Without loss of any generality, I can tell you that in the case of our daughter, the information we eventually tracked down and applied was far, far, far more useful than the trained professionals we were working with at the time. Her gastroenterologist had come highly recommended, was dedicated, gave us all the time we needed, and was dumber than a bag of hammers, poor man. Yeah, he sure did think we were difficult patients, I'll give you that - but that note in the file represents the doctor's insecurity, and not necessarily that the patient is an idiot. (And I really must hasten to agree that there are a lot of idiots. It's a case-by-case thing.)
People research their own medical issues when they're not getting satisfactory treatment. Simple as that. If you had a family doctor you trusted, who you felt was giving you the straight-up truth about what was wrong, what he was doing, why things were happening, you wouldn't need to go reading poorly spelled forum entries by mental midgets using crystals.
In our son's case, we went through seven nephrologists before finding one that was satisfactory. (Well, actually two of the others were OK, but logistically more difficult.) Our dealings with Riley Children's Hospital's head nephrologist were disastrous, truly disastrous, another bag-of-hammers case, and she's respected in the field.
But the problem with parents taking medical care of their undiagnosable or untreatable children in hand is that most people don't know how to separate bullshit from valuable information (of course, this applies even if you're dealing with the professionals), and the deck is stacked against you in major ways. We're kind of an exception. I've been told I should write a book about our experience, but jeez, who's got time for that?
Balance this against some very good experiences we've had in the past with physicians treating my wife, but seriously - medical training is overrated, to an alarming degree. As is most training, of course, but medical training is so fetishized that it stands apart.
People research their own medical issues when they're not getting satisfactory treatment. Simple as that. If you had a family doctor you trusted, who you felt was giving you the straight-up truth about what was wrong, what he was doing, why things were happening, you wouldn't need to go reading poorly spelled forum entries by mental midgets using crystals.
In our son's case, we went through seven nephrologists before finding one that was satisfactory. (Well, actually two of the others were OK, but logistically more difficult.) Our dealings with Riley Children's Hospital's head nephrologist were disastrous, truly disastrous, another bag-of-hammers case, and she's respected in the field.
But the problem with parents taking medical care of their undiagnosable or untreatable children in hand is that most people don't know how to separate bullshit from valuable information (of course, this applies even if you're dealing with the professionals), and the deck is stacked against you in major ways. We're kind of an exception. I've been told I should write a book about our experience, but jeez, who's got time for that?
Balance this against some very good experiences we've had in the past with physicians treating my wife, but seriously - medical training is overrated, to an alarming degree. As is most training, of course, but medical training is so fetishized that it stands apart.