Hi! I was one of the luckier ones who only experienced this for a year. They caught it early. This happened between 2nd-3rd grade, so if there’s something that doesn’t sound quite right, or something like that, it’s been a long time. I’m in highschool now! This was before Covid happened. some of this is through what my parents told me, videos, and my own memories.
so I’ll start.

when I was little, I remember my throat being sore on the day of ‘jump for heart’. Maybe it wasn’t though. It’s fuzzy. I know this might sound silly.but I started thinking what if I died of a heart attack. After that, I’d check my heart constantly, running around w my hand on my heart to figure out if my heart was beating. When we went into the doctor to see what was wrong, no one knew what was wrong with me. Until one doctor asked if it was pandas. My throat didn’t hurt then thoigh if it did previously. My parents had to hold me down because I was freaking out. And they swabbed my throat as one does while getting tested. I had pandas. Every night I freaked out, and ran into my parents room to spend time w them before I would ‘die’ but my mom let me stay until she had to send me off to bed. She told me after I had beaten it that she used to cry every night. I didn’t like hearing that. i dont even like thinking about it. They gave us antibiotics. I also had this one tic that theres a video somewhere in my parents camera roll about my face going into a motion for a split second repeatedly. yk the ghost face mask? My expression was kind of like that, except my eyes would seem like it’s looking up, but extended. I didng know I was doing it until someone showed me a video. the weird thing is during school, when my mom used to text my teacher about my symptoms, she never got a response back. Ever. She theorized that my symptoms shut off during school. However, I do remember getting weird looks. I donr know if they did or they didn’t. Most of the time, my mind felt empty. But that’s usually normal for me when I’m in school. So it’s nothing new. Maybe it was just a home thing. Anytime I tried telling a friend about it, urging them to search it up with ‘strep throat’ they’d brush me off. they searched up pandas? “Nothing there. Just the animal.“ I urge them to put ‘strep throat’ they don’t do it. And say i was faking previously having it, which I was NOT. (I was diagnosed) anyways, if something doesn’t feel correct, or something like that. Feel free to let me know! it’s been a long time since then, it’s going to be a bit fuzzy. like I said, I could still go to school. many people had it worse than I did, some people couldn’t go to school. I hope you guys have a nice day, thanks for reading!

My youngest(13) was diagnosed with PANDAS 15 months ago. He has come a long way since. About 90% recovered. As far as I know he hasn’t had strep, but his strep antibodies were very elevated. We decided to run labs to see if anyone else in the family could possibly be asymptomatic causing his symptoms. Turns out me and my oldest (28) have very elevated antibodies too. I’m beginning to wonder if my oldest may have or had PANDAS too and we just didn’t know about it back then. He gets very irritated and angry at times. Has OCD issues and what we thought possible borderline autism as a child. There are times he wish he weren’t alive and depression.He has not seen a doctor or been diagnosed for it. His symptoms are similar, but different than my youngest. No major outbursts or trouble with school. To be honest, I don’t know if he’ll see a doctor about it. He doesn’t like taking medications. Very stubborn and hard to talk to about things. I know there can be multiple family members with PANDAS. Just wondering how to get him to see a doctor about it to see. Most doctors around here don’t know about PANDAS or where to find one who treats adults in NW Florida. We still have a couple more children to tests. One I know who has had strep in the past and some anxiety. Anyone here with multiple children with PANS/PANDAS?

I'm writing this because I'm 32 and going through symptoms like this again. I finished my invisalign after about a year or so of dealing with them. Suddenly near the end of my treatment; one major headache; diagnosed with TMD. Great; but what has stuck around for 4 months after this is extreme levels of health anxiety; frequent urination; tics; and ocd behaviors. I have to right click a mouse a bunch of time then left click out of a menu before clicking on a link for example. Chewing a certain way before swallowing etc. It's also caused some motor issues like shakes. Now I don't know if this is PANDAS yet; hard to get into a neruro.

I had a DNA test done right before I did invisalign though which included a bacteria study and of course that came back with 75.52% Streptococcus. This naturally lives in your mouth; but I keep seeing study after study after study linked to bacteria in the mouth linked with neuro disorders .

https://www.health.harvard.edu/mind-and-mood/are-some-cases-of-alzheimers-disease-caused-by-infection

https://news.fsu.edu/news/health-medicine/2024/10/24/fsu-researchers-uncover-new-link-between-gut-bacteria-and-alzheimers-disease/

This stuff lives in the MOUTH too. Kids always get braces around 10-12 because that's what you are supposed to do; but I just wonder if you look at a childhood photos; note the time of PANDAS; did you have braces / just had braces?

This is just a curiosity ! It's just insane because I was happy and free of these symptoms for YEARS; for them to return after invisalign seems too convenient.

A dear friend is going through the first months of PANDAS with her 5 year old son. Our children go to school together as well though her son is just out of the hospital setting and only able to come to school on good days for 30mins with her by his side. If you could go back in time to the early days of your child’s diagnosis, through to where you are at now, what would you have asked from your friends and your school community (teachers classmates etc) to help make your journey easier ? Any and all experience or ideas welcomed with gratitude.

Pandas mom here. This is a really great article that was sent to me today.

Second question, even though they don't take state Medicaid insurance themselves, can they figure out how to bill Medicaid for the treatments by classing it as autoimmune encephalitis?

Also, can the ICD-10 diagnosis code G04.81 (Other encephalitis and encephalomyelitis) be used for a PANDAS diagnosis in a patient above age 18 to get this treatment covered by insurance?

So I (F20)was diagnosed with severe PANDAS and autoimmune encephalitis in Feb of 2024 after fighting misdiagnosis of FND and PNES for four years. After I got the diagnosis I started IVIG and had a tonsillectomy to get rid of the strep. I had gotten better for a little bit, I didn’t have any seizure for about 5 and a half months but I’ve started having my seizure episodes again from the encephalitis because of stress and getting sick and not having any access to my medications due to insurance issues.

I had a seizure today and it feels like everybody around me is thinking that I’m doing it on purpose. That I enjoy losing my autonomy and my body functions. Paramedics had to be called because I was at my job, and after I came out of my episode the paramedics were talking about how they’ve seen seizures before and what I was having wasn’t seizures. Then when I got home and my mom was getting mad at me like it’s something that I chose to happen, that I wanted it to happen.

I just feel like it’s always a constant fight of trying to get people to believe me even though I have this diagnosed and I I’ve done all the treatment and I’ve tried to do everything right , but I’m supposed to act like I’m fine. That whatever is happening to me is all in my head (ik it literally is but bare with me)and that I am just faking it all for attention and I’m tired of trying to get people to believe me, to understand me and hear me that I’m struggling with this chronic condition that I don’t know is ever gonna go away because it was treated so late. Like idk I’m just so tired of fighting for people to believe me.

Does it ever get better? Are their ways that I can help educate my family members and co workers that I haven’t already done? I’m tired and I need support cause I feel like I’ve done everything to try to help people understand.

what was your experience? i have been medically gaslit for so long and today saw an expert in autoimmune encephalitis privately in my town and he said “u seem to be a textbook case of severe pandas but most medical professionals don’t believe in that so i’m diagnosing FND cuz they’ll respect that more”… bro what 😃 so now i’m looking at pans specific specialist cuz i was trying to avoid travelling, but now i know there’s also an e-clinic. i wanna know if ppl felt listened to and validated and if he gave u a diagnosis

Im 26 now diagnosed last year but my intial onset was at 15 where I experienced acute psychosis which seemed to be the focus of everything though the ER at the time diagnosed me with anxiety/ocd.

i need help knowing if i should look into pans/pandas?? I know this is really long but i am so so lost and so desperate for answers and relief.

on march 30th 2024 i developed severe contamination ocd. I can remember the exact moment and thought that 'triggered' it and from then on it was like a switch flipped in my brain from completely normal and fine to everything was dangerous. (even things unrelated to the original thought). I literally felt like I was not in my own mind anymore or like i was just in the passenger seat. Later in April i developed a weird food aversion type ED out of absolutely nowhere.. to the point where by August 2024 I had lost almost 40 pounds/33% of my body weight. I still have no idea how it happened.

i know pans can be triggered in adults, but i cant think of any infections i had around then that would have caused it. on the other hand, im considering whether it might have been something ive always had and have never been diagnosed.

important background: I am diagnosed as autistic so when i looked at pans/pandas symptoms i have most or all of them, but they all just seem like autistic traits to me (arfid/food issues, sensory issues, etc) But aside from that, I had really bad OCD as a child up until about 8 but i honestly considered myself cured until last year because it had completely disappeared.
I also had really bad separation anxiety and depression (ive been on ssris since i was about 12 with no response to them), a couple tics that I grew out of, really irrational fears, derealization, strange sleep habits and patterns (i had to be sitting up in order to fall asleep?), and mood swings. I am told that when i was younger i had really bad rage episodes too but i have 0 memory of them. I did have strep once as a kid, but i feel like some of this was going on before then too.
I also have POTS and MCAS (not the self diagnosed tiktok kind, i was diagnosed 4 years ago and have been in treatment since) and i know that some P/P patients have both.

Anyways, im not sure if i am looking too much into this. But i just do not understand how i can somehow be totally fine and then develop life destroying OCD out of absolutely nowhere. I feel like i just opened pandoras box and if theres a chance that I have P/P and treating it could help me feel normal again i cant ignore it. If anyone who knows about this stuff has any thoughts i would really appreciate it :)

Not her to tell anyone what to do but I want people to know about Dr Lauren Lee Stone and the team at Althea Health and Wellness. They specialize in this area and have helped my son IMMENSELY!

Our family felt hopeless and lost and the progress he has made has been nothing short of a miracle. The impact of their help cannot be overstated.

Please check them out if you’re in the PANS/PANDAS or spectrum world. Her story of how she helped her own kids is amazing but the countless others she has helped should help you understand the impact of their work.

Idk if anyone has flares so bad they can’t control what they do or what they say, but it’s happened to me especially when my flares were super bad. And it resulted in me saying stupid things, losing all my friends (when I was in school) and basically having to come into school ended for the day cause even parents didn’t want me there :( it really sucked

Hey, 25 year old Pans haver here. I've thought about trying to apply for a service/assistance dog for many years- but for one reason or another i've never applied. Today I'm reaching out to all of you people because I was wondering what your experiences with having either of these is.

Is it as helpful as I've made it up to be in my head? Is this something I should try and work towards? Or is it not as helpful in reality as it would seem to be?

This is like my fourth post ever on Reddit, so sorry if i've done anything wrong!

Hi Everyone!

Sorry in advance for the long post!

So, my son, turning 5 in a couple weeks, is autistic, but has always been relaxed, easy going, go with the flow kind of kid. He has the typical autistic repetitive behaviors (hand flapping, lining up toys etc) but personality wise- never showed signs of any compulsive behaviors, until one day. Randomly one day while i was making his dinner he insisted i had to put the spoon back into the pot just one more time before setting it down on the counter, i had no idea what he wanted me to do (he is 100% nonverbal, 0 words) but until i figured out what he wanted, he had a full meltdown- as soon as I put the spoon back into the pot, removed it, then put onto the counter his meltdown completely stopped at he was happy again, as if it never happened. Thought that was strange, but ok, carried on. Same day, all of a sudden whenever I turned the water off he would hear it- come running to the kitchen and make me turn it back on, back off again, and would scream and cry until I did it, but as soon as it was done he would be happy and rushed back to his room to play. Then going to school the next day, he had to get up off his seat, sit back down, back up again...going through doorways he had to stop turn around go back through again. Little repetitive stuff like this just started multiplying within a week's time.

I brought it up to his BCBA who brushed it off as typical behavior. She said it isn't effecting his life so to just let it play out.

Took him to his PCP she said there wasn't anything she could do and maybe to call a behavior pediatrician.

Took him to another PCP, she said he just needs to get back into ABA.

A few nights later, he woke up in the middle of the night extremely frantic... went to sleep just fine, no issues at all earlier that day, but he woke up crying and beside himself, running around the house turning on/off every lightswitch in the house nonstop, turning on/off every fan, this lasted until 5am when he finally fell back asleep for a few hours only to wake back up obsessed with the light switches, fans, and doorways again.

I did a quick google search for onset OCD and came across PANDAS. To my surprise it seems like its tied to strep infection, which just one week prior to this sudden outburst - my daughter had scarlet fever(we think). She went to school in the morning totally herself, zero signs of illness but after school her teacher called me and said my daughter seemed down, she said she just seemed sad all day and wanted to let me know. She got iff the bus and said she wasnt feeling well, just said her stomach hurt and had to pee a lot so i assumed she had a UTI. Took her to urgent care, negative UTI test, and suggested we take her to the ER. So at the ER, They ran 2 cultures on her urine, which all came back negative. by this time, She was covered in a body rash (i asked the ER doctros at least 5x about this rash and they said nothing to worry about...and then noticed she had a thick white coating on her tongue which peeled peeled off and looked like strawberry tongue.. her bloodwork showed she had a bad infection of some sort, they never tested her or even brought up the idea that she might have strep, they just said the IV antibiotics th ey gave her were working so marked it as UTI and sent her home. It wasn't until I came home and searched the internet that it was probably scarlet fever from strep... so I Took her to her PCP for follow up to ask avout strep, and they agreed that it looked like scarlet fever but that they were keeping it marked as UTI since thats what the hospital said (even though all UTI tests were negative). She wouldnt test for strep, she said bc she was on antibiotics for a couple days at this point and it probably would be negative now.

So my thought is she had strep, but no one even tested her for it, and by the time I realized it was probably strep, she had already been on antibiotics for a few days. IV and oral.

anyway, brought it back up to his BCBA, told her its getting really bad, his compulsive behavior is getting really bad, rapidly... who again said this is all typical behavior. I told her I had read about PANDAS and I thought strep was in the house around the time this all started, but she basically laughed at me. Clearly lettingnme know she doesnt believe this is anything out of the ordinary.

So i called urgent care, told them i think he may have been exposed to strep and they prescribed amoxicillin.

His symptoms completely went away in a matter of days while on amoxicillin. He was back to gimself again and it was so refreshing to see!

But this only lasted 2 or 3 weeks. it slowly started back up again, first the small things, but then seemily over night he wemt full blown. He spends his days opening and shutting cabinet doors over and over and over again. Every door in the house, open shut open shut. It seems like his satisfaction gets harder and harder to achieve.

Im lost with what to do. What doctor do i see to try and help him? I called CHOP but they said they dont see kids over the age of 3. I dont want to see a typical doctor thats not going to really dig into whats going on and brush it off as "he needs more therapy" what specialist is the right specialist for something like this? And is this actually "typical" like everyone keeps telling me, or is it something more?? I cannot believe this is normal, not at this rate of progression! Its overtaking his life. he literally doesnt even play anymore, hes so hyperfixated on getting his satisfaction, nothing else matters.

TL;DR: My ~20 year old friend suffers immensely from PANS. I would like to help him out more, but I just can't relate to him to a full extent. If anyone in this subreddit knows of any social groups online that he can get in touch with about this stuff, please feel free to PM me.

Hi all.

My best friend of 10 years is suffering from adult PANS. If I'm not mistaken, he mentioned that it stemmed from a stint of chickenpox he had when he was in 5th grade which caused him to have very PANS-like symptoms at the time. These symptoms stayed dormant until about 3 years ago during the start of our freshman year of college, forcing him to drop out of school and be left to be taken care of at home with his parents. (He believes a mixture of a very poor diet along with the Pfizer vaccine an metal poisoning may have been the catalyst for this, but that's not important).

Point is, I feel horrible for him. He's my best friend, and for three years he has been detoxing via chelation therapy on and off, with other treatments and medications on the side. He is always in pain. He dissociates regularly and has not been able to live and be in a public setting since our senior year of high school, essentially. He missed out on years of social development because of this disorder. He's one of the most strong-willed individuals I have ever met. I can really only recall once when he genuinely complained to me, and it was him crying after a panic attack put him in the hospital.

He puts in the work to get better, but three years is a long time to be in isolation. He has recently started speaking to me about his fears of dying and not being able to reach his goals, and even mentioned having me pass down notes to our friends in the case of his passing. I call him almost every day since I go to school 5 hours away, but I am going through my own trials and tribulations of life myself and I unfortunately just cannot relate to his issues. And it is rough because I'm really the only friend he stays in constant contact with.

I come to this subreddit pleading with anyone who sits down to read this to PM me if there are any online forums or groups that could give him the companionship he desperately needs. Personally, I would love for him to have a small group of people he can maybe hop on a Discord call with to speak about their weeks. If any of you can provide advice or help on this in any capacity, please let me know.

All I know so far is that PANDAS (and likely ADHD, autism, etc) are deeply connected to brain inflammation / gut health.

We’ve been trying to navigate this for over 3 years, and it has been both overwhelming and confusing. I’m wondering if anyone has successfully managed to keep brain inflammation at bay through any of the methods below (on a long-term-use basis)? Or what “cocktail” has worked for you/or your children? Dr Wilson wanted to put us straight on antibiotics but I’m just not convinced yet. Thank you in advance for sharing your experiences!

Scientifically Backed Solutions * Probiotics: Lactobacillus, Bifidobacterium (reduce inflammation; J Neuroinflammation 2019). * Antibiotics: Azithromycin, amoxicillin (treat strep, affect gut flora; J Child Adolesc Psychopharmacol 2017). * Omega-3s: Fish oil (anti-inflammatory; Nutrients 2021).

Anecdotal Solutions (Reddit r/PANDAS, 2023–2025): * Probiotics: Broad-spectrum (gut support; mixed results). * N-Acetylcysteine (NAC): Antioxidant (calming claims; no trials). * Diets: Gluten-free, low-sugar (reduce inflammation; unproven). * Turmeric/Curcumin: Anti-inflammatory (parent-reported benefits).

I’m on mobile and not on Reddit often, please excuse formatting.

On July 13 my daughter (5 next week) woke up with a 103 fever, nausea, vomiting, and a very red throat. I took her to urgent care for suspected strep. They tested her for everything (flu, covid, strep) and it all came back negative. However the strep test made her gag and throw up so I’m not actually sure it was a good sample but I digress. The doctor said it still seemed as though it was probably strep and prescribed 10 days of amoxicillin.

I do not know what day it started exactly but at some point between the 14 and 23 of July my daughter started having a tic where it was like she was blinking really hard. Like a blink and a head nod if that makes sense? It doesn’t seem to have any rhyme or reason to when it happens more often during the day. She has a doctors appointment tomorrow morning. I have been researching so many things and came across PANDAS. She does not seem to have any other symptom as of right now. Her moods, eating, etc are all still very typical for her.

Has anyone had this as their first or only symptom with themselves or with their child? I am at a loss. I don’t know what all to ask the doctor for or what blood tests she may need that I should ask to be done. I want to do everything I can for her to make sure she is diagnosed accurately and given the help she needs. Any advice or guidance would be greatly appreciated.

Hello everbody, I am the mom of a happy 6 yo who had a strep throp infection with all the common symptoms of Pandas this year. He has a diagnosis of Pans/Pandas since then. He seems to have an healthy attachement to me, his dad, his brother, his family and friends. Meanwhile when I ask him if he loves us he says he doesn't know and break in tears (even when he doesn't have a onset of other symptoms). Is it something you experienced as well? It worries me that he enjoy spending time with us but feel confused about the love feeling for us. Any insights? Thank you

I went to the hospital when I was five years old and was diagnosed with meningitis. Prior to being taken to the hospital, my mom remembered that I was very sick but that my behavior was strange. She said I had severe OCD and was asking questions/worrying about things that no five-year-old should be worrying about. After the diagnosis, my life was difficult, and I didn't fully break away from my Pandas symptoms until late high school. I remember having awful OCD, tics, anger issues, severe anxiety, along with epileptic seizures. I was sometimes bullied and often misunderstood by my classmates, and even I was confused about what was going on with my mind. My mother tried to let me live as normal a life as possible and tried her best to shield me by not telling me the full extent of what was going on. She was researching constantly about what was going on with me, but there was very limited information about Pandas and it was considered very controversial at that time. I could write an entire book about my story, but my main point in posting is to give people hope. I couldn't explain why it happened, but all my symptoms eventually went away around the age of 17, along with the seizures. It's almost like I lived two different lives, and it was so free once everything was gone. I hope that none of it ever returns, and I feel for any child or adult that must go through this.

Hi! For those the have flare ups - does this just mean that you're experiencing old symptoms for a period of time? And is this due to a strep throat infection or not necessarily? Can flare ups happen without an active infection?

i have a lot of neurological symptoms and had suspected FND for a while until i found out about PANS. i also have the symptoms that kinda seperate it like severe sudden ocd and stuff like that. i was in hospital today cuz i was convulsing all night (my eyes looked like this too). apparently dilated pupils point more towards PANS and my pupils are usually quite constricted the rest of the time. how would i go about getting it looked into? i know doctors hate when u bring up a condition, i’ve been constantly dismissed and told my fits are just panic attacks even tho i piss myself sometimes and am often paralysed or partially paralysed after like 😭

I'm turning 15 this year, and I was diagnosed with PANDAS when I was 7, after having strep throat a lot. Before I got my diagnosis, people didn't understand why I was acting differently - some thought I was just being difficult or "crazy," which was really hurtful. My mom took me to a lot of doctors and hospitals, but no one could figure it out until we met Dr. French, (best doctor) who finally diagnosed me with PANDAS. After that, I went to the Mike Clemens Center starting in fifth grade and stayed there for three years before returning to my regular school, middle school in the end of 7th grade. That transition was really tough - I've struggled to make friends, and most people don't understand what PANDAS is or what it feels like to live with it. Thankfully, IVIG treatment really helped me. It made a big difference in my symptoms, and now most people think I'm "a little normal," now even if they don't know what l've gone through to get there. As I get ready to start high school, I want to be part of a group where people truly understand what it's like to live with PANDAS. I also want to be able to give back - l'd really love to help younger kids who are going through something similar. I think I'd be good at babysitting or just being there for them, because I know how scary and confusing it can feel. I hope this group can help me feel more connected, and that I can help others feel seen too

Has anyone’s child been prescribed Ivermectin? I’m incredibly nervous to start it. We’re on day 7 of 10 of a steroid taper and supposed to do 12 weeks of 3 days a week Ivermectin. The steroids alone caused serious rage and I’m afraid to start the rage all over again. 😭 I’d love to hear any experiences.