Category Archives: Child & Youth Health

Test could boost newborn cystic fibrosis screening

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Illustration of the lungs in blueBy Barbara Feder Ostrov
KHN

Stanford University scientists say they’ve devised a more accurate and comprehensive DNA test to screen newborns for cystic fibrosis, the most common fatal genetic disease in the United States.

Affecting about one in 3,900 babies born in the U.S., cystic fibrosis causes mucus to build up in the lungs, pancreas and other organs, leading to frequent lung infections and often requiring lifetime treatment for patients, whose median lifespan is 37 years.

Every state screens newborns for cystic fibrosis, but the current sequence of tests can miss cases, threatening babies’ lives.

The new method described in a recent article in The Journal of Molecular Diagnostics, promises to be more efficient and cost-effective, researchers said. It may also improve screening for non-white babies, for whom cystic fibrosis is rarer and harder to diagnose.

The new method promises to be more efficient and cost-effective and may also improve screening for non-white babies in whom cystic fibrosis harder to diagnose.

“I think this is a major advance. It offers the promise of potentially eliminating the false negative results that lead to missed cases,” said Dr. Philip Farrell, a former dean of the University of Wisconsin School of Medicine and Public Health, and a nationally-known expert on cystic fibrosis screening for newborns. “If you miss a case, you’ve got a baby out there who has a significant possibility of dying undiagnosed.”

Cystic fibrosis is caused by a defect in the CFTR gene, which regulates the movement of water and salt out of the body’s cells. In California, current genetic screens look for 40 of the most common mutations of the CFTR gene in newborns.

Yet any of the more than 2,000 known mutations in that gene could play a role in the disease, and there are likely others that have not yet been discovered.

The new test uses “next generation” DNA sequencing that can quickly and more cheaply look at the entire CFTR gene, not just selected mutations. It does not require an extra blood sample. Rather, it uses the tiny amount of blood drawn from the common newborn heel stick test that’s already used to screen for a number of diseases, including cystic fibrosis.

The researchers say this advance can enable testing labs to review many newborn samples at a time and reduce costs, allowing a technology previously used only to diagnose individual cases to be applied to a large population. Continue reading

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CDC warns of the danger of drinking while pregnant

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From the US Centers for Disease Control and Prevention

Alcohol and Pregnancy

Why Take the Risk?

An estimated 3.3 million US women between the ages of 15 and 44 years are at risk for exposing their developing baby to alcohol because they are drinking, sexually active, and not using birth control to prevent pregnancy, according to a new CDC Vital Signs report.

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The report also found that 3 in 4 women who want to get pregnant as soon as possible do not stop drinking alcohol.

  • Alcohol use during pregnancy, even within the first few weeks and before a woman knows she is pregnant, can cause lasting physical, behavioral, and intellectual disabilities that can last for a child’s lifetime. These disabilities are known as fetal alcohol spectrum disorders (FASDs). There is no known safe amount of alcohol – even beer or wine – that is safe for a woman to drink at any stage of pregnancy.
  • About half of all pregnancies in the US are unplanned and, even if planned, most women will not know they are pregnant until they are 4-6 weeks into the pregnancy when they still might be drinking.

Every woman who is pregnant or trying to get pregnant – and her partner – want a healthy baby. But they may not be aware that drinking alcohol at any stage of pregnancy can cause a range of disabilities for their child.

It is critical for healthcare providers to assess a woman’s drinking habits during routine medical visits; advise her not to drink at all if she is pregnant, trying to get pregnant, sexually active, and not using birth control; and recommend services if she needs help to stop drinking.

For this Vital Signs report, scientists from CDC’s National Center on Birth Defects and Developmental Disabilities analyzed data from the 2011–2013 National Survey of Family Growth, which gathers information on family life, marriage, divorce, pregnancy, infertility, use of birth control, and men’s and women’s health.

National estimates of alcohol-exposed pregnancy were calculated among 4,303 non-pregnant, non-sterile women aged 15–44 years.

A woman was considered to be at risk for an alcohol-exposed pregnancy if she was not sterile, her partner was not known to be sterile, and she had vaginal sex with a male, drank any alcohol, and did not use birth control in the past month.

Women can:

  • Talk with their healthcare provider about their plans for pregnancy, their alcohol use, and ways to prevent pregnancy if they are not planning to get pregnant.
  • Stop drinking alcohol if they are trying to get pregnant or could get pregnant.
  • Ask their partner, family, and friends to support their choice not to drink during pregnancy or while trying to get pregnant.
  • Ask their healthcare provider or another trusted individual about resources for help if they cannot stop drinking on their own.

Healthcare providers can:

  • Screen all adult patients for alcohol use at least yearly.
  • Advise women not to drink at all if there is any chance they could be pregnant.
  • Counsel, refer, and follow up with patients who need more help.
  • Use the correct billing codes so that alcohol screening and counseling is reimbursable.

FASDs are completely preventable if a woman does not drink alcohol during pregnancy.

Continue reading

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More than 1 in 20 US children have dizziness and balance problems

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From the National Institutes of Health

First large-scale, nationally representative survey finds issues slightly more common in girls, non-Hispanic white children.

spiralMore than 1 in 20 (nearly 3.3 million) children between the ages of 3 and 17 have a dizziness or balance problem, according to an analysis of the first large-scale, nationally representative survey of these problems in U.S. children.

Prevalence increases with age, with 7.5 percent of children ages 15-17 and 6.0 percent of children ages 12-14 having any dizziness or balance problem, compared with 3.6 percent of children ages 6-8 and 4.1 percent of children ages 3-5.

The research was led by investigators at the National Institute on Deafness and Other Communication Disorders (NIDCD), part of the National Institutes of Health.

Researchers found that girls have a higher prevalence of dizziness and balance problems compared to boys, 5.7 percent and 5.0 percent, respectively.

In addition, non-Hispanic white children have an increased prevalence of dizziness and balance problems (6.1 percent) compared with Hispanic (4.6 percent) and non-Hispanic black (4.3 percent) children. The findings were published online January 27 in The Journal of Pediatrics.

“These findings suggest that dizziness and balance problems are fairly common among children, and parents and providers should be aware of the impact these problems can have on our children,” said James F. Battey, Jr., M.D., Ph.D, director of the NIDCD and a pediatrician. “Parents who notice dizziness and balance problems in their children should consult a health care provider to rule out a serious underlying condition.” Continue reading

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E-cigarette ads reach nearly 7 in 10 middle and high-school students

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From the US Centers for Disease Control and Prevention

About 7 in 10 middle and high school students – more than 18 million young people – see e-cigarette advertising in stores, online, in newspapers and magazines, or on television and in movies, according to a new CDC Vital Signs report.

E-cigarette ads use many of the same themes – independence, rebellion, and sex – used to sell cigarettes and other conventional tobacco products.

Advertising of tobacco products has been shown to cause youth to start using those products.

The unrestricted marketing of e-cigarettes and dramatic increases in their use by youth could reverse decades of progress in preventing tobacco use among youth.

“The same advertising tactics the tobacco industry used years ago to get kids addicted to nicotine are now being used to entice a new generation of young people to use e-cigarettes,” said CDC Director Tom Frieden, M.D., M.P.H. “I hope all can agree that kids should not use e-cigarettes.” Continue reading

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Infertility treatments not associated with increased risk of developmental delay – study

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Infertility treatments do not appear to contribute to developmental delays in children

From the National Institutes of Health

IVF egg thumbNIH researchers find no risk by age 3 from in vitro fertilization, other widespread treatments.

Children conceived via infertility treatments are no more likely to have a developmental delay than children conceived without such treatments, according to a study by researchers at the National Institutes of Health, the New York State Department of Health and other institutions.

The findings, published online in JAMA Pediatrics, may help to allay longstanding concerns that conception after infertility treatment could affect the embryo at a sensitive stage and result in lifelong disability.

The authors found no differences in developmental assessment scores of more than 1,800 children born to women who became pregnant after receiving infertility treatment and those of more than 4,000 children born to women who did not undergo such treatment.

“When we began our study, there was little research on the potential effects of conception via fertility treatments on U.S. children,” said Edwina Yeung, Ph.D., an investigator in the Division of Intramural Population Health Research at NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). “Our results provide reassurance to the thousands of couples who have relied on these treatments to establish their families.” Continue reading

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A sick newborn, a loving family and a litany of wrenching choices

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By Jenny Gold
KHN

SAN FRANCISCO — Anne and Omar Shamiyeh first learned something was wrong with one of their twins during their 18-week ultrasound.

The technician was like, well there’s no visualization of his stomach,” said Anne. “And I was like, how does our baby have no stomach?”

It turned out that the baby’s esophagus was not connected to his stomach. He also had a heart defect. At the very least, he was likely to face surgeries and a long stay in intensive care. He might have lifelong disabilities.

This was only the start of an eight-month ordeal for the Shamiyeh family. Continue reading

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Many Schools Failing on Type 1 Diabetes Care – The New York Times

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school-busToo many schools are failing to provide the growing number of students who have Type 1 diabetes with the routine care they need, such as insulin shots or blood sugar monitoring, federal regulators and diabetes experts say. And often, parents do not know they have the legal right to insist on it.

Source: Many Schools Failing on Type 1 Diabetes Care – The New York Times

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How heroin is hitting the foster care system

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320px-HeroinBy Sophie Quinton
Stateline

Timothy Dick’s office receives all kinds of reports of child abuse and neglect. Perhaps a child has a broken bone, or is underfed, or has been left home alone for too long.

But when caseworkers drive to the child’s home to investigate, they often discover the same root cause. “What we’re finding more and more is that the parents are addicted to opiates. And more often than not, it’s heroin,” said Dick, assistant director of child protective services in Clermont County, Ohio.

In Ohio and other states ravaged by the latest drug epidemic, officials say substance abuse by parents is a major reason for the growing number of children in foster care. In Clermont County, east of Cincinnati, more than half the children placed in foster care this year have parents who are addicted to opiates, Dick said. Continue reading

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Parents in poor countries have worry about vaccines, too: If they can get them for their children

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Globe 125X125The Republican presidential debates have fueled another round of vaccine anxiety in the U.S. But in the world’s poorest countries, parents have a different set of concerns: They worry about getting their kids immunized quickly enough.

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Tylenol maker sought to block new safety regulations

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New Court Docs: Maker of Tylenol Had a Plan to Block Tougher Regulation

by Jeff Gerth and T. Christian Miller ProPublica, Sep. 21, 2015, 8 a.m.

Extra Strength Tylenol Caplets_0Recently filed court documents show the makers of Tylenol planned to enlist the White House and lawmakers to block the Food and Drug Administration from imposing tough new safety restrictions on acetaminophen, the iconic painkiller’s chief ingredient.

An executive with McNeil Consumer Healthcare 2013 which counts Tylenol as its flagship product 2013 told the board of directors for parent company Johnson and Johnson about a campaign to “influence the FDA” and block recommendations made by an agency advisory panel in 2009.

It may be time to let members of Congress to put some pressure on FDA . . .

About 150 Americans a year die by accidentally taking too much acetaminophen, the active ingredient in Tylenol. The toll does not have to be so high. Read the story.

After Dr. Janet Woodcock, the FDA’s top drug regulator, put off meeting with McNeil executives, the company’s president, Peter Luther, sent out an August 2009 email.

“We’re being too nice and too worried about stepping on FDA’s toes. It may be time to let members of Congress to put some pressure on FDA,” Luther wrote to other top executives. “We have to make this our top priority and pull out all stops.” Continue reading

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Seattle Children’s ethics conference now online (video)

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The videos from Seattle Children’s Treuman Katz Center for Pediatric Bioethics 2015 Conference, The Delicate Triangle: Responsibilities and Challenges in the Provider-Patient-Parent Relationship, are now available on the Seattle Children’s website,

Here’s the opening talk, entitled “Must We Always Tell Children the Truth?”, by John Lantos, MD,, director of the Children’s Mercy Hospital Bioethics Center in Kansas City.

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