This is sad: "years spent campaigning to get doctors to take the illnesses seriously."
It's like that saying, "Capitalism: The worst economic system, except for all the others". Our medical system where we rely on individual doctors for primary care is really flawed but it's better than any alternatives that we have (or that we can afford anyway)
The problem is more complicated than it sounds. The official treatment protocol for PANDAS is to perform a throat culture for strep and then treat with antibiotics if the result is positive. (Source: https://www.nimh.nih.gov/health/publications/pandas ). In other words, it's the same as normal treatment protocols for strep.
The idea of PANDAS from occult (aka hidden, not producing positive test results) strep infections is less proven and considered rare, although it is mentioned in official treatment recommendations such as those above.
The problem providers face is that some parents will read about PANDAS on the internet and assume it is the explanation for their child's problems, despite having negative throat culture. They jump from doctor to doctor demanding antibiotic treatment despite the negative test results, guided largely by their internet research. It's not hard to find PANDAS parent groups on Facebook or Reddit where someone can post vague symptoms and a chorus of group members will response "sounds like PANDAS".
The difficult part is that for some of these patients, PANDAS might be the right diagnosis. However, once a diagnosis becomes a cult favorite on the internet doctors get inundated with parents demanding antibiotics because their Facebook groups told them that's what their child needs.
On the other hand, if someone has a child who is aggressively attacking anything and everything in site, no matter how they might have heard about PANDAS, I would argue that antibiotics might still be the lowest risk intervention and most prudent option to try if they fit the profile.
Yes, antibiotic resistance is a concern if you start handing out antibiotics like candy, but if PANDAS is truly as rare as everyone would have you believe, then prescribing antibiotics to every kid that comes in with a PANDAS profile is not going to move the needle much with regard to global antibiotic resistance.
Alternatives:
Prescribe them anti-psychotics or some other medication to sedate them?
Likely much higher side-effects and risk profiles than antibiotics.
Send them to a therapist in hopes that the therapist can behaviorally condition that aggression away?
Bad news: talk-therapy for aggressive behavior in children has terrible outcomes. Most likely scenario in the mental health system is that they end up in an intensive group treatment setting somewhere with other aggressive children, learn more sophisticated aggressive behaviors, and gradually get worse.
On the other hand, antibiotics have a fairly low risk profile. Some pediatricians do literally hand them out like candy when kids come in with an ear infection or sore throat. Maybe stop prescribing antibiotics for those kids, tell them to try some tea tree oil or some other natural remedy, and save the antibiotics for the kids who fit a PANDAS profile instead?
>Our medical system where we rely on individual doctors for primary care is really flawed but it's better than any alternatives that we have (or that we can afford anyway)
The US one I presume? Says who? Based on what metric? We can, and other countries have, do much better.
That this parent "is “exhausted” by years spent campaigning to get doctors to take the illnesses seriously" doesn't say much.
It's not like she had to go the public health system and didn't have the option to go on "individual doctors for primary care" if she could afford it (in fact it would have been way more affordable than in the US).
She campaigned to spread awareness for the cause, not for them to treat her own special case.
Second, the average person would be much more exhausted when chacing their own (or kid's) treatment trying to afford hellishly expensive treatment in the US, sacrificing their kids college fund or their own pension (or even ending in bankruptcy (CNBC: "Two-thirds of people who file for bankruptcy say medical bills or other issues related to illness contributed to their financial downfall").
If you wanted an example of "US healthcare bad" then this is not it. The article is about UK doctors not recognizing a condition and the activities in Parliament to address the situation.
>The article is about UK doctors not recognizing PANDAS as a real illness.
I know, I read it before commenting.
I'm not saying the article is about the US system. I'm saying the comment I responded to appeared to say that the US system is better, and how those countries with other systems like the UK have it bad.
"Doctors not recognizing X as a real illness" can happen, and has, anywhere. It's not a result of how the medical system is structured with regard to public/private, universal healthcare or not, and so on.
There is no shortage of stories from the US about doctors refusing to take some illness or condition as real that was later proven otherwise (or vise versa), dismissing patient concerns that were later proven, and so on.
I have no experience with the US system. I made no mention of public/private, universal health care or not and so on.
Your last sentence (minus the specific country) is exactly what I was talking about. There is no shortage of stories where doctors don't get it right for a million reasons. There is room for improvement.
I think in most countries people don't have to ask their PCP for permission to see the proper specialist. I don't have much other basis for comparison because I don't think I've ever met any PCP more than once anyway.
The Canadian system absolutely requires a referral from your GP to see a specialist. And even in the US, when you do have insurance that allows you to see a specialist without a referral, there are some specialists who won’t see you without a referral anyway, I assume because they don’t want to deal with random people off the street.
There are some rules hobbling the private system in Canada that don’t exist in every country with universal healthcare. As I understand it, if a doctor participates in the public system they’re limited in their ability to accept private-pay patients. Happy to take correction here from Canadians who know better.
I've commented on the past on Direct Primary Care practices - it's a different model of care that is rapidly growing; you can read my previous thoughts on this model here: https://news.ycombinator.com/item?id=33682407
I largely think that doctors, especially primary care doctors, are being limited/held hostage by the insurance companies and the health care corporations that they work for.
They are not reaping the profits from the care they give, and can't focus because of patient loads being way too high. As it was explained to me by my doctor, this is because of how insurance companies pay out (per visit, no matter the duration) and the places that employ doctors usually expect that they see a certain volume of patients. Most doctors have a large amount of student loan debt, and usually feel helpless to fight against it - starting a new practice is very costly.
Once you really look into how oppressive/restrictive the system is to our doctors, the issue with our health care becomes pretty clear. People can't get timely, accurate care -- they have to wait for most prescriptions (because as long as doctors take insurance, they cannot fill medications), and they are always guessing (fearing might be more apt) how much a particular medication, test, or scan will eventually cost, causing hesitancy to seek out care. And most importantly, no longer do patients (or their doctor) have to worry if their insurance company will cover XYZ medication or treatment under this model of care.
My doctor negotiated with a local lab company, and that company offers my doctor's patients pretty much any test at-cost - this is another business dealing that is restricted by insurance companies.
DPC takes all the mystery out (I pay $45 a month for this service, all visits are free): all common procedures/lab/scan/medication costs are up on the website (they are very reasonable/wholesale/at-cost), and I don't have to fight to get that information; I don't have to fight to get an appointment, I can text/email/etc. my doctor whenever and get a prompt response. Because he limits the amount of patients he sees this is possible.
I think if primary care was overall something like this model, but perhaps a bit more accessible (more doctors practicing this way); not only would a lot of illness be treated before it is chronic, people would be less afraid to seek care out, and hospitals and specialists would be less overloaded.
That’s the big one in my experience. Functional medicine doctors are some miracle workers, but only if you can afford hundreds of dollars per visit / thousands of dollars in lab tests that insurance will never pay for.
I recommend you check out the Direct Primary Care model and share your thoughts. This model is not to be confused with Concierge Medicine, which largely suffers from the same problems you identified about Functional Medicine doctors. I just commented about DPC, you can find my thoughts about it at the top of my profile.
Overall, I think this is a great, affordable first step for redefining primary care - one that makes sense for doctors and patients, but is not a replacement for specialties like Functional Medicine.
Sorry that is terrible phrasing. You don't understand why doctors act in a dismissive manner that seems mean.
Rephrase it and it becomes the start of a solution. What should happen in a patient doctor interaction where the doctor is not able to reassure a patient that the prescribed treatment plan is the best plan.
And your feelings are absolutely understandable, valid and a sign of how the medical system needs to improve. You should have mentioned them in your original comment.
It's like that saying, "Capitalism: The worst economic system, except for all the others". Our medical system where we rely on individual doctors for primary care is really flawed but it's better than any alternatives that we have (or that we can afford anyway)