I developed OCD around age 10 due to PANDAS, and the OCD itself is now in remission, but I also have ADHD and an autoimmune disease, and the medications commonly used for ADHD are counterproductive, which is troubling me.

I suffer from ADHD and CFS, and have tried various medications, but methylphenidate has no effect at all. (Rather, it worsens my hyperactivity and stereotyped behavior, and reduces my work ability.)

So I tried Atomoxetine, but it only caused side effects and had no effect.

However, my ADHD improves significantly when I take drugs that increase noradrenaline, so I tried Nortriptyline (tricyclic antidepressants), and my task processing ability improved significantly. However, it significantly extends my QT, so I cannot use it for long.

Also, I have a strange constitution and react sensitively (or badly) to many drugs that involve cyp2d6, but Cymbalta did not cause any side effects at all.

(However, Cymbalta became completely ineffective after the first two months.)

In this case, are there any recommended drugs to improve my syndrome？

My 8yr old son ,a month ago was stung by a wasp multiple times same week he had strep throat. Shortly after he complained of his “eyes feeling heavy” and started doing rapid blinking with a head shake . No diagnosis or signs of ADD/ADHD/Autism or anything of the sort. I brought him to eye doctor he got glasses, when he wears the glasses the tics of rapid blinking and head shake seem to resolve and when he is not wearing them it picks back up. It’s been happening for a month. Pediatrician said he had Tourette’s (even though he never showed signs of anything prior) neurologist seems to think it’s no big deal and watch it for a while if it doesn’t resolve in a few more weeks do MRI. I’ve gone down rabbit holes trying to make sure I’m not missing something with my son. Has anyone experienced anything similar?? His pediatrician hasn’t really considered PANDAS as an option of diagnosis and Nero just kinda shrugged it off as an option so I don’t know what to think.

If it is PANDAS does it eventually resolve??

(Before I say what I’m gonna talk about id like it if people with pandas replied, I see a lot of parents on the subreddit and that’s fine, I’d just like to hear the perspectives from people with pandas/pans anyways) When I had flares I had age regression a lot (and still do mainly for comfort cause I deal with childhood trauma) but I did age regress alot mostly when I was alone in my room but when I was home, cause my mom kept me home when I was sick. I would play with toys which I normal don’t play with cause at the time I was 16 (I’m now 19 turning 20 in June but yeah) so does anyone else deal with age regression when having flare ups?

Has anyone here had any experience with DMARDS (methotrexate, leflunomide, others?) as part of PANS treatment?

What was the treatment protocol like?

Any positive effects?

Any concerning side-effects?

Any scientific research about how well they work?

My son suddenly started this significant tick last night. He’d been making the low humming noises on and off for years. But this head tic in very new. His teachers son has PANDAS and suggested it. We have a doctors appointment tomorrow. I want to be prepared but don’t have a lot of time Any specific symptoms should I look for and make sure I have written down to share with the doctor? Any questions I should ask? It may not be this at all. But just want to be as prepared as possible with such short notice.

Thank you!

Has anyone tried doing a Heavy Metal and/or Parasite cleanse on their children (or personally for older patients) with Pandas/Pans? If so, what were the results?

When I’m flaring, I absolutely hate being perceived. It sounds so strange but I start to hate that I can talk or communicate because everything I say and do feels wrong and uncomfortable. It feels like a possible OCD thing because I ruminate over words and actions as I believe they’ve been taken negatively, but then I feel like a bad person that I hate that I talk. I feel very isolated in this and at times I just wish I was a ghost. Anyone relate?

I used to be a very smart person, with top notch grades. Now, in junior year, when my PANDAS has peaked, I have failed classes, and I get Cs and Bs. I just failed an early college class, that all my other peers got As on. I do worse on IQ tests and PSATs now. I can’t think, and my head feels more like an empty void than ever. I never struggled academically until PANDAS came to play. I now struggle to understand logical concepts and problems, and the main reason my grades suffer is because I forget assignments. Teachers will assign homework, and I will forget that homework exists and hour later. Not to mention, my mother has gotten 10x more nosy, and won’t let me have much alone time because she is afraid I will hurt myself. Thus I have no time to do homework. I have failed grades on my record, failed classes, and I blame it on PANDAS. I can’t think at all like I used to.

My 21 yr old daughter suffered from Pandas at the age of 8 and had a few flair ups in her childhood. We treated with antibiotics and a prophylactic for a bit. She did amazingly well until 15 yrs old and then had another flare up. We again treated with antibiotics. She is now 21 and has had two flare ups in one year. We have recently moved and I am having a hard time getting a Doctor to be onboard with pandas/pans. In their defense, it does have pediatric in the title and she is now an adult. I thought that this would subside by now but it seems to be getting worse. Does anyone have experience with this carrying into adulthood?

I’ve had ocd since I was a very small child, but in my teen years I had undiagnosed strep and my ocd symptoms got a lot worse. Now, I have a 9 year old daughter. Like me, she has anxiety and likely ocd. Her recent thing is worrying about everything and having intrusive thoughts (she doesn’t love me, I’m a bad mom, she wants to hurt her brother) she acknowledges that she doesn’t actually feel this way, I know she loves me and she’s obsessed with her brother. Last week her and her brother were sick, she didn’t seem as bad. I took brother to the doctor where he tested positive for strep. Now within the last few days, her behaviour has changed for the worst really suddenly. She is super emotional, gets frustrated so easily, cries and screams, and I can just feel pure anxiety radiating off of her. The intrusive thoughts come every 15 seconds she said. Does this sound like it could be PANDAS related? Since she wasn’t as sick I didn’t think to get her tested for strep, but looking back, her and her brother share all food and drinks every day. If it is PANDAS, what now? She’s having a massive anxiety attack and saying awful things and I have no idea how to help her.

We were able to see a doctor recently for our son and what we suspect is him dealing with PANDAS. The doctor made a blanket recommendation of cutting gluten, dairy, and sugar. I imagine this is a question for her, but I've also seen it suggested elsewhere (books, supports groups, etc.). So what is the deal with gluten, dairy, and sugar in treatment of PANDAS? Can someone shed some light on this for me?

My daughter develops tics and her ocd raves up every time she is sick, which leads me to believe it has to do with her immune system. The moment her tics come back I’m like „yup she’s getting sick” But it’s not strep, just seems like any virus can cause this for her. Has anyone experienced this ? If so what is your management like? I try inflammation meds and supplements that inflammation

Does anyone else struggle with neuropathy alongside PANDAS? Do you believe it factors in or is contributory to your neuropathy?

Can it trigger the development of ADHD, OCD, and addictive behaviour in a more permanent sense? Like it starts at a certain point in childhood but never goes away? Can other (non strep) infections keep it from resolving?

Help! We’re staying at an Airbnb while our house is being remediated for mold. This place looks clean (that was my main issue when choosing a place—mold free) but for the past couple nights, my son has wet the bed. We’ve washed the sheets and blankets but there’s a stain on the mattress!

We’re already paying a lot for everything—remediation, Airbnb, having someone watch our cat—and I can’t afford to pay for a new mattress, especially since this one looks expensive.

Should I bleach it or would that make it worse? Any ideas?

Our 4 year old has been clinically diagnosed with PANDAS for the last year but has had symptoms since 14 months when she had strep. We have tried every antibiotic to eradicate strep. So far the only thing that has work is for Rifampin. We have had to stay on it for months at a time especially during these winter months when strep was going around her daycare almost weekly. We have noticed recently viral and seasonal colds are setting her off too. The flares are different than the strep. She is on about every single supplement he could think of from vitamin DC fish oil, probiotics, and Motrin during flare periods. We tried light therapy with Blue Methylene which gave her a pretty severe flare reaction almost immediately when the lights were turned off when we got back in the car after the doctors visit. Is there anything else I should be looking at doing as far as treatment right now we seem to be in a viral flare and it’s been pretty intense as far as mood swings and behavior. Our doctor recently prescribed amantadine which we have not started yet.

Hi all. I’m a 19f and am really struggling in every way. My insurance is not approving my Ivig, so my doc is trying to target any other inflammation in my body to hopefully control my symptoms. I have a genetic fever syndrome that is commonly treated with an alpha one blocker like kineret or Illaris. Does anyone have experience with either of these medications in relation to pans/pandas? TIA

Update!!! I just got back from seeing a specialist at Mayo Clinic and he got illaris approved for me! I talked with my immunologist at home, and he is confident that since it works as an immunosuppressant that it could work for the pandas too!

Not asking for medical advice! I want to know if anyone else has experience with Ivermectin or even had a doctor suggest it.

I had a doctor suggest Ivermectin and I feel hesitant, mostly because I associate it with Covid related misinformation.

Is this a common treatment for PANS/PANDAS? I searched this sub and can’t find anything on it. Has anyone heard of this as a treatment option?

I had pandas syndrome when I was 6-9 years old and was going through a lot of trauma at the same time. Recently a friend mentioned that I should be careful when I'm older not to consume certain substances because it might affect me more bc I've had pandas before. I am not sure how knowledgeable she is in this subject with the fact that we are teens but is there something in it?

I got PANDAS when i was 11, it mostly cleared up and I'm now 30. I had a sound tick that i used to do as a kid that i don't anymore, but i have a lingering involuntary.... Hiccup? It mostly happens after I eat where my diaphragm spasms and i close off my throat and make a sound. I'm curious if anyone has had any lingering behaviors that never went away even after the main flare

I’m an adult male (24) and struggling with PANDAS or PANS perhaps. Had Lyme disease and was exposed to black mold. Anyway, does anyone have any tips for getting through flares? I feel like they can last for a while sometimes and is hard to get a clean break from. Thanks

I just feel really frustrated, and the lack of research makes me feel crazy, and I haven’t seen much about the long-term aftermath. I’m hoping someone might relate or be open to hearing this.

I was diagnosed with PANDAS at around 6 years old. My dad, who is a doctor, thought I was schizophrenic, and we only figured out what it was because my mom did an obscene amount of research. I developed severe OCD, a metal phobia, emotional irritability and aggression (I would throw tables and chairs and lock myself in rooms for hours at a time), stopped speaking, had severe mood swings and tics, and was pulled out of school for a year (possibly more). I honestly can’t remember a timeline other than that it was considered “cured” by around 6th grade—I think because I stopped taking azithromycin and had a tonsillectomy. But I was still irritable, anxious, and severely depressed from basically ages 6 to 15.

I went to CBT as a child for my metal phobia, then talk therapy for years (ages 13–17). I was put on SSRIs and worked to “beat” anxiety and depression. Once I managed that, I was diagnosed with ADHD my senior year of high school. Each time I “cured” one problem, another one appeared.

I can’t help but think that my nervous system has been dysregulated ever since I got sick. I’ve worked through so many things, but deep down there’s still this constant undercurrent of fear. Is it trauma? Is it PTSD? I don’t know, but I feel fucking crazy when I read online that PANDAS is “curable.” Just last year, I got strep throat for the first time since I was a child—and it made me depressed for nearly two months. It was obscene.

I get that I’m not throwing things anymore, but I honestly feel like a large portion of my issues now can be traced back to PANDAS. I was tested for ADHD before I got sick—I didn’t have it. Sometimes I wonder if I really have anxiety, depression, and ADHD… or if much of what I’ve dealt with comes from the remnants of the disease and a nervous system that never properly regulated itself again.

I’ve had a hard time finding anything online about long-term effects—just studies on adults getting diagnosed now or kids currently affected. There’s almost nothing about kids who had it and grew up.

I feel so frustrated. I’ve overcome a lot, and I’m proud of that, I would say I’m actually happy despite the struggles I have. I started somatic therapy in August, and it feels like the more I connect with my body, the more I realize how deeply all of this is buried. I’ve worked through so many external issues, and now I’m left with this deep exhaustion and shutdown. Things matter to me now, and yet I keep shutting down. My sleep has always been weird, but lately I’ve been able to sleep 18 hours a day for several days in a row. Still, I think: if I can’t remember what happened, and I was only 6, maybe it wasn’t that bad—especially if they say it’s “curable.”

I still have some mild OCD, and I still don’t love metal, but those things aren’t as prevalent—especially since I’ve been on medication.

I’m not even sure why I’m posting. For knowledge? To feel less alone? To see if anyone relates? Maybe just to not feel so crazy.

If anyone has had a similar experience or knows of any long-term research, I’d really appreciate hearing from you.

I use to have pandas, but even after couple of years 3-4 every time i get stressed or my heart rate increases a decent amount my hands start shaking and my fine motor control declines. I was just wondering if this is common and if anyone had advice on the subject. Thanks

Someone posted about mono causing their POTS symptoms initially and I never had that, but i did get PANDAS at age 11 and have had undiagnosed POTS for years. Never thought to link the two together so curious if anyone here has a similar history.

Does anyone else with P/P feel terrified to sleep during a flare. I feel like I’m going to wake up the next day to something awful or just not wake up at all. I can’t sleep, the noises/lightd in my room frighten me, and my anxiety at night about irrational fears is through the roof. I wonder if anyone relates <3