[HN Gopher] A journey to the medical netherworld (2016)
       ___________________________________________________________________
        
       A journey to the medical netherworld (2016)
        
       Author : EndXA
       Score  : 28 points
       Date   : 2024-05-26 12:41 UTC (10 hours ago)
        
 (HTM) web link (hazlitt.net)
 (TXT) w3m dump (hazlitt.net)
        
       | jph wrote:
       | Great article. PANDAS (Pediatric Autoimmune Neuropsychiatric
       | Disorders Associated with Streptococcal Infections) and similar
       | disorders such as MCAS (Mast Cell Activation Syndrome) are
       | terrifying for parents and children. Too many doctors don't know
       | about them.
       | 
       | Treatment is often an uphill battle, even to get well-understood
       | drugs such as well-known antibiotics (such as cefprozil) and mast
       | cell stabilizers (such as cromolyn). Many doctors refuse to try
       | these, and many insurance companies refuse to cover them for off-
       | book use.
       | 
       | In my opinion, the best solution is called "Test Of Treatment"
       | (TOT). It means try a variety of things, and see what works. Test
       | Of Treatment can happen after the usual treatments are tried and
       | fail. Test Of Treatment can use generally-safe generally-
       | reversible treatments, much like exploratory probes, to discover
       | what's wrong and what can help.
        
       | smeej wrote:
       | It seems like as a culture we have a lot of weird baggage around
       | dealing with doctors. It makes me wonder if it has something to
       | do with our fear of our own mortality and unwillingness to talk
       | about death or something.
       | 
       | I remember my classmates who went on to med school and became
       | doctors. They were bright, but I don't remember their being
       | extraordinarily so. Their classwork mostly seemed to involve a
       | lot of memorization of facts, following rules and procedures, not
       | so much thinking creatively or solving problems.
       | 
       | But now that they have MD after their names, we expect them to be
       | familiar with a thousand different kinds of possible nuance?
       | While operating in a system that only gives them 15 minutes per
       | patient to hear what's going on and come up with a plan?
       | 
       | It almost seems unreasonable and unfair of us, _but they expect
       | that of us too._ If we dare to question their assessment (again,
       | after 15 minutes with the patient), we 're "questioning their
       | authority," even if we're advanced degree holders ourselves, and
       | a stay-at-home parent who has spent nearly every waking moment
       | with the patient or reading about research relevant to the
       | patient's symptoms.
       | 
       | I know for every one medical research journalist like the author
       | of the article, there are 10,000 exhausted working single parents
       | armed with Doctor Google and a story about Kim from Accounting's
       | niece's best friend's little brother who had a similar symptom
       | one time, but it really seems like there should be a way to
       | communicate when there really _is_ something unusual going on.
       | 
       | Maybe it needs to be like customer support, where there isn't
       | just one tier of doctor. Maybe there should be a system to filter
       | actual complex cases up layers of specialty. But the customer
       | support experience normally sucks, so maybe the model just
       | doesn't work. I don't know.
       | 
       | There just has to be _something_ that could make it better than
       | this.
        
       | elteto wrote:
       | My first thought as I started reading was PANDAS. Had a
       | (thankfully negative) brief episode where PANDAS was on the table
       | for some health issues one of our children had. My initial
       | reaction was, "Wait. Strep infections can cause mental health
       | issues? WHAT?".
       | 
       | Fortunately all doctors we went to see, including the primary
       | pediatrician, were well acquainted with it and with the blood
       | tests necessary to confirm it.
       | 
       | And everyone was willing to throw a strep test in if we asked.
       | It's non-invasive and easy to administer.
       | 
       | Can't imagine going through this with non-compliant doctors.
        
       | spondylosaurus wrote:
       | > We mentioned that her right ear still glowed red and hot
       | several times a day, which we found odd.
       | 
       | Recurring episodes of hot/red ears, especially after an initial
       | trigger of infection, sounds a lot like relapsing polychondritis.
       | But RP is already super rare so I have no idea what the potential
       | intersection of RP and PANDAS looks like.
        
       ___________________________________________________________________
       (page generated 2024-05-26 23:00 UTC)