Jaybird brought this essay in Slate to my attention, by a mother whose child was correctly diagnosed by her Facebook. Deborah Copaken Kogan credits the social media site with saving her son’s life. I think the piece says more about her child’s doctor than it does about Facebook.
Before I go any further, I should give my usual disclaimer about criticizing another doctor’s patient care. I am generally loath to do so. When patients come in with printed reports from some of the local emergency departments (where we never direct people to go), I am often confronted by management decisions that are contrary to what I would have done. Unless the tests or treatments were wildly inappropriate, I typically say “Dr. X was there, and I wasn’t.” The same caveat applies here. I never examined this boy, and have nothing to go on but what his mother reports in her article.
His symptoms began thusly:
Mother’s Day morning, my 4-year-old woke up with a rash. It was my 16th Mother’s Day. I was inclined to ignore rashes. But a note had just come home from day care reporting a case of strep in Leo’s classroom, so I dutifully felt his forehead, noted it was hot, and made an appointment at a medical office with Sunday hours. While waiting for the results of the strep test, feeling bored and somewhat sorry for myself, I snapped a photo of my son on the exam table playfully covering his face with his blankie, which I then posted to Facebook with the following caption: “Nothing says Happy Mother’s Day quite like a Sunday morning at the pediatrician’s.”
The rapid strep test came back negative, but none of my three kids’ in-office strep tests have ever come back positive, even when they have strep. Plus Leo’s fever was on the rise. “He looks really streppy,” said the doctor on call. “I think we should treat him for strep, and if his throat culture comes back negative, you can reassess with your family doctor.”
A couple of small comments here. First, I wonder a bit about what kind of doctor sees Kogan’s kids. Her initial Facebook post refers to a pediatrician, but later references are to a family doctor. The distinction may be important, which I’ll get into more later. Also, I usually don’t treat kids with a negative rapid strep, even if they “[n]ever come back positive.” Often enough, the confirmatory culture shows that the negative result was correct. However, it’s not crazy to treat presumptively and stop antibiotics if the culture is negative for strep. Not what I would likely have done, but not inappropriate.
Things go on:
Except the next morning he was worse. “Bring him in,” said our family doctor. Scarlet fever—a fancy name for strep with a rash—was his tentative diagnosis as well, pending the results of the throat culture, due back the following morning. I snapped another photo of my now puffy, less playful child on the exam table and posted it to Facebook with the following less cheeky caption: “Baby getting sicker. Eyes swollen shut. Fever rising. Penicillin not working. Might be scarlet fever. Or roseola. Or…???? Sigh.”
And right here my problems begin. Scarlet fever is indeed just a fancy name for strep with rash. Facial swelling does not occur with uncomplicated scarlet fever, and it should respond to antibiotics. Roseola does not cause facial swelling. (I checked the Red Book, just to be 100% certain about all of this.) If the family doctor saw this patient, ascribed his worsening symptoms to either of those illnesses and made no changes in treatment, then his management is very hard for me to explain. Simply put, I would never do this. The very least I would do is stay in very close contact with the family to find out how the patient was doing. Nowhere in this piece is there any indication that the family doctor was calling in to check up on this boy; all the calls made were from the mother to him.
Within three hours, 20 comments appeared underneath the photo, ranging from, “Allergic reaction?” to, “Scarlet fever isn’t nearly as scary as it sounds,” to, “Deb, that doesn’t even look like Leo in the picture!! how’s he doing now? so scary!”
Scary?, I thought. That’s going a little over the top. Until the next morning, when my son’s face was now swollen beyond recognition. “He looks like Eddie Murphy in The Nutty Professor,” I said to my husband Paul, trying to keep it light—my normal modus operandi—though inside a definite heaviness was taking root.
I am having a very hard time understanding this. His face was swollen beyond recognition? That’s not normal!! Did she call her family doctor at that point? If she didn’t, why not?
Ten minutes later, I received a call on my cell phone from Stephanie, a film actress and former neighbor. “I hope you’ll excuse me for butting in,” she said, “But you have to get to the hospital. Now.” Her son Max had had the exact same symptoms, and was hospitalized for Kawasaki disease, a rare and sometimes fatal auto-immune disorder that attacks the coronary arteries surrounding the heart. “The longer you wait,” she said, “the worse the damage.”
Then the Sunday pediatrician’s office called. Leo’s strep test was negative.
Now I was perplexed and slightly worried. If it wasn’t scarlet fever, what was it?
Did you call your regular doctor to update him? To ask? If not, why not?
Meanwhile, the most recent photo I’d posted to Facebook now had 36 comments underneath it, with various diagnoses and words of support, and my Facebook inbox was bulging with private messages, one of which was from Beth, a pediatrician, echoing Stephanie’s fears.
My cousin Emily, a pediatric cardiologist who often has to deal with the fallout from untreated Kawasaki, also called after seeing the photo, urging me to go to the hospital. “The damage begins as early as five days after the onset of symptoms,” she said. [emphasis added]
This is why the distinction between a family doctor and a pediatrician matters. I mean no disrespect to family doctors — a good family medicine specialist is better than a crappy pediatrician. However, pediatricians have much, much more training in recognizing and treating illnesses of childhood. I am not surprised that the author’s pediatrician friends/family had very different thoughts than her family doctor.
I called my family doctor and told him I was heading to the hospital. “I just have a Spidey sense,” I said, “that he’s really sick.” Not a lie, but not the whole truth, either, though what was I going to say? Three of my Facebook friends think my kid has an extremely rare childhood auto-immune disorder which I just read about on Wikipedia, and since they all contacted me after I posted a photo of him on my wall, I’m going? It seemed … wrong! Reactionary. And yet as much as I wanted to be my usual mellow self, the immediacy of the Facebook feedback was enough to push me out the door.
From the hallway in triage, I finally called our family doctor. Admitted what I’d done—furtively filling in the reason-for-visit blank on the hospital form with “possible Kawasaki disease”—and why I’d done it. “You know what?” he said, “I was actually just thinking it could be Kawasaki disease. Makes total sense. Bravo, Facebook.”
Kawasaki disease isn’t actually all that rare. Pulling my copy of Nelson Pediatrics from the shelf, I see that it occurs in about 3,000 children per year in the United States; it is much more common in Japan. It’s relatively rare to encounter a case, but it is most certainly something pediatricians are expected to know about and recognize. It’s always on the differential diagnosis for a child with persistent high fevers and certain other symptoms, and I would absolutely have considered it in this case.
What leaves me just gobsmacked is the doctor’s response. “I was actually just thinking it could be Kawasaki disease”?!???! So what were you going to do about it? Did you have no contact with this progressively swollen, persistently febrile patient’s mother until she sheepishly called to tell you she’d gone to the hospital?
Bravo to Facebook, indeed. I’m not a big, big fan of the Internet as source of medical information. I’m certainly no big fan of polling one’s friends for their diagnosis and using that as a basis for medical decision-making. That said, two of the author’s Facebook friends are pediatricians, and Facebook was merely the medium by which informal medical advice was given. It’s really no different than when a good friend calls for a casual second opinion. This article says more about the somewhat curious calm of this mother in the (literal) face of increasingly bad symptoms and seemingly piss-poor follow-up on the family doctor’s part. This mother shouldn’t have needed Facebook, when an appropriately vigilant medical provider would have been the obvious choice.