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Common infections can spark psychiatric illnesses in children
- hampelm 3y agohttps://archive.ph/SXQVB https://archive.ph/SXQVB
- colordrops 3y agoI remember feeling pretty normal until I had a strep throat infection when I was 7, after which I got really introverted and twitchy/compulsive ever since. Maybe a coincidence but I sometimes wonder if that did something to me. edit: I swear I made this comment this before reading the article. It starts off with a boy at 7 with strep that got twitchy, which is 100% in line with my experience. Crazy.
- CodeSgt 3y agoI had a similar experience! I can’t recall if it was strep or what, but I do remember a particularly nasty illness from which I never really feel I recovered from neurologically.
- bowsamic 3y agoThat is terrifying
- atonalfreerider 3y agoI had strep as a child and I developed tics and compulsive speech. Also some OCD. I'm almost 40 and I still have the compulsive speech. When I have awkward thoughts, I start cursing under my breath. Another kid in my class has strep, and he has OCD so bad, that some days he can't leave the house.
- snapcaster 3y agoWow weird, me too and never thought to connect it to strep. Any idea what about strep throat might be causing that?
- infecto 3y agoPANDAS. Known condition and well documented.
- ericskiff 3y agoStrep is the “S” in “PANDAS” - something about the strep infection seems to become resident in the brain causing the immune system to attack it. MRIs show a speckled inflammation in certain areas of the brains of kids with an active PANDAS symptoms / Strep infection. We worked with one of the pioneering doctors when our child was suffering, and she said their best theory is that there was a version of strep which caused Rheumatic Fever / Rheumatic heart infection, which affected many kids each year. Sometime in the 90’s that dropped off, and then they started to see kids with strep infections and then sudden onset OCD, tics, mood lability, and sleep disorders. Her theory was that the strep which caused Rheumatic fever mutated to instead stay resident in the brain rather than the heart, and the immune system kept trying to attack it, especially when triggered by other stimuli like exposure to other colds, viruses, or allergies, leading to “flares” of the illness. We had a dramatic proof that the illness was related to our kid’s symptoms when we discontinued the antibiotics and his symptoms flared terribly. Ultimately, we were able to achieve symptom reduction through a long course of antibiotics, tonsil removal (which seems related to the immune system’s over-reaction in PANDAS cases), and a dramatic reduction of exposure to other illnesses while we all were in covid lockdown for years. I know other families who don’t achieve acceptable symptom reduction move to IVIG after trying other treatments, and have found some success with that. I’ve also heard similar success stories from people with OCD/Tics following Lymes diagnosis who get IVIG. It may be worth seeing if you can find a doctor willing to examine the issues you’re experiencing as a post-infection syndrome and discussing inflammation reduction protocols and other treatments.
- colordrops 3y agoSame, I've got the very awkward thoughts and constant cursing under my breath as well. The twitchiness is still there but under much more control than when I was a child. I wonder if Tourette syndrome has anything to do with strep.
- dartos 3y agoI can’t remember how I felt when I was <7 :(
- goda90 3y agoI'm curious how quickly you got on antibiotics, if at all. I had strep multiple times in my life, including tonsillitis that nearly hospitalized me one time. But my family was quick to spot the signs and get me treatment and I don't recognize any long term impact from it.
- colordrops 3y agoUnfortunately I don't remember.
- markisus 3y agoI wonder if these findings may partially explain the often derided theory that childhood vaccines can cause autism. The article directly mentions that an autism misdiagnosis can result from psychiatric symptoms resulting from an autoimmune response after certain infections.
- bluSCALE4 3y agoThis opens up a can of worms since now the question is can a pregnant mom pass this down to an unborn child.
- GenerocUsername 3y agoI see your text is fading. Um sir, take your crack pot theories out of this post which provides evidence of a different previous crack pot theory. Science has no room for folks who don't preach the dogma.
- deleted 3y ago[deleted]
- thicknavyrain 3y agoThe early research in support of this conclusion (despite the fact no subsequent research has born it out) was pure charlatanism, bad science and the theory is rightly derided because those who continue to propagate it do so out of naked self interest and financial gain: https://www.youtube.com/watch?v=8BIcAZxFfrc https://www.youtube.com/watch?v=8BIcAZxFfrc
- amanaplanacanal 3y agoI thought that theory was based on a fraudulent study?
- genewitch 3y agoNo, you don't understand, "vaccines" are just biological agents now. They're no longer merely "weakened" forms of what we're trying to protect against. Don't you see? Vaccines can't cause this sort of injury, because they're not the disease! Definition of the word "vaccine": Nov, 2020: "Definition of vaccine: a preparation of killed microorganisms, living attenuated organisms, or living fully virulent organisms that is administered to produce or artificially increase immunity to a particular disease" c.f. current definition: "Vaccine: b): a preparation of genetic material (such as a strand of synthesized messenger RNA) that is used by the cells of the body to produce an antigenic substance (such as a fragment of virus spike protein)" don't worry, i'm sure it doesn't mean anything.
- fenesiistvan 3y agoI woul look carefully to the pills that was subscribed to that infection.
- fullmoon 3y agoAre you thinking of antibiotics affecting the gut or about something else?
- all2 3y agoSeems like both the infection and the antibiotics could have an effect. You can't really count either out until further studies are performed.
- bregma 3y agoI was on a length course of Doxycycline (for borreliosis). It had the side effect of acting as an antidepressant. I got better (from the borreliosis), the treatment ended, and so did the antidepressant effect. It may be a study of n=1 but antibiotics affect bacteria selectively, including gut bacteria. It could be that the H. pylori solution is pointing the way to greater things.
- whats_a_quasar 3y agoHmm? The mechanism discussed here is the immune system attacking human cells during an immune response to strep. What do pills have to do with that, and do you mean antibiotics or do you mean psychiatric medications?
- coding123 3y agoHormones are generally regulated by our gut. When we introduce new species it affects who we are. Very interesting.
- badcppdev 3y agoThis 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)
- coldtea 3y ago>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").
- danzer420 3y agowhich countries have a different system than individual doctors for primary care, and how is it better?
- Aeolun 3y agoJapan has a ‘go to any specialist nearby and be seen’ system. Very few GP’s, and a multitude of specialists for their own area of expertise. I had my pick of three ortholaryngologists today (all of them less than ideal according to reviews, but they were there).
- 3y ago
- okokwhatever 3y agoNothing that a good vaccine cannot fix.
- whatwhaaaaat 3y ago[flagged]
- John23832 3y agoI hope that is sarcasm: https://en.wikipedia.org/wiki/The_Economist https://en.wikipedia.org/wiki/The_Economist
- drewhiggins 3y agoThe Economist is very well known and reputable international newspaper that has existed for over 100 years
- whatwhaaaaat 3y agoIt’s a front end for propaganda and publishes anonymously.
- EricE 3y agoOr miracle pill!
- thenerdhead 3y ago> Dr Pittenger says it is now clear that covid-19 infections can trigger psychosis, fatigue and other neuro-psychiatric symptoms. A misbehaving immune system is thought to be the culprit. The idea that schizophrenia may, at least sometimes, likewise be an auto-immune disorder is also under investigation. Until I got long covid(generally recovered now after 2 years), I couldn't comprehend this idea. I felt like I was actually going crazy. But then that lead me down a rabbit hole of reading about things like the microbiome and immune system which is a whole new domain yet to be formally explored. I highly recommend people read Ed Yong's book "I Contain Multitudes". Post acute infection syndromes are a real thing and it is fascinating that we get to see science take on this topic in the spotlight right now. Especially Jeff Gordon and his work on the microbiome and Akiko Iwasaki and her work on long covid. It makes you honestly question the idea of freewill. Good thing that Robert Sapolsky's new book is coming out next month on the topic!
- all2 3y agoI remember reading awhile back about a study that showed people with the flu are generally more social while the virus is spreading. There's also those nasty sugar cravings that seem to pop up when people diet, and it may be that the microbiome drives those cravings. It's a curious thing to think that the bugs in our bodies may drive our impulses.
- genewitch 3y agoI don't know the mechanism of the flu thing (and i have heard it, after you get infected you're more social until the virus confines you to bed), but the craving sugar thing is 100% gut biome, the grass-fed gut flora release opioids when they eat grass, which get sent, via the blood, to our brains, which make us feel good. not eating grasses means we go through opiate withdrawal!
- Aurornis 3y ago> not eating grasses means we go through opiate withdrawal! That's an unreasonable exaggeration. Nobody is getting significant opioid modulation and withdrawals from their microbiome.
- iandanforth 3y agoHave a friend with a PANDAS child. Really hard to even hear about. Total personality change, constant battles, even when it gets better the fear of reoccurrence. Truly awful.
- tetris11 3y agohttps://en.m.wikipedia.org/wiki/PANDAS https://en.m.wikipedia.org/wiki/PANDAS > Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is a controversial hypothetical diagnosis for a subset of children with rapid onset of obsessive-compulsive disorder (OCD) or tic disorders. > The proposed link between infection and these disorders is that an autoimmune reaction to infection produces antibodies that interfere with basal ganglia function, causing symptom exacerbations, and this autoimmune response results in a broad range of neuropsychiatric symptoms.
- Gibbon1 3y agoWhen you consider that chronic and acute autoimmune disease is totally a thing. For instance Hashimoto's disease where the immune system attacks the thyroid is chronic progressing. Thyroiditis, is acute and resolves. It would seem the burden of proof is on those that say the brain isn't subject to autoimmune disorders. Because everything else is.
- harry8 3y ago>It would seem the burden of proof Or maybe we could reserve judgement about all possibilities that cannot be ruled out until more evidence comes in?
- idontwantthis 3y ago> Such findings may have significance beyond a single obscure, debilitating illness. For they fit an intriguing, and growing, body of evidence that other kinds of psychiatric conditions might also result from infections Nobody tell Henry Cotton.
- cloudquelle 3y agoWhen I was around 12 or 13, I had the Epstein-Barr virus. For a couple of *months* I couldn’t: - Walk straight. Always looked like I was completely drunk - Speak normally. Each word I spoke was only half-finished and I had to constantly re-pronounce any words again and again - Write on paper. I just couldn’t write a single sentence, it just didn’t work. I had practically lost the “precision ” of any movements Not to mention the constant headache and pain in the throat. I am wondering why it lasted that long and if it had left any sort of permanent effects.
- r2_pilot 3y agoUnfortunately it has not gotten the attention it deserves from the medical community. Their consensus is that you only get it once(generally). I've had 3 documented cases, the last in 2019, and that one put me out of commission for basically an entire month. I'm hopeful that future medicine eliminates this disease entirely.
- zhivota 3y agoI had it at 16, and like you I was down for a month. Barely could do anything - I don't recall bad mental effects but physically I was zero energy for a long time. I feel like my constitution never really recovered. Even today I get bouts of illness unlike anyone else my age or in my family, and I'm otherwise a very healthy person (healthy weight, work out regularly, etc.). I never really thought about it until the long COVID discussions and learning more about things like this, but it really is something people barely understand today.
- kouru225 3y agoHonestly I feel like the science community’s disregard for religion has caused them to completely fail at dealing with human psychology. Science has spent the last 1.5 centuries presenting itself as a counterpoint to religion, but they fail to understand that religion is just an early attempt at talking about the subconscious. So the science community continually misidentifies issues stemming from the subconscious as pseudoscience. Jung was right.
- dylan604 3y agoThis is stated as if religion has never had it's own pseudo-science/medicine beliefs that conflicted with actual issues. "we don't know what's going on, so it must be a possession" type of things when it could have been something more more like schizophrenia or some other medical condition.
- elwell 3y ago> "we don't know what's going on, so it must be a possession" type of things when it could have been something more more like schizophrenia or some other medical condition. Maybe the spiritual representation is more 'accurate'. Is the concept of love more useful or the concept of oxytocin?
- dylan604 3y ago>Is the concept of love more useful or the concept of oxytocin? are we trying to make someone feel better about themself or cure the problem?
- kouru225 3y agoI never said religion was correct. I said that science tries so hard to differentiate itself from religion that it labels anything that doesn’t appear to be logical as pseudoscience. Since the subconscious isn’t logical, subconscious issues get ignored.
- barrysteve 3y agoThe science community often includes religious people. Jung may be right. He wasn't out to prove "science" wrong. He did his own thing. I haven't seen many people outside Richard Dawkins, Lawrence Krauss and Neil Degrasse seriously try and blame religion for scientific failings.
- goda90 3y agoIt seems that the Sci-fi future of medicine is one where we can closely understand what the immune system is doing and manipulate it.
- tabtab 3y agoA fight against a virus is all-out war in the body. In any big war, there will be significant collateral damage. The body has to "bomb" brain and nerve cells to kill infected cells, and obviously if you have enough of them taken out, it will have lasting impact on your function. Some grow back, some don't, and even those that grow back need to be retrained. For those that don't grow back, other cells and body parts have to learn to compensate. Please keep up on your inoculations.
- ccleve 3y agoPittenger is doing the most important work in this area. There is also a good clinic at Stanford. This is a good interview with Pittenger that give more detail on what his group is up to: https://aspire.care/clinicians/antibodies-pandas-bind-cins-alter-activity/ https://aspire.care/clinicians/antibodies-pandas-bind-cins-a...
- aaron695 3y ago[dead]
- EGreg 3y agoGovernment and Corporations have been leading to a lot of these health issues for decades, including diabetes and obesity in children, ADHD from being locked in a prison-like school environment, and more. Incidentally, diabetes and obesity are major factors for morbidity in coronavirus infections. But also the for-profit industry finds it a lot more attractive to medicate kids downstream (eg prescribing Amphetamines for ADHD) and overdiagnose everything from Autism to ADHD to Gender Dysphoria. This is a band-aid approach, because it’s harder and less profitable to change society than it is to medicate everyone. Hollywood definitely played a role in changing culture and people’s behaviors (including Westerns glamorizing gunfighters, PR campaigns getting women to smoke, product placements, etc) But the industries actually start earlier than that. Merchandising selling stuff to kids. Broadcasting ideas — kids love to pick up on what their peers are watching, not their parents. This PBS documentary goes intk detail: https://www.pbs.org/video/frontline-merchants-cool/ https://www.pbs.org/video/frontline-merchants-cool/ There are record levels of depression, sadness and suicidal ideation among teens, especially teen girls. Whether it’s Hip-Hop or Tik-Tok, the negative externalities from the centralized, for-profit industries disseminating youth culture pile up and our communities should at least request the CDC to investigate further: https://www.wsj.com/articles/teen-girls-experiencing-record-levels-of-sadness-and-suicide-risk-cdc-says-b30b7e8e https://www.wsj.com/articles/teen-girls-experiencing-record-... They do this with adults too — one in five middle aged women is on antidepressants. And let’s not even get started on the opioid crisis. More people than ever are angry at “the other party” in many countries, it is not an accident. But they don’t focus on culture and society and for-profit industries. They only focus on diffuse causes like a virus that’s going around, or “random infections”. State and Federal governments collude with industry to keep us distracted. Whether it’s the fructose sugar they genetically engineer into the fruits, or the high-fructose corn syrup they put into everything, or water use, or the non-biodegradeable plastics, or the factory farms and overuse of antibiotics — in nearly every case the government sides with the corporations — eg governments in agricultural US states criminalizing the filming and exposing of animal cruelty, since their tax revenue comes from these corporations — or enforcing patents for Monsanto and Big Pharma etc. etc. and letting the lobbyists write Medicare Part D to make sure Medicare won’t negotiate drug prices etc. What they do is they always tell us that we can do something as individuals (recycle, diet and exercise, go vegan etc) or lead to polarized narratives like Women (feminism) vs Men (redpill) White vs Black, so we’d be too divided and blaming each other instead of demanding systemic reforms to impose a cost on our corporations getting away with the negative externalities: https://magarshak.com/blog/?p=362 https://magarshak.com/blog/?p=362 I strongly believe that if we had a UBI in this country, funded by these pigovian taxes imposing costs, we’d have a population that organically would start to push industry towards healthier practices for everyone and the planet. Because the public would directly get the windfall of these tax revenues.
- ericskiff 3y agoFor any parents reading this and wondering if their kid is affected, I highly recommend reading up on PANS and PANDAS. Watching our happy, healthy kid change before our eyes with sudden-onset OCD, vocal and motor tics, terrible mood lability and sleep issues, and other strange symptoms like handwriting regression was heartbreaking. His doctor suggested it was Tourette’s and I happened to notice that his symptoms included a dry vocal “cough” and insisted on him being tested for strep, which he had. We got the antibiotic and it went away. That cycle happened 2 times until the 3rd time, the symptoms persisted and he no longer had strep. That lead me to discover PANDAS and we then began getting him treated for that. If you’ve noticed similar changes in your kids, definitely read up on it and find a doctor who understands the link and is willing to explore treatment options with you.
- ericskiff 3y agoI realized I didn’t finish the story on this comment. 5 years later, our son’s recovery is a daily miracle. He’s a happy, healthy 13 year old with only a shadow of his former symptoms. We were able to achieve symptom reduction through long course antibiotics, inflammation reduction supplements and medications (Tylenol and steroid bursts), and eventually having his tonsil’s out. After that we would have done IVIG if needed. We maintain some inflammation reduction supplements but he’s off the rest of the meds and doing really remarkably, knock on wood. If you’re going through this with your kid, I send you all the love in the world, and hope that you’re able to relieve their symptoms as well.
- InfiniteRand 3y agoSo I'm unclear based on the article and some other reading around, can a strep test detect PANDAS, at least in some cases?
- ekanes 3y agoPANDAS is better described as a syndrome of symptoms all occurring at once. It's caused by strep (and in our case at least) can also be triggered by covid vaccines or other things as well) so a strep text only tells you if the child has strep. In our case, the treatment was the test, in that if it didn't work, it would (arguably) help rule it out. But it did work, for which we're grateful.
- s0kr8s 3y agoAccording to the conventional PANDAS theory, due to biological mimickry antibodies against Step A bind to neurons and attack them, so there are antibody tests that focus on Strep A that are used as diagnostic tools in PANDAS, such as antistreptolysin O (ASO), anti-DNAse B (ADB), and streptococcal carbohydrate (anti-CHO). However, there a lots of kids diagnosed with PANDAS who have high levels of those antibodies at some times but not at others, and there are kids with the exact same history and presentation who never show high levels of those antibodies at all. So it could be that there are actually a wide variety of situations in which antibodies that the body creates end up attacking neurons (see anti-NMDA encephalitis), and only some of them are even known about yet.
- ekanes 3y agoWow, thanks for such a well-researched reply.
- dosplatos 3y agoNot the happiest news I've read (and somewhat poorly written for a paywalled article). Don't viruses and bacteria alter genetic expression? Usually it's just hijacking certain cellular organelles to replicate, but it makes sense this or other processes could trigger genetic expressions with longer lasting affects. Really unfortunate to think that it's some sort of dice roll when you catch an infection.
- whats_a_quasar 3y agoI found the NIMH factsheet on PANDAS very clear and comprehensive [1]. If this article is relevant to you, I suggest reading it too. Summary: Children who have strep sometimes develop psychiatric symptoms as well. This is a condition called PANDAS[2]. The characteristics signs are tics, OCD-like symptoms, and anxiety, occurring in children roughly ages 3-12. The symptoms usually occur suddenly, "overnight". So, the action is: If a child develops this sort of psychiatric illness, get them tested for strep, and possibly treat them for strep before the psychiatric condition. And awareness among doctors is low, so you might need to be the one to identify the condition and advocate for it to get treated. The suspected mechanism is the immune system attacking human cells during an immune system response to stress. Some other commenters are discussing psychiatric responses to long COVID, schizophrenic-like symptoms, and effects of PANDAS on adults. There's also something called PANS for kids getting psychiatric conditions from infections that aren't STREP. This is very interesting to me too but the research still seems murky enough to not have an obvious course of action. [1] https://www.nimh.nih.gov/health/publications/pandas https://www.nimh.nih.gov/health/publications/pandas [2] The expanded acronym is very long: Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Streptococcal Infections
- NeuroCoder 3y agoMet a kid with this my first pediatric clerkship in med school. I was told it was super rare and then had to memorize a bunch more stuff and forgot all the details about the visit. Always wish I could remember that patient better
- derbOac 3y agoI've seen multiple cases like this professionally, and they don't always have the typical PANDAS profile, either in terms of sequelae or putative causes. Kid gets illness, very clear signs (very high temperature for example), sometimes admitted, dramatic personality change afterward. The cases I remember most were around 7-12 but I recall one that was more around the age of 17. It was unnerving for multiple reasons the first time I worked on these types of cases; one of those types of experiences that made me realize there's a fair amount of very serious illness out there that "goes under the radar" in the sense that there's serious consequences and little to no way to prevent it and poor understanding afterward of exactly what happened.
- s0kr8s 3y agoThese cases aren't nearly as rare as the medical system would have you believe. Go to a residential psych hospital for kids, or a day treatment program for level 3 or 4 EBD children, and you'll see a bunch of them, many of whom have been languishing there for years. These kids are are more of an ugly and inconvenient truth that the medical world would prefer to ignore, so these kids get chucked over the wall to the mental health system instead, which is better prepared to simply lock them up and quarantine them from the rest of society. For the most part, I think doctors want to work mostly with helpless and grateful children, who willingly submit to tests and follow orders, not angry, aggressive children who claw and bite you no matter what you do or say. If you don't "behave" then medicine doesn't want you. Go see a shrink. This is part of why I hate the term "behavioral health," because the emphasis is on restoring compliance. There was a movement in the 90's to rebrand "mental health" as "behavioral health" in order to make it seem more reputable and science-y, but I think that move back-fired. I think we delivered more compassionate care when the emphasis was on trying to some notion of a person's healthy subjective mental state, rather than trying to get them to behave.
- mschuster91 3y agoAnd yet, despite mounting evidence, people are still opposing even basic measures of hygiene in way too many schools. Air filters, if they are even present, are often just plugged out. Windows can't be opened at all. Way too few loos for way too many students, most of them vandalized to hell, no soap dispensers to be seen. On top of that come all the parents who send their kid to school despite clearly being sick.
- comicjk 3y agoThere's also underfunded research on far-UV light, which at the right wavelengths kills pathogens without apparently affecting humans. It might really be that simple. https://www.smithsonianmag.com/innovation/could-uv-light-reduce-the-spread-of-covid-19-in-indoor-spaces-180980872/ https://www.smithsonianmag.com/innovation/could-uv-light-red... https://www.cuimc.columbia.edu/news/new-type-ultraviolet-light-makes-indoor-air-safe-outdoors https://www.cuimc.columbia.edu/news/new-type-ultraviolet-lig...
- t0bia_s 3y agoInteresting how this topic is discussed now. After lock downs, spending most time afront of screen, without socialising with other, constantly breeding with catastrophic scenarios withou any hope for future... In some countries even with forcing to take vaccines that do more harm to children than covid itself. We should seriously ask if we do it for our children protection or fear from propaganda.
- version_five 3y agoThe scariest part of this is that it appears to be country dependent how seriously it is taken and how those presenting with symptoms are addressed. I have no idea if I'm in a pandas-accepting country, but knowing this now I'd certainly find a jurisdiction willing to entertain it's existence if my kids had symptoms. It shows how subjective and uncertain medicine really is.
- s0kr8s 3y agoLong-time HN lurker here, and I think it's finally time to finally create a profile and post my first comment. I'm the CEO of an outpatient mental health organization with 50+ employees (mostly just run the tech in the background these days), I have been a professional in the field for 18 years in a wide variety of settings, and two of my four children have intermittently had symptoms that match the description of PANDAS / PANS for the past four years. Happy, gentle kids prior to it, often complemented in public for their good manners, then sudden onset for both of them after a Step-A infection, starting with neurological signs (occular shudder), then Berserker-level constant violence afterwards. What is most maddening for parents is how powerless the whole experience leaves you feeling. I know this field, had worked with kids with these symptoms in a professional setting where I was widely viewed as the most successful clinician they had ever seen, I leveraged every asset I had to try and get my kids help (called up a family favor with the owner of a Children's hospital) and STILL the response from the hospital was to say that there was nothing wrong with my children, everything they were seeing was simply "behavioral," report me to child protection, and accuse me of Munchausen's. Close family members concluded my wife and I were child abusers when we asked them for help, and ran for the hills as soon as they got a glimpse of what was actually going on. At the end of the day, the reality of PANS / PANDAS is even possible is not something that anyone is prepared to handle. That an innocent child could suddenly be turned into a violent weapon of mass destruction at any moment in time at the drop of a hat is a notion from a zombie apocalypse movie, not reality. Zombie apocalypse movies are actually the best possible way to imagine what it is like to live with a child with PANS / PANDAS, including the intermittent groaning biting. To give you a clinician's perspective, when I was a young clinician working with these kids, we didn't believe it either. Neuro-autoimmune disorders were not even on the map back then, and we were always told to assume that some sort of trauma was underlying the violent behavior, because what else could possibly drive someone to do those things? Parents would tell me, "but this came on suddenly, out of nowhere, they were a happy normal kid before," and we would just assume they were lying, clueless, or some combination of the two because we could never definitely rule out that some sort of awful trauma had happened. Sure, these kids never responded well to known trauma treatments, which definitely suggested something additional was amiss, but then again there has always been a subgroup of individuals with complex trauma who do not respond well to treatment, so... Now that I am a parent, however, and these are my own kids, I can with a high degree of confidence rule out trauma as a diagnosis in a way that I never could back then. My kids are home-schooled so it's not like we missed some sort of bullying at school, my wife and I are both professional mental health therapists so we know every parenting and behavioral conditioning trick in the book, I'm moderately wealthy and can afford to provide them with anything they need, and yet still the violent behavior continues, in complete defiance of everything I was ever taught. I sincerely wish I could apologize somehow to all those families I worked with way back when... One of the things that makes me the most angry is the fact that the mental health system I work in is complicit in maintaining the illusion that they can help these kids. Occasionally someone will observe one of my kids acting out and will say "you should take your kids to see a therapist," as if a little routine behavioral insight could get this all fixed up in a jiffy. And if you took such a child to a therapist, they would probably be happy to attempt useless interventions on these children for years (hopefully not at my business, but perhaps even there), but the truth is that the world of mental health has nothing to offer these children. Zero, other than perhaps some palliative care for the trauma of going through and endless waking nightmare and perhaps some slightly nicer containment and quarantining facilities than you might have in your own home. I've worked in the settings where these children tend to accumulate and for the most part they simply don't...get...better. Why? Maybe because the core problem is not "behavioral," but with therapy being "so hot right now," nobody can seem to tolerate the notion that it's not a panacea for everything. For those of you who have posted comments about your own experiences with children with PANS / PANDAS, I commend your courage and determination to continue pursuing ways to help your kids in spite of the resistance and the absolutely terrible advice the world has likely given you on how to help them. Know that you're not alone. It seems like every time I tell my story to someone, they know someone who is going through the same thing. It's possible that the frequency and prevalence of this problem is actually increasing over time, but we don't have good numbers on what exactly is happening because most of the world is still busy denying that the problem exists. I am consequently glad to see this issue getting more mainstream traction, both in the Economist and on HackerNews. Side-note: like with most things involving the brain, I think we are unfortunately still a long way from understanding how PANS / PANDAS actually works. We have some theories, but those theories tend to not hold up well in studies (which is why PANDAS was renamed PANS to broaden the range of possible etiologies) but likely the syndrome is complex and multidimensional, with a wide variety of pathways leading to a similar endpoint (including pathways that don't even involve the immune system), sort of like Autism. So don't assume that there is a simple answer either. There are lots of stories about things like antibiotics or IVIG helping, but they don't work for everyone and each case is likely to require a slightly different approach, so the more important thing is to never give up and commit yourself to a systematic process of trial and error until you find something that works for your kids and your family. If you can, get some medical-grade genetic testing done, teach yourself some rudimentary bioinformatics, then put your tech skills to good use by mining that CRAM file for gold. That process led to tremendously helpful insights and intervention strategies for my family that would never have been uncovered otherwise.
- broguinn 3y agoThere's some evidence that NAC can improve long COVID-like symptoms: https://medicine.yale.edu/news-article/potential-new-treatment-for-brain-fog-in-long-covid-patients/ https://medicine.yale.edu/news-article/potential-new-treatme... Other than antibiotics to clear a lingering infection, are there interventions that we might take in the aftermath of bacterial or viral infection to remediate long-term effects?
- nojs 3y agoMeta comment: I’m looking forward to the day my phone comes with an inbuilt summarizer that puts an end to opening an article and seeing “It was a sunny day in September 2007…”.