> 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!
>It makes you honestly question the idea of freewill.
Not eating and getting low blood sugar can much more simply answer the question of "Do I have free will, or am I a subject of my internal chemical reactions".
Or, much more simply stated "You're not you when you are hungry".
Prior to getting into tech, I had an internship at the NY State Psychiatric Institute (NYSPI) where I did work helping people developing assessment tools for schizophrenic prodromes (people before they develop schizophrenia), as they were working on a predictive assessment questionaire.
Basically they were looking for risk factors but also to predict who might actually develop the disease imminently among those at risk, because if you monitor folks at risk, folks who might have subclinical symptoms, and can know who is going to have a psychotic break, you can manage and control it and have much better outcomes.
The largest predictive factor of folks who were at increased risk of developing schizophrenia is if they have a family history of it as I recall. Stress, in a variety of forms, is also a big factor.
However the reason I write is because I remember that late fall and winter conception of the individual has been shown to create a small but statistically significant increase in the likelihood of developing the disease. It's unclear exactly why, but one theory is that increased risk of viral infection for the mother during certain stages of pregnancy may be a factor.
Teasing apart these sort of facotrs, even to the extent possible often requires complex multivariate analysis of general and clinical populations and either time based or retrospective analysis of risk factors. Even then the mechanisms are fairly opaque.
Covid infection may lead to increased understanding of psychotic and subpsychotic disorders, but it's more likely to simply complicate any analysis; just teasing apart the actual effects of the disease and the stress that results from the social changes necessary to contain it, in terms of development of mental illness, may not be fully possible.
I 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.
Nerd-sniped: Free will is an incoherent idea. We don't choose our preferences, which dictate our choices. (And even supposing you can choose a preference, that's only due to the preexisting desire to have such a preference. Turtles all the way down.) What would an unconstrained choice even be? Just random, arbitrary? That doesn't sound "free" either.
The parent comment mentions Robert Sapolsky and I can't resist linking a talk where he explores various physical and environmental factors that influence human actions - https://www.youtube.com/watch?v=GRYcSuyLiJk
> 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!
Watching someone go through certain kinds of dementia can have a similar effect. Simplify the input and make situations repeatable (from their perspective) on very-short timeframes and it’s hard not to notice how much we behave like automatons. It’s being able to hold a lot of context that makes us seem like we’re ordinarily not, I reckon.
There was a medical article the other day that popped up where a daughter received the first kidney transplant without life-long anti-rejection drugs. Instead they reprogrammed her immune system to see her mother's tissue as self instead of foreign body. She was on anti-rejection meds for months instead of life. I presume so they could test whether their plan worked or not.
If they can do that for life or death situations, I have hope that we can refine the process for other auto-immune diseases that are everything from lifestyle threatening up to life-threatening. My issues are middle of the list, but if arthritis had a solution other than immunosuppression while I still have cartilage, that would make me so happy.
And I'd really like to be able to eat croissants and baklava again, if that can be arranged.
For 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.
I 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.
Very similar story over here. Similar treatment and recovery, BH. For people curious about this syndrome, the most salient symptom is a sudden onset of multiple things that people don't usually develop in later childhood, let alone all at once. (OCD, tics, etc)
And 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.
There'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.
I 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.
Have 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.
> 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.
I 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.
I 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.
I 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.
I'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.
A 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.
Meta 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…”.
When 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.
Unfortunately 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.
I 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.
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?
The 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.
Met 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
> 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
Long-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.
PANDAS 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.
I 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.
The 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
No, 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)"
Not 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.
[+] [-] hampelm|2 years ago|reply
[+] [-] thenerdhead|2 years ago|reply
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!
[+] [-] pixl97|2 years ago|reply
Not eating and getting low blood sugar can much more simply answer the question of "Do I have free will, or am I a subject of my internal chemical reactions".
Or, much more simply stated "You're not you when you are hungry".
[+] [-] WesternWind|2 years ago|reply
Basically they were looking for risk factors but also to predict who might actually develop the disease imminently among those at risk, because if you monitor folks at risk, folks who might have subclinical symptoms, and can know who is going to have a psychotic break, you can manage and control it and have much better outcomes.
The largest predictive factor of folks who were at increased risk of developing schizophrenia is if they have a family history of it as I recall. Stress, in a variety of forms, is also a big factor.
However the reason I write is because I remember that late fall and winter conception of the individual has been shown to create a small but statistically significant increase in the likelihood of developing the disease. It's unclear exactly why, but one theory is that increased risk of viral infection for the mother during certain stages of pregnancy may be a factor.
Teasing apart these sort of facotrs, even to the extent possible often requires complex multivariate analysis of general and clinical populations and either time based or retrospective analysis of risk factors. Even then the mechanisms are fairly opaque.
Covid infection may lead to increased understanding of psychotic and subpsychotic disorders, but it's more likely to simply complicate any analysis; just teasing apart the actual effects of the disease and the stress that results from the social changes necessary to contain it, in terms of development of mental illness, may not be fully possible.
[+] [-] all2|2 years ago|reply
[+] [-] exolymph|2 years ago|reply
[+] [-] gejose|2 years ago|reply
If anyone finds the video above interesting, also check out his Behavioural Biology lecture series on YouTube - https://www.youtube.com/watch?v=NNnIGh9g6fA&list=PL848F2368C...
His upcoming book can be found here - https://www.amazon.ca/Determined-Science-Life-without-Free/d...
[+] [-] hotnfresh|2 years ago|reply
Watching someone go through certain kinds of dementia can have a similar effect. Simplify the input and make situations repeatable (from their perspective) on very-short timeframes and it’s hard not to notice how much we behave like automatons. It’s being able to hold a lot of context that makes us seem like we’re ordinarily not, I reckon.
[+] [-] hinkley|2 years ago|reply
If they can do that for life or death situations, I have hope that we can refine the process for other auto-immune diseases that are everything from lifestyle threatening up to life-threatening. My issues are middle of the list, but if arthritis had a solution other than immunosuppression while I still have cartilage, that would make me so happy.
And I'd really like to be able to eat croissants and baklava again, if that can be arranged.
[+] [-] diogenes4|2 years ago|reply
Hell two months in any psychology course will have you questioning that. We are truly biological beings first and rational agents second.
[+] [-] jeroen|2 years ago|reply
[+] [-] mock-possum|2 years ago|reply
[+] [-] ericskiff|2 years ago|reply
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|2 years ago|reply
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.
[+] [-] ekanes|2 years ago|reply
[+] [-] mschuster91|2 years ago|reply
On top of that come all the parents who send their kid to school despite clearly being sick.
[+] [-] comicjk|2 years ago|reply
https://www.smithsonianmag.com/innovation/could-uv-light-red...
https://www.cuimc.columbia.edu/news/new-type-ultraviolet-lig...
[+] [-] whats_a_quasar|2 years ago|reply
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
[2] The expanded acronym is very long: Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Streptococcal Infections
[+] [-] iandanforth|2 years ago|reply
[+] [-] tetris11|2 years ago|reply
> 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.
[+] [-] colordrops|2 years ago|reply
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.
[+] [-] atonalfreerider|2 years ago|reply
Another kid in my class has strep, and he has OCD so bad, that some days he can't leave the house.
[+] [-] CodeSgt|2 years ago|reply
[+] [-] goda90|2 years ago|reply
[+] [-] dartos|2 years ago|reply
[+] [-] bowsamic|2 years ago|reply
[+] [-] ccleve|2 years ago|reply
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-a...
[+] [-] goda90|2 years ago|reply
[+] [-] tabtab|2 years ago|reply
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.
[+] [-] nojs|2 years ago|reply
[+] [-] cloudquelle|2 years ago|reply
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|2 years ago|reply
[+] [-] zhivota|2 years ago|reply
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.
[+] [-] broguinn|2 years ago|reply
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?
[+] [-] version_five|2 years ago|reply
[+] [-] coding123|2 years ago|reply
[+] [-] NeuroCoder|2 years ago|reply
[+] [-] idontwantthis|2 years ago|reply
Nobody tell Henry Cotton.
[+] [-] s0kr8s|2 years ago|reply
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.
[+] [-] InfiniteRand|2 years ago|reply
[+] [-] ekanes|2 years ago|reply
[+] [-] markisus|2 years ago|reply
[+] [-] thicknavyrain|2 years ago|reply
[+] [-] stephen_g|2 years ago|reply
[+] [-] bluSCALE4|2 years ago|reply
[+] [-] amanaplanacanal|2 years ago|reply
[+] [-] unknown|2 years ago|reply
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[+] [-] genewitch|2 years ago|reply
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.
[+] [-] GenerocUsername|2 years ago|reply
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.
[+] [-] dosplatos|2 years ago|reply
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.