's Medical Center Dallas: www.childrens.com

Donate Life America: www.donatelife.net

Copyright 2009 The Associated Press.

MRSA rising in kids' ear, nose, throat infections

Date: 1/19/2009

By LINDSEY TANNER
AP Medical Writer

CHICAGO (AP) — Researchers say they found an "alarming" increase in children's ear, nose and throat infections nationwide caused by dangerous drug-resistant staph germs.

Other studies have shown rising numbers of skin infections in adults and children caused by these germs, nicknamed MRSA, but this is the first nationwide report on how common they are in deeper tissue infections in the head and neck, the study authors said. These include certain ear and sinus infections, and abcesses that can form in the tonsils and throat.

The study found a total of 21,009 pediatric head and neck infections caused by staph germs from 2001 through 2006. The percentage caused by hard-to-treat MRSA bacteria more than doubled during that time from almost 12 percent to 28 percent.

"In most parts of the United States, there's been an alarming rise," said study author Dr. Steven Sobol, a children's head and neck specialist at Emory University.

The study appears in January's Archives of Otolaryngology, released Monday.

It is based on nationally representative information from an electronic database that collects lab results from more than 300 hospitals nationwide.

MRSA, or methicillin-resistant Staphylococcus aureus, can cause dangerous, life-threatening invasive infections and doctors believe inappropriate use of antibiotics has contributed to its rise.

The study didn't look at the severity of MRSA illness in affected children.

Almost 60 percent of the MRSA infections found in the study were thought to have been contracted outside a hospital setting.

Dr. Robert Daum, a University of Chicago expert in community-acquired MRSA, said the study should serve as an alert to agencies that fund U.S. research "that this is a major public health problem."

MRSA involvement in adult head and neck infections has been reported although data on prevalence is scarce.

MRSA infections were once limited mostly to hospitals, nursing homes and other health-care settings but other studies have shown they are increasingly picked up in the community, in otherwise healthy people. This can happen through direct skin-to-skin contact or contact with surfaces contaminated with germs from cuts and other open wounds.

But staph germs also normally live or "colonize" on the skin and in other tissues including inside the nose and throat, without causing symptoms. And other studies have shown that for poorly understood reasons, the number of people who carry MRSA germs is also on the rise.

Sobol said MRSA head and neck infections most likely develop in MRSA carriers, who become susceptible because of ear, nose or throat infections caused by some other bug. Symptoms that it could be MRSA include ear infections that drain pus, or swollen neck lymph nodes caused by pus draining from a throat or nose abcess.

Unlike cold and flu bugs, MRSA germs aren't airborne and don't spread through sneezing.

MRSA does not respond to penicillin-based antibiotics and doctors are concerned that it is becoming resistant to others.

The study authors said a worrisome 46 percent of MRSA infections studied were resistant to the antibiotic clindamycin, one of the non-penicillin drugs doctors often rely on to treat community-acquired MRSA. However, other doctors said it's more likely that at least some of infections thought to be community-acquired had actually originated in a hospital or other health-care setting, where MRSA resistance to clindamycin is common.

Dr. Buddy Creech, an infectious disease specialist at Vanderbilt University Medical Center, said the research "fits nicely" with smaller studies reporting local increases in MRSA head and neck infections.

"Every time someone looks, the rates of MRSA are going up and that's certainly concerning because it's a bug that can cause dramatic disease," Creech said.

___

On the Net:

Archives: http://www.archoto.com

CDC: http://www.cdc.gov/ncidod/dhqp/ar_mrsa.html

Copyright 2009 The Associated Press.

Nutrient diligence needed for vegetarian kids

Date: 1/11/2009

By MIKE STOBBE
AP Medical Writer


Children who want to be vegetarians need to "fill in the blanks" of their low-protein diets by eating alternatives to red meat, fish and poultry, experts say.

Good examples are soybeans, fortified soy milk and nuts. Those are important sources of the protein, iron, zinc, calcium and vitamin D that most kids get from meat.

Nutritional yeast — which has a cheesy flavor — has the much-needed vitamin B-12. And flaxseed is good for linolenic acid.

Vegetarian children who eat eggs and dairy products will most likely get all the nutrition they need. But those who become vegan — abstaining from dairy — need to be more diligent, said Dr. David Ludwig of Children's Hospital Boston, a specialist in pediatric nutrition.

"It really requires much more attention to avoid nutrient deficiencies," Ludwig said.

Children can start on a vegetarian diet from birth, said Sarah Krieger, a spokeswoman for the American Dietetic Association who is a registered dietitian at All Children's Hospital in St. Petersburg, Fla.

Breast milk or an iron-fortified formula are necessary in the first six months, she said, adding that soy-based formula is an option.

Copyright 2009 The Associated Press.

Study: Many kids in Katrina trailer park anemic

Date: 11/25/2008

By JANET McCONNAUGHEY
Associated Press Writer

NEW ORLEANS (AP) _ Dozens of infants and toddlers who lived in Louisiana's biggest trailer park for those displaced by Hurricane Katrina were anemic because of poor diets, at a rate more than four times the national average.

About 41 percent of 77 children under the age of 4 suffered from the condition this year, according to a study released Monday by the Children's Health Fund. Most, and possibly all, lived in the Renaissance Village trailer park in Baker.

Iron deficiency anemia can cause fatigue and learning problems. Severe deficiency in young children can delay growth and development and even cause heart murmurs.

The national rate for children that young is below 10 percent. Louisiana has one of the nation's highest anemia rates, with about 24 percent of all children below the age of 5 affected, according to the 2007 Pediatric Nutrition Surveillance survey.

Dr. Irwin Redlener, president of the Children's Health Fund and director of Columbia University's National Center for Disaster Preparedness, said the Renaissance Village rate was double the rate for homeless children the same age in New York City shelters.

The study used records for all 261 babies and children who lived in New Orleans until Katrina and were treated last year at CHF's mobile clinics at the trailer park and Baton Rouge schools, said Roy Grant, the organization's director of applied research and policy analysis.

While most of the affected children were storm evacuees, it was possible that a few were natives of Baton Rouge.

But studying the problem further and providing follow-up care for the children is difficult because the state closed the parks in May.

"Now it's more difficult, because they're no longer in the trailer area. They're dispersed around the state. So it's a little harder to get follow-up," said Dr. Jimmy Guidry, Louisiana's health officer.

___

On the Net:

http://www.cdc.gov/nccdphp/dnpa/nutrition/nutrition_for_everyone iro n_defici ency/index.htm

Copyright 2008 The Associated Press.

Huntsville girl conquers spina bifida

Date: 11/3/2008 4:00 AM

By YVONNE BETOWT
The Huntsville Times


HUNTSVILLE, Ala. (AP) — On a recent Brownie outing to earn a disability awareness badge, Trish Switzer let her troop choose from blindfolds, ear plugs, leg weights, wheelchairs and walkers so they could be "disabled" during a scavenger hunt.

"After all the girls made their choices, (her daughter) Sarah said: 'I want a disability,'" said Switzer with a laugh.

Sarah, 9, was born with spina bifida and walks with the help of braces on the lower parts of her legs. But she doesn't accept the fact she is disabled.

Spina bifida is an opening in the spinal cord that causes full or partial paralysis, nervous system complications, bladder and bowel control problems, learning disabilities, depression and other issues.

The condition affects 70,000 Americans and was once considered a death sentence. But many, like Sarah, are leading near-normal lives.

Today, a pink Barbie wheelchair helps Sarah go long distances. She also is constantly accompanied by her Canine Companion dog, Bakari.

The Heritage Elementary School third-grader also enjoys water skiing, bowling and horseback riding.

After learning about Sarah's birth defect, the Switzers had little time to mourn. That day they were told about an experimental fetal surgery in which doctors take the baby from the womb, perform the operation to close the opening in the spine, and return the baby to the womb so it can continue developing.

The surgeries took place on July 1, 1999, at Vanderbilt in Nashville. Sarah was born again on Aug. 22.

Trish and Sarah were featured in Life magazine because of the risky pioneering procedure.

Today, the surgery is still performed, both before and after birth, but the verdict is still out on which provides the best results. A study is under way by the National Institute of Child Heath and Human Development to determine the most beneficial surgery to prevent problems associated with spina bifida.

When the Switzers first learned Sarah had spina bifida, their world was shattered, along with Bob and Judy Switzer, Sarah's paternal grandparents.

Several decades ago, Judy Switzer was a nurse at Johns Hopkins Hospital in Baltimore where she saw many babies with spina bifida.

"No one knew much about it 50 years ago," she said. "Many babies with it went home and became infected and died."

Her husband, Bob Switzer, said the news was "devastating" at first.

But now he and Judy, who moved to Madison to be near their only grandchild, are enjoying watching Sarah grow and take part in a variety of activities.

"She recently water skied for 16 miles without stopping," said the proud grandfather. "Sarah knows what she can and can't do."

Trish Switzer had never heard of spina bifida until she became pregnant with Sarah.

"I was as healthy as you could be," said Switzer, who was 35 when Sarah was born. "I did everything I was supposed to do (to have a healthy child). I took folic acid, ate healthy and exercised."

Folic acid, a vitamin B supplement doctors recommend to reduce the risk of brain-related problems such as spina bifida/hydrocephalus (fluid on the brain), didn't work in Switzer's case.

But as president of the Spina Bifida Association of Alabama, Switzer is still a big advocate of folic acid which is used to make the extra blood needed during pregnancy and creates healthy cells.

"Folic acid is not a 100 percent guarantee to prevent birth defects," said Switzer, who is trying to educate the public about the debilitating condition during October, Spina Bifida Awareness Month. "But we believe it reduces some of the problems that can occur during a pregnancy."

Dr. Debra Williams with the Madison County Health Department agrees.

"Every woman of pregnancy age should be taking folic acid each day," said Williams. "It can prevent neural tube defects such as spina bifida or any disease that is brain related."

According to the Spina Bifida Association of America, the exact cause of spina bifida is not known, but genetics and environmental factors do play a part in causing the condition that affects one of every 1,000 newborns in the U.S.

While it was almost a certain death sentence 30 years ago, today 80 to 90 percent of infants born with spina bifida survive and live a normal life expectancy.

After moving from England where her husband, Michael, was stationed with the U.S. Army, to Madison in 2005, Switzer attempted to find support for the family as it maneuvered the difficult maze of disability.

One of the first people Switzer met was Bill Whatley of Huntsville, believed to be the oldest active person with spina bifida in the United States at age 78. Now retired, Whatley was head of Huntsville Aviation for three decades. He continues to be a local, state and national advocate for the condition which nearly claimed his life as a child.

The Switzers and Whatley have become close friends since meeting three years ago.

Whatley calls Sarah a "miracle child."

He should know. He's living proof miracles happen.

___

Information from: The Huntsville Times, http://www.al.com/hsvtimes/hsv.html

Copyright 2008 The Associated Press.

Parents press states for autism insurance laws

Date: 10/19/2008 2:49 PM

By CARLA K. JOHNSON
Associated Press Writer


CHICAGO (AP) _ In Washington state, Reza and Arzu Forough pay more than $1,000 a week for behavior therapy for their 12-year-old autistic son.

In Indiana, Sean and Michele Trivedi get the same type of therapy for their 11-year-old daughter. But they pay $3,000 a year and their health insurance covers the rest.

Two families. Two states. Big difference in out-of-pocket costs.

If autism advocates get their way, more states will follow Indiana's lead by requiring health insurers to cover intensive and costly behavior therapy for autism.

In the past two years, six states — Texas, Pennsylvania, Arizona, Florida, South Carolina, Louisiana — passed laws requiring such coverage, costing in some cases up to $50,000 a year per child.

The powerful advocacy group Autism Speaks has endorsed bills in New Jersey, Virginia and Michigan and is targeting at least 10 more states in 2009, including New York, California and Ohio.

Other states, including Illinois, have similar bills in the works but aren't working directly with Autism Speaks.

"This is the hottest trend in mandates we've seen in a long time," said J.P. Wieske, a lobbyist for an insurance coalition that argues that these state requirements drive up insurance costs for everyone. "It is hard to fight them."

For lawmakers, voting against these measures means voting against parents who are struggling to do the best for their children.

Parents tell moving stories about how behavior therapy works better than anything they've tried. In two states, bills got nicknames like "Steven's Law" and "Ryan's Law," so voting against them was tough.

Arzu Forough of Kirkland, Wash., who is pushing a bill in her state, credits behavior therapy for teaching her son Shayan, at age 3, to make a sound to ask for a drink of water. Now 12, he is learning to converse about his favorite food and music, and to talk about his frustrations rather than throw tantrums.

Trained therapists, using principles of applied behavior analysis (ABA), created a system of rewards to teach Shayan these skills. As a preschooler, he got a piece of cheese when he said "bubba" for water. Now a therapist rewards him with tokens when he responds in conversation. He uses the tokens to "buy" privileges like going for a car ride.

Shayan's improvements are a welcome relief to his mother, who once called for police help with her out-of-control son while she was driving.

"I pulled over to the side of the road," she said. "I had to call the police to drive behind me so I could drive safely home."

The Foroughs have health insurance, but it doesn't cover Shayan's therapy. Although they both work full time, they must live rent-free with her elderly mother to be able to afford his treatment.

Meanwhile, the Trivedi family of the Indianapolis suburb of Carmel, get 25 hours a week of behavior therapy for 11-year-old Ellie. They contribute co-pays and a deductible, totaling about $3,000. Insurance pays the rest, about $47,000 a year.

Michele Trivedi is an autism activist. She fought for years after a vaguely worded 2001 Indiana law required coverage but insurers still refused to pay for ABA. Finally in 2006, she helped convince the state's insurance commissioner to issue a bulletin spelling out what was expected of insurers.

"It's no longer acceptable that blatant discrimination against people with autism occur," Trivedi said.

Autism is a range of disorders that hinder the ability to communicate and interact. Most doctors believe there is no cure. An estimated 1 in 150 American children are diagnosed with it.

Supporters say behavior therapy has decades of research behind it and can save money in the long run by keeping people out of institutions. Researchers agree, but say much remains unknown about which therapy works best for autistic kids, whether long-term gains can be claimed, and whether it works with older children.

Some states require behavior therapy coverage up to age 18 or 21. But the scientific evidence for ABA is strongest for the youngest, ages 2 to 5. Some researchers have reported on individual children with autism who no longer appeared disabled when they reached school age.

The most rigorous studies, though, show mixed results. A study published in 2000 showed that preschoolers who got intensive behavior therapy had greater gains in IQ than children who didn't get the therapy. But there was little difference in the two group's language development or the intensity of behavior problems. And the children most severely affected by autism showed no comparative gain.

Another study in preschoolers, published in 2005, showed little difference between an intensive ABA-based program run by therapists and less-intensive therapy from parents; children in both groups improved.

When it comes to older children, the research is sparse, said Tristram Smith of the University of Rochester Medical Center in New York, who co-authored the 2000 autism study.

"You could make a decent case for the little kids up to 6 or 7 that (insurance mandates) would be appropriate," Smith said. "I think it would be hard to make that case for older kids."

Another autism researcher, Laura Schreibman of the University of California at San Diego, said "fly-by-night" behavior therapists could defraud insurers with ineffective therapy.

"I would like to see insurance cover this kind of intervention because it's documented to be effective," she said. "But insurance companies have every right to monitor whether it's working. If it's been two years and there are no gains, an insurance company should be saying, 'What are we paying for here?'"

The Council for Affordable Health Insurance, the industry lobbying arm, estimates autism mandates increase the cost of insurance by less than 1 percent by themselves, but when combined with other requirements make insurance less affordable.

Susan Pisano, a spokeswoman for America's Health Insurance Plans, said the industry has been wary of laws ordering a specific treatment because when new scientific evidence emerges, the mandate remains frozen. And she questions whether behavior therapy is medical or educational.

The American Academy of Pediatrics includes ABA therapy in its clinical report on autism, but describes it as an "educational intervention."

"There has been an effort to transfer the response to autism from school systems to the health care system," Pisano said.

Nevertheless, some big companies and the U.S. military are providing ABA-based autism therapy as a benefit.

The U.S. military's Tricare health insurance program not only covers up to $2,500 a month for the therapy, but also recently expanded the definition of who can provide it to make it more accessible. And some self-insured companies, including Microsoft and Home Depot, pay for autism behavior therapy.

Gaining insurance coverage state by state is the top lobbying priority for Autism Speaks.

"It's the No. 1 thing we hear from parents," said Elizabeth Emken, the group's vice president of government relations. "What's more difficult than knowing there's an effective treatment for your children, but you can't afford to offer it to them because it's not covered by insurance?"

A new federal law requiring insurers to make coverage for mental health conditions equitable with other health coverage was tacked onto the recent financial industry bailout package.

Autism Speaks applauds the law, but says autism is not a psychological condition and that the insurance industry has refused to cover autism treatments in states with mental health parity laws on the books.

"We hope it sets the stage for the Congress and the next president to continue this effort to end discrimination in the health insurance marketplace," Emken said. "Whichever party is elected, autism will be on the table and be a major point of discussion. There may have to be a federal mandate."

Copyright 2008 The Associated Press.

Child Safety: Facts about drowning

In 2004, of all children 1-4 years old who died, 26% died from drowning (CDC 2006). Fatal drowning remains the second-leading cause of unintentional injury-related death for children ages 1 to 14 years (CDC 2005) - U.S. Centers for Disease Control and Prevention

It is estimated that for each drowning death, there are 1 to 4 nonfatal submersions serious enough to result in hospitalization. Children who still require cardiopulmonary resuscitation (CPR) at the time they arrive at the emergency department have a poor prognosis, with at least half of survivors suffering significant neurologic impairment. - American Academy of Pediatrics

19% of drowning deaths involving children occur in public pools with certified lifeguards present. - Drowning Prevention Foundation

A swimming pool is 14 times more likely than a motor vehicle to be involved in the death of a child age 4 and under. - Orange County California Fire Authority

Children under five and adolescents between the ages of 15-24 have the highest drowning rates. - U.S. Centers for Disease Control and Prevention

An estimated 5,000 children ages 14 and under are hospitalized due to unintentional drowning-related incidents each year; 15 percent die in the hospital and as many as 20 percent suffer severe, permanent neurological disability. - National Safety Council

Of all preschoolers who drown, 70 percent are in the care of one or both parents at the time of the drowning and 75 percent are missing from sight for five minutes or less. - Orange County, CA, Fire Authority

The majority of children who survive (92 percent) are discovered within two minutes following submersion, and most children who die (86 percent) are found after 10 minutes. Nearly all who require cardiopulmonary resuscitation (CPR) die or are left with severe brain injury. - National Safe Kids Campaign

For information on how you can prevent infant drowning, visit http://www.infantswim.com/
To find out how infants and toddlers can learn to survive in potentially deadly drowning situations, there is an excellent video at: http://www.childdrowningprevention.com/index.html

Jump seen in staph-linked flu deaths in kids

Date: 10/6/2008 12:08 AM

By LINDSEY TANNER
AP Medical Writer

CHICAGO (AP) _ More children have died from flu because they also had staph infections, according to a new government report that urges parents to have their kids get the flu shot.

The number of deaths wasn't high — 73 during the 2006-07 flu season — but there was more than a fivefold increase in hard-to-treat complications. And preliminary figures indicate deaths rose again during this past winter's flu season.

Public health officials say the numbers underscore the importance of a brand new recommendation that all children, from 6 months through 18 years, get routine flu shots. Before this year, shots were recommended for kids under 5 years.

More than half the children who died were between ages 5 and 17 and had been healthy until they got the flu.

Parents shouldn't panic, "but it's an important message to say even healthy children develop complications and die almost before anything much can be done for them," said Dr. Gregory Poland, a Mayo Clinic infectious disease specialist. He was not involved in the federal study, but has worked with a federal vaccine advisory committee and has consulted for vaccine makers.

Flu season is just beginning, and this year's vaccine should be widely available this month.

While few children die from the flu virus, it puts about 20,000 U.S. kids in the hospital each year.

Only 6 percent of the children studied who died had been fully vaccinated against the flu. Two doses are recommended each flu season for children ages 6 months to 8 years who have not been vaccinated previously; for older kids, just one dose a year is needed.

The study, appearing in the October edition of Pediatrics for release Monday, is based on an analysis of reported flu deaths from the 2004-05 through 2006-07 seasons. Flu deaths in children during those seasons totaled 47, 46 and 73, respectively.

The percentage of those who also had bacterial infections jumped from 6 percent to almost 36 percent. Most had staph infections, and 60 percent of those involved the dangerous MRSA bug, which is resistant to antibiotics.

More recent data suggest flu deaths among children have continued to rise, with 86 tallied for the 2007-08 season in a preliminary report last month, said Lyn Finelli, the study's lead author, who is a researcher for the Centers for Disease Control and Prevention.

Preliminary information also suggests there has been no drop in fatal flu-staph cases in children, and those could still be on the rise too, she said.

Staph germs commonly live in the nose or skin without causing illness; more than one-fourth of U.S. children and adults carry them.

These bugs can become deadly when they get into the bloodstream, sometimes through wounds. The flu is thought to make people more susceptible to bacterial infections like staph, Finelli said.

Details on how children in the study died were not available, but some developed bacterial pneumonia, seizures and shock.

Finelli said parents should take children to the doctor when they have flu symptoms and signs of other complications. These could include extreme fatigue, no thirst, or in older children complaints about feeling very ill.

___

On the Net:

American Academy of Pediatrics: http://www.aap.org

CDC: http://www.cdc.gov

Copyright 2008 The Associated Press.

Doctors: No hamsters or exotic pets for young kids

Date: 10/6/2008 12:06 AM

By LINDSEY TANNER
AP Medical Writer

CHICAGO (AP) _ Warning: young children should not keep hedgehogs as pets — or hamsters, baby chicks, lizards and turtles, for that matter — because of risks for disease.

That's according to the nation's leading pediatricians' group in a new report about dangers from exotic animals.

Besides evidence that they can carry dangerous and sometimes potentially deadly germs, exotic pets may be more prone than cats and dogs to bite, scratch or claw — putting children younger than 5 particularly at risk, the report says.

Young children are vulnerable because of developing immune systems plus they often put their hands in their mouths.

That means families with children younger than 5 should avoid owning "nontraditional" pets. Also, kids that young should avoid contact with these animals in petting zoos or other public places, according to the report from the American Academy of Pediatrics. The report appears in the October edition of the group's medical journal, Pediatrics.

"Many parents clearly don't understand the risks from various infections" these animals often carry, said Dr. Larry Pickering, the report's lead author and an infectious disease specialist at the federal Centers for Disease Control and Prevention.

For example, about 11 percent of salmonella illnesses in children are thought to stem from contact with lizards, turtles and other reptiles, Pickering said. Hamsters also can carry this germ, which can cause severe diarrhea, fever and stomach cramps.

Salmonella also has been found in baby chicks, and young children can get it by kissing or touching the animals and then putting their hands in their mouths, he said.

Study co-author Dr. Joseph Bocchini said he recently treated an infant who got salmonella from the family's pet iguana, which was allowed to roam freely in the home. The child was hospitalized for four weeks but has recovered, said Bocchini, head of the academy's infectious diseases committee and pediatrics chairman at Louisiana State University in Shreveport.

Hedgehogs can be dangerous because their quills can penetrate skin and have been known to spread a bacteria germ that can cause fever, stomach pain and a rash, the report said.

With supervision and precautions like hand-washing, contact between children and animals "is a good thing," Bocchini said. But families should wait until children are older before bringing home an exotic pet, he said.

Those who already have these pets should contact their veterinarians about specific risks and possible new homes for the animals, he said.

Data cited in the study indicate that about 4 million U.S. households have pet reptiles. According to the American Veterinary Medical Association, all kinds of exotic pets are on the rise, although generally fewer than 2 percent of households own them.

The veterinarian group's Mike Dutton, a Weare, N.H., exotic animal specialist, said the recommendations send an important message to parents who sometimes buy exotic pets on an impulse, "then they ask questions, sometimes many months later."

But a spokesman for the International Hedgehog Association said there's no reason to single out hedgehogs or other exotic pets.

"Our recommendation is that no animal should be a pet for kids 5 and under," said Z.G. Standing Bear. He runs a rescue operation near Pikes Peak, Colo., for abandoned hedgehogs, which became fad pets about 10 years ago.

Copyright 2008 The Associated Press.

More parents ponder cancer gene tests for kids

Date: 9/21/2008 5:48 PM

By MARILYNN MARCHIONE
AP Medical Writer

CHICAGO (AP) _ Women are going for breast cancer gene testing in record numbers, forcing more parents to face a tough question: Should we test the kids?

About 100,000 tests for breast cancer gene mutations were done last year, double the number in 2005. The trend may grow even more because of widening insurance coverage and a new law banning genetic discrimination.

Medical experts advise against such testing before age 25, saying that little can be done to prevent or screen for breast or ovarian cancer until then, so the knowledge would only cause needless worry.

However, new studies and interviews by The Associated Press show that many people who have BRCA gene mutations — and even more of their offspring — disagree. Cornell University freshman Jenna Stoller is one.

"I'm the kind of person that, like my mom, am more comfortable knowing something about myself than not knowing," said Stoller, who tested positive earlier this year, shortly after her 18th birthday. Her mother made her wait five years after revealing her own positive test result, even though Jenna wanted to be tested at age 13.

"I remember thinking on my 17th birthday that I had another year to wait till I could make the decision for myself," she said.

Research also shows there can be benefits to at least talking about testing and inherited cancer risks with teens. It led some to quit smoking, one study found. Others, like Stoller, were advised to limit alcohol and avoid birth control pills, which can raise the risk of breast cancer though they also lower the risk of ovarian cancer.

A decade after BRCA testing began, researchers are just starting to discover the many effects that someone's positive test can have on other family members. A big issue is whether it is ethical or good to test minors.

"I've seen a fair number of parents in clinic who have really struggled with this question," said Dr. Angela Bradbury, a breast cancer specialist at Fox Chase Cancer Center in Philadelphia who has led several studies on the topic.

Myriad Genetics Inc., based in Salt Lake City, sells the only BRCA gene test, which costs up to $3,000.

Men can also carry a BRCA mutation, and if either parent does, a child has a 50-50 chance of inheriting it. The mutations are most common in people of eastern European Jewish descent.

Women with a faulty gene have a three to seven times greater risk of developing breast cancer and a higher risk of ovarian cancer. Men have more risk of prostate, pancreatic and other types of cancer.

To lower risk, women can consider anti-estrogen drugs or having their breasts or ovaries removed. But these drastic measures are not advised for very young women. Even mammograms are not advised till age 25, because cancer is rare before then.

So the American Society of Clinical Oncology and other groups say that when the risk of childhood cancer is low and nothing can be done to lower it, children should not be given gene tests.

"The rule is, do no harm — test only if you can offer something that will help," said Mary-Claire King, the University of Washington scientist who in 1990 discovered the first breast cancer predisposition gene, BRCA-1.

"The life of a young girl is complicated enough already. There is nothing about it that needs to change" if she carries one of these genes, King said.

But some parents are testing girls before they even have breasts, let alone cancer risk. One woman had her 4-year-old daughter tested, said Sue Friedman, executive director of FORCE: Facing Our Risk of Cancer Empowered, a Tampa-based support group for people with BRCA genes.

Another woman tested two very young children several years ago at Baptist Health South Florida in Miami.

"We wanted to know — it's as simple as that," she said. "Kids are born with all kinds of defects that parents have to make decisions about. I just think this is one of those things," said the woman, who spoke on condition of anonymity because of privacy concerns for her children.

Rae Wruble, a nurse and genetics adviser at Baptist Health, said this woman was the only one in more than 900 she has counseled who chose to test very young children. Wruble said she always tells patients that cancer groups recommend against testing minors and why. But she admitted: "If I had young children, I would have tested them because that's just the kind of person I am — I would want to know."

Most parents do not peek inside their child's gene toolbox, Friedman said. "It does deny the actual patient informed consent."

"I feel very strongly that people should not test their children, but children should make their own decision," said Jill Stoller, a New Jersey pediatrician who is the mother of Jenna, the Cornell student.

Jenna had hours of counseling before doctors agreed that for her, testing was the right choice. However, Jennifer Scalia Wilbur, a counselor at Women and Infants Hospital in Providence, R.I., told of a 19-year-old who had testing without counseling and now wants to remove her breasts and not have children.

"It was extremely distressing" to talk with her now and try to correct her overly dire outlook, she said.

At a meeting of the oncology society in June, Bradbury reported on a survey she did of 163 adult BRCA gene carriers in the Chicago area. About half supported testing minors in some or all circumstances. A previous survey she led of 53 gene carriers and 22 of their offspring (ages 18 to 25) found about the same degree of support. Most sons and daughters favored testing minors.

Another of her studies, recently published in the American Journal of Medical Genetics, explored how sons and daughters ages 18 to 25 were affected by learning that a parent had tested positive.

Some effects were good — five of the seven smokers said they were motivated to quit.

Most said the knowledge had no big negative effect, but six of the 22 said they felt frightened or disturbed.

"I was shocked, scared. I wondered if I was going to get the gene and realized I could pass it to my (future) kids. I would feel like it was my fault if they got cancer," one daughter said in the survey.

Two sons said the knowledge might change their plans to have children. Five daughters and two sons had already gone for gene testing, and nearly all of the rest said they planned to be tested.

Wanting to test minors can be a knee-jerk response that changes after counseling. Tammy LeVasseur of North Attleboro, Mass., at first thought she wanted all three of her daughters to be tested after she learned of her own positive result in July.

She later decided to encourage testing for her two oldest daughters, ages 26 and 28, who had already finished having children, but not for Jessica, who just turned 17.

"I want to wait until I'm in my 20s," Jessica LeVasseur said. "They wouldn't do anything about it. There's no reason to worry now. I'd rather just be able to finish my teenage years without worrying about that."

___

On the Net:

National Cancer Institute: http://www.cancer.gov/cancertopics/factsheet/risk/brca

FORCE support group: http://www.facingourrisk.org/index.php

Copyright 2008 The Associated Press.