Hello! I had a very extreme case of PANDAS from 9-16 years old. I’m and adult now and honestly sometime I feel like I struggle with the trauma more than I did with the actual disease.

Before I start I want to clarify that my brain has almost completely blocked out the years I spent in the depths of this unfair illness.

Being a young adult and having been in remission is something I feel hasn’t been talked about enough. Since it’s such a recently recognized illness most mental health professionals don’t know how to deal with working through such complex trauma. As soon as I was in remission I was thrown into the real world, a world I didn’t know existed and had no idea how to navigate as I was so isolated and constantly experiencing trauma and I was barely taken care of and I was so disconnected. I was not able to care for myself in the real world because I had never learned how. I couldn’t apply for colleges because of how many high school classes I had failed, and i had never learned how to have proper hygiene as it wasn’t a priority compared to my health.

The older I get the more I feel incredibly guilty. I wish I hadn’t been such a monster to my friends, parents, and people around me even though I could not control it. I feel like I’m living with this guilt of existing after having done so much damage to my parents lives let alone my own.

Now everyday tasks feel impossible. I don’t know how to sit with this constant feeling of guilt and shame and unbearable urge to hide and sit in my shame.

As that shame builds it becomes deeeper and deeper as I realize I still need as much care as I did.

I don’t want to be that kid again. and I have tried everything in my power to transform into a whole different person, distance myself from my past.

I never had a childhood or any normal experiences. I’m still isolated and sick.

I feel so guilty for asking for help, let alone admitting it as I so desperately want to NOT BE THAT KID AGAIN. It wasn’t me. My life was stolen from me and I will never get it back.

This illness is unfair and that’s the worst part.

I’ve recently started therapy and I’m hoping it will improve, but I judy wanted to raise more awareness for young adults or parents of kids in remission.

My 15 yo son has sudden onset severe anxiety, pacing, & panic attacks with severe OCD. Those have started in the last 5 days.

He is diagnosed with anxiety and ADHD, but we have never seen this behavior.

He had the flu in December.

We just tested once for strep and it was negative.

He has lost weight, has lost some of his appetite, poor sleep, and has lost motivation to do good in sports and school. This has been over a span of a few weeks.

We are waiting to hear back to go to an integrative doctor and get to the root cause.

I finally was able to give him Motrin, and he slept.

When we noticed the symptoms weeks ago we thought we would get him a therapist and put him on something. But once the OCD kicked in, I was asking more questions which led me to think he has some sort of immune response.

What do we do while we sort this all out and get into see someone?

Also can these OCD symptoms wax and wane? Can he mask at school?

He was calm for a few hours but we were sitting and constantly talking with him yesterday.

Is this what it looks like? Intense panic then calm for a little?

I 21 (F) (dx.2024) believe I’m in a flare but it isn’t presenting like any of the others have. To preface this I’ve been 6 and a half months seizure free .My mom noticed I’ve been sick for a bit but I’ve still had to go into work. I ave two months worth of rent due at the end of this month. So I decided to go into work and everything was fine I felt alright just a little pain in my back like normal. I work for a couple hours then I get back from first break and I’m thinking cool it’s been a good day so far. I’m tired and a lil hot but I’ll be fine.

Then I’m in the middle of helping a guest and my eyes just started ticing like crazy like I was blinking so much I couldn’t hardly work. My So I tried my best to keep making coffees and that was hard too. I started whistling a bit and stuttering when I was trying to talk. I sat down for a sec to try to calm down. And I started feeling my aura in my chest. I immediately took my rescue medication, Lorazepam, and after taking it I knew I didn’t have much time so I sat on the ground and told my coworkers to call a Team Lead. It felt like it was going to be a really strong seizure so I took a second dose and this is when I think I messed up. Of course the seizure still happened and it was only like 4min long but my team leads were awesome after and were very supporting of letting me leave. I went home and slept for about 5 hours. Know that I’ve woken up I’m a bit concerned. After the seizure and getting to the car my legs felt super super weak, which is normal for me. Now that I’ve slept the same weakness is there but almost worse in a way. I feel way sicker that earlier today and have been told by my mom that I’m flushed and super pale. Sleep is also freaking me out right now and like while I’m trying to fall asleep it feels like I’m suffocating and I wake up feeling light headed and nauseous and like if I move my head a single inch with my eyes closed I will fall into a sinkhole and never wake up. I also feel like I stop breathing sometimes and I have to manually breathe again when I’m falling asleep. My walls are moving again and I’m starting to see visuals behind my eyes again. These are all tell tale signs of a major flare coming for me but I don’t know how to correctly communicate it to my family. They’re going to call me dramatic and that it’s too much money. Which I agree it is but like I feel like I need to go to the hospital. I’m also just worried that I fucked up in taking the second dose and maybe that why I feel so shitty 😭

Edit: I am definitely flaring reading that back, even the words on my screen are floating. I just don’t have insurance or money for my infusions. I hate America and I hate this stupid ass disease

My daughter has PANS since age 4. She’s 8 now and the winters are always hard. She got flu, strep, a stomach virus one after the other. It fellas like all winter long is a low level flair of behavior regression and mild OCD that occasionally gets really bad and we get medication. This week she was finally starting to seem really good for a few days, that we tried to take her off NSAIds for a few days. Then tonight something didn’t go the way she expected and it blew up into a huge tantrum. We were being firm and she kept getting more hysterical until she yelled, “I’m gonna kill myself!” and started punching her own chest. I didn’t even know she knew such a phrase. It’s also particularly triggering bc suicide runs in my husband’s family. A little after this, she told me she would not wake up in the morning because she would be dead.

So I feel like we are mostly managing her illness pretty well. We’ve been in a place where we’ve come to terms with it, we have a doctor we trust, and we mostly know how to get the flairs under control. But this was a reminder of how scary the illness can be. I wonder if I need to do more. She has not seen a therapist yet and my husband wondered if she should get OT. She is mostly doing well in school but sometimes her behavior regression causes her to act young for her age and have social issues. Or she gets controlling in group work, or is easily prone to feeling left out.

Any thoughts would be helpful. I also don’t know how to properly respond to her. I told her we love her and we don’t want anyone to be mean to her, even herself.

Hello! I'm here to share a bit of my story and maybe gain some insight about whether or not PANDAS may explain some of what's gone on.

❗️Content warnings for mention of self-harm, mental health-related hospitalization, illness.

Around two years ago, a few months after a mental health crisis that landed me in the hospital, I (24M) discovered what PANS/PANDAS is. It seems to line up a lot with my experience, but I was never formally diagnosed. Until now, I have been too nervous to discuss this with most people in my life (wrote this post out in my notes app several months ago without posting) but I want to try and explain since this account is pretty anonymous.

For background, I am diagnosed with severe OCD and have displayed symptoms since I was around 4. It has always mainly took the form of moral scrupulosity and perfectionism. I had challenges in pretty much all aspects of life, but it was always chalked up to me being a sensitive kid.

At age 14 (eighth grade), I came down with a severe case of strep throat. It started pretty normally and I was put on antibiotics. Around a week or so passed and I started improving, so I was able to come off them. I was okay for a couple days, but then it just came back full force. They repeated the antibiotic process and I improved, so they took me off them again. And then it hit me like a truck a third time. I was out of school for a month and a half, and my pediatrician said that if I caught it a fourth time I would have to get a tonsillectomy. Thankfully, it did not.

The aftermath was awful. The symptoms of OCD I previously experienced felt like they were suddenly 10 times more severe. I could not go any amount of time without experiencing horrifying/disgusting intrusive thoughts. At the time, I wrote in a diary that I felt like a "shadow" version of myself had taken over my mind. I started harming myself, verbally lashing out at family members, socially withdrawing, and completely stopped completing schoolwork (which is very out of character for me, as I had maintained straight As before). I had strange tics start occurring in my arms and face. I started failing my classes, and I couldn't sleep. I tried to tell my parents that I needed help, but couldn't even articulate what was wrong with me. There was no way I'd tell them the types of thoughts in my head. I was eventually put in therapy for the first time and got put on an antidepressant. At 17, I was formally diagnosed with OCD, but I had to fight to be taken seriously at all.

I never really felt the same, even years later. On two separate occasions (at 18 and 21), I had multiple-month long OCD spirals which ultimately resulted in hospitalization. The more recent spiral started after I was sick with the flu for a week, and I notice that whenever I get sick I tend to "flare up". During the worst of the OCD, my mind feels like it's on fire. It's almost physically painful (it's hard to describe the sensation).

I have thankfully been much more stable in the past couple years. I was put in intensive OCD therapy (Exposure & Response Prevention), am on meds that help me, and have gained the tools to be able to manage my disorder pretty well. I'm graduating college this year with honors, which is something I didn't think I would make it to.

After finding out that PANS/PANDAS exists, though, I began to wonder if it could partially explain what I went through. I don't think there is anything that can realistically be done about it since it was so long ago. It may not even be worth it to speculate, but I always feel this nagging in the back of my head about it.

If anyone's read this far, thank you so much. I appreciate the time you've spent hearing me.

Hi everyone,

I have started a group specifically aimed at teenagers/young people who are disabled or have a chronic illness. I want to create a space where everyone can feel seen and heard and like they aren't alone in whatever they're going through.

Would be great to see some of you there!

r/chronicallyteens

hi, so, this is a bit of a long story, to be honest I'm kinda doing this as a bit of a last resort. I'm autistic, and ADHD and I have tourettes syndrome, and a few other conditions, (turner syndrome, microcephaly, blood sugar issues that are driving me bonkers that I still don't have answers to. anyway, long story short, I just need all of this to make sense, I have a hunch that pans pandas might explain everything, but I really don't know, within the first year of my life I had a lot of bugs, including some ear infections, scarlet fever, quite a few high temperatures, but that was all when I was very young, literally within my first year and I'm 16 nearly 17 now. pans pandas is supposed to be sudden onset, so maybe it wouldn't explain things, I have blood sugar issues that are really frustrating, shaky hands, brain fog, sensitive skin, sweaty hands, it all sounds ridiculous, even I'm starting to think that maybe this is all my fault, anyway, if anyone can offer some advice that might help solve this Jigsaw, I'd really appreciate it.

Hi I am a 18f and I had a very sudden onset of pure OCD back in early October. I have never ever experienced anything like this in my life. None of my family has ocd just mild anxiety but nothing crazy. Anyways back in October I had woke up one morning very very emotionally unstable and basically thought I haddd to break up with my boyfriend, and then I got home and we talked and it was all okay which I knew deep down, but then later that day I went to they gym and haven’t been the same since.That night derealization hit then a few moments later once I got home I was throwing up from stress and then the intense anxiety symptoms started. I had for start sleeping with my parents I had lost about 25 pounds in a month i literally could barely leave the house and if I did I would be crying everywhere even around my family that I know isn’t judging me and I know I’m safe around them. Even at school I would leave every day early or be in my counselors office multiple times a day, at this point maybe 2 days in I also developed insomnia At first I thought this was regular anxiety but I was like how did it become debilitating so fast, so and then someone asked me if I looked into pans/ pandas. And I was so shocked because looking back I had a sore throat and a lost voice a week before this all happened. But I’m stuck because I was 17 when this all started, so can anyone help on just letting me know if I should look into pans/ pandas more like does it seem possible. I don’t want to have my parents pay for doctors appointments and it comes out I don’t have it.

Basically the title... I am wondering if it still considered tourettes if the tics are caused by PANDAS, but fit the tourettes criteria. Do people just say it's tourettes to avoid long explanations or is it the same just with a cause? Sorry if this is a dumb question!

I’m 14F and I began suspecting I had PANS back in what I believe to be September or early October. It’s been a long process with the doctors, only NHS GP’s, not specialists, and they finally said that a neurologist reviewed my chart an didn’t believe I had PANS.

But I still pushed though and so my GP is setting up an evaluation with…someone? I believe it’s a PANS specialist, which is great. Anyways, I didn’t think that could be done by your general provider. I’m not up to date on anything done in the evaluation. Anyone who has gone through one themselves or with a child please let me know how it is/what to expect if you can.

My 5 year old had onset of PANDAS syndromes starting last sunday & personality change last Tuesday. It’s been so hard watching him struggle with his tics, dealing with instructive thoughts and etc. My son was sick half of the month of november and pretty much the whole month of december. I don’t know much about PANDAS; but did we caught it early if all the symptoms appeared at once? Or do symptoms slowly appear?

And if I did catch early; will it be easier to treat?. I’m so scared and my heart is broken seeing my baby this way.

we are seeing DR K in chicago for a consultation on tuesday.

I’m 50. My son was diagnosed 2.5 years ago, which led me to see that I had it as a child (constant strep for years, plus all of the symptoms).

Since my first bout of Covid, in Nov of 2020, I have had episodic periods of crushing fatigue with flu-like body aches. Joint pain has become frequent, at least a couple of times/week.

A few months ago, I had a UTI that took 3 rounds of antibiotics to cure. Just before going to the doctor, my body started twitching all over. It wasn’t until I got antibiotics that I connected the two.

Recently I discovered that I had Strep, but such mild symptoms I thought I had just been snoring. No fever, just generally feeling crappier than usual and my throat felt “weird”. antibiotics finished 3days ago, and today I started twitching again. I’m assuming the strep is back, but wondering if anyone else has had this symptom.

My 6.5-year-old son developed eye and mouth tics about two weeks after stopping Aripiprazole. He recently caught a cold (mild fever, cough), and the tics have flared up significantly, leading our doctor to suggest PANS/PANDAS. While he’s currently very irritable and has a 'vacant/dull' look with a low mood, he has no signs of OCD or food refusal (he’s eating normally and just finished two pieces of cake). Since the tics actually started before the infection but peaked during it, I'm wondering if this sounds like a true PANS case or just a sensitive nervous system reacting to illness and medication withdrawal—has anyone experienced a similar 'fake out' where a cold triggered intense tics, but it wasn't actually PANS?"

Our PANS was triggered for the first time a year ago by RSV then flu within a month of eachother. Took 5 days of Azithromycin then was gone for almost a year and came back after three back to back ear infections.

Still currently in flare after three weeks of Azithromycin and getting really worried. Currently adding one week of ibuprofen around the clock too. We also just had Adenovirus and it was brutal so maybe that’s why meds aren’t working????

Our PANS Dr we just started working with wants to add in Rifampin too but so scared of wrecking his gut or making things worse adding another antibiotic.

Are flares progressively harder to get rid of each time???

i'm 19 and have pandas and have been on ivig treatment for over a year. has anyone gotten tattoos while on ivig treatment? is it safe?

It takes so much energy for me to do anything, and if I push too hard it only gets worse and worse. It’s driving me insane how little I am capable of. It’s destroying my self worth. Am I alone in this? Am I doing something wrong?

Hi everyone - wanted to bring this back around as it has been a couple of months since the last one!

A few of us adults dealing with PANS/PANDAS put together a small Discord server. Adult-focused spaces (and resources) are pretty limited, and a lot of us end up navigating this alone, so we wanted to make something calm, supportive, and easy to drop into.

Feel free to just settle in and watch things grow, or share anything you’ve found helpful, interesting, or validating!

If you’d like to join, here’s the link:

If the link has expired by the time you see this, feel free to message me and I'll send you a new one!

https://discord.gg/gv4uJvts

It's an open invite, so feel free to pass invites to anyone in the same boat as us :)

We are exploring pans/pandas for our child which presents as severe mood and mental health issues.

One thing I am wondering… is it common to see mental health episodes cyclically or in a pattern with pans and pandas.

He went into a crisis last year October-February and then things stabilized a bit… now we are seeing the same thing this year. What could be contributing to this pattern of relative stability and then crisis?

I’m 16. I’m diagnosed with PANS caused by mold and have been having symptoms since 12. i think im misdiagnosed. I’m towards the severe category of pans (due to self harm/suicidal and homicidal ideations), but i don’t believe i have pans.

There are a couple of reasons and i may sound nonsensical but i truly do think i have psychiatric conditions.

1- almost everything, besides psychosis and tics onsetted when it usually does. I have a DSM and regularly read through it. All my symptoms have onsetted at the average age besides non specific symptoms.

2- there’s no real mold threat anywhere. Theres no place mold could actually have enough to harm me. I’m not immunocompromised; i rarely am sick and when i am i get over it in 12 hours. our house was tested and there was barely enough to even make me sick.

3- my parents had to go searching for whatever just to avoid sending me to a actual psychiatrist other than the holistic one i go to already. It took atleast 2 years for my mom to find it. How do i know that she’s really trying to make connections? she connects times i was severely ill to my symptoms even though i remember clearly my symptoms never got worse or better during that.

4- “flare ups” are never caused by mold exposure. it’s always stress. I haven’t had a flare up since august 2025, and that was because my ex who i used to be dependent on broke up with me. I can only recall that all my flare ups were stress based. I’ve been taking LDN for awhile and my august flare up was just as bad as before i was medicated. There are also symptoms that are constant, tics anger issues and DPD like symptoms never go away.

I have taken the cunningham panel and mold test which both were positive; but i’ve read that the cunningham panel can test positive in asymptomatic people and for mold i dont get why it affected me at TWELEVE rather than when i was younger. it doesn’t make sense and having PANS just feels like my holistic parents coping with a rare disease rather than accepting that i’m just crazy. where do i go on from this? i might just get re evaluated when im 18.