Mystery Diagnosis--The Streak

Sometimes it’s easy to figure our why parents call when they do.  If a child is sick, most parents have no problem recognizing this.  Most people are empathic enough to sense when a person has difficulty breathing, or is in pain or distress of some sort.


Sometimes, this is a language problem.  It’s probably not a great idea to speak loudly about a movie that bombed at the box office while going through airport security.  And it always gets my attention when parents tell me that their baby had a hard time breathing last night.  True, a complaint like this is one that will usually get a doctor’s attention.  But if you take advantage of this too often, the doctor could decide you are just crying wolf, and gradually take your complaints less seriously.  


Today, a nice couple came in to the office with their baby.  They had been up all night and said that the baby was having trouble breathing.  I sat up.  Maybe I didn’t really sit up, but instead slouched a little less than I usually do.  After several minutes of interrogation-like questioning, it was clear what the baby’s real problem was.  He was having trouble breathing…through his nose.  This can be a real nuisance for a nursing baby, since they can’t really nurse and breathe at the same time with a stuffy nose.  Still, from the doctor’s point of view, it’s a long and reassuring distance from having trouble breathing.


There are also parents who are generally less anxious.  I try and fail to contain my surprise when a child is brought to me with severe symptoms that have been going on for a long time.  Every doctor has cases like this, some tragic.  For pediatricians, a typical example would be asthma.  Several times a year a child comes in whose parents say that she’s coughing.  For how long, I ask.  ‘Maybe a year,’ they say.


I don’t fault these people.  If the kid was really in trouble, they would have sought help right away.  For some, coming to the doctor is a logistic nightmare consisting of taking time off from work, getting the kid transported, parking expenses, and lots of other incidentals.  (As an aside, it’s easier if the kids actually like going to the doctor.)  Besides the general pain-in-the-neck quality to doctor visits, there’s a natural inclination—often correct—to believe that medical problems that aren’t too bad will probably get better on their own.  Even though I am often sent unusual and difficult cases, many times I have to tell parents that I don’t know what is causing the symptoms they report.  


This brings up an extremely important but subtle part of good medical education and experience.  Some people believe the smartest doctors can diagnose the most exotic problems.  That’s certainly a great and useful skill.  But in primary care practice, especially pediatrics (and, I suspect, geriatrics) where the patients often can’t answer your questions, it’s often most important just to be able to tell worrisome or not.  So though I didn’t know exactly why the baby was congested, I had no idea why the baby was fussy last night, and I didn’t know if the fussiness would happen again tonight, I was confident that the baby was generally OK and would continue to thrive despite having a stuffy nose.


This ability to assess some kind of worry-worthiness grading system seems to be in all of us.  Obviously, some are more anxious than others, and they will grade a threat-level higher than others.  


So it’s not bad parenting that led to the call I got about 4:30 this afternoon.  A mom called and said that her daughter, 6, had a rash.  How long had the rash been there?  At least a month.  I asked more questions, and they decided to come to the office and let me take a look at it immediately, which I did tonight.  


Memory is a funny thing.  Sometimes a visual image will stick out like a stone in your shoe.  It’s pretty common for people to say that they know they’ve seen something before, but have trouble placing just when or where.  And I wish I knew why people can look so familiar but I just can’t come up with a name.  This happens to me locally all the time.  Someone will stop me in the supermarket, for example, and say, “Hi Dr. Wolffe.”  I return the greeting but don’t even recognize the person.  Then from another aisle comes grandma with the kids, and I’ll know exactly who they are.  I’m so focused on the children when they are here in the office that sometimes the adults look familiar, but without the kids they are sometimes hard to recall.


The mother said that this girl hadn’t been sick, and this developed over some period of time—she wasn’t really sure how long.  Maybe it was a week, maybe several weeks.  The girl said that it was itchy, but it hadn’t been scratched and she wasn’t scratching it in the office.  It was a little flaky, possibly a little red.  It didn’t hurt.  It had been there for at least a month.  It did feel a tiny bit raised, dry.  Mostly, though, the impression I got was that it was lighter than the surrounding skin and wound like the Andes from her upper arm to her wrist.


The first level of diagnosis, for me, is figuring out if I have to worry about it.  She had it for a month, for goodness sake, and the kid was none the worse.  She was happy and playful in my office.  I looked the kid over, and she was fine.  It’s certainly true that there are diseases that appear to get better and then return.  But most of the bad things generally just get worse, or at least don’t get better.  


The next question for me is if I know what this is.  I didn’t know.  But I knew I had seen it before.  But where?  What was it called?  I think that I am a reasonable diagnostician because I have real difficulty putting this aside and catching up with all the work I really have to do.  I eliminated the rashes that cause light streaks on the skin, but are there since birth.  I crossed off the ones that hurt or itch a lot or come from trauma of some kind.  And the ones that are very smooth or very rough or whorled like a cowlick.  So the diagnosis gradually came to me, but I hadn’t seen it in so long that I couldn’t be sure.  I excused myself from the exam room, and went to the computer in my little office.  It wasn't helpful.  I went to a reference textbook.  I looked up what it was…and I had been, well, close.  This was Lichen Striatus, a bizarre thing that preferentially appears in girls (no one knows why), of age 3-6 or so (no one knows why), usually affects a single extremity (no one knows why), and goes away by itself after some weeks to months (no one knows why).  No one knows what causes it.  It doesn’t seem to do any permanent damage, and generally needs no treatment.


(This is a good example, however, of the incremental information value of an analog book.  I was thinking right, and knew what kind of rash it was.  My first guess was indeed Lichen Striatus, but I couldn’t remember the right name.  I kept thinking, ‘Lichen…something.’  Honestly, I confabulated a last name for this disease.  I looked in the index for ‘Lichen Linearis.’  Seriously.  There is no such condition, and perhaps if my Latin training had been a little more thorough—or I had paid better attention—I would have realized this.  I had unintentionally taken a word from a real but unrelated problem called Lichen Planus Linearis (which I didn’t think this was), and stuck it in the empty spot, like a medical MadLibs game for doctor geeks.  I looked it up on the computer—but could not find the misnamed disease.  It was only when I went to the textbook and leafed through the index section starting with the word Lichen that a bell really rang for me.  Then when I saw the textbook pictures, I knew I was right.  This is the difference between going to the library to find a book on the shelf and getting the book, fully scanned, online.  Sometimes what is most valuable isn’t what you’re looking for, it’s what’s next to what you’re looking for.)


I forgot to ask the mom why, today, she called to have the child seen.  I’d be interested.

Headache in a 5-year-old

Molly, 5, had an eye problem. It was pretty common, and her eye doctor recommended that she wear a patch on one eye several hours a day. She didn’t mind this, and she and her parents picked out all different designs for the patch that might suit her mood or fashion requirement. Usually, the patch is worn over the stronger eye in order to force the weaker one to get more exercise. 

So when her mother told me that she had a headache, my first guess was eyestrain. It's a common cause of headache at almost any age. But still, 5-year-olds don't often complain of headaches.

Her mother was sympathetic. She told her child that she'd get some medicine for her that would help her feel better, and went to the cabinet where they keep the acetaminophen. It was only a few steps away, but Molly started crying. She said that it was still hurting. Mother repeated that she would give her some medicine that would help. Molly said that it wouldn't help. Mother said, calmly, that she thought it would and that after the medicine they would lie down in the bedroom together until she felt better. Molly said that it wouldn't help and that it was going to get worse and it was getting worse right now and she didn't know what was going to happen and that it was still getting worse and medicine isn't going to help and nothing is going to help and she was really scared. Molly was screaming by now, continuing to express her fear and pain. Mom had picked her up, of course, and was doing her best to settle her.
She did the best thing she could think of, and took her into the bedroom. They lay on the bed together, with Molly in her mother's arms. Soon, Molly fell asleep and was better a few hours later when she awoke. When mom told me the rest of the story, I told her I wanted them to come to the office so I could speak to Molly in person.
Fortunately, Molly is smart and talkative and likes me as much as I adore her. She told me that her eyes didn't hurt when this happened. Her mother told me that there really wasn't a family history of migraine.
Though in my training I received a little exposure to migraines, even now this is generally thought to be uncommon in children. I have a feeling that isn't right. I have diagnosed migraine in children as young as 5, and there is often a family history. Their symptoms are usually just like adult symptoms. I wonder if these kids have headaches or stomach aches from even younger ages, but lack the expressive language to tell us. In this way they suffer without relief, and their doctors never get the clues they need to make the diagnosis. I would guess that a toddler with a headache is pretty cranky. So I wonder if some emotional or behavior problems in these younger kids--who knows? maybe babies, too--could be resulting from this kind of invisible problem.

But Molly didn't fit an identifiable migraine syndrome. She didn't have any problem with her brain that I could find. 

I asked if she would get headaches when she was outside in the bright sun. Her mom said that she didn't have one when they went to the local county fair the previous weekend. They were outside all day. They went to the petting zoo--but she didn't go in. Her brother, just 2, had no hesitation and had fun with the gentle animals. In fact, the closer she got to the fence around the petting zoo, the more upset she had become. She even was scared to see her brother near the animals. I asked her mother about other things she was afraid of. 

The list was long. She was scared of just about any animal that was live, any bug of any kind but especially spiders, snakes, dark places including closets and under the bed. I asked Molly, and she was open with me. She said that she was afraid of being separated from her family, she was afraid that something bad would happen to her mother, to her father, to her brother, to all of them together, and to herself. She was afraid of strange and new places, new foods. She was afraid of snakes. 

Now, with a little more insight, I asked her about the headache. She said it had hurt. This time I asked her more about what she was feeling during the headache. She said that she was very afraid that it wasn't going to get better. She was afraid that her mother wasn't going to be able to help her and that would make her mother feel bad and it would be her fault.

It's always concerning to me when a 5-year-old complains of a headache. I think Molly had a headache, and I'm not sure what caused it. But though it's not in my textbooks, this is what a panic attack looks like in a preschooler. When I told her mother this, she was able to think of a couple of other unusual meltdowns that seemed to come out of nowhere. They weren't for the usual reasons, when a parent says that the child can't have ice cream for dinner or has to turn off the television. They weren't about defiance, they were about worry. And each time, her mother felt powerless to stop them. In many ways, these events might look behavioral. They include crying, perhaps screaming, maybe pounding fists or feet.

It's the panic attack that made her reaction spiral out of control. Her mother had the right treatment for a headache. Some acetaminophen, closing her eyes in a dark quiet room. But I had to give them something that could make the panic attack less traumatic for the child—and maybe for the mother, too.

I gave the mother a pair of questionnaires I give to parents to help me evaluate anxiety disorders in children. The responses were convincing.

Though Molly had a clear anxiety disorder, she had some big potential advantages as I considered her treatment options. She was smart, she was verbal, and she wasn't afraid of me. The first two points would enable her to cooperate in her treatment in important ways. The last one would, I hoped, enable her to accept my guidance without her anxiety interfering. I discussed treatment options with her mother. She, too, thought that Molly's particular trust in me was worth exploiting to help her. 

Often, with generalized anxiety that includes aspects of the diagnostic subcategories (such as social anxiety disorder, separation anxiety, phobias, and so on) medication is a reasonable approach. But we had these advantages, and her mom and I wanted to try and take advantage of them. We could always revisit a medication option if other approaches didn't work.

I could have sent her to someone really good at Cognitive Behavioral Therapy. In 5-year-olds.
This approach is designed to help patients recognize their dysfunctional thoughts, and manage them in a rational way. Though the technique is well-known in adult psychotherapeutic circles, it's not so well developed for kids. And certainly not with preschoolers. 

In the bigger picture, however, the effects of Cognitive Behavioral Therapy, I think, can be thought of in the same general pool with meditation, yoga, prayer, and clinical hypnosis. They all help people (nothing works for everybody—each helps some people) get relief from thoughts and feelings that are painful or harmful.

What her mother decided was to let me try to teach her self-hypnosis. 








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Mystery Cases, Mystery Medicine Part 1

Here’s how mystery cases typically present: Doctor, my kid has a fever. How’s he acting? Fine, playing as usual. But he has this fever.

If it were an adult patient, maybe it starts with: Doctor, I’ve been feeling a little tired recently. I just don’t have the energy I used to have.

Mystery cases don’t begin with a bizarre mixture of ankle pain, ringing in the ears, hair loss, and loss of feeling in the right thumb. And did I mention the canoe trip up the Ximim-Ximim River? The trip where you had to drink whatever water was at hand?

So mystery cases don’t start as mysteries, they just become mysteries over time. Usually.

This time is very different, and I will try to chronicle the case as it unfolds.

I received a call from a man who told me that his son had a stomach ache, and he wanted to come to see me.

The boy of 11 had severe abdominal pain for 8 months. Including last Spring, he’s missed a total of about 2 months of school. He has had some blood tests (don’t know what yet) and had an endoscopy (unclear as to which end, but I’d guess that somebody looked at his stomach with a TV camera to make sure he didn’t have an ulcer. If they got to an endoscopy, I have to assume they did some other imaging too, but I don’t know what. The father said that he was told everything is normal. He was advised to wait and see. He was recommended to me, but I’m not sure exactly by whom. Looked me up online, and got the impression that I wasn’t a ‘wait and see’ kind of doctor.

I am, in fact, often a ‘wait and see’ kind of doctor. But not when this kid’s in pain. This was going to take time, and if there were something that smart and perhaps more expert doctors than myself didn’t see or connect, it was not going to be obvious. I was booked solid, so I told him to meet me in the parking lot on Sunday, and I would open the building and open my office for him so we could have at least a couple of uninterrupted hours.

Here’s a mystery case from the first contact. It has already unfolded as a mystery. I think that might be tougher, actually. I’ll have to look through every test that was done and guess what other doctors were trying to look for or rule out. So there will be a lot of homework.

In this case, a father found me on his own. Sometimes I get referrals from other local doctors with difficult cases.

I am bothered most by a child in pain. Perhaps, as doctors are notorious for undertreating pain (especially in children and the elderly), this is really all about pain control somehow. Maybe it’s just that his previous doctors didn’t spend the time to get the whole story, thus missing some essential clue. I’m worried that I just won’t deliver a helpful answer, meaning one that will help the child.

Mystery cases only become mysteries when what you’re doing isn’t working, when what the patient’s disease is doing doesn’t fit with your expectations.

Sometimes, my job is to make a diagnosis. With a known diagnosis, so the theory goes, a known treatment can be applied for a known expected result. I say theory because there are plenty of diagnoses for which there are no effective treatments, so getting to the diagnosis is at best an academic exercise and at worst is costly and unpleasant. A good example is the common cold. There really aren’t good treatments for this basically benign disease. There are expensive exotic antiviral medications that might work if given early in the course of the disease, providing the cold is due, for example, to adenovirus and not rhinovirus. To determine this, one would have to have a nice sinus rinse (I don’t recommend it) at the first sign of a sniffle. This proud sample would have to be whisked off to a lab which has the capability of Polymerase Chain Reaction DNA amplification and analysis, and is willing to put aside the Ebola they’re working on so you can save half a box of tissues.

So I really look upon my job as making people better. Sometimes it’s through a diagnosis. Sometimes it’s just making them feel better.

Mystery cases, then, are more than just cases without a clear diagnosis. Every kid with a runny nose could be….

Maybe I should call this Dr. Wolffe’s First Law: Never ask your doctor, ‘What could it be?’ Yet that is one way I can approach a mystery case. As the doctor mixes in each new piece of information, many possibilities get ruled out and a few remain. Eventually, the doctor must make a decision. What’s possible? What’s likely? What fits best? Which diagnosis is the most important? Here’s an example. A kid is coughing, so much that he’s having a hard time getting a breath. Maybe it’s not asthma, and a steroid medicine won’t help him. In fact, he may have some other symptoms that don’t fit with asthma. But if it is asthma, and he doesn’t get the steroid medicine, he could be in the Intensive Care Unit in a matter of hours. If he gets the steroids, he could go to school tomorrow. It’s conceivable that I could choose to treat a diagnosis that is not the most likely, but is the most dangerous if I don’t treat it.

Tomorrow is Sunday, and I’m seeing this child and his family for the first time. The only thing I know for sure is that it is a mystery case.

Every Patient Tells a Story, Part 3

What, exactly, is a physician’s ethical obligation to a patient? Though not discussed in the book, Every Patient Tells a Story, the question lingers in my mind after a careful reading.

A man with chest pain is seen in the Emergency Room. They do all the appropriate tests to rule out a heart attack. They send him home. He told them about the tingling in his fingers, but they didn’t really consider it. Is the definition of the ER physician’s job to diagnose the patient? Or is it to rule out diagnoses? Many ER docs, I think, would like to diagnose a patient if possible. But if not, their basic responsibility is to rule out diagnoses that must be treated immediately or conditions for which the patient must be admitted. If you’re not acute, and don’t need to be admitted, you can go home. The ultimate decision node in the the ER decision tree is whether or not to send home. It’s not about what the patient has, it’s about what the patient doesn’t have.

Every Patient Tells a Story is the most important book I’ve read in years. Dr. Lisa Sanders discusses, through riveting case stories and her own accumulated insight, how diagnoses are made. Her own considerable experience in documenting case reports of unusual and difficult diagnoses, from years of writing the Diagnosis column in the New York Times Magazine, has left her in a unique position to see the diagnostic process in both minute detail and in overarching trends.

Again and again in the book, difficult and sometimes obscure diagnoses are presented as exciting detective stories. The stories wouldn’t have made it into the book, I suspect, if they were obvious or straightforward. Often, the right diagnosis is missed again and again, by generalists and by specialists. I’ll ask again, what is the obligation of the physician? Are there limits?

I like to think that I’m like the doctors described in some of these stories. When faced with a seriously ill patient without a working diagnosis, they are tenacious, nearly obsessed. They call their doctor friends, they contact experts they don’t know personally, and they go to the library.

A little girl I take care of was brought in by her mother. She had a fever for a couple of days, but wasn’t complaining of any pain or other symptoms. Her mother was particularly concerned about a tick she removed from the girl’s abdomen about a week before. They were at a lake house, and the 3-year-old was swimming naked. The tick was tiny, not engorged, and could not have been attached for more than a couple of hours. Mom removed the tiny thing with her fingernail. A day or two later, there was about 1 cm (less than 1/2 inch) of redness around a tiny black spot where the tick was. The redness went away in another couple of days, and until the fever, mother wasn’t concerned. Having gone to medical school in Connecticut, I feel pretty secure in my basic knowledge about Lyme disease (named for the town of Lyme, Connecticut).

Here’s why I reassured the mother that this was unlikely to be Lyme disease. Generally, transmission of the disease requires the tick to be attached for at least 24 hours. The classic rash of Lyme disease, erythema migrans, is one I’ve seen several times. It has the distinctive look of an archery target, and 70-80% of people who have Lyme get the rash. Here in California, the incidence of Lyme disease is about 2 cases per million people (some other examples: Wisconsin 324 per million, Connecticut 873 per million). So it’s also just pretty unlikely. So I reassured her that unless the child had other symptoms, I wouldn’t recommend that we take her to the lab for a test for Lyme disease. But I said I’d look up some of the other possibilities to see if she needs to be worried about other diseases. It wasn’t a lot of research, not nearly as much as I have had to do for some diagnoses, nor as much as was done by some of the doctors working on the mystery diagnoses in Every Patient Tells a Story.

But I know this much for sure: nobody pays me for that time. Nobody pays me to pay another professional I might call for advice, just as nobody pays me for the time I spend on the phone coaching other doctors who call me for advice about their own mystery cases. I was impressed with the tales of caring and motivated doctors who clearly spent time in medical libraries and online and on the phone in order to make the difficult diagnoses in this great book. I know that they weren’t paid for that time. Is it their ethical obligation to the patient to do this work? Is the obligation of the physician ‘best efforts’ or, as in most malpractice cases, ‘at the standard of care?’ Or is the obligation to ‘do what it takes to get it right?’

I often point out that the current model under which we provide medical care, in which doctors are paid per visit is not always compatible with optimal care. But now I have a new concern. If doctors are paid for a visit—and indeed, patient-related work that isn’t done face-to-face with the patient is usually not paid—and if working for free is not ethical, are doctors obligated to work for free, on their own time, until they get a diagnosis for the patient? Presumably, the patient benefits. But economically speaking, the physician is effectively donating her services not to the patient but to the payer, the insurance company. It’s the insurer which gets the economic benefit of hours of additional physician work with no incremental cost to them. It is the insurer who has the most incentive to keep paying the doctors the way they do, to keep them churning through patient visits as fast as possible.

What is the ‘standard of care’ in the stories that are described in this book? (Or in the case reports described in her fascinating column, Diagnosis? It’s not getting the diagnosis right. If it were, then there would be a long trail of physicians who didn’t meet the standard in these cases.

Does the doctor have an ethical imperative to listen to the patient? It’s certainly appropriate professional behavior to be polite, but to listen?

If you’re the patient with the mystery diagnosis, however, what do you do? Who do you see? Some primary care doctors shunt difficult diagnoses automatically to specialists, just to save time. Sometimes, they send these patients to me.

As a primary care physician, I see an additional problem. When I have a real mystery, I do sometimes send my patients to specialists with the assumption that their specialized training and experience will give them insight I don’t have. And it frustrates me and my patients when, as so often happens, I am told that while they don’t know what’s wrong with my patient, they are sure the problem isn’t in their department. [I guess that’s why they make so much more money than I do.] What is their ethical (not contractual) obligation?

Is the job of the specialist to rule things out? Who gets to rule things in? And let's be blunt about it--it's easier and quicker to cross things off a list of possible diagnoses than it is to think of new things to add to a list. Whose job is that?

Every Patient Tells a Story, Part 2

In this brilliant new book by Dr. Lisa Sanders, Every Patient Tells a Story, the key success factors that make diagnoses appear for some and stay hidden from others are pointed out in compelling clarity.

She's just the right person to do this, too. Writing her column in the New York Times Magazine, Diagnosis, she must see hundreds more cases that she can possibly write about. Each of the cases are intricate, and even for relatively common conditions the diagnosis often hinges on one key piece of information—sometimes a few pieces. And very often, the clues are there in the patient's own words. Sure, a specific test might confirm it, or rule out some alternatives, but in many of these mystery cases, the patient's story is indeed the single most important factor.

This has led her to important insights into the method of diagnosis, and the impediments to teaching it. She cites evidence that key physical exam skills continue to weaken among recent trainees. I recall hearing that when I was in medical school 15 years ago, and an older colleague confided that he had heard it 35 years ago also. (I speculate that the optimal exam skills are probably found in places where there is not enough technology to do the work for the physician, but there is just enough to validate the doctors findings. Maybe this should be called the second world, somewhere between First and Third.)

And most importantly, she documents the failures of listening skills among doctors. Frequent interruptions, closed-ended questions, and premature closure of the differential diagnosis are cited by example and in research studies. Her thorough approach assesses the impact of artificial intelligence decision models and innovations in hands-on medical education. As I pointed out in my previous essay[link to epts1] on this great book, however, the current economic model of physician-patient interaction is likely to put irresistible pressure on the examining physician to keep visits short, questions closed, and interruptions as frequent as ever.

Every Patient Tells a Story is about doctors. How they think, how they approach patients, problems, and data. It's particularly brave of her not to sugar-coat the stories of several doctors missing an important diagnosis because they didn't do the full job of examination and history-taking. She never says, but it's clear by example, that some doctors are just more motivated and tenacious than others about getting to the bottom of a patient's problem. Dr. Sanders does a superb job of pointing out what some did right.

But there's another book here, too. It's the unwritten shadow book, this same book, these same stories, through the looking glass. Sanders gives the reader insight into what is usually invisible to them—the intensely caring physician who's calling all her colleagues and spending time in the library for the benefit of a patient. The mirror book would give the physicians insight into what Sanders shows to be completely invisible to them: what the impact of a rushed or absent physical exam means to the patient, how the frequent interruptions feel, the frustration of not being able to tell the story that every patient tells.

Illness often affects us in unanticipated ways. For a child, the new feeling of feeling bad is usually unfamiliar and frightening. Fortunately, the relationship I have with most of my patients is helpful under these circumstances. Kids are usually not afraid of me. Many awaken and tell their parents that they need to see Dr. Wolffe, just because they think I'll make them feel better. I'm not interjecting this to brag—I think it gets to an important part of the patient-side of Every Patient Tells a Story. Usually, when I see a sick child, I don't start even by talking to the parent in the exam room. I am totally focused on the child. I always start by asking them if anything hurts. They generally will tell me, often to the surprise of the parent. I ask them to tell me how it happened, what it feels like, and when it started (this last is often the least dependable of the questions, and sometimes results in a 3-year-old telling me that her ear has been hurting for 5 years, while holding up 2 fingers). Only rarely does a parent not interrupt. This is done, I know, with the best of intentions, to help give me the most accurate information on which to base my professional assessment. They stop when I hold up my hand and indicate that I want to listen to the child, but they will get their turn soon.

Here's why I do it. It makes the child feel better. To them, their symptoms are not just uncomfortable. The symptoms are out of their control, and appear to trigger actions by their parents that are obviously concerning and also out of their control. This all can be very anxiety-provoking. I purposefully give them this opportunity to voice these anxieties in a safe place, where they can say it their way and I will listen to them and respect them.

One of my patients just started preschool for the first time. Every morning before he was to leave, he complained of a stomach ache.

Just like adults and headaches, there are stomach aches of all different kinds and intensities. It didn't take a particularly intense interrogation to figure out that the child wasn't having any other gastrointestinal symptoms. The pain started on the first day of preschool, when mommy was leaving for work. A couple of times she called in sick to stay with him. On those days, his abdominal pain vanished as soon as she said she'd stay. I gave the mother some ideas of behavioral things to try to make the transition easier, and told her to call and let me know how it was going. Realistically, no exam was going to help me make a diagnosis in this happy active boy who was running and jumping around in my office. But I knew that the exam could have a powerful effect on the patient. I had listened to him tell his story. But he had to know that I would understand his pain when I examined him. Carefully, without joking, I listened to his chest and stomach. I looked in his ears and mouth, felt his neck. And last, I slowly examined his abdomen. I had a serious expression on my face, as if searching for something. Finally, I spoke to his mother directly, with him in the room. She's a school principal—but I used mostly 1-syllable words in my most grown-up voice and cadence. 'I can see what the problem was,' I said thoughtfully. 'I'm sorry he was so sick and his tummy hurt so much. I think it's all better now and it won't hurt any more.'

OK, maybe the analogy to this use of the placebo effect isn't perfect. But I hear it from adults all the time. 'The doctor saw me but he didn't even examine me.' I hear it from my mother.

I believe there is something important in gentle physical touch. During a physical examination, the touch isn't as a friend, and sometimes elicits pain. But the touch of the doctor's hands is more than a one-way data cable from patient to doctor, providing resources to the diagnostic algorithm. The patient is getting information, too. The patient's information is not examined in Every Patient Tells a Story. I suspect some of the information is about the caring of the physician. But the deliberation of the touch, how unhurried it is, how focused it is on finding out just where it hurts are all things that I suspect every patient perceives. And patients value this as well.

This is more than a placebo effect. Obviously, when we don't feel well, it's good to have somebody available who's a sympathetic and patient listener, a good observer, with a gentle and caring touch. That would make anybody feel better. But I think there's an important feedback loop here that has a real impact on the Story that Every Patient Tells. It's the rapport, the unrushed atmosphere in the exam room, the openness of the examining physician that elicits that story. And hearing that story--listening to that story--can sometimes determine if the patient lives or dies.

Every Patient Tells a Story

You just don’t feel right. Maybe you’re a little more tired than usual. Your muscles themselves seem weak. That’s odd, since you lift weights nearly every day. Maybe you’re just pushing yourself too hard. Over a few months, you notice that your handwriting is hard to read, and it takes both hands to lift a cup of coffee. In the Emergency Room, they said that you weren’t having a heart attack and sent you home. Then, gradually, your fingers seem less sensitive….

In this remarkable book, Dr. Lisa Sanders opens a new and original window into the diagnostic process. As patients, we’ve all had a sore throat or sprained ankle, and the doctor’s work seemed obvious: do a test, get an x-ray, write a prescription. But sometimes we don’t have a straightforward collection of complaints that we could have figured out by ourselves. Is the headache I had a few days ago somehow connected to my cough today? How do doctors make sense of the information we give them?

She’s got great material. As the long-time author of the Diagnosis column in the New York Times Magazine, she has been collecting the stories of diagnostic hits and misses for years. She uses her network of medical contacts to find the valuable pearls of seeing patterns in what looks like chaos. Her column’s focus on diagnoses that aren’t obvious always makes for compelling reading that can’t be put down.

But there’s a lot more in this book than a compilation of some of her columns. In her Diagnosis writing, she seems like an invisible narrator, allowing us to observe a medical detective story unfold before our eyes.

Every Patient Tells a Story has plenty of those medical mysteries. But Dr. Sanders has shared not just the events, but her own insight into the process. She’s completely candid about missed diagnoses, tests that should have been done, questions that should have been asked—including instances when she was the physician who might have done better. She does not hesitate to point out the dangers of skimping on the physical examination of every patient, and has convincingly written about changes that need to be done to change medical education in a way that brings physicians back to basic exam skills and diagnostic thinking.

The book’s focus is not the detective stories, though they are fabulously written and fascinating to read. It is the process of discovery that clearly interests her. Why do some doctors miss something again and again, even though it’s right in front of them? Why do others see what’s hidden? How can we teach doctors to see the forest for the trees? Computer technology would seem to lend itself well to the understanding and improvement of this kind of analytical task, in which diverse bits of information are processed into a coherent result. She examines the development of artificial intelligence models for making a medical diagnosis, with data to illustrate their weaknesses and strengths. (They’re not quite here yet.)

Dr. Sanders makes her strongest arguments when pointing out a major weakness in physician behavior. The title, Every Patient Tells a Story, says exactly what she means. Doctors need to listen to what the patient has to say. Again and again, the trail of clues—even to the most obscure and unlikely diagnosis—starts there.

This is the most interesting book I have read in years. I couldn’t put it down. The narrative stories are fascinating, and her insight is right on target. Everyone who’s ever been a patient, and certainly every doctor, should read it.

The book moved me in many ways, so this won’t be the only blog post about it. If there’s a unifying theme to the book, it’s the importance of doctors listening to what patients say. Yes, she points out at length how many doctors don’t do or don’t respect the physical exam. She describes interesting cases in which basic observation would have provided a crucial diagnostic clue, yet the doctor didn’t observe—or maybe didn’t see—what was right in front of her. I don’t know if this was the work of her editor, but she does a very good job of staying ‘on topic.’ That’s a reasonable thing, and makes the book focused and coherent reading.

Dr. Sanders gives convincing proof that doctors are skimping on the physical exam of their patients, and doing a particularly poor job listening to patients. Many of the stories she recounts hinge on a key physical observation, or an event the patient described but didn’t seem important at first. She describes some new educational methods to improve these weaknesses. For example, doctors in training are now required to pass a practical exam on interacting with and examining a patient.

That’s a great idea, but I’m very pessimistic about its long-term impact. Here’s a statistic I’d love to see that she did not mention in the book: for a perfect score in this practical patient exam test, how much time would be necessary? Even if it wasn’t done by a medical student—I want to see the head of a patient-care department do it. Even if that department chairman had the notes in her hand (the teacher’s edition of what tasks had to be done in that exam to have a perfect score), how long would it take? I know nothing about this effort, and I applaud it. But when I read about it in the book, I started to think: introduce yourself, wash your hands thoroughly, find a seat and sit; describe what you’re going to do, ask some basic demographic questions. Most important in the interview: ask open-ended questions, listen to the patient’s complete answer. I figured that before even the most organized and experienced interviewer got to the physical exam, quite a while would have gone by. 15 minutes? 30? More?

Many medical practices schedule patient visits every 20 minutes. Some places I know are every 10 minutes.

I discussed this in my series of posts called Slow Medicine. I’ll add, after reading this book, that if the factory model of medical care is, as Dr. Sanders shows, likely to result in missed diagnoses and frustrated patients, it’s much, much more of a problem with children.

In pediatrics, the patients often don’t get to tell their story. I believe that every child does tell a story about themselves. The only way to hear it is to take the time to establish some level of rapport with the child. With many children, and with children the doctor is meeting for the first time, that’s just not possible in 5 or 10 minutes.

Until doctors stop getting paid per visit, the irresistible pressure to see more patients and spend less time with each one will force those laudable lessons of medical school into the dusty trash bin filled with good ideas.

More to come on this amazing book.

Fever

Fever is one of the things our bodies can do to fight infection. It isn’t fully understood, but we know that many bacteria and viruses find the higher temperature a less appealing environment. There are many, many causes. Infection is the most common, but it can be caused by other problems as well.

In the second year of medical school, students are taught about all kinds of diseases. Some, of course, are serious, and some are usually not a big deal. Some diseases are common, and some are very rare. But nearly every student gets ‘medical student disease.‘ Day after day, they hear about exotic diseases that start…with fatigue. Then there’s the feeling that it’s difficult to concentrate. Maybe occasional headaches. They can’t help but put 2 and 2 together and end up with 73. That’s about the time when they are taught a favorite expression among doctors. ‘When you hear hoofbeats in the distance, it’s much more likely to be horses than zebras.‘ Which is simply a way of saying that when your kid gets a bloody nose, it's probably not Congo-Crimean Hemorrhagic Fever. For this reason, and as I’ve said before, it’s a mistake to ask a doctor ‘what could it be?’ That’s what medical textbooks are for, and I use them as references when needed. ‘What could it be?’ could only be thoroughly answered with zebras (all 4 kinds), camels (both kinds), and an occasional Java Rhino. Of course, your kid doesn’t have any of the vanishingly rare diseases that a single symptom—fever, for example—could possibly be.

I get a lot of calls about fever. For the most part, I can be very reassuring. It’s the body’s natural way of fighting off an infection. Fever from illness, it is generally thought, doesn’t get high enough to cause brain damage. Even a high fever (to the 105’s (41C)).

Hyperthermia can. That’s when our bodies are exposed to heat way beyond what our bodies can generate on their own. People stranded in the desert, for example--there’s a reason they call it Death Valley; or those tragic stories we read about every summer about a baby left in a car. Our bodies usually do a reasonable job in keeping us cool, by sweating. But if we get dehydrated and don't sweat enough, we could be in trouble if it were hot enough. Hyperthermia, though it does cause an abnormally high body temperature, isn't a fever.

Fever , then, doesn’t generally worry me. But what’s causing the fever? If I treat the sick child, it will be for the underlying illness, not the fever. Here's the scenario I pose to parents. If your child has a fever, but looks OK, is breathing fine and playing and active as usual, would you worry? Something is causing the fever, so I'll concede the child might be coming down with something, but that wouldn't worry me. Compare that to your child acting in a worrisome way—complaining of pain, for example, or sleeping all day and refusing to walk—but not having any fever. Is that reassuring? To me, that's much more worrisome.

So why do we treat fever at all?

There are purists out there who think that we shouldn’t treat it, and let the child’s body fight off the natural infections as millenia has designed us to. There are conspiracy theorists who believe that the companies marketing fever medicine want to support the mass delusion that fever must be treated.

For me, trying to see this from the child’s point of view, an empathic approach, is helpful. True enough, treating the fever does nothing to help get the child better faster or treat whatever illness they might have. But whenever we have a fever, we feel really bad. Sometimes fever can cause a headache, but it can certainly worsen a headache. But even without any specific symptoms, fever makes us feel sick. When we reduce the fever, we just feel better. And making children feel better is, as I look at it, an important part of my job.

I think parents with sick children often feel helpless as they watch their sick child. The fever is the only objective marker of the illness, whatever it is, and so by lowering the fever they feel like they are taking a pro-active approach. And they get positive feedback when their children perk up as their body temperatures go down.

If the child has a fever but is OK, I think it's all right to watch them and not treat the fever. If they feel awful, I would treat the fever. I don't think making the child suffer accomplishes much from a medical standpoint. But there's a few points that should be mentioned.

All kid's fever medicines are not the same. There are generally 2 choices of ingredient: acetaminophen (in Tylenol and a lot of store brands), and ibuprofen (in Motrin and a few others). They both work in most people, but it does seem that one will work better than the other in some people. Acetaminophen is safe when the directions are followed. It shouldn't be used for more than a few days, however, because at doses much higher than we should be giving, it can be toxic. Besides, if your child is really having a fever for more than about 3 days, it's probably a good idea to try and figure out what the kid has. A doctor might be able to help with that.

About 1 in every 25 kids get febrile seizures. They don’t seem to have epilepsy, but when their temperature is high enough, they have a brief seizure. It’s almost always in toddlers. As you can imagine, this is really scary for the parents. Fortunately, it’s quite common (about 1 in 25 toddlers have one), and most of those who have one never have another. The seizures do not cause brain damage, usually only last less than a minute, and usually do not mean that the child will go on to have a seizure disorder.

Every now and then, I see a child with fever who has been covered in as many blankets as the parents can manage. This is not a difference in parenting philosophy—it's just wrong. When we have a fever, our bodies are too hot. Even if we feel cold or are even shivering. In order to relieve the symptoms of fever, we have to lower our temperature. So dress your child minimally, and get rid of the heavy quilt on the bed. One of the best techniques I have found is to put the child in a bath. Not a cold bath! That would annoy anybody, especially a sick child. So draw a regular-temperature bath for them. It will still be about 20 degrees below their elevated body temperature. After soaking for 15 minutes (with you there—don't leave them alone in the bath), the water will have absorbed some of their temperature, and they will feel much better. You can do this as often as needed, without concern of overdosing.

Fever that has been relentless for more than 3 days, say 4 or 5 days, is worthy of a doctor visit. I'm still not worried about the fever causing damage, but I am concerned about finding a cause.

Elvis Presley live: Fever


Fever does, in fact, usually go up at night.

Jeremy--Teacher says he doesn't pay attention

Jeremy’s mother called me today and said that his school requested an ADHD evaluation because he wasn’t paying attention. He just turned 10, and was struggling in school.

Several years ago, his mother told me that his school wanted to ‘retain’ him, which used to be called getting left back when I was a child. At that time, I told her in clear terms what I thought of ‘retention,’ which is a common suggestion for elementary school kids. This will be a topic of its own series of posts. I suggested she request an IEP, which I attended with her. They didn’t retain him, and he was given some special help in a couple of subjects. Since that time, he has kept up with his grade until now.

Jeremy has never been in trouble. He’s kind and polite to everyone. But there’s something different about him. When he speaks, the words make sense but the rhythm of his speech is off. Often, he will sound a little like a computer speaking, with flat intonation that masks emotional content. This speech issue is just one aspect of some social difficulties. He likes most other kids, but seems to have a lot of trouble reading and reacting to them in a typical way. He does have a breaking point, where frustration and loneliness make him sad and upset. He is a bully magnet.

He also has never been given a diagnosis. His parents can’t afford several thousand dollars to get him tested for all kinds of learning disabilities, and he might have some. The school and school district (and state, for that matter) have no money and are cutting some of these special ed and tutorial programs.

His teacher told mom that he couldn’t concentrate in class and he has requested being allowed to sit in the hall and do his required work in a more quiet environment. The teacher took this as oppositional and sent him to detention, where he had never been before. That afternoon, he told his mom that he loved detention since it was really quiet and he could really focus on his schoolwork. He accomplished several days of homework assignments in 1 hour of detention, completely without direction or supervision.

A picture was emerging. I asked more questions about all kinds of sensory input. Mom said that he was indeed sensitive to ambient noise and found it hard to concentrate in noisy environments. He also was very sensitive to smells, tastes, and the textures of his clothes. He was always cautious about people touching him.

So I could see that he did have an attention problem. But it sure didn’t smell like ADHD to me. He had no attention problem at home or anywhere else except for the classroom. He didn’t have this problem last year, with the teacher who adored him. He didn’t have it in my office, where he would sit and look through a book as his mother and I talked. People who have ADHD have it everywhere they go. They have it on weekends and weekdays, at school, at home, at work, in their conversations and their personal relationships.

I had suspected a diagnosis for Jeremy for years, but what good would a label do for him? I decided to broach this topic with his mother.

I told her about the things I had noticed: the speech issue, the social stuff, the sensory sensitivities. These all could be minor features of autism. But clearly, there were many features of severe autism he didn’t have. He spoke appropriately for his age. He didn’t seem to have any hand-flapping or other repetitive movements, and he was definitely interested in making connections with others. This was an autistic spectrum disorder. There just aren’t enough specific diagnoses to fit everybody on the autistic spectrum. The official ones are Autistic Disorder and Asperger’s Disorder. He didn’t have either of these. Everybody else, pretty much, gets lumped into Pervasive Developmental Disorder--Not Otherwise Specified.

The reason I brought this up with his mother was the result of a 2004 California Law called the Individuals with Disabilities Education Improvement Act [IDEA]. (Other states also have special education laws, and this link has links to the laws in other states.) If a child is diagnosed with dyslexia, for example, the school may get them reading help, if the school can afford it. But the law is explicit for the diagnosis of Autism--the state must provide the needed services. It's possible that if he were diagnosed with autism, that might open up opportunities for him to receive services his family might not afford. But will teachers expect less of him? Will he expect less from himself?

I hate assigning labels. They pigeonhole our children in ways that are convenient only for the industrial institutional system of education and the cultural biases of limited expectations. I am truly fortunate to have learned from and worked with creative teachers, fabulous professors, and brilliant colleagues with inept social skills, inarticulate conversation, or quirky nonconformist interests. Maybe they, too, met the criteria for PDD-NOS. I'm sure that the list of Nobel Prize winners includes a lot of people with these traits.

My Swine Flu post.