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Chronic Disease, Palliative Care, Parenting, Pediatrics

Missing out on “normal”: Advice from an expert on how to help kids with serious illnesses

Missing out on "normal": Advice from an expert on how to help kids with serious illnesses

Erica Medina and mom Jan 2012 #2When I first met Erica Medina in 2012, she was already practiced at living in two worlds. Then 17, she loved the ordinary teenage realm of high school classes, basketball and volleyball games, and trips to the mall with her friends. But since her diagnosis with juvenile idiopathic arthritis at age 11, she had also spent a lot of time in the medical world, where she and her doctors struggled to manage the pain caused by a disease that has no cure.

The story I wrote about Erica explained how the two worlds sometimes collided:

Back pain made it taxing to sit through school lectures, go on field trips or walk through the mall with friends. It wasn’t just the pain that bothered her: “When I was younger I hated taking my meds,” Erica said, adding that it felt like “giving up” to take pain medicine.

Stephanie [Erica’s mom] was glad Erica’s doctors tackled this issue head-on. “They convinced her that treating pain has nothing to do with weakness,” she said.

Although juvenile idiopathic arthritis is fairly rare, Erica’s longing for normalcy is not. Children and teenagers with all kinds of chronic and serious conditions have the same desire, says pediatric psychologist Barbara Sourkes, PhD, who directs the palliative care program at Lucile Packard Children’s Hospital Stanford.

A big part of Sourkes’ role is to help children, teenagers and their families navigate the divide between living with a difficult diagnosis and simply being a kid. She’s summarized her insights about this in a thoughtful piece on the blog for Digging Deep, a publication designed to help kids facing health challenges. Young people like Erica “commute” between the normal and medical worlds, “an extraordinary challenge,” Sourkes says. From her piece, here is some of her advice for families and others on how to help:

Be aware and sensitive to the importance of feeling “normal” – as normal as possible – for all children and adolescents living with illness. While we typically focus more on adolescents’ desire to “fit in,” even very young children are sensitive to being “different.” Help them focus on and remember what aspects of their lives – and of themselves – are still the same despite the illness.

“Missing out on things” comes in two categories: (1) missing a specific, often special event or activity (e.g. a celebration, a trip) and (2) missing out on life in general (day-to-day daily life, in all its routine).

Adults tend to focus more on the first category, in part because these are events that stand out from the backdrop of daily life. Allow the child to express disappointment / anger / sadness at the prospect of missing the event – do not try to minimize these feelings. After the event, it is very important to let children know that people asked about them and that their presence was missed. It makes the “missing out on things” a little more shared and less one-sided. When realistically possible, promise the child that they will participate in a similar event at a future time.

The second category of “missing out on life in general” is more ongoing and subtle, and probably has more impact on adolescents than on young children. It is also harder to address, since it encompasses all the frustration and sadness of the impact of the illness. Most important is simply to listen to what the children say, without trying to distract them or “problem solve” or cheer them up. These are times that they may just want to be heard and to have their hardship acknowledged.

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Neuroscience, Pediatrics, Research

Tutoring changes the brain in kids with math learning disabilities

Tutoring changes the brain in kids with math learning disabilities

One-on-one tutoringA new Stanford study, publishing today in Nature Communications, sheds light on how to help children with math learning disabilities. One-on-one cognitive tutoring improves math performance in these children and also normalizes brain activity in several regions important for numerical problem solving, the research found.

The findings are important because math learning disabilities often fall off educators’ and parents’ radar. (Everyone has heard of dyslexia, but its numerical equivalent, dyscalculia? Not so much.) Yet math learning disabilities can hamper a child’s ability to gain basic life skills such as managing time and money, and can prevent children from growing up to pursue math- and science-related careers.

The new study is similar to another recent experiment that demonstrated alleviation of math anxiety with tutoring. Both studies are the work of the Stanford MathBrain Project, directed by Vinod Menon, PhD. Teresa Iuculano, PhD, a postdoctoral scholar working with Menon, is the new study’s lead author.

In the new research, 30 children in third grade received eight weeks of one-on-one tutoring in basic arithmetic skills; half of the kids had math learning disabilities and half did not. The instructors adjusted the sessions’ pace and emphasis individually for each child, helping students past bottlenecks in their learning without making them feel like they might be falling behind their peers. All of the children got MRI brain scans before and after tutoring.

Before tutoring began, the kids with math learning disabilities had abnormal function in a network of brain areas involved in solving numerical problems, including the parietal, prefrontal and ventral temporal-occipital areas. Kids without math learning disabilities did not show these problems. After tutoring, the differences between the two groups’ brain scans disappeared. The children’s math performance also improved, in sync with the brain changes.

These findings suggest that tutoring actually fixes the brain issues at the root of math learning disabilities, rather than providing children with a work-around that circumvents the real problem.

“We demonstrate that, in parallel with performance normalization, 1:1 tutoring elicits extensive functional brain changes in children with math learning disabilities, normalizing their brain activity to the level of neurotypical peers,” the researchers wrote in their paper.

The scientists want to conduct follow-up studies to find out how long the effects of tutoring last. Their new discoveries also lay a framework for studying how to intervene in other forms of learning disabilities.

Previously: Stanford team shows that one-on-one tutoring relieves math anxiety in children, Stanford team uses brain scans to forecast development of kids’ math skills and New research tracks “math anxiety” in the brain
Photo by U.S. Department of Education

Clinical Trials, Mental Health, Parenting, Pediatrics, Research, Stanford News

Parents can help their teens recover from bulimia, say Stanford researchers

Parents can help their teens recover from bulimia, say Stanford researchers

Mom&teenTeenagers with bulimia nervosa benefit from their parents’ help in stopping their eating disorder. In fact, a therapy that involves parents works better for teens than one that does not, according to the first large head-to-head comparison in adolescents of two well-known bulimia treatments.

The findings are described in a study of 130 young people with bulimia that was published last week in the Journal of the American Academy of Child and Adolescent Psychiatry.

The research, which was jointly led by Stanford’s James Lock, MD, PhD, and a longtime collaborator, Daniel Le Grange, PhD, compared an approach tailored to teens with one commonly used in adults. In family-based therapy, the bulimia patient and a parent work together to stop the disordered eating behavior. In contrast, in cognitive behavioral therapy, which is widely recognized as the best approach for bulimic adults, there is more focus on changing abnormal thoughts about food and less emphasis on behavior change.

At the end of six months of treatment, 39 percent of patients in family-based therapy had abstained from the binge-and-purge cycle of bulimia for at least four weeks. Only 20 percent of those in the cognitive behavioral therapy group had done the same. The gap persisted six months after treatment ended, though it seemed to have closed by a year after the end of treatment.

Lock, who directs the Comprehensive Eating Disorders Program at Lucile Packard Children’s Hospital Stanford, said the findings are not surprising, given that teens are at a different stage of the illness and have different cognitive capabilities than adults with bulimia. But they are very important, since they suggest that the family-based approach is a faster way for young patients to recover from bulimia. From our press release about the study:

“The strategy for cognitive behavioral therapy requires a fair amount of abstract reasoning, motivation and persistence that often has not reached full capacity in teens,” [Lock] said, adding that doctors may need to decide on a case-by-case basis whether a teen would benefit from one treatment versus the other. “The cognitive and developmental context is very different for teens than for adult patients,” he said.

And it’s normal for teenagers to need their parents’ assistance in navigating difficult situations, he added. “The big take-home message is that families can really help their kids with bulimia nervosa.”

Previously: Family therapy an effective way to treat anorexic teens, Incorporating the family to help teens overcome eating disorders and Families can help their teens recover from anorexia, new study shows
Photo by J.K. Califf

Global Health, Health Disparities, Pediatrics, Stanford News, Technology

Sunshine solves a life-threatening newborn health problem — with a little help from Stanford experts

Sunshine solves a life-threatening newborn health problem — with a little help from Stanford experts

jaundice-greenhouseWhen pediatrician Tina Slusher, MD, began caring for newborns in Nigeria in 1989, she saw two big threats to the babies’ health: severe jaundice and tetanus.

“I thought, ‘Tetanus will go away with immunization, but nobody really seems to understand this jaundice problem,'” Slusher, a global pediatrics expert at the University of Minnesota, told me recently. In developing countries, well over 150,000 babies a year currently die or suffer severe brain damage from jaundice. “They still aren’t getting treated,” Slusher says.

But now, thanks to Slusher and her colleagues, that is set to change. She is the lead author on a scientific paper in the New England Journal of Medicine that evaluated a low-tech, inexpensive method for treating jaundice with filtered sunlight. The technology was conceived and built at Stanford, by a team led by neonatal jaundice expert David Stevenson, MD.

Newborn jaundice is caused by a delay after birth in development of the baby’s ability to metabolize compounds released in the breakdown of red blood cells. In the U.S. and other developed countries, most cases are treated with phototherapy. But putting a baby under a blue-light-emitting lamp isn’t feasible in places that lack steady electricity. The team members, who also included doctors and researchers at the Massey Street Children’s Hospital in Lagos, Nigeria, wondered if they could safely use filtered sunshine instead.

From our press release about the new study:

Some mothers and babies sat under outdoor canopies that filtered out harmful wavelengths from sunlight, but still allowed jaundice-treating blue wavelengths to reach the babies’ skin. The filtered-sunlight treatment was as safe and effective as the blue-light lamps traditionally used to treat infant jaundice.

“This research has the potential for global impact,” said the study’s senior author, David Stevenson, MD, the Harold K. Faber Professor in Pediatrics and senior associate dean for maternal and child health at Stanford. “All babies can get jaundice. In settings with no access to modern devices, we’ve shown we can use something that’s available all around the planet — sunlight — to treat this dangerous condition.” Stevenson also directs the Johnson Center for Pregnancy and Newborn Services at Lucile Packard Children’s Hospital Stanford.

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Neuroscience, Pediatrics, Research, Stanford News

Stanford team shows that one-on-one tutoring relieves math anxiety in children

Stanford team shows that one-on-one tutoring relieves math anxiety in children

Math-worksheetKids who suffer from anxiety about doing math problems can find relief in a program of one-on-one tutoring, which not only improves their math skills but also fixes abnormal responses in the fear circuits in their brains.

That’s the finding from a new study published today in the Journal of Neuroscience. The study is great news for those seeking relief from a common but often-overlooked problem.

From our press release about the research:

“The most exciting aspect of our findings is that cognitive tutoring not only improves performance, but is also anxiety-reducing,” said the study’s senior author, Vinod Menon, PhD, professor of psychiatry and behavioral sciences. “It was surprising that we could, in fact, get remediation of math anxiety.”

Even if they are good at math, many children feel anxious about doing math problems. For some, the anxiety persists throughout life, discouraging them from pursuing advanced math and science classes as well as careers that rely on mathematical expertise. Yet almost no attention has been paid to how to help alleviate this problem.

“Math anxiety has been under the radar,” said the study’s lead author, research associate Kaustubh Supekar, PhD. “People think it will just go away, but for many children and adults, it doesn’t.”

The researchers tested the idea that math anxiety could be helped with the same tactics used for phobias, which can be relieved by exposure therapy. In this approach, the person suffering the phobia is repeatedly exposed to the thing they fear, but in the context of a safe environment. The eight-week tutoring program, which covered a series of basic addition lessons, gave kids an opportunity to repeatedly tackle math concepts with the help of someone who could give positive, appropriate guidance to get past any bottlenecks in their understanding.

The team plans to conduct future research to find out what elements of the tutoring were most important in alleviating kids’ fear of math.

Previously: New research tracks “math anxiety” in the brain, Stanford team uses brain scans to forecast development of kids’ math skills and A not so fearful symmetry: Applying neuroscience findings t0 teaching math
Photo by Hana Tichá

Autism, Pediatrics, Research, Stanford News

Girls with autism show behavior and brain differences compared to boys, Stanford study finds

Girls with autism show behavior and brain differences compared to boys, Stanford study finds

Boy&girlLast week, a new Stanford study answered one of the oldest questions in autism research: Does autism differ between boys and girls?

Yes, the study found. According to the results published in Molecular Autism, girls tend to have less severe manifestations of one core feature of autism, repetitive and restricted behavior, and they show brain-scan differences from boys that help explain the discrepancy.

Hints of a gender difference in autism extend all the way back to the first clinical report of the disorder, published in 1943, which described eight boys and three girls. 70 years after that report, boys are still more commonly diagnosed; among kids with high-functioning autism, the ratio of boys to girls is four to one. But questions about the nature of the gender split have persisted, as our press release on the work explains:

“We wanted to know which specific clinical manifestations of autism show significant gender differences, and whether patterns in the brain’s gray matter could explain behavioral differences,” said the study’s senior author, Vinod Menon, PhD, professor of psychiatry and behavioral sciences. Knowledge of the difference could help clinicians better recognize and treat autism in both sexes, he added. “Understanding this is really quite crucial clinically.”

Prior studies of the gender difference have typically been small and inconclusive. So the Stanford team took a new approach, using two large public databases that capture information from patients all over the country. This allowed them to study almost 800 children who fit a fairly narrow set of criteria: age 7 to 13, evaluated by standard tests for autistic behavior, and with an IQ above 70.

Girls had lower (more normal) scores than boys on a standard evaluation of repetitive and restricted behavior, which includes preoccupation with narrow interests, inflexibility about routines and repetitive motions such as hand-flapping, the study found. Girls and boys did not differ on measures of autism’s other core features, which are social and communication deficits.

MRI brain scans on a subset of the children showed different grey-matter patterns between boys and girls in the motor cortex, supplementary motor area and part of the cerebellum. These areas help the brain plan and carry out motor functions, which the researchers said was noteworthy because many repetitive behaviors have a motor component.

“The discovery of gender differences in both behavioral and brain measures suggests that clinicians may want to focus diagnosis and treatments for autistic girls differently than boys,” [lead author Kaustubh] Supekar,PhD, added.

Previously: A new insight into the brain chemistry of autism, Unlocking autism’s secrets: Stanford researchers point fingers at a brain cell dark horse and Parents can learn autism therapy in groups to improve kids’ verbal skills, Stanford study shows
Photo by Barbara Abate

Patient Care, Pediatrics, Research, Stanford News, Surgery

Spanish-speaking families prefer surgical care in their native language, study finds

Spanish-speaking families prefer surgical care in their native language, study finds

Bruzoni-scrubsFive years ago, when Matias Bruzoni, MD, was a new pediatric surgical fellow at Lucile Packard Children’s Hospital Stanford, his fluency in Spanish meant that he often accompanied other surgeons to consult with Hispanic families who spoke little English.

“I went with the attending surgeon, and would help explain the operation in Spanish, and then the family would say to me ‘Great, would you mind being our surgeon?'” he recalled recently. “And I’d say, ‘But I’m a fellow’ and they would say ‘We’d rather stay with you.'”

The families greatly valued their linguistic and cultural connection to Bruzoni. As he had more of these interactions, Bruzoni realized the hospital’s entire pediatric general surgery team held a mostly untapped linguistic resource. Many of its members – including receptionists, nurse practitioners and triage staff – spoke fluent Spanish.

After Bruzoni finished his training, he organized this group of caregivers into the hospital’s Hispanic Center for Pediatric Surgery, which offers patients and families the ability to receive all of their pre- and post-surgical care in Spanish. Every interaction, from registering the patient to giving post-surgical instructions, happens in the families’ first language. Bruzoni wondered how this approach would compare to using trained medical interpreters, whose services are offered to all non-English-speaking families at the hospital.

A new study, published in the most recent issue of the Journal of Pediatric Surgery, shows what his research found. From our press release:

Spanish-speaking families that discussed their children’s care in Spanish reported a higher level of satisfaction and higher ratings of the quality of information they received compared with the families in the control group and those that worked through an interpreter. Spanish-speaking families rated the importance of discussing care in their native language more highly than English-speaking families, the study found.

Although socioeconomic status was not assessed in this study, Bruzoni noted that Hispanic families of low socioeconomic status may have an even greater need than others to receive care in their native language. “There is a big cultural barrier,” Bruzoni said. “Because of these patients’ circumstances, it is even more important to work with them using their own language.”

Bruzoni plans to continue studying how to deliver better surgical care to California’s growing population of Hispanic children.

Previously: Stanford student earns national recognition for research on medical communication, An app to break through language barriers with patients and Advice for parents whose kids need surgery
Photo courtesy of Lucile Packard Children’s Hospital Stanford

Big data, Pediatrics, Research, Stanford News

Rare gene variants help explain preemies’ lung disease, Stanford study shows

Rare gene variants help explain preemies' lung disease, Stanford study shows

double-helixBecause they’re born before their lungs are fully mature, premature babies are at risk for a serious lung disease. Over the last several decades, this disease, bronchopulmonary dysplasia, has evolved into both a great medical success story and a persistent mystery. But a new Stanford study, published this week, is helping clarify the mysterious part.

First, the success story: Today, doctors can prevent BPD in many babies who would have died of it in the past. Artificial surfactant, which helps keep the air sacs of the lungs open, and extensive research on when it’s appropriate and safe to put preemies on a respirator have both greatly reduced the risk of lung injuries after birth, which can contribute to BPD. The improvement has been especially remarkable for babies born on the later end of the premature spectrum.

However, BPD is still a big problem for infants who arrive more than 12 weeks early. Doctors still have trouble figuring out which of these early preemies are at risk, and why. An editorial accompanying the new Stanford study, which appears in the American Journal of Respiratory and Critical Care Medicine, explains how scientists’ understanding of BPD has evolved:

It is now widely appreciated that the persistence of BPD is strongly linked with factors far beyond postnatal lung injury alone. Importantly, the BPD and related respiratory outcomes clearly have antenatal origins… Growing data support the concept that BPD is at least partly a “fetal disease.”

The editorial names several factors in the prenatal environment that weigh into BPD risk, including certain pregnancy complications and also maternal smoking or drug use. It’s not just the environment that plays into risk, though; twin studies also hint that genes also factor in, and knowing which genes are involved would provide enormous clues to how the disease occurs.

A prior Stanford study that attempted to connect common human gene variants to BPD risk didn’t turn up any good candidates. So, in the new study, the Stanford team focused instead on rare genetic variants. Using data from California’s extensive repository of newborn blood spots (small blood samples collected as part of the state’s program to screen newborns for genetic diseases), they turned up 258 rare gene variants for further investigation, all of which are linked to cell processes that could plausibly be involved in BPD.

“We hope these results will guide future research that can determine the most important pathophysiologic pathways leading to BPD,” said Hugh O’Brodovich, MD, the study’s senior author. The idea isn’t to target the genes themselves for treatment, but rather to help researchers figure out what goes wrong at a molecular level in the lungs of babies who get BPD.

“We also hope this work will be used to discover how clinicians can minimize the chance that an extremely premature baby will develop the disease,” he added.

Previously: Study of outcomes for early preemies highlights complex choices for families and doctors, Stanford-led study suggests changes to brain scanning guidelines for preemies and Counseling parents of the earliest-born preemies: A mom and two physicians talk about the challenges
Photo by James Gaither

Autism, In the News, Neuroscience

A tribute to Oliver Sacks, from a science writer

A tribute to Oliver Sacks, from a science writer

Library-stacksThe news this weekend of neurologist and writer Oliver Sacks’ death brought back a crystalline memory of myself at 18, searching through the library stacks for a copy of his 1973 book, Awakenings. I needed it because the brains did not show up.

An explanation is in order: The spring semester of my college-freshman biology class included a six-week lab elective. Of a few dozen elective options, I picked “The Brain” because the descriptive blurb said each student would get to dissect a sheep brain. I was a bit grossed out by the idea of a sheep brain in front of me on a tray, but my curiosity outweighed my squeamishness. I intensely wanted to examine a real brain.

However, on the first day of The Brain, our teaching assistant broke the bad news: No brains. The room moaned in dismay.

“I know,” he said. “I’m really sorry. To make it up to you, I’m going to let you each do a short report on anything you want, as long as it has some relationship to the brain.”

I had seen the movie version of Awakenings a few years earlier (with Robin Williams playing Sacks) and remembered my mom saying that there was a book, too, but that she had heard it was clinical and dull. Well, I thought, clinical isn’t so bad, and I can stomach dull if it lets me present a book report about a weird brain disease. The TA approved my topic, and off I went to the university’s biomedical library, where the long, dim, badly ventilated staircases gave me attacks of claustrophobia.

Up the dreaded stairs, through the overheated, papery-smelling stacks to the book itself: A library edition, small and lightweight in my hands, bound in an ugly turquoise cover. A book that, once I opened it, I could not put down. Yes, the writing was clinical – there were medical words, and patients were disguised behind names like “Miriam H.” – but dull? No. An adventure in the brain: patients who had been frozen for decades with post-encephalitic parkinsonian syndrome coming to life again when Sacks gave them a drug, only to slowly sink back into their freeze as the drug stopped working for them.

The main thing I remember thinking is: Eeeeeeee! I want to write stories like this! It did not seem like a dream that had any hope of being realized, since I had no intention of becoming a neurologist. I let the impulse go, prepared my Brain report (a success), and subsequently read many more of Sacks’ books – with great pleasure.

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Neuroscience, Pediatrics, Research

Stanford team uses brain scans to forecast development of kids’ math skills

Stanford team uses brain scans to forecast development of kids' math skills

multiplication-table-2Back in the third grade, I did not like math. It was boring! It was hard! Why did I have to memorize the times tables, anyway?

Did this mean I would have trouble with math for the rest of my life, or would I get over my eight-year-old’s funk and end up being good at it? At the time, there was no way to know. But now, in a longitudinal study published today in The Journal of Neuroscience, a team of Stanford researchers show that scans of third graders’ brains forecast which children will eventually do well in math and which of them will continue to struggle.

The resting MRI scans collected in the study evaluated the brain’s structure and connectivity between different brain regions in 43 eight-year-olds of normal intelligence. The researchers also gave the children several standardized tests outside the scanner. They then re-tested the kids’ math skills regularly for the next six years.

The brain scans were better than standard IQ, math or other tests at predicting how the children’s math skills would develop. Larger volume and greater connectedness of specific brain regions at age eight was linked to better math skills down the road. From our press release:

“A long-term goal of this research is to identify children who might benefit most from targeted math intervention at an early age,” said senior author Vinod Menon, PhD, professor of psychiatry and behavioral sciences. “Mathematical skills are crucial in our increasingly technological society, and our new data show which brain features forecast future growth in math abilities.”

In addition to identifying at-risk kids, the scans may help scientists design better ways to help them. Because the new work gives a baseline understanding of brain features in children with normal math skills, it may help guide efforts to strengthen the brains of kids with math difficulties. The researchers, who are now exploring how math tutoring changes the brain, encourage parents and teachers not to give up on children who have a hard time with math:

“Just because a child is currently struggling doesn’t necessarily mean he or she will be a poor learner in the future,” said [Tanya] Evans, [PhD, first author of the new study].

As for me, math never became my favorite subject. But I did eventually shake my early aversion to it. Since my job requires me to understand a range of mathematical concepts, I’m grateful — and I hope the new work being done at Stanford will allow today’s struggling third-graders to someday say the same.

Previously: A not so fearful symmetry: Applying neuroscience findings to teaching math, Peering into the brain to predict kids’ responses to math tutoring and New research tracks “math anxiety” in the brain
Photo by jmawork

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