Tag: Live

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.

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.

Weight Has Greater Impact on Diabetes Than Heart Disease

Carrying excess weight may have a greater impact on the risk for diabetes than it does on the risk for heart disease or early death, a new study has found.

To look at the effect of obesity independent of genetics, Swedish researchers followed 4,046 pairs of identical twins whose average age was 58. One of the twins was overweight, and the other was not. Since identical twins have the same genes, their weight difference could not be attributed to genetics. The study is in JAMA Internal Medicine.

After accounting for physical activity, smoking and educational level, the researchers found that having a higher body mass index, or B.M.I. — even among those in the obese range of 30 or higher — was not associated with an increased risk for heart attack or death. But a high B.M.I. was associated with an increased risk for diabetes.

“Based on these results, the association between obesity and cardiovascular disease is explained by genetic, not environmental, factors,” said the lead author, Peter Nordstrom, a professor of geriatric medicine at Umea University. “Unfortunately, this also means that environmental factors that reduce obesity do not reduce the risk of cardiovascular disease or death. But they most certainly decrease the risk for diabetes.”

Think Like a Doctor: The Boy With Nighttime Fevers

The challenge: A healthy 7-year-old boy suddenly starts having fevers and night sweats. Can you figure out why?

Every month, the Diagnosis column of The New York Times Magazine asks Well readers to sift through a difficult medical case and solve a diagnostic riddle. This month we present the case of a boy who has fevers topping 102 degrees every night for over a month. His parents sought help from nearly a dozen doctors in two states before a diagnosis was made.

Below I’ve given you the information that was available to the doctors who figured out the cause of the boy’s fevers. It’s up to you to use this information to put his story together for yourself.

As usual, the first person to crack the case gets a copy of my book, “Every Patient Tells a Story,” and, of course, that fabulous feeling you get when you solve a really tough puzzle.

The Patient’s Story

“I think you need to take him back home.” Her brother’s voice was calm, but she could hear an undertone of anxiety even over the poor cellphone reception that was all she could get from rural Colorado. “He needs to see a hematologist. It could be a virus, but it could also be something else.” He didn’t say it, but she knew what he was thinking: cancer.

Her son, just 7 years old and always a little delicate, had been sick for nearly a month. He was fine during the day, but every night he’d spike a fever of 102 or 103.

Even before they’d come to the mountains for a much needed vacation, she’d taken him to see his pediatrician at home in Minneapolis several times. At each visit, the doctor or one of his partners had looked the boy over closely, and each time he’d seemed fine.

It was probably viral, she was told, time after time. But he seemed to be having one viral infection after another.

A Vacation Cut Short

The day before they left for Colorado, the boy’s father took him to the doctor’s office one more time.

Maybe it wasn’t viral, the pediatrician acknowledged, and prescribed a “Z-pak” — a five-day course of azithromycin. Don’t cancel the trip, the doctor reassured him. He’ll get better.

But he hadn’t. While on vacation, his mother took him to a walk-in clinic, where they’d checked his blood. A worried looking doctor told her that he didn’t know what was wrong with her boy. He should probably see a cancer specialist.

Now she was really worried. There weren’t any specialists anywhere near the bucolic town where they were staying. That’s when she’d sent the test results to her brother, a researcher in immunology. He wasn’t a doctor, but he passed the results to friends who were, and they were worried, too.

Thin and Pale

The family headed home right away, but the 4th of July was coming. They couldn’t get in to see a hematologist until Tuesday.

By now the boy was starting to look sick. He was pale and had dark circles under his eyes. Small for his age — consistently in the fifth percentile for height and weight — he now looked even smaller, thinner. He was a quiet child, always had been. Thoughtful and comfortable in the company of adults, as so many only children are. Even now he never complained.

Nothing hurt. He was simply tired. His fevers started coming a little earlier, peaking a little higher. His mother noticed a cough and wheezing sometimes. Always a picky eater, with these intermittent fevers, very few foods seemed appealing. She tried to hide the terror she felt when he seemed to be fading as she watched.

A Long Line of Specialists

The hematologist examined the boy and sent off more blood. Definitely not cancer, he said. He suggested seeing a gastroenterologist.

The gastroenterologist got an M.R.I. of the child’s digestive system. Nothing there. He noticed the boy’s wheezing and gave him an inhaler, then referred mother and child to a rheumatologist and an infectious disease specialist.

It seemed to the parents that this had to be an infection, but the earliest they could get in to see the infectious disease doctor was the following week. For the boy’s mother, the delay now seemed intolerable.

It had been five weeks since the fevers first started. In that time, the boy had lost nearly 10 pounds. They’d seen eight doctors in two states. They’d all been very nice, thorough, thoughtful, but had no answers.

By the weekend she was desperate. The boy needed to be in the hospital. Couldn’t they see how sick he was? She couldn’t wait for the specialist. She took him to the emergency room of the big university hospital.

The E.R. doctors, like all the doctors they’d seen so far, were kind and thoughtful, and so gentle with her delicate son. But like all the other doctors, they had no answers. They prescribed another inhaler for the boy’s wheezing, since the first hadn’t helped. They also urged her to see the infectious disease specialist. His appointment was just a couple of days away.

TB or not TB?

The boy was sitting quietly between his parents watching a video on his tablet when Dr. Bazak Sharon and the infectious disease fellow he was training entered the exam room. Dr. Sharon’s first thought was that the child looked as if he had tuberculosis.

He’d seen a lot of TB in this clinic, but it was usually among immigrant families who had traveled to Minneapolis from countries where the disease was common. Like this boy, kids with TB were usually thin, sickly looking, pale and quiet. But based on what his fellow told him, the child had no exposures that would put him at risk for this disease. He’d only been out of the country once – to Canada. He’d visited the beaches of South Carolina and the deserts of Arizona, and most recently the mountains of Colorado. But TB was rare in all these locales.

Dr. Sharon introduced himself to the child, who looked up immediately and smiled. How do you feel, he asked the boy? His temperature had been recorded at 103 degrees. I feel good, he’d answered pleasantly. Does anything hurt? No.

His heart was beating rapidly – nearly 140 beats per minute, but that was probably due to the fever. There were several enlarged lymph nodes in the child’s neck and his groin, though none under his arms. Otherwise his exam was unremarkable.

Getting Worse

Dr. Sharon had reviewed the blood tests that had already been done but wanted to see if anything had changed. And given that the only localized complaint was cough and wheezing, he wanted to get another chest X-ray.

Reviewing those studies that night, Dr. Sharon saw that the boy was slowly getting worse. He saw patients at that clinic only once a week and was reluctant to wait that long before having him seen again. He thought they needed an answer much sooner than that.

You can see the note from Dr. Sharon and his fellow here.

Dr. Sharon’s Note

The note from the patient’s visit to the hospital.

To the Hospital

Dr. Sharon called the family the next morning. He’d reached out to one of his friends and colleagues, Dr. Abraham Jacob, who could see them. They should go to the University of Minnesota Medical Center Fairview, where Dr. Jacob would orchestrate a thorough workup. That would be the fastest way to get an answer.

Based on the assessment by Dr. Jacob and his resident and the recommendations from Dr. Sharon, the team reached out to specialists in hematology-oncology and in rheumatology. And since his chest X-ray was abnormal and he had enlarged lymph nodes, they wanted to get a CT scan as well.

You can see the note from Dr. Jacob and his resident here.

Dr. Jacob’s Notes

Here are the notes from the pediatrics department.

Breathing Through a Straw

It was the results of the CT scan that really got things moving. It was the middle of the day when the resident was paged by the radiologist. The pictures showed that the lymph nodes in the boy’s chest were so swollen that they were pressing on the trachea – the breathing tube – so that it was almost completely cut off. Essentially he was breathing through the equivalent of a cocktail straw.

Any additional swelling could cut off the boy’s breath completely. You can see an image from the CT scan here.

This CT scan shows the patient’s chest. In a child of this age, the trachea is normally eight to 12 millimeters wide. Much of the gray tissue surrounding the trachea and esophagus is swollen lymph nodes.

This CT scan shows the patient’s chest. In a child of this age, the trachea is normally eight to 12 millimeters wide. Much of the gray tissue surrounding the trachea and esophagus is swollen lymph nodes.

A normal trachea in a child this age is four to six times the size seen in the scan. The image added even more pressure to make a diagnosis and treat the child before he got sicker.

Solving the Mystery

A diagnosis was made within the next 24 hours. Can you figure out what the boy had, and how the diagnosis was made?

The first person to offer the correct answers to these two questions will get a copy of my book and that sense of triumph that comes from nailing the right diagnosis when it really matters.

Rules and Regulations: Post your questions and diagnosis in the comments section below. The winner will be contacted. Reader comments may also appear in a coming issue of The New York Times Magazine.

Read Books, Live Longer?

Bryan Thomas for The New York Times

Reading books is tied to a longer life, according to a new report.

Researchers used data on 3,635 people over 50 participating in a larger health study who had answered questions about reading.

The scientists divided the sample into three groups: those who read no books, those who read books up to three and a half hours a week, and those who read books more than three and a half hours.

The study, in Social Science & Medicine, found that book readers tended to be female, college-educated and in higher income groups. So researchers controlled for those factors as well as age, race, self-reported health, depression, employment and marital status.

Compared with those who did not read books, those who read for up to three and a half hours a week were 17 percent less likely to die over 12 years of follow-up, and those who read more than that were 23 percent less likely to die. Book readers lived an average of almost two years longer than those who did not read at all.

They found a similar association among those who read newspapers and periodicals, but it was weaker.

“People who report as little as a half-hour a day of book reading had a significant survival advantage over those who did not read,” said the senior author, Becca R. Levy, a professor of epidemiology at Yale. “And the survival advantage remained after adjusting for wealth, education, cognitive ability and many other variables.”

My Vacation With a Brain-Eating Amoeba

Water rushes along the course at the National Whitewater Center at dusk. The chlorination and filtration systems at the artificial water rapids course were inadequate to kill a rare, brain-attacking organism this summer.

Water rushes along the course at the National Whitewater Center at dusk. The chlorination and filtration systems at the artificial water rapids course were inadequate to kill a rare, brain-attacking organism this summer. Robert Lahser/The Charlotte Observer, via Associated Press

I expected a bumpy ride on a whitewater trip, so when I fell off my raft and coughed up the water I’d inhaled, I wasn’t afraid. But at the time I didn’t know I was swimming with a deadly parasite.

I’d been at a bachelorette party at the U.S. National Whitewater Center in Charlotte, N.C., but after returning home I learned that I had shared the churning rapids with Naegleria fowleri, a single-celled amoeba found mostly in soil and warm freshwater lakes, rivers and hot springs. An Ohio teenager had contracted the amoeba infection after visiting the center around the same time I did, and some of the waters and sediment at and around the center had tested positive for the bug.

News that my friends and I had all been at risk of exposure triggered a few days of worry. The illness is rare and, if infected, symptoms show up between one and 10 days after exposure. Chances were that we were fine (we were), but the experience prompted me to learn more about the parasite.

Naegleria fowleri lives in fresh water, but not in salt water. If forced up the nose, it can enter the brain and feed on its tissue, resulting in an infection known as primary amebic meningoencephalitis. Death occurs in nearly all of those infected with the parasite, usually within five days after infection.

The 18-year-old Ohio woman who died most likely contracted the parasite when she sucked water through her nose after falling from a raft during a church trip.

Samples from a channel at the rafting center, collected by the Centers for Disease Control and Prevention, tested positive for the bug. The center’s channels are man-made, and it gets its water from the Charlotte-Mecklenburg Utilities Department and two wells on its property. The center has announced that it disinfects all water with ultraviolet radiation and chlorine, and it added more after the water tests.

Sediment from the nearby Catawba River, where visitors to the center can paddle board and kayak, also tested positive for the amoeba, although the actual water from the river did not test positive. Dr. Jennifer Cope, an epidemiologist at the C.D.C., said natural bodies of water might have their own ways of controlling the bug. The parasite possibly entered the artificial river through storm water runoff or people tracking it in on their shoes, said Dr. Cope.

Between the time of the young woman’s visit in early June and when the whitewater center voluntarily shut down its rafting activities a few weeks later, thousands of people could have been exposed to the parasite, but there were no additional reports of infections.

“The interesting thing about this infection is it’s almost always one single case that occurs in one location,” said Dr. Cope.

Experts say record-breaking temperatures that week may have enabled the presence of the bug, which thrives at warmer temperatures, and murky water possibly disrupted the effectiveness of the UV and chlorine disinfectant.

The amoeba is more frequently reported in southern states, especially Florida and Texas in the summer. However, after the C.D.C. received a report in Minnesota in 2010, they started tracking the bug to see how climate change might be influencing its habitat. Infections have also been documented in Kansas and Indiana. According to Dr. Cope, cases in Minnesota and other places have followed heat waves or a number of days where the temperature was above 90.

According to the C.D.C., since 1962 only 138 people have been infected, and all but three of them have died. Between 2006 and 2015, there were only 37 documented infections, mainly associated with recreational swimming, but one involved contaminated water on a slip-n-slide, and three cases were from rinsing sinuses with infected tap water, including two involving Neti pots.

Clearly, Naegleria fowleri is not your biggest risk in the water. By comparison, between 2005 and 2014, 3,536 people — which averages to about 10 a day — died of unintentional drownings in the United States.

“Millions of people participate in water activities all the time, and this is a very rare infection,” Dr. Stephen Keener, the medical director for the Mecklenburg County Health Department, said at a press conference. “It’s not the kind of thing where just getting in the water with Naegleria is going to cause you to get sick.”

There are ways to reduce exposure, and even though the risk of infection is low, you should follow them. Avoid putting your head under water in hot springs or other warm, fresh bodies of water. If you do go under water, hold your nose, or use nose clips if you know there is a risk of submersion. Avoid digging scum and sediment up near the water. Avoid fresh water activities during very warm weather, which is not very practical advice for people who enjoy swimming or water skiing in lakes or kayaking in streams and rivers. But you can remind yourself about precautions, especially after several days of 90 degree weather.

“Living in Arkansas, one of my favorite things to do is spend time at the lake,” said Dr. William Matthew Linam, a physician at Arkansas Children’s Hospital, in an email. “Having said that, I make my children hold their noses if they are going underwater.”

If you’ve been playing around in warm fresh water, especially during summer months, and come down with a headache, fever, nausea or vomiting, experts say to tell your doctor where you’ve been. And the sooner the better. Later symptoms include stiff neck, confusion, loss of balance, seizures and hallucinations.

Dr. Linam thinks early detection is critical. In 2013 he saved a 12-year-old girl named Kali Hardig, who was exposed at an Arkansas water park and is one of only three documented victims of the amoeba to ever survive the infection. He called the C.D.C. immediately, and the amoeba was found in a sample of her spinal fluid. He administered a cocktail of drugs that the C.D.C. has proven effective in the lab, including miltefosine, a breast cancer drug that the C.D.C. is working to make available in hospitals in Texas and Florida, where reports are more common.

But “even with early detection and treatment, survival is not guaranteed,” he said.

Would I go whitewater rafting again? Yes. But probably only on a cool day. And I’d wear nose plugs.

Watching TV Tied to Fatal Clot Risk

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The more television you watch, the greater your risk for a fatal blood clot, according to a new study.

Japanese researchers studied 86,024 generally healthy people who filled out questionnaires with items about health and lifestyle, including time spent watching television.

During a follow-up of more than 19 years, there were 59 deaths from pulmonary embolism, a blood clot that travels from another part of the body to the lungs.

After adjusting for other factors, they found that compared with watching TV less than two and a half hours a day, watching for two and a half to five hours increased the risk for a fatal clot by 70 percent, and watching more than five hours increased the risk by 250 percent. For each extra two hours of watching, the risk of death rose 40 percent. The effect was independent of physical exercise.

“Television watching is likely to be uninterrupted,” said the lead author, Dr. Toru Shirakawa of Osaka University, and prolonged sitting increases the risk for embolism. “Take a break, stand up, walk around. Drinking water is also important.”

The study, in the journal Circulation, is observational, so it can’t determine cause and effect, Dr. Shirakawa said, but “the dose-response relationship between time spent watching and the risk of mortality from pulmonary embolism would be strong evidence for a causal relationship.”

Cancer in the Family: Compliments on Being Thin

The author with her daughter, Devon.

“I’m so jealous. You’ve lost so much weight, you look amazing,” a friend says to me. “I’d love to catch the stomach bug this year and lose a few pounds myself.”

I smile. I don’t know what to say.

Since January, one of my 12-year-old twin daughters, Devon, has been in isolation in a Boise, Idaho, pediatric oncology unit receiving chemotherapy for acute myeloid leukemia. Her sister, Gracie, remains behind, in a little town south of Sun Valley. To cope, she has assigned herself as captain of Devo’s Fight Club, a band of peer supporters started with a sweatshirt she designed in the first 36 hours of her sister’s diagnosis.

Their dad and I have been driving the two and a half hours between home and hospital, splitting the week between our daughters, our jobs, middle school’s demands, puberty’s capriciousness, sports, music and running a household that includes cats, dogs, horses, cows and fish.

Devon’s cancer was as random as a dice roll. She had swollen gums for a week and then, a simple blood test to rule out mono instead declared that this sleek, athletic, freckle-faced cowgirl had a rare and often fatal leukemia.

My husband says he has gained weight since Devon’s diagnosis. I have lost weight. A lot. Neither one of us notices the other because we relate over phone or email mostly, and offer a country-style, four-finger half wave from the steering wheel as we blow past each other on the highway between towns.

Over the next 120-mile drive I am perplexed and obsessive.

“I’m so jealous. You look amazing.”

I’m nearly 51 years old and was prepared for the idea that menopause would keep me round despite my best efforts. How much weight have I lost? Was I really that fat before? Should I eat before I get to the hospital or after? The smell of food makes Devon sick. Eating in front of her seems torturous and unfair.

After I arrived at the hospital, a friend stopped by to visit. Before acknowledging Devon, she looked at me. With purrs of envy, she commented on how thin I looked. Again, I was at a loss for words. My daughter was not.

“My mom is not skinny because she worked at it,” Devon told our visitor. “It’s because I’m sick.”

The friend waved it off in the way that one deflects praise of a nice outfit with “this old thing,” and we all moved on. But every time someone notices my weight loss with a tinge of envy it makes me cringe.

Please, I want to tell them, do not admire how thin I have become since my daughter’s diagnosis — unless you are suggesting I look undernourished and want to give me a cupcake. My weight loss is not a goal you should aspire to, nor should it be confused with health and well-being. I was perfectly happy and fit in my pre-cancer-kid size, and a little hurt to hear that this shrinkage that could cost me a lot more than new pants makes me more beautiful than ever.

But what is most painful for me is the collateral damage to my daughters. When they hear that Mom is enviably thin, they hear that this is a reward, a take away for the suffering. That thin is best no matter the circumstances.

Gracie, a minute ahead of her twin, but always an inch and a pound behind, is now getting stretch marks from growing so fast. When her peers note how she “swims” in her choir dress, her mind begins the dance with body consciousness. Weight fluctuations are somewhat inevitable in adolescence and during menopause, but certainly magnified under the circumstances.

Devon’s physical changes are pushed to the bottom of most people’s thoughts now, because in this setting of a hospital room, she’s supposed to look wan and pale. Instead, her inner beauty and sense of humor are noted.

I’ve been sick and thin enough times to know I don’t want to be either. But my girls are facing this for the first time, and the ripple effects of this entire traumatic episode will surface the farther we get from the cancer. Hospital social workers are preparing us to watch for anxiety, regression, depression, eating disorders, apathy and sleeping issues. And signs of cancer returning, of course. And survivor’s guilt in Gracie, which could carve out a whole new emotional journey.

Devon, thankfully, is home now. But I’ve just been told that five months in the hospital have cost Devon nearly a third of her body mass. That her overall strength is that of a 90-year-old, and that after the chemo, her heart, which once pounded fearlessly, is in danger of failing. Her brain is wobbly from the lack of nutrition and her skin is translucent and cold where it once was earthy and warm.

When she returns to school next year, navigating the social riddle of middle school — now half a year behind her peers — and still mostly bald, and undoubtedly still thin, she will return with a self-consciousness she has never known.

Do not covet her thinness. Admire her resilience, and tenacity, and sheer will to live.

And, if you look into her eyes and you can see they are dim from the struggle, a happy-to-see-you smile or just saying nothing at all will do more than you know to help her find her way to loving herself as life has created her in this moment.

If you want to know how someone is, look in their eyes, because their size is not where the information is.