Tag: Featured

Time-Delayed Eating Leads to Better Food Choices

A study of online grocery orders found that people who order several days before delivery make better food choices than those who seek last-minute deliveries.

A study of online grocery orders found that people who order several days before delivery make better food choices than those who seek last-minute deliveries. Yana Paskova for The New York Times

Want to improve your diet? Try time-delayed eating — ordering (or at least choosing) your food long before you plan to eat it.

A series of experiments at Carnegie Mellon University found that when there was a significant delay between the time a person ordered their food and the time they planned on eating it, they chose lower-calorie meals.

What was interesting, researchers said, was that the participants were not making a conscious choice to order less. Most didn’t even realize they were choosing lower-calorie options.

Being less hungry when they ordered the meal accounted for only a small part of the difference, said Eric M. VanEpps, a post-doctoral student at the University of Pennsylvania Center for Health Incentives and Behavioral Economics who led the research while at Carnegie Mellon. The research was published this summer in the journal American Marketing Association.

Dr. VanEpps believes people have what he calls a “bias toward the present,” that alters the calculations they make about something that is occurring momentarily.

“If a decision is going to be implemented immediately, we just care about the immediate consequences, and we discount the long-term costs and benefits,” Dr. VanEpps said. “In the case of food, we care about what’s happening right now – like how tasty it is – but discount the long-term costs of an unhealthy meal.”

On the other hand, when you order a meal in advance, “you’re more evenly weighing the short-term and the long-term costs and benefits,” he said. “You still care about the taste but you’re more able to exert self control.”

The finding is the latest to suggest that timing matters when it comes to healthful eating. When people order groceries online, they are more likely to choose healthier foods when they schedule a delivery date several days away, one study found..

Another study showed that people choosing a snack a week in advance were more likely to pick an apple or banana over a candy bar. When choosing a snack for immediate consumption, they were more likely to choose a candy bar.

One study showed that people choosing a snack in advance were more likely to pick an apple or banana over a candy bar.

One study showed that people choosing a snack in advance were more likely to pick an apple or banana over a candy bar. Tony Cenicola/The New York Times

The latest research, which focuses on three eating-delay experiments, offers a number of insights that can help us make better choices for eating out.

In the first experiment, 394 employees of a large health care company were asked to place their lunch orders at least 30 minutes before they wanted to pick up their meal. They had the option to place an order as early as 7 a.m. for lunches that were to be picked up between 11 a.m. and 2 p.m. Some people placed their order five hours in advance while others barely made the deadline, placing an order 31 minutes ahead of pickup.

The more hours people planned ahead, the fewer calories they ordered and ultimately consumed. For every hour in advance the participants ordered their meal, they ordered 38 fewer calories. The biggest effect of the time-delay was seen in women.

In another experiment, the Carnegie Mellon researchers recruited more than 1,100 workers and controlled the time delay between ordering and eating. One group of workers at the same company placed their food order before 10 a.m. and had to wait at least an hour before eating. Another group placed its lunch order after 11 a.m., and waited just 30 minutes before eating it. In one arm of the experiment, calorie labels were put on meals containing fewer than 500 calories.

The same pattern ensued: When people ordered lunch longer in advance, they were more likely to choose the meal with less than 500 calories. What was interesting was that they didn’t seem to think they were doing anything unusual and said they would have chosen the same option, regardless.

Did people order more calories later in the morning because they were hungrier? A third experiment attempted to answer this question. The researchers recruited about 200 university students who took classes that ended around lunchtime, and asked them to answer surveys in exchange for a free lunch.

Some students took the survey before their class, while others took it right before receiving their meal. The surveys asked about unrelated issues in order to mask the true purpose of the trial, and gave the students the opportunity to order their meal and also indicate how hungry they were.

Once again, the pattern held: Students who took the survey before their class (and thus placed their food order earlier) ordered lunches containing about 100 fewer calories. The sandwiches they chose were similar in type to those of the students who ordered later, but they were more likely to order bottled water instead of a soda and chose less caloric combinations of fruit and cookies.

Dr. VanEpps isn’t sure advance ordering will work the same way if you are going out for dinner or a celebratory meal. But if businesses or schools want to encourage employees and students to eat healthfully, he said “let them make decisions further in advance.”

But some researchers were skeptical about people’s ability to plan ahead like this on a regular basis.

“This requires a level of organization and forward planning that would be impossible for someone like me,” said Marion Nestle, a professor of nutrition, food studies and public health at New York University. But, she said, “More power to those who can do this!”

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Pretty Girls Are Supposed to Smile

Jon Krause

“There is no one who has not smiled at least once,” writes Marianne LaFrance, a Yale University psychology professor, in her 2011 book “Lip Service: Smiles in Life, Death, Trust, Lies, Work, Memory, Sex and Politics.” Her book explores how smiling unifies us. Like breath, the smile is universal. We smile to connect, to forgive, to love. A smile is beauty, human.

But I have never smiled. Not once.

I was born with Moebius syndrome — a rare form of facial paralysis that results from damage in the womb to the sixth and seventh cranial nerves, which control the muscles of the face. I was born in Britain, on the same day in 1982 the country’s first test-tube twins were born. But while science has created medical miracles like test-tube babies, there’s little that doctors can do for someone with Moebius syndrome.

Decades later, I still cannot smile. Or frown. Or do any of the infinite subtle and not-so-subtle things with my face that I see others in the world around me doing every day.

Doctors describe people with Moebius as having a “mask-like expression.” And that is what strangers must see. A frozen face, eyes unblinking. My mouth always open, motionless, the left corner of my lips slightly lower than the right. Walking down the street, I can feel the touch of casual observers’ eyes.

A child’s very first “social smile” usually occurs six to eight weeks after birth, eagerly awaited by new parents. Because, as an infant, my face remained so expressionless, when I began laughing it took my mother a while to realize that the sound I was making was laughter. At what point, I wonder, did I begin to compensate for the absence of my smile.

I am constantly touching my own face, making it move with my hands. I like the sensation of my fingertips shifting my otherwise motionless lips. It’s something I’ve done since I was very young.

I remember, age 5, kneeling at my grandmother’s dressing table, while my grandmother, without my noticing her, watched from around the doorjamb. Very quietly, I leaned toward her mirror, my elbows pressing into the cool granite top and, with two fingers, lifted the corners of my mouth into a tiny smile — a smile I only dared to share with my reflection.

This was the beginning of my understanding that I was different.

Not until I was 16 did Granny tell me that she had been watching me that day, saying, “It broke my heart.”

Through childhood and adolescence, I continued secretly “smiling” at myself in the mirror. Seeing the appearance, however awkward, of a smile on my own face helped me feel better about the day-to-day missed connections with others — schoolmates, girls in my ballet class, or adults on queue in the supermarket — who perhaps wanted to see me smile back at them.

Not smiling is about much more than surface image, though. It takes real stamina. To swallow a mouthful of food, for example, I use a few delicately placed fingers to press my lips closed. After swallowing, I try to lower the helping hand so that it looks as though I am merely brushing a stray crumb from my mouth, hoping no one notices that I do this many, many times more than a normal person would.

Going to sleep is another challenge. Because I can’t voluntarily close my eyelids fully, I have to either hold my eyelids closed with my right forefinger and thumb until they stay shut, or lie on my back with a cotton tank top laid over my eyes in such a way that their lids are sealed. Sometimes this gets exhausting. Sometimes I shed tears, and that speeds up the process.

I try to act around my disability. To pass. The one missing gesture I can never fully compensate for, though, is smiling. My body feels the smiles my face has never shown. When I explain to new friends why I don’t — can’t — smile, they say, Wow, that must be really hard. Not really, I lie, by now I’m used to it.

Still, there are moments when I feel the smile my face cannot physically make. It might be while I’m laughing over a shared joke with a friend, or when a child passing on the street smiles up at me. It translates as instantaneous pleasure throughout my whole body — a kind of minute awakening, both within and without. For a long time I wondered whether it showed. But close friends tell me my smile does come through, that they can see my smile.

Yet, recently, an elderly man passing me at a bus stop looked me up and down, caught my eye, and said, “Pretty girls are supposed to smile.”

I was speechless. I shook my head and laughed uncomfortably, hoping he wouldn’t pursue the subject. As he walked away, I remembered a high school photographer cheerily calling “Smile!” just before the blinding white flash. “Smile,” someone says, and again I’m 5 in the mirror, or 16, cringing, trying to do something I cannot do, and waiting for the uncomfortable moment to pass.

Effy Redman, a graduate of Hunter College’s creative writing M.F.A. program, lives in Saratoga Springs, N.Y.

What Are the Purple Dots on Michael Phelps? Cupping Has An Olympic Moment

Michael Phelps competed in the final of the men’s 4x100-meter freestyle relay during the 2016 Summer Olympics with some strange purple dots on his arm and back.

Michael Phelps competed in the final of the men’s 4×100-meter freestyle relay during the 2016 Summer Olympics with some strange purple dots on his arm and back. Matt Slocum/Associated Press

Have you been wondering why swimmer Michael Phelps and other Olympians are sporting deep-purple circles on their limbs and midsections?

While it may look like the athletes have been in a bar fight, the telltale purple dots actually are signs of “cupping,” an ancient Chinese healing practice that is experiencing an Olympic moment.

In cupping, practitioners of the healing technique — or sometimes the athletes themselves — place specialized, round circular cups on the skin. Then they use either heat or an air pump to create suction between the cup and the skin, pulling the skin slightly up and away from the underlying muscles.

The suction typically only lasts for a few minutes, but it’s enough time to cause the capillaries just beneath the surface to rupture, creating the circular, photogenic bruises that have been so visible on Mr. Phelps as well as members of the U.S. men’s gymnastics team. If the bruising effect looks oddly familiar, it’s because it’s the same thing that happens when someone sucks on your neck and leaves a hickey.

Thanks @arschmitty for my cupping today!!! #mpswim #mp @chasekalisz

A photo posted by Michael Phelps (@m_phelps00) on Sep 10, 2015 at 12:29pm PDT

Physiologically, cupping is thought to draw blood to the affected area, reducing soreness and speeding healing of overworked muscles. Athletes who use it swear by it, saying it keeps them injury free and speeds recovery. Mr. Phelps, whose shoulders were dotted with the purple marks as he powered his 4×100 freestyle relay team to a gold medal Sunday, featured a cupping treatment in a recent Under Armour video. He also posted an Instagram photo showing himself stretched on a table as his teammate, fellow Olympian swimmer Allison Schmitt, placed several pressurized cups along the back of his thighs. “Thanks for my cupping today!” he wrote.

While there’s no question athletes and many coaches and trainers believe in the treatment, there’s not much science to determine whether cupping offers a real physiological benefit or whether the athletes simply are enjoying a placebo effect.

One 2012 study of 61 people with chronic neck pain compared cupping to a technique called progressive muscle relaxation, or P.M.R., during which a patient deliberately tenses his muscles and then focuses on relaxing them. Half the patients used cupping while the other half used P.M.R. Both patient groups reported similar reductions in pain after 12 weeks of treatment. Notably, the patients who had used cupping scored higher on measurements of well-being and felt less pain when pressure was applied to the area. Even so, the researchers noted that more study is needed to determine the potential benefits of cupping.

Another experiment involving 40 patients who suffered from knee arthritis found that people who underwent cupping reported less pain after four months compared to arthritis sufferers in a control group who were not treated. But the cupped group knew they were being treated — it’s not easy to blind people about whether a suction cup is being attached to their leg or not — and so the benefits might have been due primarily to a placebo effect.

Still, a placebo effect can be beneficial, and for athletes at the Olympic level any legal edge, however tenuous, may be worth a few eye-catching bruises.

A few years ago Denver Broncos player DeMarcus Ware posted a photo on Instagram showing his back covered with 19 clear cups as a therapist held a flame used to heat the cup before placing it on the skin. Celebrities including Jennifer Aniston and Gwyneth Paltrow have also been photographed with cupping marks on their skin.

Last year, Swimming World magazine noted that some college programs had begun using cupping therapy as well as former Olympian Natalie Coughlin, who has posted a number of photos of herself undergoing the treatment.

U.S. gymnast Alexander Naddour was sporting the purple dots during the men’s qualifying rounds on Saturday in Rio. He told USA Today that he bought a do-it-yourself cupping kit from Amazon. “That’s been the secret that I have had through this year that keeps me healthy,” Mr. Naddour told USA Today. “It’s been better than any money I’ve spent on anything else.”

The Merits of Reading Real Books to Your Children

Getty Images

A new Harry Potter book and a new round of stories about midnight book release parties reminded me of the persistent power of words printed on a page to shape children’s lives.

How do we think about a distinct role for paper, for “book-books” in children’s lives? My own pediatric cause is literacy promotion for young children. I am the national medical director of the program Reach Out and Read, which follows a model of talking with the parents of babies, toddlers and preschoolers about the importance of reading aloud, and giving away a developmentally appropriate children’s book at every checkup.

We are talking about very young children here, and we begin by giving out board books which are designed to be chewed and drooled on by babies who are still exploring the world orally, or thrown down (repeatedly) off the high chair by young children who are just figuring out object permanence and experimenting with ways to train their parents to fetch and retrieve. But the most essential attribute of those board books, beyond their durability, is that they pull in the parent, not only to pick them up, but to ask and answer questions, name the pictures, make the animal noises.

I love book-books. I cannot imagine living in a house without them, or putting a child to bed in a room that doesn’t have shelves of books, some tattered and beloved, some new and waiting for their moment. It’s what I wanted for my own children, and what I want for my patients; I think it is part of what every child needs. There’s plenty that I read on the screen, from journal articles to breaking news, but I don’t want books to go away.

I would never argue that the child who loves to read is worse off because those “Harry Potter” chapters turn up on the screen of an ebook reader rather than in those matched sets of thick volumes that occupy my own children’s shelves. (Although I think there’s something wonderful about looking at the seven books of the series and remembering a midnight party in a bookstore or two, and sometimes coming home from high school or college and taking one — or all seven — to bed with you.)

But what about the younger children, the ones who are working to master spoken language while taking the early steps in their relationships with books and stories? There’s a lot of interest right now in pediatrics in figuring out how electronic media affect children’s brains and children’s learning styles and children’s habits.

In a 2014 review of studies on electronic storybooks, researchers outlined some of the ways that such stories could help young children learn, and some of the ways that they could hurt. They pointed out that especially for children with language delays, certain features of electronic books that reinforce the connection between image and word (for example, animated pictures) may help children integrate information, but that distracting features and games may cause “cognitive overload,” which gets in the way of learning. And they worried, of course, that screen time might displace parent-child time.

Dr. Jenny Radesky, a developmental behavioral pediatrician and assistant professor of pediatrics at the University of Michigan at Ann Arbor, is one of the authors of the coming American Academy of Pediatrics policy statement on media use for children from birth to age 5. “Preschool children learn better when there’s an adult involved,” she said. “They learn better when there are not distracting digital elements, especially when those elements are not relevant to the story line or the learning purpose.”

In a small study published in February in JAMA Pediatrics, researchers looked at the interactions between parents and their children, ages 10 to 16 months, and found that when they were playing with electronic toys, both parents and children used fewer words or vocalizations than they did with traditional toys. And picture books evoked even more language than traditional toys.

Words and pictures can do many things for the reader’s brain, as we know from the long and glorious and even occasionally inglorious history of the printed word. They can take you into someone else’s life and someone else’s adventure, stir your blood in any number of ways, arouse your outrage, your empathy, your sense of humor, your sense of suspense. But your brain has to take those words and run with them, in all those different directions. Brain imaging has suggested that hearing stories evokes visual images in children’s brains, and more strongly if those children are accustomed to being read to.

And a parent can offer questions and interpretations that take the experience beyond bells and whistles. “A parent can ask, ‘Oh, remember that duck we saw at the pond?’,” Dr. Radesky said. “When a parent relates what’s on the page to the child’s experience, the child will have a richer understanding.”

Story time can also be good for the grown-ups. “Parents have said to me, ‘I need that 30 minutes of reading, it’s the only time my child snuggles with me,’ ” Dr. Radesky said. “We shouldn’t only think about what the child is getting from it.”

Part of what makes paper a brilliant technology may be, in fact, that it offers us so much and no more. A small child cannot tap the duck and elicit a quack; for that, the child needs to turn to a parent. And when you cannot tap the picture of the horse and watch it gallop across the page, you learn that your brain can make the horse move as fast as you want it to, just as later on it will show you the young wizards on their broomsticks, and perhaps even sneak you in among them.

Reading and being read to open unlimited stories; worlds can be described and created for you, right there on the page, or yes, on the screen, if that is where you do your later reading. But as those early paper books offer you those unlimited stories, the pictures will move if you imagine the movement; the duck will quack if you know how to work your parent. It’s all about pushing the right buttons.

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Dementia Patients Hold On to Love Through Shared Stories

Paul Rogers

Can you keep the love light shining after your partner’s brain has begun to dim? Just ask Denise Tompkins of Naperville, Ill., married 36 years to John, now 69, who has Alzheimer’s disease.

The Tompkinses participated in an unusual eight-week storytelling workshop at Northwestern University that is helping to keep the spark of love alive in couples coping with the challenges of encroaching dementia.

Every week participants are given a specific assignment to write a brief story about events in their lives that they then share with others in the group. The program culminates with a moving, often funny, 20-minute written story read alternately by the partners in each couple in front of an audience.

Each couple’s story serves as a reminder of both the good and challenging times they have shared, experiences both poignant and humorous that reveal inner strength, resilience and love and appreciation for one another that can be easily forgotten when confronted by a frightening, progressive neurological disease like Alzheimer’s.

“It’s been an amazing experience for us,” Mrs. Tompkins said of the program. “Creating our story revealed such a richness in our life together and is helping us keep that front and center going forward.”

She added that the program provides “an opportunity to process what you’re going through and your relationship to each other. It helped me digest all the wonderful things about John and how well we relate as a couple, things that don’t go away with Alzheimer’s disease. John is so much more than his disease.”

Ditto for Robyn and Ben Ferguson of Chicago, married 42 years in 2012 when they learned that Ben, a psychologist, had Alzheimer’s disease. “The diagnosis was crushing,” said his wife, who is also a psychologist. “Telling people in the program about it helped us recognize the impact on our lives and relationship and really face that. It made things feel not quite so bad.”

The Fergusons have publicly presented their 20-minute story together 19 times so far, helping to enlighten medical students and those training in social work and pastoral care, as well as researchers and members of the general public. “It reinforces our relationship as a couple, rather than caregiver and patient, even though he is 85 percent dependent on me for the activities of daily living.”

Dr. Ben Ferguson, now 69, said, “I feel we’re giving people information that could be very valuable in their future. It’s helpful to them to see us smile, have a good time and give a good report – as well as a bad report – about what goes on with this disease. It’s helpful for people to hear it from someone who has it, and it’s helped us avoid getting so morose.”

As for their presentations, which they now give almost monthly, his wife said, “They help us stay positive and give us a sense of purpose. We both feel a real need to do advocacy work, and this is the best thing we can do right now. We know there’s a sell-by date on this – we won’t be able to do it forever. But we don’t think about that now. Now we’re focused on helping people understand that your life doesn’t stop with the diagnosis. We want people to hear that you go on with your life, even though you may need a lot of help.”

Another workshop participant, Sheila Nicholes, 76, of Chicago, said of her husband, Luther, who has vascular dementia, that the storytelling “brings him back to being funny again. Writing our story together gave us a way to talk about these things, to think about where we were then and where we are now.”

Noting that dementia is “a very hush-hush illness in our black community,” Ms. Nicholes said she hoped that telling their story would help others speak more openly about it and learn to “just roll with the flow.”

The storytelling workshop, which started in January of 2014, was the brainchild of Lauren Dowden, then an intern in social work at Northwestern’s Cognitive, Neurological and Alzheimer’s Disease Center. She quickly learned from family members in a support group that “their concerns were not being addressed about dealing with loss, not just of memory, jobs and independence, but also what they shared as a couple.”

During the group sessions, Ms. Dowden said, “there’s so much laughter in the room, so much joy and love of life as well as poignancy and tears. As they move forward, as the disease progresses, they can be reminded of who they are, their strength and resilience, what has made their relationship strong, what they loved about the person, as opposed to just being patient and caregiver.”

As the program moves week to week, Ms. Dowden said, “there’s more touching, affection, looking at one another and laughing. There are delightful moments of connection when one member of a couple reveals something the other didn’t know.”

The weekly story assignments require that the couple collaborates, “and they learn how to work together in new ways, how to make adjustments, because they’ll have to make thousands and thousands of adjustments throughout the course of the disease.”

In executing the workshop assignments, Dr. Ferguson said she would ask her husband questions, he would answer and she would write down what he said. “The workshop was really transformative,” she said. “It gave us hope for our future together in dealing with this disease.”

Ms. Dowden said the feedback from those in the audience for the 20-minute joint stories has been heartening. She explained, “Students learn about the biology of neurodegenerative conditions. These stories enable them to see the human side of the disease, what it’s like to live with it, and may help them develop programs that help these families live better. In addition to the stigma, there’s a tendency to write off people with dementia.”

Ms. Dowden said she is currently refining the workshop curriculum so that it can be used as a model for other institutions to replicate. She is also expanding it to include mother-daughter and sibling pairs.

She realizes, of course, that a storytelling workshop may not be suitable for every couple. “It’s not good if there’s a lot of behavioral issues, a lot of conflict, and no insight,” she said. “But for those it does fit, it’s an opportunity to tap into the core of relationships, to still grow and learn and be delighted by one another.”

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Think Like a Doctor: The Boy With Nighttime Fevers Solved!

Andreas Samuelsson

On Thursday we asked Well readers to take on the case of a 7-year-old boy who’d been having fevers and drenching sweats nightly for over a month. More than 300 of you wrote in, and although 20 of you came up with the right diagnosis, only three of you figured out both the diagnosis and the test needed to confirm it.

The correct diagnosis is…

Coccidioidomycosis, or valley fever.

The diagnosis was made based on a lymph node biopsy.

The first reader to suggest this diagnosis and the test was Dr. Malkhaz Jalagonia, an internist from Zugdidi, in the Republic of Georgia. He says he’s never seen a case like this, but he’s fascinated by zebras and so recognized the disease immediately. Well done, Dr. Jalagonia!

One of the reasons I chose this case was that, although this diagnosis is rare in life, it was the most frequently suggested diagnosis in my last column – the one about the middle-aged man with a cough for over a year. I thought it would be fun to show what valley fever really looks like. Hope you did too.

The Diagnosis

Coccidioidomycosis is a lung infection usually caused by inhaling the spores of a tiny fungus called coccidioides. This organism grows as a mold, a few inches below the surface of the soil in deserts in parts of the southwestern United States, Mexico and other countries of Central America.

In dry conditions, the fungus becomes fragile and is easily broken up into tiny single-celled spores that can be sent airborne with even the slightest disturbance. And once these single cells are aloft they can remain suspended there for prolonged periods of time.

Infection is usually acquired by inhaling the spores. Once lodged in the lung, the organism begins to reproduce almost immediately. The time course between exposure and disease depends on the inhaled dose and the patient’s immune system.

Symptoms, or No Symptoms

Disease severity varies considerably. Nearly half of those who breathe in these spores have no symptoms, or symptoms are so mild they never visit the doctor’s office.

More severe infection usually takes the form of a slowly progressive pneumonia known as coccidioidomycosis, or valley fever. This illness is characterized by a cough, fevers, chest pain, fatigue and sometimes joint pain. Indeed, because of the prominent joint pain, in some cases — though not this one — the disease is also known as desert rheumatism.

Rashes are also seen in many patients. Those who get a rash seem to have a more benign course of illness. The thinking is that the skin symptoms are the result of an aggressive immune response in the host to the pathogen.

Symptoms can last for months, and in many cases they resolve without treatment. But in some cases they get worse.

Hard to Diagnose

Those who seek medical attention are often not diagnosed — or not diagnosed quickly — because the symptoms of valley fever are not very specific, and few of the tests that doctors usually order have features that are unusual enough to suggest the diagnosis.

Chest X-rays are often normal. Blood tests may be normal as well, though some patients, like this child, have an unusually high number of a type of white blood cell known as eosinophils. These cells are usually seen in allergic responses or with infections due to parasites.

The most important clue to the possibility of this infection is travel to one of the areas where the fungus lives. In the United States, valley fever is endemic primarily in Arizona and southern California, as well as parts of southern New Mexico and West Texas. Indeed, the name valley fever is a shorter and more general term for an earlier name, San Joaquin Valley fever, because it was so common in that part of California.

A Dramatic Rise

There has been a significant increase in the number of cases of coccidioidomycosis in the past 15 years, with nearly 10 times as many in areas where the fungus is found. Development in areas where the fungus is endemic is thought to be the primary cause. Better diagnostic testing may also play a role.

While this infection may cause only a minor illness in many, there are some – like this child – for whom the disease can spread beyond the lungs into the rest of the body. Disseminated coccidioidomycosis is usually seen in those with some problem with the immune system – an underlying disorder such as H.I.V., for example, or because someone is taking immune suppressing medications such as prednisone.

Once out of the lungs, the bugs can go anywhere in the body, though they seem to prefer joints, skin or bones. Those with disseminated disease have to be treated for a long time – often up to a year, or occasionally for life.

How the Diagnosis Was Made

The little boy had been sick for nearly a month, and his parents were getting quite worried. He was pale, thin and really, really tired.

With their pediatrician’s encouragement, they had gone on a long planned, much anticipated vacation to the mountains of Colorado. But the child wasn’t getting better, and so his mother took him to yet another doctor – this one in a walk-in clinic.

The results of some simple blood tests done at that visit worried the doctor, who suggested that the boy be taken to a hematologist, a specialist in diseases and cancers of the blood.

Now the parents were terrified. The mother faxed copies of the lab results to her brother, a researcher in immunology. He wasn’t a physician but showed the results to friends who were. They agreed with the doctor at the walk-in clinic: The boy needed to be seen by a hematologist.

A Series of Specialists

The next morning the family headed home to Minneapolis. They took the boy to his regular pediatrician, who sent them to a hematologist. It wasn’t cancer, that specialist told them. Maybe some kind of severe food allergy, he suggested, and referred them to a gastroenterologist.

Not a GI thing, that specialist told them, and he referred the now nearly frantic family to an infectious disease specialist and a rheumatologist.

Nearly 10 days after getting the alarming blood test results, the couple and their child found themselves in the office of Dr. Bazak Sharon, a specialist in infectious diseases in adults and children at the University of Minnesota Masonic Children’s Hospital. After introducing himself, Dr. Sharon settled down to get a detailed history of the boy and the family.

A Desert Visit, but Other Possibilities

When Dr. Sharon heard that the family had spent a week at a ranch in the desert of Arizona, he immediately thought of coccidioidomycosis. The fungus isn’t found in Minnesota or Colorado – which is probably why other doctors hadn’t considered it. But it is all over the part of Arizona where they’d visited.

Still, there were other possibilities that had to be ruled out, including some types of cancer. After Dr. Sharon examined the boy, he sent the family to the lab for a chest X-ray and some blood tests.

The results of those tests were concerning. The child was getting worse. Dr. Sharon wasn’t going to be back in clinic for a week, and he was certain the child needed to be seen and diagnosed well before then. He called a friend and colleague who was taking care of patients in the hospital, Dr. Abraham Jacob, and asked if he would admit the child and coordinate the needed diagnostic workup for the boy.

First Some Answers, Then More Questions

Once in the hospital, the child had a chest CT scan. The results were frightening. The lymph nodes that surround the trachea, the tube that carries inspired air to the lungs, were hugely enlarged. They were so big that the trachea was almost completely blocked. The opening at one point was just two millimeters wide – basically the dimensions of a cocktail straw. Any worsening of his disease might cause the tube to close completely, making breathing impossible.

A pediatric surgeon was brought in immediately. The enlarged lymph nodes had to be removed. First in order to protect the child’s airways. And second because those nodes would reveal what the little boy had.

But trying to do surgery on a 7-year-old boy’s neck was complicated. Although the surgeon could easily feel the enlarged gland in his neck, it was close to many vital blood vessels, nerves and organs. The child had to lie perfectly still, and with most children that could only be guaranteed if they were under anesthesia.

Risky Surgery

When the anesthesiologist saw the CT scan, the doctors’ concern grew. They could put the child to sleep, but if anything went wrong during surgery and they had to put a tube down his throat into his lungs, they weren’t sure it would be able to fit.

The trachea was so small, there was no guarantee they could get the tube into place. In order to do this safely, they said they needed to use a technique known as ECMO, or extracorporeal membrane oxygenation – basically a machine that allows them to oxygenate blood without sending it to the lungs.

Rather than subject the child to this risky procedure, Dr. Jacob and the surgeon decided to just take a piece of the lymph node out in order to make the diagnosis. Treatment of whatever the boy had would bring the size of the lymph node down.

Don’t Make a Move

When the boy was brought to the procedure room, the surgeon explained that he was going to put numbing medicine all around the bump in the boy’s neck and take out a piece of it. The child listened calmly and agreed.

He wasn’t to move at all, the surgeon explained. The child nodded solemnly. He understood. The boy was remarkably mature and so brave throughout the entire process of anesthetizing the region that the surgeon thought he might be able to continue and get the entire node out.

He paused in his surgery and consulted the parents. Would they allow him to try this? Their son was doing so well he was sure he could get it. They agreed, and the surgeon returned to his task. The lymph node came out without difficulty.

It was sent to the lab and the answer came back almost immediately. The swollen tissue was filled with the tiny coccidioides. You can see a picture of these little critters here.

A Year of Medicine

The boy was started on an intravenous medicine for fungal infections. Then after a week it was changed to one he could take by mouth.

Because the infection had spread beyond the lungs, the child will have to take this medication for a year. After starting the medication, the child began to look a little better. Slowly he was less tired. Slowly he started to eat the way he used to.

It was a long road to the diagnosis, and an even longer road to cure, but at least they were on the right one.

A Perfect Storm?

The mother called the ranch in Arizona where they stayed to let them know what had happened.
The owner told them that their son was not the only person visiting then who got sick. At least one other guest, there at the same time, had come down with the disease.

Apparently the conditions for spread were perfect. Their stay had started off with some rain, followed by heat and some brisk wind. The moisture helped the fungus grow; the heat dried it out so that it could become easily airborne and inhaled when lifted by the wind.

Although the family has loved their visits to this ranch – this was their second year – the child’s mother tells me that she’s not sure she’ll be going back, at least for a couple of years. Most people exposed to valley fever become immune forever, but because her little boy was so very sick, she’s planning to wait a while before they return.

My Brother, the Hospice Graduate

Giselle Potter

When I was a college sophomore living in a sorority house at the University of California at Santa Barbara, my parents called to tell me that my baby brother, Gavin, was dying. He had been given a diagnosis of a very rare disease, Aicardi–Goutieres Syndrome.

The doctors immediately placed him in hospice care.

He was 4 months old.

I hung up the phone and rode my red beach cruiser to class, trying to pretend that it was like any other day. I sat through Spanish class, but stared off into the distance, numb to what was happening. When I emerged, the sun seemed too bright. People were laughing, talking on their phones, surfing waves at sunset and meeting up with dates at coffee shops.

I thought back to Gavin’s birth in June. He looked like the rest of the babies in our family, with a thick pad of blond hair. A happy baby. Then at 6 weeks old he started having fevers of 104. They turned into weeklong affairs. And no one knew why.

My parents and Gavin’s doctors tried, for the next few months, to solve a seemingly unsolvable case. We just wanted to know what was wrong. But when we finally had the right diagnosis, it was awful. His disease had triggered brain calcifications, causing permanent brain damage. He was going to lose his motor skills and be unable to eat, so he would eventually die, we were told.

At first, I wanted to avoid dealing with the situation. The playground feeling of my oceanfront college campus was in stark contrast to the atmosphere at home, where my devastated family waited, heartbroken. My impulse was to stay away. I didn’t want to be crushed by the grief that was promised to me.

But I also knew I couldn’t live with myself if I never tried to face it. So I dropped out of college and spent every day with him and the rest of my family, including my sisters, who were 9 and 14 at the time.

Gavin’s disease showed up like Louisiana rainstorms — quick, strong and mean. Sometimes he was the handsome baby who smiled at me with his innocent blue eyes. Then, it was as if he was gone. Possessed. His fevers were now paired with jitters and vomiting. Gavin would shriek uncontrollably, turn a pasty gray and roll his eyes in different directions.

Mom called these visits from the Monster.

The hospice nurses stopped by every week to check Gavin’s temperature and weigh him. There was no handbook on learning to love your dying baby brother, but eventually, I did. Instead of hiding from the Monster — when his body shook, his lips turned jelly purple, and drool spilled from his mouth — I looked at him and said: You are worth it.

With his impending death sentence, Gavin was baptized in an oversize white gown. Mom wanted his soul to be protected.

After the ceremony, we played a slideshow of his short life. I saw a picture of me holding him and thought to myself, how could I not love you? We all loved him, the best way we knew how.

My parents did not give up on him, even though he was on hospice. A major change came when a friend of my mom’s who was an occupational therapist suggested the Haberman bottle, a baby bottle with an elongated nipple for children with special needs. Part of the reason Gavin was in hospice care was that he could no longer breast-feed and it was hard to get him nutrients. But he took pumped breast milk through that bottle.

And somehow his demise never came.

On Gavin’s first birthday he was taken off hospice: a hospice graduate.

The journey shifted. Instead of waiting for a baby to die, we were learning to love and live with a handicapped boy.

Now, Gavin is 9 years old. He is a quadriplegic; he cannot walk, talk or eat solid foods, but he is a survivor. He is joy.

That doesn’t mean his life is easy – for him or for the rest of the family.

Every morning one of my parents carries him downstairs around 7 a.m. They sit him in an egg-shape chair in front of the TV to watch cartoons, usually “SpongeBob” (he’s graduated from “Sesame Street”). His breakfast usually involves bran cereal for digestion, a fried egg, a couple of blueberries, maybe a waffle, sometimes crispy pork sausage. All of that is put into a coffee cup with whole milk and butter, and puréed with an immersion blender.

Gavin’s three epilepsy medications get pulled into plastic syringes. Then the hero of the morning carries a tray, with a handful of towels and a water cup, along with the delicious breakfast surprise and medicine into the TV room, and the real work begins.

Feeding Gavin can take up to an hour. And it can be messy. Sometimes he spits up his food, other times he is just not feeling well and he lets it roll down his chin, onto his neck.

Gavin’s life includes physical therapy, occupational therapy and speech therapy. But it also includes floating in the pool in a life vest, going to school and even gleefully crossing the finish line in a marathon – with my husband pushing him in a stroller.

Instead of dismantling our family, he has brought us closer together. We treasure Gavin’s small accomplishments, whether that is running down the driveway in his special gait-training walker or using an eye-gaze communication device or nodding to let us know that he wants to use the bathroom, play with his sister or bounce on the trampoline.

We don’t know what his future looks like. But we don’t know what the future looks like for any of us. The mystery of his life is no different from any of ours.

Courtney Lund is working on a memoir about her brother.


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