#pandas syndrome

[detentiontrack]

what is PANDAS? /gq

This is a very long infodump but here’s my story!

It stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections! Basically when I was 10, I got a normal case of strep throat. The same kind that every kid gets in childhood. I got on antibiotics and felt better, but overnight (literally overnight. I was completely fine the night before and then it started February 22nd 2016) I started having SEVERE. OCD and anxiety symptoms. It was debilitating. I couldn’t eat, sleep, or function. I was having panic attacks, constant obsessions and compulsions, terrifying intrusive thoughts, and hallucinations. I also started developing tics. I was 10 and it happened overnight, so it wasn’t likely obsessive compulsive disorder or Tourette’s, especially because I didn’t have a family history of those things.

After multiple doctors, a nurse practitioner finally thought to test me for strep antibodies and it was positive. I got started on high dose antibiotics that destroyed my teeth and digestive system, but after 11 months I was still getting strep throat every other week, which would cause me to flare.

At 11, I got my tonsils out, and it helped a bit, but then I started losing function in other areas. At that point, it had spread to my entire brain and it turned into severe encephalitis. I had constant violent tics, debilitating mental illness symptoms, and I was losing the ability to walk and talk. The right side of my body was completely useless and the left side wasn’t much better. I couldn’t talk without a stutter, aphasia, and forgetting how to speak.

At age 12, I got my first bought of IVIG, which helped a little bit, but unfortunately we had shitty health insurance at the time and they wouldn’t cover any more even though I was getting worse by the day. At this point we didn’t know I had encephalitis, we thought I only had PANDAS and PANDAS wouldn’t cause that severe of a reaction on its own. So it was extremely scary. They were testing me for everything they knew, but encephalitis, especially in kids that young, wasn’t super well researched at the time. I had countless tests and everything was coming back “clean”.

Eventually, my mom and I went to every doctor in California that would see us. Even the ones not covered by insurance. At 12, since we saw every neurologist and rheumatologist that would see me in our state, we went to Arizona to see a PANDAS specialist. She recommended me a lot of herbal medications that kept me alive and helped a lot, but since she was in a different state, she couldn’t prescribe any actual medication. But those herbal medications kept me going long enough. That’s when we found out I also had fibromyalgia and my thyroid had failed as a side effect of the encephalitis.

When I was 13, I saw a doctor who diagnosed me with POTS, prescribed me POTS medication, and did a lot of tests to try and find out WHY I was losing the ability to walk and talk. She did a nerve conduction test, MRIs, CTs, and a test where they removed huge chunks of my flesh and tested the nerves (idk what it was called?) however there was no baseline for someone my age for any of the things she was testing for, so we only had a set baseline for if things got worse.

When I was 13, almost 14, I couldn’t walk or stand without a cane, even with a cane I couldn’t walk for very long, and I was very nearly at the point where I needed a wheelchair full time. My speech and tics were terrible, I remember barely even being able to think or process what was happening because the brain inflammation was so severe. I FINALLY got in with a rheumatologist at UCLA who specialized in PANDAS, and he finally was able to get insurance to pay for a years worth of IVIG.

I was on high dose IVIG for a year, and it saved my life. Very slowly, I got better. My OCD stopped, I could talk again, my tics stopped, and I very slowly got back feeling in my body. I couldn’t afford speech therapy or physical therapy at the time, so I had to teach myself how to walk and talk again. 5 years later, I have 100% feeling and function in my right arm, and I can feel most of my right leg, except for my foot and random patches on my thigh and calf. I talk fine most of the time, but if I’m tired, I’ll start slurring my words and occasionally words for things will just. Slip out of my brain and I can’t remember them so I have to improvise. (Yesterday the word for pencil disappeared from my brain so I asked my sister for “the thing that’s like a pen but is gray and you can erase it”)

[bncclinic]

Understanding PANDAS Syndrome: Misunderstood Conditions

PANDAS Syndrome involves sudden OCD and tics in children after a streptococcal infection, due to the immune system attacking brain tissues. Symptoms include behavioral changes and mood swings. PANS extends this to other infections as triggers. Treatment includes antibiotics and symptom monitoring.

[pocketsinfo]

Mga Palatandaan na Dapat Abangan sa Mga Batang May PANDAS

[homoerotic-kinda-chaotic]

Get it here 🦝

[bigticenergy1]

✨Dynamic disability ✨ my mobility aids and when I use them:

Living with multiple autoimmune conditions, an inflamed brain and Tourette’s makes every day different ✌🏻

(Keep in mind, mobility aids are only PART OF a treatment plan to manage a diagnosis or set of symptoms. It’s not recommended to use any mobility aid long term without professional guidance.)

[tic-loud-tic-proud]

10 Tips for people with klazomania (screaming tics)

1, and this is one that has changed my life: if you have very frequent shouting/screaming tics, DO VOCAL WARMUPS! I used to consistently lose my voice at the end of every day before I started doing this. There are plenty of short and simple warmup tutorials online- find one that works for you!

2, if you live in an apartment building, make sure to tell your neighbors. You don't need to explicitly tell them you have TS, but make sure they know you make loud sounds frequently so they're not concerned. Putting a sign on your door also works. Remember: in the USA it is illegal for landlords to evict someone solely because of a disability.

3, if you're heading off to college and plan on living in a dormitory you might want to request not having a roommate. If you are already diagnosed with a tic disorder, it should be easy to do this through your college's disability services office. If you would like to have a roommate make sure they understand your tics.

4, if you are planning on going out (to a restaurant, theme park, museum, etc.) you might want to call the staff of the location to inform them you have tics a few days before. I usually call ahead to restaurants to let them know about my klazomania and coprolalia tics and I've found that doing so makes it easier for both parties.

5, going off of 4, if you're going to a theme park or large museum and plan to suppress at least part of the time, get a map and mark off secluded places where you can safely let your tics out.

6, if you'd like you can bring a stuffed animal out in public with you: both for emotional support and to muffle the sound of loud tics.

7, if you're a middle or high school student, email your teachers to let them know about your tics. If you have moderate/severe tics it was very important to me that I gave a presentation to each of my classes at the beginning of each semester to teach them about my TS. Another accommodation that I got in high school was being allowed to zoom into my classes instead of attending in person: So on bad tic days I would stay home, and my teachers would broadcast the class over zoom for me.

8, drink lots of water and purchase a humidifier if possible. At the end of a long day drinking fluid and being in a more humid environment will help to soothe your voice. Herbal tea with honey or mild broths can also help soothe your voice!

9, have a good network of friends who understand and support you. This is no easy feat and can take years but it will have a huge impact on your quality of life. Join a support group (IRL or online) to talk to other people with tics who understand what you're going through, and find people who share your hobbies and interests!

10, remember that your tics don't define who you are! It is not your fault that you have tics, and you are not doing them on purpose. Don't feel guilty for something you have no control over. You deserve to live a happy and fulfilling life just like anyone else!

[neurosky]

Reminder that hallucinations aren't always visual, and they aren't always scary!! I personally have auditory and olfactory hallucinations (hearing and smell), and they usually aren't scary.

Note that while not all hallucinations are scary, it's definitely possible for some to be. I've heard things like screams, and smelled things like blood.

But most of the time, I hear things like footsteps, doors opening/closing, cats meowing, knocking, and distant speaking. I've smelled things like gasoline, scents like lavender/jasmine, and more that I can't really describe. These ones generally aren't scary!

It's important for people to know this as it both destigmatizes conditions like schizophrenia, psychosis, and other things that cause hallucinations, and it brings a greater understanding to people who deal with hallucinations =]

[dontaskchaosandco]

villain something?

(Edit for transparency: this is absolutely related to that big google form from a week or so back)

[sslainsaturn]

please, call me DISABLED!! (targeted rant)

my mom is always afraid to use that word to describe me, and itd be fine if i wasnt literally fucking disabled... itd be fine if she didnt call me a brat because im reacting to not being accommodated!! in a different country!!! in front of people ive never fucking met. you know what wouldve saved yourself from being "ashamed"? TELLING PEOPLE THAT IM DISABLED!!! im not being a fucking dick its just 7 in the morning and youre making me meet the gaggle of girls you grew up with and i just want to be alone

you dont even have to say what kind of disabilities i have literally just fucking accommodate me. you go to these prom events for adults with like down syndrome and you dont even gaf about your disabled kid at home?? when i use my damn cane your fuckass husband tries to put it back in the car like oh im sorry for being a burden? im sorry that i need an accommodation that you dont? fakeclaiming things you took me to go get diagnosed with isnt nice either btw. just because i dont want to do the dishes doesnt mean i dont have OCD. just because im not chromosomally and congenitally disabled doesnt mean im not disabled.

And no, i still dont forgive you for calling me stupid right before i got diagnosed with PANS. i will never forgive you for that. i dont care how stressed you were.

getting your stupid ass dopey little alcoholic husband to yell at me and tell me i didnt experience anything while with my dad is bullshit too. you *werent* drafted in the army and youve never seen battle, stfu about my ptsd.

[detentiontrack]

When I was 10/11 I had strep throat basically every single day for 2 years because the bacteria lived in my tonsils so I kept getting reinfected every time the antibiotic course ended (I was also on high dose antibiotics every day for around 3 years but that’s another story) and when my tonsils were removed, the very experienced ENT told me that they were hands down the worst tonsils she had ever seen in her life. She described them as “swiss cheese” with craters and holes. My biggest regret in life is that I was never able to keep my tonsils after removal because they had to be sent to a lab. Imagine if I could have kept them in a jar and used them as room decor????

[bncclinic]

Understanding PANDAS Syndrome: Symptoms, Causes, and Treatment

Discover essential information about PANDAS Syndrome, a pediatric autoimmune neuropsychiatric disorder linked to streptococcal infections. Learn about its symptoms, causes, and effective treatment options. For detailed insights, visit our dedicated page on PANDAS Syndrome.

Contact us: (03)9848 9100

Visit: https://www.adhd.com.au/pandaspans/panspandas-syndrome 

[pocketsinfo]

Signos a tener en cuenta en niños con PANDAS

[alvie2alive]

PANS: As Told By the First Lines of My Journal Entries - an original poem

Some context: I've had PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) since 2015, but was only diagnosed in 2023. I've been journaling since 2014, when I was 7/8, and I still journal now. I developed PANS after getting Lyme disease in 2015, and then it had a whole second rebound in early 2020 after getting Strep.

Each line is the first line of a different journal entry, in mainly chronological order.

Here's a review of my day. Today is SPARKLY! I've been feeling really bad for the past four to five days now. I'm not sure when or if I'll feel better.

Today I'm seeing what other girls aren't supposed to be seeing. And I'm kind of obsessed with perfect and even numbers. Today was almost THE WORST DAY EVER.

There's so many things I want to say, but I can't. Today was meh. Happy Valentine's Day! I have strep throat. Today was pretty good, other than waking up to a thunderstorm at 5:45a.m.

I woke up today and I was depressed. So I quit gymnastics. Today's been pretty good. So I found a band called Mayday Parade. Yes, I know it's really late, or early, I guess. Yes, I'm actually writing this sometime other than nighttime!

Hey! I still don't feel that good. I don't feel good. Hey! I'm scared. Hey. I don't feel good.

I'm so sorry I haven't written in so long! So... a lot happened. Hey. I didn't sleep again last night. Today is the last day of classes for the week. I haven't been feeling that good lately.

Don't really know what to write. I'm so tired. I don't really know what to say... I'm so tired.

I'm really tired. I went to therapy tomorrow. I don't know what's going on. My head hurts.

Someday I'll look at the sky and see color again. You know what's sad? It's about my feelings of being trapped here. It's weird to think that I don't know what normal is. I can feel myself going insane. Black figure at end of hallway by bathroom.

I slept well last night. I wanna go home so fucking bad. I should be getting out soon. Bored. Hey. I hate my life. I need to run.

It's been a while. I still feel bad. Letter to the sky: Hey.

I feel so guilty. I'm so tired of not being treated like a human being. I ended up having the best day today after all! Today wasn't super eventful.

Hi!! I feel so horrible. I was really anxious at school today, just the whole time. I hate myself. I'm nervous. Holy shit. There's this dream I have. I had such an amazing day yesterday, nothing happened, so why am I so depressed?

I feel like I'm going insane. I hate myself. I am okay. I stayed home from school today because I was too tired to go. I skipped 7th period today. I showered and brushed my teeth.

Last day of school!! One more thing. I feel like I'm going insane. Why can't I feel anything? I think I've slept maybe 3 hours last night. Alright.

I wish I could be a gas. It's not even noon yet and I'm already sore and tired. God, what am I doing? I'm crying.

The new doctor that we found in Washington only sees patients under 16. What are we even fighting for anymore? It feels like I'm being weighed down by a thousand rocks.

I'm not going down without a fight. I feel like I'm just some hopeless disabled kid trying to be something I'm not. I'm scared. It's weird. I'm scared.

I feel like I always blend into the background. I feel really horrible right now. I don't want to be calm. I feel like shit. Why is nothing I do ever good enough? Everything's wrong. I'm getting tired of pretending. I don't know why I can't just get out of bed.

Alright.

The walk yesterday went well. How do people go in public like it's nothing? I feel so confused today. Things are so fuzzy. I feel not here.

Hey! Bad news. I still haven't left. I want to unrealize this. I had an AMAZING night. My brain is so scattered, and my memory sometimes just randomly lapses. I had an amazing day! I hate that I want to go home.

I'm not okay. My arms hurt so bad from the blood draw yesterday. I had therapy today.

I had a weird day today. I've been feeling weird all day. I feel so weird.

I spent most of the day biking around town. I stayed home sick today. Things I Love: I'm so burnt out. I feel so alone. I love the sky so much.

I'm upset. I stayed home. I just felt like writing this in pink. Oh, I also got my Letterman jacket yesterday! I cried today.

New journal!! I'm so bored, so you're getting more music stuff! I finally figured out what to put on my grad cap! School went fine today. Things are rough. I stayed home sick yesterday.

Graduation day!! So, a lot happened. I'm feeling a lot better today! Hey. I don't like it here. So that was horrible. This is so fucked.

Reasons to stay alive: Things have been hard recently. Today has been... a lot. Today kinda sucked. Today kinda sucked.

I went to the walk-in today. I feel so lonely. Today kinda sucked.

Not much to write about today. I'm so tired, but I'm afraid to sleep.

Hi! I feel so empty. I think I'm uncomfortable being human. I don't even know where to start or how to describe how I'm feeling. I had a dream. I feel awful. Nevermind.

I'm not writing in here as much anymore. I'm so dissociated and I can't get out of it.

I got back from the doctor's about an hour and 15 mins ago, and I have so many papers. I just want to be healthy. I'm so fucking done. But I'll be okay. I hate this. Just... everything is so hopeless. Sometimes it's like my younger self is hurting and not me. How did I end up like this?

I have been awake for 3 days. I feel like I'm losing my mind. Sometimes it's easy. I can't do this anymore.

I prayed last night. I hate myself. I love putting smiles on people's faces. I just want to feel fine for one day. I love being here for people. Everything's wrong.

Once again, I'm awake in the middle of the night, scared. I'm sad. What the fuck. I have no idea how to start this off, this is me attempting to explain how I feel right now, and probably failing. I think the only reason I'm alive is because of hope.

"To Whom It May Concern: I have been treating Alvie since mid-September 2023." I want to go into a coma and wake up when I'm better. I want to slip into a coma and wake up when I'm better.

I didn't recognize myself in the mirror today, either. I want to be healthy. How the actual fuck was this past week even real.

I haven't been feeling good for the past 3 days. I had a bit of a cold, or allergies, or something today. I'm still out of it. Life is getting unbearable right now. I feel so heavy. I am not doing well. I'm so tired of being sick. It's been a week.

Why can't I just be okay?

[bigticenergy1]

Positive Tourette’s interaction story 🩵⚡️☺️

(This happened a while back and I told the story on TikTok then.)

My mom was giving my a ride to the dispensary and my tics were really ramping up in the car. So much so, that we had to pull over so I could move from the front to back seats. It can be dangerous to ride in the front with super active tics and my TS has already done lots of damage to the inside of the car. My tics can increase when riding in the car because it can make me feel trapped and out of control of what’s happening.

My mom dropped me off at the dispensary and headed to a grocery store that was in the same strip mall. I figured once I was out of the car, I would calm down and I wasn’t too worried because I know the owner of the dispensary (Justin) and the staff and they know that I have Tourette’s.

I got out of the car and my mom drove away and it’s like my tics exploded. I started having a violent tic attack. Screaming and punching a cement support beam. Within a couple of minutes, I realized that, I had to get off the street or someone would likely call the police.

So, I got into the dispensary as fast I could and was like “I’m having a tic attack. Do you have a bathroom?” Anywhere private that wasn’t outside in front of people. Justin led me into their back room area where they have a couch. He was so incredibly sweet and stayed for a while to make sure I was okay. He ended up having to go back up to the front of the store so his wife came and sat with me. She brought me water and let me hit her pen and within 20 or so minutes, my tics had calmed down.

I thanked them prefusely and they reassured me that any time I needed to chill in the back, I was welcome. They still offer for me to wait in the back if I’m ticcing a lot and the shop is busy. Ever since that day, I’ve gotten a (secret) 40% discount which we joke is my “Tourette’s discount.”

——

A couple of weeks later, I smashed a cart of hash rosin trying to grab it during a tic attack. I texted Justin and told him what had happened (to ask if they had any more in stock) and he said “come on over. I got you.” So, I went back to the dispensary and he gave me a free cart, equipped with a DIY “Tourette’s-proof” bumper. He had cut a pen gripper into three rings and slid them onto the glass of the cartridge and it works! Now, every time I get a new cart, he takes the rings off of the old one and puts them on the new one for me.

Justin told me that he also made some modifications to a smoking rig to make it easier for someone with cerebral palsy to use. I told him he should make a line of accessible smoking devices! Lol

I dunno, in a shitty ableist world, I like to remember instances and people like this.

[its-ticsticstics]

Hey, I saw your post on things that can give you tics and what can’t and I have a few questions.

About 1/2 a year ago I developed tics, and I mean BAD. Happened over the course of a few days and it hit me like a damn semi (mainly because I’m in middle school in a small town and people are assholes, they’ve chilled out by now though).

A few months ago I went in to see a professional psychologist (at least I think that’s what he was, it’s something along the lines of that), when I got my results back I was told that the only things I had were minor ADHD, depression, and severe social anxiety. I was told that literally all of my major issues (unable to stay still, randomly going nonverbal, inability to make eye contact, and the tics) were because of the anxiety and now I’m seeing a bunch of posts like yours and I really don’t know who to believe.

Could you maybe provide me with a few articles so I can figure, like, figure a few things out?

(Also I would like to add that I have 41 tics as of current)

Hope I’m not being too too much of a bother/rude! Have a good day/night/afternoon.

(One more thing, I am writing this on 2 hours of sleep so anything I said that was stupid/grammar mistakes can be blamed on that)

First!

I can't diagnose you, but in my almost (haven't graduated from uni yet) professional opinion would to get a Cunningham blood panel test for PANS/PANDAS/BGE.

The sudden onset paired with periods of mutism (inability to speak) along with tics sounds like the source could be brain inflammation in the very early stages.

If a blood test rules this out, it could just be the classic Tourettic Triad of symptoms of ADHD/OCD/ASD but this would also need to be diagnosed by a neurologist. Reading about tics is not enough to give yourself a diagnosis- it is a neurological disorder and not the same as self diagnosing ADHD or autism. People can DIE from misdiagnosed tics.

Unfortunately, especially those who are AFAB, are likely to be misdiagnosed and have a harder time being diagnosed with a tic disorder or Tourettes than AFAB counterparts.

The fact that you weren't sent to a neurologist to evaluate your symptoms is medical neglect and you deserved better.

Second-

The argument that anxiety can't cause tics really comes from the fact that there are NO studies to prove anxiety causes tics. There are no studies to say they don't, because there is no clinical or scientific evidence that they do in the first place. It's sort of like asking "use scientific studies to prove to me that Santa Claus doesn't exist" .. You can't find those studies because everyone already knows Santa Clause doesn't exist so no one does a study on that in the first place. In this scenario, anxiety tics and Santa Claus are the same thing.

All studies agree that anxiety can worsen EXISTING tics, but none say that anxiety alone c a u s e s tics. Those are two very very different things. Ticcing when anxious does not mean being anxious makes you tic, it means that being anxious worsens and makes noticable tics that you already have.

What I can give resources to though, are genuine Tourettes and Tic Disorder websites:

[neurosky]

Almost forgot what it felt like to be put in a "getting hit with a truck while acid is being injected into your brain" simulator! Thanks for the reminder, immunotherapy! Love it 👍