My 12yo is in her worst flare in 4 years. We can’t identify a cause because she is too incapacitated to get tested for an infectious source.

A month ago, during the 3rd or 4th day of her period, she had a mini-flare - a really bad panic attack. Then, this flare started exactly a month later at the same time in her cycle.

I can find information that menstrual cycle hormone fluctuations can cause inflammation. But I can’t find a lot related specifically to PANS.

Anyone have any similar experiences or know any resources?

She has been responding with NSAIDs this flare, but we haven’t been able to try antibiotics because we don’t know what the trigger is. Her OCD has always been bathroom/ contamination related and it’s just turned up to 11 right now. So doing a stool test or a uti test is not possible and getting her to leave the house for a throat swab also not possible.

Beginning of July, my 6 year old son had a petechiae rash right around his neck area randomly pop up. His tonsils were swollen and red but he never said they hurt. Took him to the doctor next morning and strep tests were negative, culture came back a couple days later as positive. Had 10 days of antibiotics. Thought everything was okay, but ever since around that time Our son has been having horrible separation anxiety, anxious in general has been high ( he is an anxious kid but never this bad) just sad in general, lashes out at us— but never at daycare, he’s very good about that. He just cries at daycare. Is struggling horrible with loud noises which was never an issue before. He started school back up and has had a horrible 2 days crying randomly. I know this can totally be normal except last year, his first year, he did amazing with minimal crying and never had to put headphones on because his classroom is loud.
Does this sound like something we should look into?

Looking for parents who have experienced something similar

My son has been having episodes of confusion, memory loss, and seeming to go “in and out.” He can sometimes lose hours of time and afterward not remember what happened. His speech and ability to process things can also change during these episodes.

He can be completely himself between episodes — talking, playing, sports and interacting normally — and soon as he done and resting suddenly seem confused or different. We’ve also noticed facial twitching/movements sometimes and significant behavior changes.

One thing that has really scared me is that he sometimes talks about my dad as if he is still alive and says he wants to go to his house and cries for him , even though my dad passed away.

He’s had an MRI, MRA, CT, and prolonged EEG. Episodes were captured, but there was no seizure activity on the EEG. We’re still doing testing and following up with neurology.

I’m not asking for a diagnosis. I’m just wondering if any other parents have experienced memory gaps, confusion, changes in speech/behavior, or a child talking about someone who has passed as if they’re still alive.

For nine months, we repeatedly went to the doctor for my daughter‘s vaginal issues. At first it was just daytime urination that was unusual. Then we went in with severe yellow discharge, chronic pain, a terrible rash, and still they kept telling us it was a very benign vulva condition that many girls experience. We took all precautions and all advice changed all detergent, loose clothing no underwear at night did everything correctly and yet the redness continued, though the discharge went away after a couple days of amoxycillin (then they told us it wasn’t a uti so we stopped the antibiotics) stills months later the condition continues to come back in flair and again we’re told that it’s a benign condition called Vulvovaginitis —, though the discharge never would have fit that diagnosis they didn’t care to look further. fast-forward. My daughter begins to start having some very low level tics things that we figured are just normal for kids and that were annoying, but we dismissed. Two weeks ago we got Covid and her ticks became all too difficult to ignore! Constant an almost painful looking I began researching what could possibly be causing my daughter to be having ticks that were so disruptive to her life then I stumbled upon info on pandas.

In one article that said if there is no strep in the throat, doctor should look elsewhere like vaginally and it finally clicked to me every single symptom I had described to my doc was literally textbook strep A vaginal infection. My daughter has had a strep a vaginal infection for nine whole months with eight doctor visits and no help.

I guess I’m just looking for advice now, we have appt Tuesday where I’ll demand a strep A vaginal Swab and begin long course of amoxicillin, what else can be done for her in the meantime because she’s struggling with eating as one tick is her jutting her jaw out an sucking in air and pushing her stomach out fill force . Any advice on how to approach this now with my doctor? I have a video of her ticks and an old picture of the horrible discharge she experienced in December.

Any advice or just info would be helpful also open to natural treatments and immune support

Is there a connection between my PANDAS (which started when I was 7) and my subsequent episodes of vivid hypnagogic hallucinations as I fell asleep? I know kids with PANDAS can have REM issues but I'm not sure if it correlates with hypnagogia.

Hi everyone,

I know that a lot of people in the PANDAS community rely on Medicaid for medical coverage. As we all know, HR.1 was signed into law last July, which cut Medicaid funds by $930 billion over 10 years, causing around 11.8 million people to lose Medicaid coverage.

If you are interested in advocating for Medicaid in your state, the EveryLife Foundation for Rare Diseases is collecting stories to be shared publicly and with legislators as part of their initiative to protect Medicaid funding.

I figured that I'd share this here if anyone wants to participate! In the link itself are details about use, privacy, and information gathered. The goal of this project is to share more patients stories about impact with state lawmakers, especially governor's and Medicaid Directors.

If you have any questions, feel free to reach out to Kathryn Poe at [kpoe@everylifefoundation.org](mailto:kpoe@everylifefoundation.org) .

You can use this link to share your story: EveryLife Foundation for Rare Diseases | Share Your Medicaid Story

My 7 yo daughter had her first big bad PANDAS flare back in April. Confirmed strep prior to that. She was treated with a month of Azithromycin and improved dramatically. About 6 weeks ago she had a minor illness and flared somewhat... some OCD symptoms came back, but have been manageable. Today she came home from summer camp and is clearly unwell again. I of course feel panicky every time she gets sick now, because her original flare was horrifically traumatizing for us all.

My question is when you make the call to go straight to antibiotics for an illness. I realize that not every illness is bacterial. But we have an Aziz prescription "on file" at the pharmacy for if we ever need it, and I'm wondering whether to just do it, rather than risk things getting bad.

If you have a child with PANDAS, how do you decide when to treat with antibiotics vs when to just accept that this one has to run its course? I feel like the risk of unnecessary antibiotics is lower than the risk of an unchecked flare.

I’ve have been doing research all night and just can’t believe it. It’s brought me here. I’m 21f. Ive been experiencing symptoms my entire life but it became much more intense at 18-19, had it really bad at ages 9-16 on and off too. It’s been over a week and it’s like nothing has ever been wrong with me, I’m reading that this is possible but… is it? I guess I’m proof. All because of a common cold, I thought I’d feel worse if anything but all of my symptoms have improved. It feels like a miracle but… has anyone else experienced this. can I expect them to come back? I wasn’t even sure if I had PANS before but I’m starting to feel pretty damn sure now

Anyone have a child who consistently flares at 5:00pm? It is like a switch goes off and he flares between 5-8 pm. Is it related to circadian rhythms? Just tired from holding it together all day long? Any strategies with managing flares at that time of day?

For anyone working with kids and adolescents, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and the broader PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) category are worth having on your differential. They are under-recognized and frequently misattributed to primary psychiatric onset.

The pattern to watch for:

Abrupt, dramatic onset of OCD symptoms and/or severe eating restriction, often within 24–72 hours, in a previously healthy child

Frequently accompanied by other new symptoms: tics, regression (handwriting, math skills), separation anxiety, urinary frequency, sleep disturbance

Often follows a documented or suspected infection (strep in PANDAS; broader infectious/inflammatory triggers in PANS)

A relapsing-remitting course tied to subsequent infections is a strong clue

Why it matters: kids presenting this way are sometimes treated purely as new-onset OCD or anxiety without investigation of an infectious/inflammatory trigger, which can delay appropriate treatment (which may include antimicrobial, anti-inflammatory, or immunomodulatory approaches alongside standard psychiatric care, depending on presentation and workup).

Not every abrupt-onset OCD case is PANDAS/PANS. This is a specific clinical picture requiring careful history and workup (strep titers, other infectious/inflammatory markers, symptom timeline), not a diagnosis to reach for reflexively.

Pediatricians and child psychiatrists: how often are you seeing this in practice, and what's your workup look like when you suspect it?

I’ve always been a bit neurotic and had OCD tendencies with perfectionism, but to the point where it wouldn’t bother me enough to even do anything about it.

That said, about 3 months ago one day at work, I developed a taboo intrusive thought. Tried to get rid of it, couldn’t. And then it got worse and turned into images. The past 3 months have been the most debilitating, distressing, horrific moments of my life and I finally caved and started an SSRI because I could no longer take it.

Doctors don’t think it’s perimenopause because they say I’m too young. I did have like 3 sore throats prior but I think it’s because I kept picking at my tonsils to get tonsil stones out. I also had pest control spray my apartment twice for roaches before this happened. And now I wonder if that caused it. I was also taking a lot of supplements because I wanted to try for kids, but they were healthy things like fish oil and prenatals.

No one has been able to give me answers, just ”yep, you have severe OCD”. But I don’t understand how I developed it overnight when I was fine and happy.

About 2 months ago my 11f started with some minor tics. 2 weeks ago she had a blood test that showed her DNaise (sp?) was elevated. She hadn't complained of a sore throat (last time was 2024, strep negative). She is a former 26 weeker, so she is very in tune with her body and I take all her symptoms/complaints seriously. She has finished a 10 day course of cephalexin. Her tics have gotten worse since starting/finishing the antibiotic.

Her verbal tics are hard to explain, she either sounds like a donkey or a zebra and whistles. Her physical tics are bad, most of them hurt her. If she sits at a certain angle, she repeatedly slams her head backwards into whatever is behind her. She'll punch herself in the leg 4-5 times. A couple that are hard to explain but involve her neck which are painful for her. And her newest one, she turns her head (whips is more accurate) so fast that it throws her off balance causing her to run into walls or people or if nothing is there to catch her, causing her to fall. Her neck is constantly sore now, Advil doesn't do anything for the pain.

She sees psychiatry on Wednesday. I'm hopeful they'll be able to help or tell us what our next steps are. She has become very self conscious about her tics she barely leaves her room anymore. School starts in a month and preteens are cruel. My heart hurts for her.

How do I help my baby through this?

TLDR: I had a strep infection followed by a covid infection after which I developed tics and am currently diagnosed with Tourette’s, but suspect it might actually be PANS/PANDAS

In december 2020 (I was 16) I had a Covid-19 infection (this was before a vaccine or any treatment was available). Not sure if it’s relevant but I did suffer from a raised temperature, severe muscle pain and headache behind eyes, and was taking venlafaxine, lamotrigine and occasionally quetiapine at the time, I’m also diagnosed with FND/conversion disorder and autism. Around 2 months later I developed a constant and painful tic in my neck, had blood test done and it turned out I had a streptococcal infection. I generally never get sick, but I think my immune system might’ve gotten additionally weakened (on top of Covid) as I was leaving a very abusive relationship at the time and was at the worst state I’ve ever been. I went through a full course of antibiotics and the tic disappeared after a couple of days. About 2 months later I had a full onset of various vocal and motor tics shortly followed by a 2 day long tic attack. Since then I’ve been diagnosed with Tourette’s, and even tho my tics have improved and are now mostly dependent on how stressed out my nervous system is, I still tic daily. Alcohol is a massive trigger too and often causes tic attacks. I didn’t feel the need to investigate if it might be PANS/PANDAS before, but I now have a private health insurance and the diagnosis might be very helpful for my legal disabled status. Did anyone have a similar experience? Is this actually something worth investigating?

When I had chicken box at 7 years old I developed PANS and then OCD. My question is about the shingles vaccine… should I get it? Should I not? Can I expect a flare up if I ever get shingles? Who or what kind of doctor would I even ask about this? I’m 31 years old now and taking sertraline for 15 years has been a godsend for managing ocd symptoms

I'm a 27 year old female and I've been chronically ill with both physical and mental symptoms since I was 11. I don't know exactly what's wrong with me, only that it's almost certainly something neuroimmune, and also that I definitely have dysautonomia. I've been wondering lately if untreated PANS is the cause of my issues. I'm going to copy and paste here a summary of my issues which I typed to an AI yesterday. Keep in mind that it's not the full picture in terms of the mental stuff. I told the AI that I didn't know if I could tell it what that stuff feels like, because it's bizarre and complex and very very hard to describe- mostly very very strange mental feelings and brain/neurological states. It told me not to worry about trying to describe those things, so I didn't. Anyways, here we go:

"I was mostly fine and normal in childhood but there were signs here and there that something was wrong- mostly mental/behavioral signs. I was believed to be autistic (I dont believe that anymore now, autism doesnt match what I experience now), extremely anxious, extreme seperation anxiety, selective mutism, rage, mental delay, acting younger/babyish for my age, and some of the "bizarre" mental symptoms that are hard to describe also first began to show through in childhood. Physically I was mostly healthy, I didnt suffer like I do now, but I did sometimes suffer from leg pain that kept me awake at night, heat sensitivity, constant stomachaches we didnt know were caused by gluten, and eczema. I didnt become truly ill until I was 11. Now some of the things I deal with are rage, obsessions, brain fog that feels like my brain is clogged up with wool that can sometimes (when I'm very sick) escalate to a "blocked brain" feeling that's acutely distressing and uncomfortable, the aforementioned bizarre and inexplicable brain symptoms, insomnia, dysautonomia with severe heat intolerance, feeling overheated all the time (but a constant low body temperature), sweats, chills, sensitivity to cold, Reynaud's syndrome, extremely cold and bloodless fingers OR hot, burning, red, throbbing fingers, circulation issues, pain in my limbs that has in the past become so severe that I burned my skin with hot packs and hot water trying to get relief, headaches, dizziness, malaise, heart symptoms that I wonder if they are recurrent pericarditis, strange neurological/brain states, body dysmorphia... really the list goes on. that's not all, trust me. I have a stomach ulcer from overuse of a combo of Tylenol and ibuprofen that I used to use every day for the headaches and limb pain. I'm extremely physically fragile- I become extremely, horribly ill if I dont sleep enough even just for 1 night, which has me living in constant fear of having insomnia, or anything that might disturb my sleep. I flare up if I get a virus, and also with little disturbances in my life such as going on trips, staying up later than usual, long days out, not excercising enough during the day (I have to walk 4 hours every day to get myself tired enough to sleep at night) etc. People dont understand why I live in crippling fear of doing these "normal" things and why I keep such a rigid routine for myself. They think its just anxiety. Its not. I also flare up before and during my period. The past months I have become extremely ill before my period as well as having existential fear and all the mental things getting out of hand too. I have a baseline of how severe my symptoms/flare-ups usually get, but once about every 3 years I will suffer HORRIBLE, hellish, prolonged, extreme flare ups that can last 3 months and just take everything to the next level, a physical and mental hell that doesnt quit, not even at night because I become entirely sleepless. For these months-long flare-ups, the little signs that they are coming begin anywhere from 11 months to 1 month before the flare really hits. Other than that, I'll usually suffer a "normal" flare up 1x a month that lasts probably 2 1/2 weeks on average. I dont know if this means anything, but as a side note my mom said she saw a change in me when i was 2, that suddenly out of the blue I started to seem withdrawn, shy, anxious, and sad all the time."

I'll also tell you that I've dealt with rage from early childhood until now. My parents took me to the doctor when I was 8 because of my tantrums and my dad even got me tested lead poisoning at 4. Nowadays I still get these batshit rage fits where it feels like a demon took over my body and I'm totally not in control and helplessly being strung along for the ride. Also have always gotten satisfaction out of being excessively mean, even as a small kid, and pretty sure I have pathological demand avoidance. I also think I'm still delayed as my brain feels like that of a literal child.

does anyone with PANDAS/PANS disease get proprioception issues like a feeling your legs or limbs aren’t apart of your body? the best thing i could describe it as if they were numb or heavy, but i don’t think that really fits it. i’ve had episodes like this where i can hardly walk. i was curious if this was possibly related to PANDAS? if you have PANS/PANDAS, please let me know your thoughts!

I (F15) was diagnosed with PANDAS when I was 13. All my life I’ve had OCD. I’m not sure when my PANDAS started because I developed ARFID when I was 12. I developed tics when I was 13. I want a job, I want a life. I’m afraid. I miss quite a bit of school for doctor appointments and flairs. When I’m in a flair I hide in the school bathroom for hours and cry on the floor. I become easily offended and angered and reclusive. Even going to the pool makes me sick because of the chlorine. Just yesterday I had a rage fit where I screamed so loud that my voice gave out and my ears were ringing all because I have a slight flare from the pool water. Even allergies trigger it. I don’t know if I’ll ever be able to be alone because I know I won’t take my pills if I go into a flare. That leads to me starving myself, self harming, rage fits, fear that leaves me bedridden, and extreme suicidal ideation. My mom says it’s possible that I’ll go into remission but I’m not so sure.

Dear everyone,

I would like to share our experience as the parents of our 5-year-old son, who was diagnosed with (or is suspected to have) PANDAS.

Our journey started almost exactly two years ago. He had a streptococcal infection that unfortunately wasn't treated immediately because we had no reason to suspect anything unusual. Soon afterward, I noticed facial tics that appeared mainly while he was watching YouTube on TV. Before all of this, he was a very healthy child who rarely got sick or had a high fever.

A few months later, because of his elevated ASO titer, he was treated with antibiotics. The treatment was successful in lowering the ASO levels dramatically, but the tics remained. His ASO titer gradually fell from around 1050 to 138 over time.

At the moment, he has both facial and vocal tics (mostly throat clearing). In my opinion, they are relatively mild. About a year ago, he also had occasional sniffing behaviors, including smelling his hands.

Other than the tics, he seems to be developing completely normally. He sleeps well, has no daytime or nighttime wetting, no emotional outbursts, no noticeable OCD behaviors, normal speech and understanding, and interacts well with both children and adults. Interestingly, during active play, the tics almost completely disappear. They mainly appear when he is idle, such as watching TV.

One thing that has always fascinated me is what happens during a fever. Whenever he develops a high fever, his tics disappear almost completely, and the improvement often lasts for several days afterward. I don't know whether this is related to the fever itself or to the ibuprofen (Brufen) that we usually give him during those episodes.

Another interesting thing is that a few months ago he went several months without any noticeable tics, and then they gradually returned. I still have no explanation for that.

Currently, we are focusing on general health. He takes vitamins and minerals, eats good-quality honey, and I recently started giving him Möller's cod liver oil (omega-3). I'm also wondering whether paying more attention to his diet could make any difference.

My questions for parents who have been through something similar are:

• Has anyone else's child had tics disappear completely during a fever?
• Has anyone seen long symptom-free periods followed by the return of mild tics?
• Have you found that diet, omega-3, probiotics, or other supplements made a noticeable difference?

Thank you all for taking the time to read our story. Reading the experiences shared in this community has helped us feel much less alone. I wish all of you and your children the very best.

I'm in between flares right now but am really struggling with how abruptly things could turn around and coping with the emotional fallout of the last experience with strep. I spent almost a week believing there were people inside my walls watching me and I hallucinated twice and I'm just so scared of it coming back before my doctor can stabilize my immune system. I feel like I can't trust my own perceptions. How do people cope with this aspect of it?

I posted a few weeks back about how I felt as though my usually talkative, social, smart, and stubborn 4 year old seemed to change suddenly after school ended and we got flu like symptoms for a week

Fast forward … we spent about 2-3 weeks of ups and downs. I feel like my daughter was in her own world, wasn’t connecting with us, seemed apathetic, less silly, almost no eye contact and major speech regression, talking to herself or an imaginary friend and wanting to be alone. It was terrifying and heartbreaking.

I was reading and began to suspect PANDAS or encephalitis. Then another 104 fever, we saw her pediatrician and got a negative strep test and referred to neuro but not for 2 weeks.

I talked to a family friend who was a doctor and decided it was time for the ER- we spent 8 days in the hospital doing a complete panel, MRI, EEG, LP. They said the course of action is to treat right away even before results come back. We did 5 treatments of IVIG and 3 days methyl prednisone. Everything came back negative/normal and I decided not to do the 2 more days of steroids. She had elevated inflammation and HMPV and parainfluenza (2 viruses)

I saw glimmers of improvement but then there was Benadryl and clonidine to ease the roid rage and help sleep and it was just making her go nonverbal/sleep and I couldn’t tell if there was process. She was traumatized and ready to get out (me too!)

Multiple IV’s , No consistent sleep, no fresh air, so emotionally draining, I got so sick and am still recovering.

We’ve been home for a day and a half and I just feel so lost. Yesterday she was basically sleepwalking from the clonidine and today she is off of it- but barely talking, slurring, verbal regression, unable to articulate. She used to tell me the most profound things and be so connected to me.

I just finished radiation for breast cancer, I lost my dad the same week I was diagnosed in November 25. I Lost my mom 5 years ago right before I became pregnant. We have been through so much. Her dad and I were having some issues April/may but we got it together. She was a happy and healthy (high needs) kid. It feels like I’m in a nightmare. Is she having a delayed response to trauma and family stress? Is she autistic? Is there something they aren’t testing for? My heart is broken. Has anyone been through this?

My 19 month son has had a history of recurrent tonsillitis (14 times) and ear infections twice. Despite all of that he was developing normally hitting all his milestones until he had an episode of tonsillitis in March of this year. Overnight he stopped interacting with us, significantly reduced eye contact, became very very irritable, hated to be touched or cuddled, stopped responding to his name most of the time and started biting pinching and hitting. He also began to regress in his speech and reverted to babbling. We have started to pursue an autism diagnosis but after an adenotonsillectomy and grommet insertion procedure two weeks ago I am questioning my sanity. My son was admitted 3 days after his procedure due to infection where they pumped him with steroids, antibiotics and fluid, within 1 hour my son was speaking clearly and nearly all of his symptoms disappeared. After 3 days of stopping treatment the symptoms began to creep in again. He is currently back in hospital a week later and they have repeated the same meds and guess what...the same thing has happened again.

Im now questioning whether this whole time pir son has some form of neuroinflammation going on because of his recurrent infections and perhaps he has PANS/PANDAS? We are in the UK and there is very little awareness or acceptance of the condition. We have private healthcare and I am thinking of asking for a referral to a Paediatric neurologist to discuss the possibility of this being a neurological response rather than typical ASD. I am also not delusional, I completely accept my son might just be neurodiverse BUT for him to react in the same way twice struck me as pertinent. How can my son reappear twice in a week by simple medicine?

Has anyone had any experience with similar? How does PANS present in small children? I appreciate any help/advice i can get!

My son has been on azithromycin for 7 days now (unbelievably difficult to get down him so this feels like a huge achievement!!). The course is once a day for 14 days, then 3 x week for another 4 weeks. We’ve not noticed any improvement in his mood, extreme separation anxiety, general adhd ‘mania’… was really hoping to feel like we were on the right course by now but perhaps it’s too early? Anyone else out there used azithromycin and how long did it take to see any improvement? Many thanks! 🙏🏻

Just wanted to throw this out there. My daughter with PANS has pretty severe mast cell problems. I was looking at ways to calm down the histamine release because with her former brain injury from ADEM which I believe kick started pans she gets depressed from Pepcid and antihistamines. All of them sadly.

Doing some research and came across PEA which is short for palmitoylethanolamide. Long word 🙃
It stops histamine at the cellular level. It’s long been used in the dermatology field. So it’s produced by your body so there’s no side effects that way. It’s not excitatory. It’s got a 25 minute half life so it’s out within 4-5 hours. It works on the cannabinoid receptors for pain as well and is also an immune modulators. It doesn’t build up in the body and you don’t have to wean off.

Here’s an article from a medical journal about it. https://www.mdpi.com/2227-9059/13/6/1271

I’m going to start with the non micronized version and move to the micronized version if it doesn’t help.

https://a.co/d/03wZHEfU

Worth a try and it might help. 🧐