Patient Zero: The Hundred-Day Cough

Andy is about the healthiest 11-year-old in my practice.  If he didn’t keep bruising himself playing basketball, I don’t think he’d ever come to the office.  The cough he had was remarkable for another reason, too.  He wasn’t sick.  No fever, no trouble breathing.  No noisy breathing, not even a runny nose.  He didn’t even cough most of the time.  But every 5 or 10 minutes, he would cough and cough and not be able to stop for about 2 minutes.  During the 2 minutes, he had a lot of trouble getting a breath in between the coughs.  He only had this for a few days, however, so he got some cough medicine that helped to suppress the cough, and that helped him.  He was over the worst of it in a few days.

I’m fortunate that my patients and their families often recommend me to their friends.  So Andy’s best friend David was in the office the following week.  He had asthma, so his cough was just the latest in a series of exacerbations.  I increased his asthma medication, and he improved.  For a while.  Then he went back to coughing.  So he was back in the office, this time with what sounded like pneumonia.  He got antibiotics, and more asthma medication, and he improved.  For a while.  The cough he had was peculiar, and seemed to come in fits, just like Andy’s cough.  Sometimes, one of these coughing fits would stop right after he threw up.  For one visit, he and his mom brought along Sean, a friend from school.  Sean waited politely in my little waiting area.  After the first month of symptoms, two courses of antibiotics, tons of cough and asthma medicine which seemed less and less effective, I got lab tests.  He wasn’t thrilled about having to get a blood test.  On the way out of the office, he introduced me to Sean.  Sean was coughing, too.

  Though finding infective bacteria wasn’t likely after the antibiotics he received, I knew what I was looking for and ordered measurement of the antibodies in his blood against pertussis.  In the 19th century, it was sometimes called the Hundred Day Cough.  The kind that show a long-term memory in the immune system, IgG, would show a healthy response to his series of infant immunizations.  Another kind that I requested, IgM, would be evidence of an ongoing or very recent infection that his body was trying to fight off.  His pertussis IgM was very high.

After calling his parents to tell them that I had a diagnosis, my next call was to the office of Public Health.  Within 12 hours, they were mobilizing in one of the local middle schools.  David has an older brother in high school.  He was coughing, too.  Within 24 hours, they were at the high school, too.

Andy’s mom told me that she felt bad about him starting this growing number of cases.  It wasn’t anybody’s fault, I told her.  She knew about epidemics, and she called Andy Patient Zero.  Patient Zero is the very first case in an epidemic that can be identified.  All the other cases can be traced back to this one.

By Halloween, a couple of months had passed from the time that Andy first came to my office.  He wasn’t coughing any more; David’s older brother wasn’t coughing any more; even David wasn’t coughing any more.  I was at their house for a party on Halloween.  (I dressed up as a pediatrician who stayed late at the office. )  Andy’s friend Sean was there, coughing. 

I was introduced to Sean’s parents, who, in a friendly way, tried to explain that their decision not to have Sean vaccinated was just a personal choice, like being vegetarian or buying fair trade coffee.   Sean wasn’t my patient, and I left the conversation.

I pulled Andy’s mother aside and told her that he wasn’t Patient Zero.  Sean was. 

Given that unvaccinated children are 23 times more likely to get pertussis, it’s pretty likely that in my neighborhood, the kid that gets it first is probably unvaccinated.  David, who has asthma, really struggled with it and needed a lot of medication that he probably otherwise would have been able to avoid.  Sean too, I suspect, was suffering.  He had been coughing for about 2 months or more by Halloween.  In vaccinated kids, the mean duration of the worst cough is 29-39 days.  In the unvaccinated, 52-61 days.  That’s an average, so some will be longer and some shorter.  The incubation period for pertussis is 4-21 days.  Sean was the first to have the disease, and is probably spreading it even now, with every frequent cough.

Sean, I assume, and the 3 of my patients who got pertussis from him, will all be OK.  But when they come home from school, who gets it from them?  What about the grandparent with lung disease?  What if there’s a sibling getting chemotherapy?

Andy’s mother is pregnant.  When the newborn is home in a couple of months, will Sean come over to hang out with Andy and David?  How will she make decisions like this?  When I told her that it was nobody’s fault, I didn’t know what I know now.

Cough #1: Breathing vs. Sleeping

Our government, which is to say taxpayers, offers insurance that commercial insurers would never come near. It’s flood insurance, for people who live on one of America’s great flood plains. According to the website, “30% of all flood insurance claims come from areas with minimal flood risk.” I’m good at math…so 70% of the claims come from areas with major flood risk. You know the 3 most important things in real estate: location, location, location. So we may not be able to predict the timing of a crisis, but we know for sure that one will come.

A working mother called. She said that her son, 10, has been coughing for a week, and it’s been getting worse. He’s been missing school, and that’s just not working for her job or for his dad’s. Would I prescribe some cough medicine for him, since none of the stuff they bought at the pharmacy seems to be helping.

I’ve known this boy for about 10 of his 11 years. He’s had asthma for most of that time, and—to be blunt—his parents just have not pushed him to keep up with his daily medicine. Every time I see him it’s a crisis, and he often misses important follow up appointments.

Here’s what happens. He’s having a hard time breathing. Finally, his parents take him to the doctor, who prescribes the right medicine. He takes it, feels better. Nobody in the family sees any need to continue taking medicine when he’s not sick [please see The Medication Paradox] so he stops. They don’t show up for the follow up appointment in which I had planned to reduce but not eliminate his medication and to fine-tune what he gets to prevent subsequent crises. But this doesn’t happen, so the predictable crisis recurs.

I told her that I had to see him, and reluctantly, she brought him to the office.

The thin boy I saw before me was breathing a little fast, but not coughing much. I asked him if he minded missing school. He said, ‘Yes,’ and started coughing. A few minutes later, when I asked him to take a deep breath, that set him off again. He couldn’t speak more than a word or two without erupting in coughing. He was solidly in an asthma attack, and I told him and his mother this. I prescribed the appropriate regimen and told his mother as I handed her the prescription, ‘Get this filled right away and give him the full dose immediately. It won’t start helping for hours, and he needs to be better before tonight.’

I called that evening to follow up. I could hear him coughing in the background. I was told that he wasn’t better, but he was in good spirits and didn’t complain of difficulty breathing. I was in their living room in about 30 minutes. He looked about the same as when he was in the office, about 8 hours earlier. I couldn’t figure out why the steroids hadn’t helped—indeed this was an ominous sign that had hospital admission written all over it. I asked what time he took the medicine.

“Oh, he didn’t take it.” I admit to expressing more than passing curiosity about this, given my careful instructions to get it in him as soon as possible. “The pharmacist said not to give it tonight because it might keep him up. So we should give it to him tomorrow morning.”

Now, at this point in this completely true story, I hasten to interject that I adore pharmacists. My father was a pharmacist. Pharmacists have caught my errors and helped my patients.

This was not one of those times. Luckily for this child, I was standing there in his living room at 9:30 at night watching him take the medicine that might indeed keep him up all night, but breathing.

In asthma, the airways, those tubes carrying air into the deepest reaches of our lungs, get inflamed and irritated. When they are inflamed—just like other places in our bodies—they swell. But there’s a problem when the walls of a tube swell. The inside diameter of the tube gets smaller. It feels like breathing through a straw.

What we try to do medically is first, get the tubes to relax so they get a little bigger, making it easier to breathe. But as soon as this medicine wears off, the problem starts over since everything is still inflamed. So we also use anti-inflammatory medicine to reduce the swelling.

For the record, the medicines that we use with asthma can indeed have an insomniac effect. The steroids (not the kind that build muscle) can even cause some distressing behavior, especially in children. Albuterol and medicines like it (often dispensed in inhaler devices) can make your heart beat faster and make your hands shake. It might be true that these can cause a person to have trouble falling asleep. But people who are several days into an asthma exacerbation (the non-PC term used to be asthma attack) have not slept in days because they’re up all night coughing and trying to get a breath. When this primal hunger for breathing is relieved, no matter how stimulating the medication, they are often so relieved that they fall asleep restfully without a problem.

He was better within hours, and went to school the next day. We set up a follow-up appointment for Saturday. He missed it.

The Dark Places

Everybody has dark places that they just don't want to go. Sometimes these places are physical locations that we can't avoid.

Evelyn is 9 and has asthma. Controlling her symptoms has been challenging, not because her asthma is so severe, but because her family is very disorganized. As with most chronic conditions, steady routines of preventive care can help to avoid serious episodes. On one Sunday, she was having particular difficulty, so I went to her home to check on her. She turned out basically to be OK and she and her family just needed some hands-on coaching to remind them when and how to use which medication.

A house call is a powerful tool, neither taught nor mentioned in medical training. I have learned a lot from them, and the information from experiencing a child's home is much more substantial than can be inferred from a brief history provided in an office visit. This is particularly true for chronic disease.

Evelyn was eager to show me her room. Her bed was completely hidden under an army of stuffed animals that covered it entirely. There were many clothes on the floor, some clean and some not. There was no door on her closet. She had a desk, which was cluttered with piles of books. Dust was thick everywhere. It looked like nobody in the family was a good housekeeper. I asked her, hinting at the stuffed animals, where her bed was. She pointed to the bed and added, “But I don't sleep there.”

She slept nearly every night on the sofa in the equally dusty living room. I asked, of course, why.

She was afraid of spiders, she explained, as if I were somehow inexplicably dense and couldn't see the obvious.

Evelyn knew there were cobwebs in the corners of her room, and her fear of spiders prevented her from turning off the light when she was in the room. The usual age for the start of specific phobias was about 7, and she said she'd been very afraid of them for a couple of years. She denied any specific traumatic experience, though.

Fear of spiders is one of the most common phobias, and it seems that this affects girls more frequently than boys. But phobias are very common, and we often are embarrassed by them and don't talk about them—we just plan our activities to avoid confronting them. So often when I diagnose an anxiety disorder, I find that the child has specific phobias they never told anyone about. They know that these phobic feelings are not shared by their friends, and sometimes they aren't even comfortable sharing with their parents. Even if the phobias aren't something that restricts their daily life, the child can feel deeply ashamed of what they know is an abnormal perception. So when I am talking to a child who I think might have an anxiety disorder, I always ask about phobias. And when a parent mentions to me that their child has not one but several phobias, I always will consider anxiety.

The key to her asthma control was getting her a low-dust place to sleep, so I offered to come and clean her room with her. She liked this idea and so did her mom. I told them to buy plastic storage bins big enough for clothes and toys, and asked her mother to sew a curtain-rod-to-floor washable curtain to use instead of a closet door. When I returned about a week later, all but one stuffed animal was in a bin. She was welcome to take all of them out whenever she liked, but she could only sleep with one. All the books went in a bin. The clothes went either into a laundry bag in the now-closed closet, or into a bin if clean. Evelyn herself was to take a damp sweeper/mop and dust her bare floor every day. I had a hidden purpose when I proposed this. Sure, it kept the dust level low in her room, which I hoped would help her asthma control. But it gave her control of the corners of her room. By cleaning them herself every day (they shouldn't get too dirty in just a day), she would be reminded that they are really clean, really empty, with no webs or spiders to lurk in the dark.

There was a lot of sneezing while we were cleaning the little room, but we ended up with a lot of dustable smooth surfaces (the floor, the desk, the lids on the bins) that could be kept clean with minimal effort. Within a few weeks, her asthma was much less of a problem. She was still afraid of spiders, but since she herself (with me there helping and protecting her) had cleaned out those dark corners, she could rest much easier in her own bed. I slept better too.