3 ms·

a) As far as I can tell from the article, her doctor was at most a couple hours behind her "social network". b) Her social network also produced "various diagn

a) As far as I can tell from the article, her doctor was at most a couple hours behind her "social network". b) Her social network also produced "various diagnoses" which were presumably wrong. c) I wonder how often this sort of thing happens, vs. people's networks encouraging them to not vaccinate their kids, or go on a "cleanse" or what-have-you.

russell 15y ago
Her strategy is quite reasonable for someone with a rare or hard to diagnose disease which most doctors have never seen or even know about. There is a decent chance that there is someone out there who has the disease and give useful disease. Case in point, my GF. She has been suffering for 10 years with a broad spectrum of symptoms: pain that moves around, extreme skin sensitivity, migraines, chemical sensitivity so severe that a whiff of perfume can make her sick for days. The usual recommended treatment from doctors was antidepressants or anti psychotics which make things much worse. Or go see a psychiatrist. Or maybe its fibromyalgia or some other disease du jour. Finally two doctors independently ordered MRIs that covered her from head to butt, her complete spine. They discovered a syrinx in her spine that caused arachnoiditis[1]. There is no cure, although Thalidomide(!!) may be a possible treatment. The point: persistence on the internet allowed her to educate herself about the manifestations of her problem to find the specialists that found the problem. Sadly, her problem was probably caused by an injury from having received spinal anesthesia some time back. Another story for another time is how I had to beat the doctors at Stanford Hospital into a diagnose of malaria for my daughters even though it was well beyond the 30 day incubation period. [1] no spiders involved at all.
mistermann 15y ago
>"You know what?" he said, "I was actually just thinking it could be Kawasaki disease. Makes total sense. Bravo, Facebook." From the article I read, her doctors handling of it was tenuous, at best. To me, the idea that doctors should be able to process god knows how many patients per day, and diagnose their illnesses properly, while still keeping up to date on recent discoveries, considering that medical knowledge is changing on a daily basis, is absolute madness, like pure crazy thinking. Of course you're going to get crazy recommendations from your friends on facebook, but do you really think its humanly possible for any general practitioner to have a "good" grasp of even 50% of the medical knowledge known to date, AND see their patient load, AND read all the latest medical journals? It is not even close to possible. Who has all the eyeballs? Google and Facebook, and somewhat Microsoft. Ignoring all the legal landmines, this is a niche that some startup should be focusing on, a way for parents/families who have intimate and in-depth experience with rare ilnesses can interact with each other. The SME's will gladly give their knowledge for free, but no one seems to have the balls to aggregate it.
- deleted 15y ago
  [deleted]
knowtheory 15y ago
So, i agree, and i disagree. One of the important points that i think people are missing, is that family and close friends are going to be the ones who can detect the onset and severity of problems. They should inform their doctors about this (and to some extent this woman did with the "spidey sense" thing). Doctors are not in a good position to tell how far out of the norm a child is in terms of their daily life, unless you and your child see that doctor on a regular basis. It may very well be that one's social network (especially if your social network is lucky enough to include a pediatrician and a cardiologist) who are familiar with your child may be better suited to picking between two overlapping diagnoses. Given the prior probabilities, and no specific information or identifying features doctors are going to err on the side of the most likely symptom causing disease. In this case, if it looks like strep, and the doc has no further info, it probably is strep. tl;dr: You know your family better than your doctor does. Your doctor knows medicine better than you do. :P =========================================== All that said, I think it's important to note a few other things. Generalists (general practitioners, pediatricians, ER docs and the like) and Specialists (cardiologists, for instance) have different biases in diagnosing. If the author's friend had been, i dunno, a dermatologist rather than a cardiologist, she may have offered a different, and likely incorrect suggestion for diagnosis. Hard to say. Doctors, like any other science can have biases (i do not mean that in the pejorative fashion), especially when it comes to identifying rare conditions/circumstances. Lastly, this is really social networked medicine at it's best. Mom has a sick kid, she's snapped some photos to text to her doctor, why not post them for her friends (who have medical expertise) to look at too? As in the ideal case, the concerned friends with medical experience followed up with mom to keep abreast of changes in the kid's condition, and upon noticing that symptoms were not improving, and were perhaps getting worse, suggested that (out of an overabundance of caution) that mom needed to take kid to hospital. In that regard, none of the behavior here is outrageous or egregious (except that her husband is a bit of a knob).

russell 15y ago

Her strategy is quite reasonable for someone with a rare or hard to diagnose disease which most doctors have never seen or even know about. There is a decent chance that there is someone out there who has the disease and give useful disease. Case in point, my GF. She has been suffering for 10 years with a broad spectrum of symptoms: pain that moves around, extreme skin sensitivity, migraines, chemical sensitivity so severe that a whiff of perfume can make her sick for days. The usual recommended treatment from doctors was antidepressants or anti psychotics which make things much worse. Or go see a psychiatrist. Or maybe its fibromyalgia or some other disease du jour. Finally two doctors independently ordered MRIs that covered her from head to butt, her complete spine. They discovered a syrinx in her spine that caused arachnoiditis[1]. There is no cure, although Thalidomide(!!) may be a possible treatment. The point: persistence on the internet allowed her to educate herself about the manifestations of her problem to find the specialists that found the problem. Sadly, her problem was probably caused by an injury from having received spinal anesthesia some time back. Another story for another time is how I had to beat the doctors at Stanford Hospital into a diagnose of malaria for my daughters even though it was well beyond the 30 day incubation period. [1] no spiders involved at all.

mistermann 15y ago

>"You know what?" he said, "I was actually just thinking it could be Kawasaki disease. Makes total sense. Bravo, Facebook." From the article I read, her doctors handling of it was tenuous, at best. To me, the idea that doctors should be able to process god knows how many patients per day, and diagnose their illnesses properly, while still keeping up to date on recent discoveries, considering that medical knowledge is changing on a daily basis, is absolute madness, like pure crazy thinking. Of course you're going to get crazy recommendations from your friends on facebook, but do you really think its humanly possible for any general practitioner to have a "good" grasp of even 50% of the medical knowledge known to date, AND see their patient load, AND read all the latest medical journals? It is not even close to possible. Who has all the eyeballs? Google and Facebook, and somewhat Microsoft. Ignoring all the legal landmines, this is a niche that some startup should be focusing on, a way for parents/families who have intimate and in-depth experience with rare ilnesses can interact with each other. The SME's will gladly give their knowledge for free, but no one seems to have the balls to aggregate it.

deleted 15y ago
[deleted]

knowtheory 15y ago

So, i agree, and i disagree. One of the important points that i think people are missing, is that family and close friends are going to be the ones who can detect the onset and severity of problems. They should inform their doctors about this (and to some extent this woman did with the "spidey sense" thing). Doctors are not in a good position to tell how far out of the norm a child is in terms of their daily life, unless you and your child see that doctor on a regular basis. It may very well be that one's social network (especially if your social network is lucky enough to include a pediatrician and a cardiologist) who are familiar with your child may be better suited to picking between two overlapping diagnoses. Given the prior probabilities, and no specific information or identifying features doctors are going to err on the side of the most likely symptom causing disease. In this case, if it looks like strep, and the doc has no further info, it probably is strep. tl;dr: You know your family better than your doctor does. Your doctor knows medicine better than you do. :P =========================================== All that said, I think it's important to note a few other things. Generalists (general practitioners, pediatricians, ER docs and the like) and Specialists (cardiologists, for instance) have different biases in diagnosing. If the author's friend had been, i dunno, a dermatologist rather than a cardiologist, she may have offered a different, and likely incorrect suggestion for diagnosis. Hard to say. Doctors, like any other science can have biases (i do not mean that in the pejorative fashion), especially when it comes to identifying rare conditions/circumstances. Lastly, this is really social networked medicine at it's best. Mom has a sick kid, she's snapped some photos to text to her doctor, why not post them for her friends (who have medical expertise) to look at too? As in the ideal case, the concerned friends with medical experience followed up with mom to keep abreast of changes in the kid's condition, and upon noticing that symptoms were not improving, and were perhaps getting worse, suggested that (out of an overabundance of caution) that mom needed to take kid to hospital. In that regard, none of the behavior here is outrageous or egregious (except that her husband is a bit of a knob).