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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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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

In the News, Medicine and Society, Nutrition, Parenting, Research, Women's Health

Research elaborates on how moms can protect their daughters’ body image

Research elaborates on how moms can protect their daughters' body image

6945839301_9d61091329_zIt’s been my experience that women struggle with their body image at some point on the way from girlhood to womanhood – this may be brief and exploratory, or get tangled with eating disorders and other destructive behaviors. When I had a period of bulimia in my early 20s, I reflected on (among other things) my mother’s relationship with food and body image, and so some new research from Ben-Gurion University in Israel struck a chord.

Maia Maor, PhD, a sociologist, and Julie Cwikel, PhD, a professor of social work and director of the Center for Women’s Health Studies and Promotion, invited adult mother-daughter pairs to reflect on various strategies the mothers used to instill resilience about body image in their daughters. The researchers identified five methods commonly used to resist or reject negative and oppressive messages about body image:

  1. Filtering: being cautious and sensitive regarding body image issues 
  2. Transmitting awareness of the dangers of eating disorders, which can cause illness and death
  3. Positive reinforcement, using affirmative language in regard to their daughters’ bodies
  4. Discussion: providing tools for criticism of dominant body-related messages
  5. Positivity: shifting the focus of food and body-related discussions away from weight loss and towards health and taking pleasure in food. 

In a press release from last week, Maor explained that “the focus on protective strategies was intended to achieve two goals: to emphasize the positive in mother-daughter relationships and to identify a repertoire of strategies available to parents and allied health professionals who wish to help their daughters or young women build a stable, positive body image.”

Feelings about food and bodies have long chains of intergenerational transmission. According to the release, “some of the mothers in the study recalled how their own mothers’ negative comments to them about eating too much led them to associate food with guilt and bad feelings. They raised their own daughters by instead talking about the quality of food, importance of food choices and its relationship to developing respect for their own bodies.”

The study appears in the journal Feminism & Psychology.

Previously: Incorporating the family in helping teens overcome eating disorders, Stanford study investigates how to prevent moms from passing on their eating disorders, Promoting healthy eating and a positive body image on college campuses, What a teenager wishes her parents knew about eating disorders, and Social website shown to boost teen girls’ body image
Photo by Thanasus Anastasiou

Mental Health, Parenting, Pediatrics, Pregnancy, Public Health, Research, Women's Health

Sleep-deprivation and stress among factors contributing to smoking relapse after childbirth

Sleep-deprivation and stress among factors contributing to smoking relapse after childbirth

2473235415_0584b78298_zSmoking can make it more difficult to get pregnant and it can contribute to complications after conception and endanger the health of babies as they grow. For these reasons, many women quit smoking when they are trying to conceive and during pregnancy. But an estimated 40 percent of women in the United States who kick the nicotine habit for the health of their unborn child relapse within six months after delivery.

New research published in the journal Addiction suggests that the stress of becoming a parent could be a significant factor in why some moms resume smoking after childbirth. In the study, British researchers interviewed 1,000 mothers about factors that influenced their relapse or contributed to them staying smoke-free. Lead researcher Caitlin Notley, PhD, discussed the findings in a PsychCentral article:

One of the most striking things that we found is that women’s beliefs about smoking are a major barrier to remaining smoke-free. Many felt that smoking after the birth of their child was acceptable provided they protected their babies from secondhand smoke.

Their focus is, admirably, on the health of the baby, but they often do not think about the long-term health consequences for themselves as mothers.

We also found that women who saw smoking as a way of coping with stress were more likely to relapse. And that feeling low, lonely, tired, and coping with things like persistent crying were also triggers. Women reported that cravings for nicotine, which had lessened or stopped during pregnancy, returned.

The majority of women who had successfully remained smoke free said that the support of their partner was a strong factor. Partners who gave up smoking, or altered their own smoking behaviors, were a particularly good influence. And those who helped ease the stress of childcare were also praised by women who had resisted the urge to light up

In addition to receiving help from their partners, moms said support from health professionals was another positive contributor to them being able to resist urges to smoke and manage stress.

Previously: Study shows mothers receiving fertility treatments may have an elevated risk of depression, Examining how fathers’ postpartum depression affects toddlers, A telephone lifeline for moms with postpartum depression, What other cultures can teach us about managing postpartum sleep deprivation and Is postpartum depression more of an urban problem?
Photo by Samantha Webber

Health Disparities, Medicine and Society, Parenting, Pediatrics, Public Health, Stanford News

Stanford med student helps turn pediatrics waiting room into a center for school-readiness

Stanford med student helps turn pediatrics waiting room into a center for school-readiness


For many low-income children, a pediatrician is the only professional they interact with before they start kindergarten. This fact inspired Jecca Steinberg, a second-year Stanford medical student and Schweitzer Fellow, to think about how that interaction could improve these children’s school readiness, which often lags behind that of their peers. If these kids could be equally well-prepared for kindergarten, their potential for economic mobility would skyrocket.

Now, in an innovative collaborative effort, the pediatrics waiting room of Fair Oaks Health Center in Redwood City, Calif. is being turned into a learning center. According to previous research conducted by the Stanford Pediatric Advocacy Program, the clinic’s patient population includes more than 900 low-income children between the ages of 2 and 5; surveys indicate that only 31 percent participated in any kind of formal pre-school education and 82 percent were not school-ready by kindergarten.

In collaboration with Neel Patel, MD, the medical director at the clinic, Steinberg reached out to Stanford art practice lecturer Lauren Toomer, MFA, who volunteered her time and talent to produce a mural that will transform the drab waiting room into a space for learning opportunities. The mural incorporates letters, numbers, shapes, and images of the Redwood City community, as well as three interactive learning panels. Patel generously donated the funds for the supplies. See the prototype above; the actual mural will be finished by early October.

In a recent phone conversation, Steinberg explained to me that the mural project is one component of a larger project called Kinder Ready, which is part of Stanford’s Pediatric Advocacy Program led by Lisa Chamberlain, MD, MPH, and Janine Bruce, DrPH. (The work at Fair Oaks Clinic has been led by Stanford pediatrics residents Jaime Peterson, MD, and Ashley Case McClary, MD.) I asked her more about their efforts:

How did you get involved in this work?

I’d say my entire motivation for entering the field of medicine is centered on providing opportunities for socioeconomic mobility, and although health is an incredibly important aspect of that, it can’t be viewed in a vacuum as a solution. So these interdisciplinary efforts touch on everything I’m passionate about. For my first-year Stanford Medical Scholars research project, called community based participatory research, I set up a series of focus groups with low-income parents to talk to them about their conceptions of school readiness: what they think a role of a parent is, and how they think a pediatrician could help them.

Currently I help screen children for their school-readiness level, and I work with the parents to teach them different activities that they can do at home to promote their children learning. I’ve been working with Dr. Patel to include activities and interventions in well-child visits that parents can take home with them. We set them up with library cards, let them know about parent-child reading hours and mommy-and-me classes in the community, and make it easier to get a hold of books and other learning materials.

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In the News, Parenting, Patient Care, Pregnancy, Public Health, Women's Health

Low-tech yet essential: Why parents are vital members of care teams for premature babies

Low-tech yet essential: Why parents are vital members of care teams for premature babies

3297657033_081d4f3630_zThanks to recent advances in medicine, technology and research, most premature babies born in the United States face better odds of surviving than ever before. Yet, the number of premature births in the U.S. remains relatively high, with a rate that’s on par with that of Somalia, Thailand and Turkey.

For the parents of a premature baby, an early birth can transform what was supposed to be a happy event into a stressful one, says Henry Lee, MD, an assistant professor of pediatrics at Lucile Packard Children’s Hospital Stanford. In a recent U.S. News & World Report article penned by Lee, he discusses why it’s important for parents, and beneficial for the baby, when parents are active members of the child’s medical team:

Giving birth to a preemie, especially when it’s unexpected, leaves many parents feeling unprepared and helpless. But we make it clear very early. “You, the parent, are a critical part of our medical team.” That’s right. Even in the heart of Silicon Valley where we’re located, two of our biggest assets are decidedly low-tech workers: the baby’s mom and dad.

Including parents in the care of preemies is a standard that was unheard of in the early days of neonatology, but is now used in leading NICUs for one critical reason: It works.

Here’s an example of how parents contribute. Studies have shown that skin-to-skin care, also known as kangaroo care, can have beneficial effects on preterm neonates, including improved temperature and heart rate stability. In many NICUs, you will see babies – clad only in a diaper and covered by a blanket – placed prone position on the chest of either the mother or the father. This intimate method of care provides a preterm baby a natural environment for rest, growth and healing.

No matter when a baby is born, term or preterm, families know their children best. A parent’s contribution is critical to treating these most vulnerable of newborns.

Previously: How Stanford researchers are working to understand the complexities of preterm birthNew research center aims to understand premature birth and A look at the world’s smallest preterm babies
Photo by Sarah Hopkins

Addiction, Parenting, Pediatrics, Public Health, Research, Stanford News

Teens confused about harms of marijuana and e-cigarettes, Stanford study finds

Teens confused about harms of marijuana and e-cigarettes, Stanford study finds

smoking-skaterToday’s teenagers are familiar with the dangers of smoking conventional cigarettes, but they’re much less sure of the risks posed by marijuana and e-cigarettes, according to a Stanford study published today in the Journal of Adolescent Health.

The researchers asked 24 high-school students in one Northern California school district about the benefits and risks they perceived from cigarettes, e-cigarettes and marijuana, and where they were getting information about each. The good news is that teens have clearly absorbed the message – from parents, teachers and public health campaigns – that cigarettes are bad for their health. And the kids surveyed saw no benefit to smoking cigarettes, suggesting that conventional cigarettes have lost the “cool” factor they once had among the young.

But there was a big gap in teens’ understanding of e-cigarettes and marijuana, as our press release about the research explains:

“Kids were really good at describing the harmful things that happen with cigarette smoking, but when we asked about other products, there was a lot of confusion,” said the study’s lead author, Maria Roditis, PhD, a postdoctoral scholar in adolescent medicine.

“We’re good at delivering messaging that cigarettes are harmful, but we need to do a better job with other products that teens may smoke,” added Bonnie Halpern-Felsher, PhD, professor of pediatrics in adolescent medicine and the study’s senior author. “We don’t want the message kids get to be ‘cigarettes are bad, so everything else might be OK.’”

Teens need to hear about the risks of marijuana, including its damaging effects on the adolescent brain; its addictive potential; and its ability to damage the lungs, which is similar to that from inhaling smoke from any form of plant matter, Halpern-Felsher said. They also need to hear about the risks of e-cigarettes, which include the addictive properties of nicotine and the fact that flavor compounds in e-cigarettes can cause obstructive lung disease.

In a story about the research on, Halpern-Felsher speculated on some of the factors that may be affecting teens’ views of marijuana and e-cigarettes:

There are several possible reasons why teens may view the risks of smoking cigarettes differently than using marijuana or e-cigarettes. One reason involves advertising — although the tobacco industry can’t advertise on TV, in some print media or in any youth venue, similar restrictions don’t apply to e-cigarettes, Halpern-Felsher told Live Science.

Young people are seeing e-cigarettes in cool colors and cool flavors. They are also seeing celebrities use them, and that gives these products more exposure and makes them appealing, she said.

Previously: With e-cigarettes, tobacco isn’t the only danger, How e-cigarettes are sparking a new wave of tobacco marketing and To protect teens’ health, marijuana should not be legalized, says American Academy of Pediatrics
Photo by James Alby

Chronic Disease, Parenting

Living with the uncertainty of NF

Living with the uncertainty of NF

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Kate Duff of Massachusetts.

Silver LiningWhen our adult daughter Megan was about three years old, I noticed several bumps on the side of her head, and some brown spots on her belly. After meeting with her pediatrician, Megan had surgery to remove the bumps.

The week after the surgery, her surgeon called to say that what he removed were tumors and that Megan had neurofibromatosis (NF), and that we would be hearing from her pediatrician, and he hung up the phone. This was in 1987. There was no quick or easy way to look up information on NF, and never mind trying to research – I had NO idea what the surgeon even said.

Our pediatrician told us what NF was and that Megan most likely had this disorder, but she had never had a patient with NF. She gave us a Neurofibromatosis Northeast pamphlet that detailed what seemed to be a lot of scary things about the disease. We left the office overwhelmed and just couldn’t believe that our perfect little girl had this horrible disorder. We agonized about Megan’s future.

The next day, I called the number on the back of that flier. What I know now is that that was a lucky day for my family and me. The nonprofit organization Neurofibromatosis Northeast and its executive director, Karen Peluso, have saved my family and Megan many times over the last 28 years.

Although NF has brought us challenges, it has never been too serious or life threatening. Megan has had her share of surgeries to remove painful and disfiguring tumors, and she has dealt with learning disabilities that she has overcome to become a college graduate.

But in October 2013 all that changed. A week before her 30th birthday, I had to give Megan the news that she had aggressive breast cancer. We learned that people with NF have a four times greater risk of having breast cancer.

Megan has had a double mastectomy, reconstruction surgery, two rounds of chemo, and now doing radiation and a 3rd round of chemo. We have approached her breast cancer as we have approach her NF – by taking one day at a time – and living this way has truly helped her stay positive thru her treatments. Even with her NF, Megan has never asked, “Why me?” She handles all of this with amazing courage and grace. She is my hero.

Five years ago I met a group of mothers whose young children were recently diagnosed with NF. I wanted them to meet Megan to see how bright their children’s futures can be; I wanted them to know it’s not all gloom and doom.

If we can keep the doctors at the microscopes so they can find a cure for this horrible disorder, maybe we can make patients’ quality of life better and not so scary and uncertain. Research money is what will allow that to happen.

When Megan was first diagnosed, a dear friend said how sorry she was, and that she just couldn’t find a silver lining in all of this. But my friend was wrong. Through this journey with Megan and NF, we may not have seen it right away, but it was there: All the amazing, caring and generous people we’ve met along the way are the silver lining.

Kate Duff lives in Massachusetts with her family. For the past three decades, through Neurofibromatosis Northeast, Duff has helped raise money for NF research, and also support families affected by NF.

Photo by LadyDragonflyCC

Evolution, Parenting, Pediatrics, Research, Women's Health

Just when did it begin to “take a village to raise a child”?

9640826608_e65589c650_zImagine a prehistoric human mother raising her baby outside of any community or family structure, with no help from others. It sure doesn’t fit with my idea of the “village” that raises a child, a phrase I often associate with romantic notions of pre-modern lifestyles. But according to a study done by University of Utah anthropologist Karen Kramer, PhD, if you go far back enough in human evolution, mothers raised their young alone and didn’t feed or care for them past weaning (which happened around 5 or 6 years of age!).

The study, published in the Journal of Human Evolution and interestingly titled “When mothers need others: The impact of hominin life history evolution on cooperative breeding,” examines how humans transitioned into family and community patterns of child rearing. It suggests that the earliest cooperative groups were formed by a mother and many of her children, with older ones helping rear younger siblings; after this was established, other adults were incorporated, probably when bands of mothers with their offspring teamed up. As women became better at reproducing, they needed the extra help.

As noted in a University of Utah press release, this is different from the predominating theories among anthropologists, which point to cooperation among adults. Kramer also comments:

Human mothers are interesting. They’re unlike mothers of many other species because they feed their children after weaning and others help them raise their children. As an anthropologist, I live and work in traditional societies where, like other researchers, I have observed many times that it takes a village to raise a child. Not only do mothers work hard to care for their young, but so do her older children, grandmothers, fathers and other relatives. But this wasn’t always the case.

The consequences for health likely factored into the “economic decision making” that Kramer modeled in her study – children reared cooperatively were more likely to survive, and I imagine mothers garnered more than a few benefits from extra pairs of eyes, ears, hands, and feet, as well.

And another thing this study shows us: Some of the same decisions that parents weigh today – how many children to have, which kind of help to recruit in raising them, and what kind of balance between kids and other pursuits will optimize health – are really not so novel.

Previously: Computing our evolution and Revealed: Epic evolutionary struggle between reproduction and immunity to infectious disease
Photo by Jaroslav A. Polak

Parenting, Pediatrics

Overwhelmed as a mom of multiples

Overwhelmed as a mom of multiples

twin babies

My babies were three days old when my husband offered to get take-out from one of our favorite restaurants. I said, “Yes,” as I might have said it before the girls were born. But as soon as he left I realized this was my first time alone with my twins. In the small, silent room, I whispered to them, “Okay girls. It’s just you and me. Be good for mommy.”

Everything was quiet for a while, until one started crying. I picked her up and rocked slowly side to side. Just when she calmed, the other started crying. That got the first one crying again, this time louder and more distressed. I had one baby crying in my arms and the other crying in a bassinet and I didn’t know what to do.

The day-to-day challenge of multiples is simply this: There may be multiple of them, but there’s often only one of you

Was it five minutes? Ten? It seemed like eternity. I tried putting them on the bed next to each other, and leaning over to hug them both at once. They hated it. Unable to choose one over the other, I found myself choosing neither. I felt absolutely overwhelmed.

Finally, an early Beatles song came to mind, and I sang it softly to them. “Tell me why-y-y-y you cry…” When I saw how my singing quieted them, suddenly the tears started pouring out of my eyes, but I didn’t dare stop singing: “Is there anything that I can do? ‘Cause I really can’t stand it, I’m so in love with you.”

“Hello!” My husband returned with the take-out. My face was red hot, my eyes half blind from crying, my nose uselessly stuffed, my throat caught. I was a mess. And I was singing – badly. But my babies weren’t crying anymore.

That’s when I knew – I mean really felt – that I was their mom. I could hardly believe there was a moment even a minute long when I felt so alone and helpless. Their dad took one baby, I took the other; we fed them, we changed them, we tucked them back to sleep. And after it all, the food was still warm.

The day-to-day challenge of multiples is simply this: There may be multiple of them, but there’s often only one of you. Sometimes your babies need more of you than you have to give. You love them equally and you don’t like having to choose one to take care of first while another waits and cries for you. You will envy the single moms of single babies who complain that they must hold their baby all the time. You wish you could hold your babies all the time – the best you can do for them is one at a time.

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