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.<p>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.<p>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.
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.<p>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.<p>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?<p>It almost seems unreasonable and unfair of us, <i>but they expect that of us too.</i> 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.<p>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 <i>is</i> something unusual going on.<p>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.<p>There just has to be <i>something</i> that could make it better than this.
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?”.<p>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.<p>And everyone was willing to throw a strep test in if we asked. It’s non-invasive and easy to administer.<p>Can’t imagine going through this with non-compliant doctors.
These diseases that exist outside the regular medical system but nonetheless have tons of anecdotal evidence, I just don’t know how to think about em. This, long covid, chronic Lyme. It’s hard for me to believe that these illnesses do have some effective treatment like antibiotics when clinical trials are somehow unable to establish the efficacy of treatment and there isn’t even a solid explanation for why they work.<p>I guess the scientist in me still says that it should just be coincidence, people get better on their own and it happens to line up with a new drug they try. On the other hand if I had an illness like this I’d totally try it.<p>It does seem that medicine has a problem recognizing illnesses which are difficult to measure and don’t have any viable treatment options, the system isn’t really set up to diagnose things like that.
> I can only imagine how frustrating it is for someone whose career is based on a single treatment to be faced with cases in which that treatment does not work. I could tell from the language she used, however, that in her mind, CBT does not fail her patients, but rather, some of her patients fail CBT.<p>This echoes my experience with CBT. [1] It turns out you can't treat autism or a brain injury with CBT as-is - but they don't screen for that.<p><a href="https://news.ycombinator.com/item?id=36835266">https://news.ycombinator.com/item?id=36835266</a>
> We mentioned that her right ear still glowed red and hot several times a day, which we found odd.<p>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.