pediatrics

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Tackling Autism In Babies? Small Study An ‘Absolute Miracle,’ Says Mom

Megan says the experimental trial she participated in with her daughter Isabel was "an absolute miracle," transforming the child from a troubled baby who looked headed for autism to a typical, happy preschooler.

Megan says the experimental trial she participated in with her daughter Isabel was “an absolute miracle,” transforming the child from a troubled baby who looked headed for autism to a typical, happy preschooler.

Research out this week suggests that it’s never too early to begin therapy to treat some of the defining symptoms of autism. Karen Weintraub reports on the promising new findings in USA Today under the headline, “Study: Autism Signs In Babies Can Be Erased.”

Karen expands on her report here:

In a small pilot study — the first to look at starting therapy in babies this young — researchers at the University of California Davis’ MIND Institute, began treating 7 babies who showed symptoms likely to turn into autism later. By their third birthdays, five of the children no longer exhibited any symptoms of autism, and a sixth was diagnosed with mild autism.

Because the study was so small, and autism cannot reliably be diagnosed in infancy, the researchers stopped short of calling the treatment a breakthrough. But they said they will be following up with a larger study, which they hoped would confirm the results.

One mother involved in the trial described the treatment as “an absolute miracle” for her daughter, Isabel. The mother, Megan, asked not to be fully identified, but talked openly about the trial and its benefits for her family.

At nine months old, Isabel wouldn’t turn her head when someone walked into a room calling her name. She never babbled, Megan said. She was physically delayed in fine and gross motor skills, and didn’t seem to know how to play with toys. All those are signs commonly seen in children who go on to be diagnosed with autism.

Megan heard about the trial through her pediatrician and the family – including Isabel’s dad and her older brother – moved from the Seattle area to Sacramento, so they could participate in the study.

In 12 weekly sessions, lead researcher Sally Rogers coached Megan and her husband John as they played with baby Isabel. Where most children will smile or giggle when happy, Isabel’s facial expressions didn’t change much; where others might cry if scared by a loud sound, Isabel rarely reacted to anything in her environment. But Rogers showed them that Isabel might glance over quickly when she was interested or look at her hands when something was too loud or overwhelming – cues that Megan and John could take to do more or less of whatever they were doing.

Once they learned to “speak” Isabel’s language, Megan said she and John were able to react to her and engage with their baby for the first time. Eventually, through this interaction, Isabel learned that she could communicate – and have fun doing it. That primed her to learn even more, Megan said.

Megan said she and her husband would never have figured out what to do without the coaching. Continue reading

When One Twin Baby Lives But The Other Dies

(stitches1975 via compfight)

(stitches1975 via compfight)

By Dr. Karen O’Brien
Guest contributor

Never before in my obstetric practice have I taken care of so many twin pregnancies. What I witness in my own office is part of a nationwide trend: Over the last two decades, the twin birth rate in the United States rose 76 percent, from 19 to 33 per 1,000 births.

And never before have I taken care of so many twin pregnancies with complications.

The specific complication that has given me pause in the last year or two is the loss of one twin, either during or after pregnancy.

This doesn’t happen often, but I have taken care of a number of patients recently who have lost a twin during or shortly after pregnancy. And I’ve learned that though outsiders might see a glass half full, this experience is uniquely devastating, both emotionally and medically.

We must all understand that the life of one twin does not eradicate grief for the sibling who died.

The hope and anticipation of bringing home two healthy babies comes grinding to a halt. The joy of delivery is clouded by sibling loss.

As early as 18 weeks, Melissa’s identical twins showed signs of a complication called twin-to-twin transfusion syndrome, which occurs when one of the twins essentially donates blood to the other.

At 19 weeks, Melissa underwent surgery to try to correct the problem. Unfortunately, two days after the surgery, one of the twins passed away. Melissa remained pregnant for 13 more weeks and ultimately underwent cesarean section at 32 weeks.

She and her husband were able to hold the deceased twin for several hours after delivery. Her live twin did well; she spent a few weeks in the neonatal intensive care unit (NICU) and is now home and thriving.

Samantha’s twins were not identical, and were conceived through in vitro fertilization. At 14 weeks, we found that one of the twins, a boy, had several serious abnormalities. Even at that early gestational age, we knew that he would not live for long after birth, and might pass away during the pregnancy. The other twin, a girl, appeared normal throughout the pregnancy. Continue reading

Pediatricians: Middle And High School Should Start No Earlier Than 8:30 AM

(eltpics/Flickr via Compfight)

(eltpics/Flickr via Compfight)

It’s one of the great joys of early parenthood: Finally being able to sleep until a reasonable hour — say, 6 a.m. Then, before you know it, you’re facing the opposite problem: Homeroom is just half an hour away, and your tween or teen remains an immovable lump beneath the covers.

As any parent who’s observed it would suspect, this is deep biology at work. Today, the American Academy of Pediatrics issues both an up-to-date explanation of research on adolescent sleep and a ringing call to the country’s schools to heed it and begin school later for “pathologically sleepy” older students. Sleep deprivation in youth is a common — “and easily fixable” — public health issue, the academy says in a policy statement.

From the press release, whose headline begins “Let Them Sleep:”

“The research is clear that adolescents who get enough sleep have a reduced risk of being overweight or suffering depression, are less likely to be involved in automobile accidents, and have better grades, higher standardized test scores and an overall better quality of life,” [statement lead author Dr. Judith] Owens said. “Studies have shown that delaying early school start times is one key factor that can help adolescents get the sleep they need to grow and learn.”

Many studies have documented that the average adolescent in the U.S. is chronically sleep-deprived and pathologically sleepy. A National Sleep Foundation poll found 59 percent of 6th through 8th graders and 87 percent of high school students in the U.S. were getting less than the recommended 8.5 to 9.5 hours of sleep on school nights.

This medical stance on sleep deprivation is not new; the research has been accumulating for many years. But the academy reports that about 40 percent of American high schools still start before 8 a.m., and only 15 percent launch the school-day at or after 8:30. Among middle schools, it says, more than one-fifth begin at 7:45 or earlier.

If schools are not shifting later as fast as pediatricians might like, that could be because, like virtually everything in education, it’s not as simple as it might seem.

‘Life is going on right now in hyperspeed for most of our young people.’

“Once you go deeper into the lives of kids today, things become more complex,” says Dr. Bob Weintraub, who was the headmaster of Brookline High School from 1992 to 2011 and is now a professor of educational leadership at Boston University. Based on the research, Brookline High shifted start times for most students to 8:30 during his tenure, he said, but such shifts do raise issues.

“One of the practical problems has always been for high school athletics and school activities,” he said; if school ends later, sports and other activities must start later, and outdoor sports are hindered when darkness descends. Continue reading

Even In Mass., Hundreds Of Young Central American Refugees Seek Care

"Flor" (Richard Knox for WBUR)

“Flor” (Richard Knox for WBUR)

By Richard Knox

CHELSEA, Mass. — The young Honduran woman appeared at the Chelsea HealthCare Center last February, fearing she was pregnant.

“Flor” — a pseudonym to protect family members back in Honduras — had paid a “coyote” $8,000 to escort her and her 3-year-old daughter to the U.S.-Mexican border. But when they got to the border town of Nuevo Laredo, the coyote sold her to a gang that held her in a tiny room with seven other women.

They raped her, then told her to pay $17,000 or they’d sell her daughter’s organs and force her into sex slavery.

Up in Massachusetts, her mother and father scrambled to borrow the money and wire it to Nuevo Laredo. Her kidnappers released Flor and the little girl; she doesn’t know what happened to the other women.

Flor and her daughter are among hundreds of Central American immigrants who’ve made their way to the blue-collar town of Chelsea, Mass., over the past year.

They represent a quiet influx that began months before the phenomenon hit the headlines and protests began flaring in communities from Cape Cod to California.

They come to Chelsea because many of them have family there. Sixty-two percent of the town’s 35,000 residents are Latino, and many are from Honduras, El Salvador and Guatemala.

As we sit in a conference room at the Chelsea health center, the sun backlights the thick dark hair that frames Flor’s broad face as she tells me how and why she made the 2,300-mile trek from the Honduran capital of Tegucigalpa.

“The decision I made, why I came here, was to give a better future to my daughter,” Flor says in Spanish, silent tears trickling down her cheeks. “In Honduras, it is very difficult. The gangs, they’re killing a lot of people. You have to give money month-to-month or they go to your house and they kill you.” Continue reading

Leading Pediatrician: Sick Time Is Health Issue; Will Doctors Step Up?

(Mary MacTavish/Compfight)

(Mary MacTavish/Compfight)

Call me Sherlock Holmes, but when a ballot measure has “sick” in its title, I get a sneaking suspicion that it may involve an issue of health.

As in Question 4 on the Massachusetts ballots this November, which the secretary of state titles “Earned Sick Time For Employees” and summarizes as a proposed law that “would entitle employees in Massachusetts to earn and use sick time according to certain conditions.”

It would guarantee up to 40 hours of paid sick time if you work for a large employer and up to 40 hours unpaid if you work for a small employer. (More details here.)

This referendum — and measures like it in other states and at the federal level — tend to be portrayed as labor issues, pitting employers against employees. But Dr. Mark Schuster, Chief of General Pediatrics at Boston Children’s Hospital and Professor of Pediatrics at Harvard Medical School, argues that sick days are a health issue — and no one knows that better than doctors.

In the New England Journal of Medicine, he and Dr. Paul Chung of UCLA discuss the risks inherent in an economy where about 40 percent of employees get no paid sick leave, and many cannot even take unpaid sick days without risking their jobs.

They begin with the big-picture public health problem of the 2009 H1N1 flu pandemic, when health authorities were begging sick people to stay home and some workers were responding that they simply couldn’t.

And then there are the human difficulties that play out every day:

Consider a mother who knows both how to assess her son’s asthma symptoms and when he needs to see a clinician. If his medicine doesn’t seem to be working on a weekend or at night, they go straight to the clinic, he receives treatment, and they avoid a hospital admission. But when the boy has an asthma attack on a weekday morning, his mother sends him to school, fearing that missing work will mean losing her job. Three times in 18 months, when she waits until after work to bring him to the clinic, his asthma worsens, and he ends up hospitalized. Each time, what should have been three hours in the clinic becomes three days in the hospital.

Or consider a young girl with a fever and flulike symptoms who is given Tylenol and sent to school by her father because he can’t miss work. Two days later, the girl develops the rash characteristic of fifth disease on her cheeks. Her whole class has been exposed, and because the teacher is pregnant, her fetus is at risk.

About half of American workers get no paid sick days that they can use to care for family members, they note. And they end with a call to action directed at other health care professionals: “At the intersection between health and work, the health care community needs to provide a voice for patients and their families.”

Will it, though? Continue reading

Height, Hormones And Your Child’s Mental Health

I’m short — a hair over five feet tall. And my daughters, likely, will be too.

So, at some point in parenting, I briefly entertained the prospect of growth hormones. You might have too, thinking (with Randy Newman in the background) that maybe your petite child might be just a tad better off in life with a couple of extra inches.

And then, if you’re like me, you never acted on this thought: you kept your interventionist parenting ideas to yourself and simply told your daughters how smart, strong and beautiful they are.

(David Wheeler/flickr)

(David Wheeler/flickr)

A small, but compelling, report backs up this self-censorship. Research presented at the annual meeting of the Endocrine Society, by Dr. Emily C Walvoord of the University of Indiana School of Medicine, found that otherwise healthy children treated with growth hormones may have gained those extra inches, but they paid an emotional and psychological price. The tradeoff, researchers concluded, might not be worth it.

From the abstract:

“…children treated with GH [growth hormones] had worsening emotional symptoms over time when compared to children of the same age and height who were not treated with GH. Medical intervention with daily injections, frequent clinic visits and repeated discussions about height might exacerbate instead of improve psychosocial concerns for short, otherwise healthy children. This novel longitudinal study of both the cognitive and emotional effects of GH therapy in…children raises concerns that psychosocial benefits may not be achieved despite improvements in height.”

Obviously, this type of study is not definitive, and sometimes there’s a medical necessity for such intervention. But I found its basic “Whoa” approach to drugs for kids even more interesting given the principal investigator has financial ties to drug giant Eli Lilly.

Readers, parents, have you grappled with the growth hormone question? How did you weigh the pros/cons? Please tell us your story.

Work-Family Crunch: Parents Resort To ER To Get Kids Back Into Daycare

(Bob Reck via Compfight)

(Bob Reck via Compfight)

Some of the tension between work and family is inevitable. If your child comes down with the flu on the very day you’re supposed to give a major presentation, there’s just no way you can be everywhere you’re needed at the same time.

But a study just out in the journal Pediatrics shows that the discrepancy between the sick-child policies at many daycare centers and accepted medical wisdom could often make the work-family crunch harder than it has to be. (Meanwhile, a day-long White House “summit” today is looking at ways to ease that crunch for American parents, from promoting more flexible work schedules to paid maternity leaves.)

From the study’s press release:

Substantial proportions of parents chose urgent care or emergency department visits when their sick children were excluded from attending child care, according to a new study by University of Michigan researchers.

The study, to be published June 23 in Pediatrics, also found that use of the emergency department or urgent care was significantly higher among parents who are single or divorced, African American, have job concerns or needed a doctor’s note for the child to return.

Previous studies have shown children in child care are frequently ill with mild illness and are unnecessarily excluded from child care at high rates, says Andrew N. Hashikawa, M.D., M.S., an emergency physician at  C.S. Mott Children’s Hospital. This is the first national study to examine the impact of illness for children in child care on parents’ need for urgent medical evaluations, says Hashikawa.

In the study, 80 percent of parents took their children to a primary care provider when their sick children were unable to attend child care. Twenty-six percent of parents also said they had used urgent care and 25 percent had taken their children to an emergency room.

“These parents may view the situation as a socioeconomic emergency,” Dr. Hashikawa says.

He got interested in this topic, he told me, when he was a med student working in an ER, and one night, a family brought in children who looked fine, they just had a little bit of red in their eyes. “And it was midnight, and I asked them, ‘Why are you here?’ I was just so curious. And they said ‘Well, I’ve got to work, I’m not going to get paid, and I really need a doctor’s note for both my work and for my daycare so I can send them back.’”

A bit more of our conversation, lightly edited:

How much does daycare keep kids out unnecessarily?

There are different ways to look at it…A Maryland study showed that for every one appropriate exclusion (from daycare) approximately five or six were inappropriate exclusions. I did a study from a daycare provider standpoint: If we gave you a hypothetical scenario, how many of these kids would you send home that probably didn’t need to be excluded? It seemed that 57% of kids would be unnecessarily excluded at that point.

The American Academy of Pediatrics has guidelines on when children should actually be kept home, right? Continue reading

‘I’m Not Stupid, Just Dyslexic’ — And How Brain Science Can Help

Sixth-grader Josh Thibeau has been struggling to read for as long as he can remember. He has yet to complete a single Harry Potter book, his personal goal.

Growing up with dyslexia: Josh Thibeau, 12, imagines his brain as an ever-changing maze with turns he must learn to navigate. Here he is with his mother, Janet. (George Hicks/WBUR)

Growing up with dyslexia: Josh Thibeau, 12, thinks of his brain as an ever-changing maze with turns he must learn to navigate. Here he is with his mom, Janet. (George Hicks/WBUR)

When he was in first grade, Josh’s parents enrolled him in a research study at Boston Children’s Hospital investigating the genetics of dyslexia. Since then, Josh has completed regular MRI scans of his brain. Initially, it seemed daunting.

“When we first started, I’m like, ‘Oh no, you’re sending me to like some strange, like, science lab where I’m going to be injected with needles and it’s going to hurt,’ I’m like, ‘I’m never going to see my family again,’ ” says Josh, who lives in West Newbury, Mass.

Josh and his three biological siblings all have dyslexia to varying degrees. Pretty much every day he confronts the reality that his brain works differently than his peers’. He’s even shared scans of his brain with classmates to try to show those differences. Some kids still don’t get it.

“There was a student that said, ‘Are you stupid?’ Because my brain was working in a different way,” Josh says. “And I’m just like, ‘No, I am not stupid…I’m just dyslexic.’ ”

The Pre-Reading Brain 

On average, one or two kids in every U.S. classroom has dyslexia, a brain-based learning disability that often runs in families and makes reading difficult, sometimes painfully so.

Compared to other neurodevelopmental disorders like ADHD or autism, research into dyslexia has advanced further, experts say. That’s partly because dyslexia presents itself around a specific behavior: reading — which, as they say, is fundamental.

Now, new research shows it’s possible to pick up some of the signs of dyslexia in the brain even before kids learn to read. And this earlier identification may start to substantially influence how parents, educators and clinicians tackle the disorder.

Until recently (and sometimes even today) kids who struggled to read were thought to lack motivation or smarts. Now it’s clear that’s not true: Dyslexia stems from physiological differences in the brain circuitry. Those differences can make it harder, and less efficient, for children to process the tiny components of language, called phonemes.

And it’s much more complicated than just flipping your “b’s and “d’s.” To read, children need to learn to map the sounds of spoken language — the “KUH”, the “AH”, the “TUH” — to their corresponding letters. And then they must grasp how those letter symbols, the “C” “A” and “T”, create words with meaning. Kids with dyslexia have far more trouble mastering these steps automatically.

For these children, the path toward reading is often marked by struggle, anxiety and feelings of inadequacy. In general, a diagnosis of dyslexia usually means that a child has experienced multiple failures at school.

But collaborations currently underway between neuroscientists at MIT and Children’s Hospital may mark a fundamental shift in addressing dyslexia, and might someday eliminate the anguish of repeated failure. In preliminary findings, researchers report that brain measures taken in kindergartners — even before the kids can read — can “significantly” improve predictions of how well, or poorly, the children can master reading later on.

Implicated in dyslexia: The arcuate fasciculus is an arch-shaped bundle of fibers that connects the frontal language areas of the brain to the areas in the temporal lobe that are important for language (left). Researchers found that kindergarten children with strong pre-reading scores have a bigger, more robust and well-organized arcuate fasciculus (bottom right) while children with very low scores have a small and not particularly well-organized arcuate fasciculus (top right). (Zeynep Saygin/MIT)

Implicated in dyslexia: The arcuate fasciculus is an arch-shaped bundle of fibers that connects the frontal language areas of the brain to the areas in the temporal lobe that are important for language (left). Researchers found that kindergarten children with strong pre-reading scores have a bigger, more robust and well-organized arcuate fasciculus (bottom right) while children with very low scores have a small and not particularly well-organized arcuate fasciculus (top right). (Zeynep Saygin/MIT)

Pinpointing The White Matter Culprit

Using cutting-edge MRI technology, the researchers are able to pinpoint a specific neural pathway, a white matter tract in the brain’s left hemisphere that appears to be related to dyslexia: It’s called the arcuate fasciculus.

“Maybe the most surprising aspect of the research so far is how clear a signal we see in the brains of children who are likely to go on to be poor readers.”
– MIT neuroscientist John Gabrieli

“It’s an arch-shaped bundle of fibers that connects the frontal language areas of the brain to the areas in the temporal lobe that are important for language,” Elizabeth Norton, a neuroscientist at MIT’s McGovern Institute of Brain Research, explains.

In her lab, Norton shows me brain images from the NIH-funded kindergartner study, called READ (for Researching Early Attributes of Dyslexia).

“We see that in children who in kindergarten already have strong pre-reading scores, their arcuate fasciculus is both bigger and more well organized,” she says. On the other hand: “A child with a score of zero has a very small and not particularly organized arcuate fasciculus.”

She says we’re not quite ready to simply take a picture of your child’s brain and say “Aha, this kid is going to have dyslexia,” but we’re getting closer to that point. Continue reading

A Bittersweet Graduation For Patients At The Mass. Hospital School

Brian Devin, CEO of The Massachusetts Hospital School, speaks with student Miguel M. in the cafeteria after lunch. (Jesse Costa/WBUR)

Brian Devin, CEO of The Massachusetts Hospital School, speaks with student Miguel M. in the cafeteria after lunch. (Jesse Costa/WBUR)

By Gabrielle Emanuel

CANTON, Mass. — It’s lunch break and there’s a wheelchair traffic jam in the school hallway.

Friendly shouts of “Beep! Beep!” and “You’re blocking traffic” interrupt chatter about one kid’s new backpack and another guy’s birthday plans.

It’s a typical school scene, except a bunch of the kids are using computers to talk and others breathe through ventilators.

Like students across the country, many of these kids are getting ready for graduation. It’s a bittersweet time for graduates of all stripes, but perhaps nowhere is it more bittersweet than here.

All of the 91 students in these hallways are also patients. When they graduate – as about a dozen will this year – they’re not only leaving their friends and teachers, they’re leaving the hospital they’ve called home for years, and in some cases, a decade or more.

The campus’ main entrance is on a rural road in Canton, where a flashing sign reads: The Massachusetts Hospital School.

Brian Devin, the CEO, says that when cars zip past drivers often “think it’s a school where they teach people to work in hospitals.”

Devin says it’s a fair assumption, but completely wrong. This facility is part pediatric hospital, part elementary and secondary school. It serves children with severe disabilities — muscular dystrophy, cerebral palsy, brain injuries — and is run jointly by the state Department of Public Health and the Department of Education.

Children as young as 6 or 7 can be admitted to the hospital and they often stay at this lakefront campus until the kid’s clock strikes 22 years old, when it’s time to graduate and it’s time to go, regardless of whether there is another alternative place to go.

A Non-Institutional Hospital

As the hallway traffic starts moving, the students wheel themselves out into the brisk spring air. They race down covered ramps toward horseback riding lessons, speech therapy sessions and wheelchair hockey practice.

Those white ramps create a web that connects all the brick buildings on this idyllic, 160-acre facility.

“The kids are all over the place. They are not always with staff — we don’t want them to always be with staff,” Devin says. “We want them to be with themselves and with other kids as much as possible. There is no real institutional flavor.”

The Massachusetts Hospital School’s ultimate goal is to cultivate as much independence as possible for these children. Continue reading

Tracking The Rising Backlash Against Sugar

Years ago, on my daughter’s first birthday, my mother-law, an avid cook, baked her a cake. I don’t remember if it was chocolate or layered. What I do remember is forbidding my baby from eating it — not even a nibble. Why, I thought, would I introduce processed sugar into a one-year-old’s diet when she’d been perfectly content with avocados and bananas? “Don’t you want to see pure joy on her face?” asked one friend. Yeah, sure, but not from frosting.

Needless to say, the birthday cake prohibition triggered a bit of a backlash among some family members, and earned me labels like “rigid” and “crazy.”

But these days, with the huge national backlash against sugar — from the new film “Fed Up” and Eve Schaub’s popular family memoir, “Year Of No Sugar,” to Mark Bittman’s regular columns hammering on the message of sugar’s toxicity — I feel somewhat vindicated.

Here’s a snippet from Bittman’s latest, “An Inconvenient Truth About Our Food” on why “Fed Up” is such an important film:

The experts carry the ball. The journalist Gary Taubes calls the “energy balance” theory — the notion that all calories are the same, and that as long as you exercise enough, you’ll avoid gaining or even lose weight no matter what you eat — “nonsense.” One Coke, we learn, will take more than an hour to burn off. The pediatrician Rob Lustig, a leading anti-sugar campaigner, notes that “we have obese 6-month-olds. You wanna tell me that they’re supposed to diet and exercise?” David Ludwig, another M.D., notes that there is no difference between many processed foods and sugar itself, saying you can eat a bowl of cornflakes with no added sugar or a bowl of sugar with no added cornflakes and “below the neck they’re the same thing.” Lustig reminds us that anyone can develop metabolic syndrome: “You can be sick without being fat; this is not just a problem of the obese.”

And so on. Senator Tom Harkin says, “I don’t know how they (the food industry) live with themselves,” comparing them to the tobacco industry. Bill Clinton says, effectively, “We blew it,” when it came to this struggle.

The movie has some splendid moments: A mother cries at the difficulty of the choice she must make between giving her child what she wants and giving her what’s best. Her struggle is common, and she’s fighting against an almost overwhelming tide of marketing and, yes, even addiction. A school lunch worker, speaking of the fact that few kids choose the healthy option at lunch, says, “You can’t choose for them.” But they are children; we must choose for them. Not only are their parents not present, but their parents often don’t know what’s best.

Just to be clear, this isn’t simply rationalizing my own personal food obsessions (though there’s some of that) or about our cultural sickness around achieving “thigh gap” thinness. It’s about overall health — for instance, heart disease. Continue reading