Living with Sudden Onset OCD (PANS/PANDAS)

David was a happy-go-lucky kid until he woke up one day "feeling possessed". He was suddenly convinced that if he did simple tasks, like use a fork, his loved ones would be harmed. His parents eventually learned that David was experiencing brain inflammation due to a condition known as PANS/PANDAS. David and his family want others to know that PANS/PANDAS is real and it needs more attention.

SBSK's Socials:

[hazelnut]

I've had PANDAS for over a decade. My heart stopped when I saw this in my recommended. The only times I've ever felt so understood was when I saw a PANDAS specialist after suffering in silence for years. I feel so conflicted. I understand. It's like being trapped behind a thick glass pane that won't crack no matter how hard you throw yourself against it. A perceiver in your own body, trying to break out of a body of broken bones and hopes. Like your drowning in dark tar, struggling so hard against the thoughts and distortion, knowing it's not real, but it IS.
Like there's a great, dark beast curled up in your charred skull ripping at your frontal lobe, slowly mutilating the person you could have been. The irrational fear of everything to the point where speaking is like climbing a mountain. Doing things but never knowing why, other than that you deserved it or you had to.
I was mute for years just because of the sheer amount in my brain. I dropped out if school in elementary. I would have self destructive episodes where I resembled an animal more than a person. I'd growl and cry and shout, then sob apologies afterwards because I didn't know why. The clip of him having a flare pierced my soul. I cannot express how hearing him talk about the feeling of possession and all of this is making me tear up. I was almost put into a mental hospital many times after hurting myself or self isolating in a flare.
I've been fighting for years just to feel like I'm myself. It's just so crushing to walk through life knowing that you aren't fully YOU most of the time. You feel robbed, cheated, and alone. My god, this story is just spot on I can't express this enough. The feeling of hopelessness in the medical world. And I don't even try to explain it to other people most of the time because it's so tiring and in the end, I don't feel understood. I'm afraid they'll think I'm crazy, or that I'm weak. It's heart wrenching. Feeling like it's all in your head when it's in your body and brain too. My mother used to know I was flaring when my eyes would go black by how dilated they were: I was just so afraid.
There are two lines people draw for themself, their mind and their body. Some people it's very important that they are close, and that their bodies match their minds. Other people, they are far apart. They could be tortured physically and mentally content. It's something people adapt to and learn depending on their lifestyle and needs.
I see PANS/PANDAS like the forceble blurring of those lines. No matter how hard you try, and you try so hard, what happens to your body can hurt you deep in the mind and that's terrifying. It makes you fear everything. I can only describe it as one of the cruelest things I know, because it's a part of the few diseases that hurts the soul too. It burns.
I've had several IVIG treatments, which changed my life completely. While I still have flares, they no longer bring me completely down. After my first treatment, I was 14 and I felt like I had just breached a heavy fog over my mind. I suddenly, very briefly and very dimly, wanted to live. I was killing myself by not eating, sleeping, or caring-- but suddenly, I cared just enough to want to see colors and hear music and LIVE.
I studied and passed my highschool equivalent at 16 in between flares and bouts of nausea, vomiting, and with two broken feet from steroids. I moved into a little cabin in the middle of nowhere with the idea that I would waste away and die where no one could see me.
Then I discovered, I wasn't flaring 24/7, only a lot. Not all the time though.
I investigated as I slowly healed and gained weight back and learned to make my bed in the morning and I discovered, to my dismal horor, that my childhood home was filled with black mold for the entire time I lived there. I am allergic to black mold. Things started to make more sense. The water there was always foggy. I was constantly urged into a flare.
I'm sorry this is so disorganized and messy I just empathize.
I had more treatments and steroids to reduce the inflammation in my brain. It's like struggling up a vertical incline all the time. Trying not to fall into the pit once again, yet repeatedly being kicked down. It is brutal. I've gone on long enough, and there is so much more to say, but holy shit David I fucking know. I just know okay, my god stay alive and try to remember that the sick never really goes away, but you get stronger. I'm in college now and I fight everyday to keep the PANDA away. I hope you live a wonderful life and find more people who can understand you, or simply sit in the same room as you and let you exist. It's hard to let yourself be sometimes. <3

[kjr]

I really liked David’s parents, they seem like amazing people, and they’re very helpful and supportive.

[MaxItUpwithMarta]

This child is so lucky to have the parents that he has. They are educated and affluent. Imagine how many children with less favorable environments will never even be diagnosed.

[Merakilisasmr]

I've had PANDAS since I was 8, I'm 22 now, I think its so amazing that you guys are bringing awareness to this awful disease. And props for interviewing someone older, because theres this misconception that PANDAS ends after puberty starts which isn't true for a lot of us.

[allwayscgood]

I am sobbing. PANS robbed my son of his life. He’s currently institutionalized due to some resulting behavior. Thank you @specialbooksforspecialkids for bringing awareness to this terrible disease 🙏🙏🙏

[maggielovestoads]

What he said about how “I know it’s a flare up but I just can’t push past it” is SO relatable. It is SO INCREDIBLY FRUSTRATING to know that something is just your brain acting weird and that it’s just how you are and all of that and YET you STILL cannot move past it. For me it makes things more debilitating. I think that really helped me feel validated even though I don’t have PANS it’s definitely relatable to other mental conditions

[badabing]

I was the first child in fl to be diagnosed with PANDAS over 20 years ago. I was only 7 at the time, but can still vividly remember how the initial onset felt and how rough the road was after. My neurologist was so confused and didnt believe i would ever get better, until he diagnosed me. I spent 2 weeks in the hospital losing my ability to talk, walk, eat, and use the restroom. I remember wanting to die because I couldn't take the anguish anymore, the feeling it gives in your brain is indescribable. I developed extreme tourettes that lasted for years. I think the most frustrating thing about this disease is that we don't really have any data on how it affects adults. They told my parents it was a pediatric disease and I would grow out of it, but they didn't really know. And today as an adult I still have flare ups, I have been diagnosed with other neurological and mental illnesses but I honestly don't know how much of it is real and how much of it is simply PANDAS following me into adulthood. There are so many times where I forget I have it, and best myself up for my symptoms skyrocketing out of nowhere after I had made so much progress. This interview was so comforting to me, and has inspired me to give myself grace.

[kyradugan]

Hi David and family, I just watched you tell your story and I wanted to share some things that have helped me in my own battle with PANS.
Your story resonated with me as I have PANS/Basal Ganglia Encephalitis, and we are probably around the same age. Mine started when I was 17 and it took 4 years, many hospitalizations, doctor visits, numerous tests, and misdiagnosis after misdiagnosis for me to finally receive a correct diagnosis. I am 22 now and I found out last year that what I was really dealing with was PANS/BGE- Basal Ganglia Encephalitis/Autoimmune Encephalitis, through taking the Cunningham Panel through Moleculera labs. I am so glad to see you raising awareness for PANDAS/PANS! I'm so proud of you!

Some things that I have found very helpful in my recovery from Pans:

1)The Cunningham Panel through Moleculera Labs measures 5 anti-neuronal antibodies that are common in PANS/PANDAS patients and can really show what is going on in the brain. They have lots of helpful info on their website too. Most people with PANS/PANDAS will have extremely high levels in some or all of these anti-neuronal antibodies. I would highly recommend having the Cunnigham Panel tested if you haven't.
If you go to Moleculera Labs youtube channel, in the most recent posted video the lady in the video (Amy Cross) has been extremely helpful to us, and is the one who will talk to your doctor to discuss your results if you get this test. My levels were so high, the "Highest they had ever seen" in my Cunnigham Panel that I am now in two active case studies.

The book "Brain on Fire: my month of madness" by Susannah Cahalan tells her story of her battle with a similar condition only hers was a different, specific antibody, anti-NMDA encephalitis. Her book is so worth reading. She was one of the first people diagnosed with this condition and has done a lot to raise awareness for it. Susannah also suffered from many seizures b/c of the condition and talks about it in her book. There is also a movie version also called Brain on Fire, on Netflix.

I don’t know where you are located, but this is the doctor in the US who treated me (Dr. Scott Antione, at Center for Fully Functional Health in Carmel, Indiana). He may be helpful to you. His daughter had PANDAS and that is what made him specialize in it. He has an interview on the youtube channel ‘What if it is not Depression with Dr. Achina Stein’, called "PANDAS & PANS: Returning Lost Children | Scott Antoine DO and Dr. Achina Stein" That is worth watching.

Also the books “Saving Sammy: Curing the Boy Who Caught OCD” and “Childhood Interrupted” both by Beth Alison Maloney and “Brain Under Attack” by Beth Lambert. And the books in the list on pandas network website. There are even some that were published this year!

I am really so inspired by you, for telling your story, and all you have been able to accomplish despite battling this illness.

Another youtuber who is raising awareness for PANDAS 🐼 is Evie Meg, her YouTube channel is “This Trippy Hippie”.

I am currently working on writing my own story and getting a blog or website set up on my own experience with Pans, as I know how important raising awareness for this is.

I couldn't figure out a way to email this directly to you, so it will be one long comment.
If you want I would love to talk to you or answer any questions I can, or share resources that I found helpful.
You are not alone in this battle. Keep fighting! You’ve got this! Oh, I was also homeschooled and am very thankful for that experience!
~ Kyra Dugan

[marissag]

I was a PANDAS kid and am still affected by it as an adult, and I’ve been waiting for something like this for so long. I always see things about it from the parent’s perspective, but never from the PANDAS/PANS sufferer themselves. Thank you so much to everyone involved in this video!!!

[jacquipotgieter]

My son is autistic and non verbal. ( David has just given him a voice 🙏🏻). This illness is so vicious we could clearly see it wasn’t autism. It’s like watching your son get tortured by an invisible daemon. My son has had this since he was 10. He will be 18 in December.

Prohexal and Zythromycin has helped him greatly. It’s a terrible thing to go through.

He couldn’t do anything but scream in terror. OCD with everything. Couldn’t walk through door frames. Wouldn’t eat. Became anorexic. He would throw everything up. Petrified of people he knew. Lost all his toileting skills. He still has flares and is doing better. When we see slight ticks starting we treat him.


He is a recluse and won’t leave the house for any reason but he is 900% happier than he used to be. We will take anything.

[balaam_]

This is a very important action you’re taking David, creating awareness of this condition. I myself had never heard of it until this video, and I want to thank you for bringing it to my attention. I hope those in the medical field invest the time and effort toward understanding this condition and hopefully be able to improve it somehow for those who have to deal with it.

[Warflojd]

Been a SBSK follower for years but I don't always comment. David is such a brave man for telling the world about this. I never heard of PANDAS before and it was eye-opening. He has beautiful parents as well. Thank you David and his parents for sharing. I wish you all the best.

[zeldagamelover]

He seems like such a sweet guy, honest and genuine. I'm glad he reached out so people can learn more about this. Thank you David for teaching us. Hopefully this can make a chain reaction for more people to come out and talk about this, and maybe someday we can work on getting a cure or something to really help with this.

[SandiByrd]

David's relationship with his parents is beautiful 🥰

[ellagolden]

This is huge! As someone with PANDAS I’m so over the moon excited that awareness is finally spreading about what this illness is. It’s so very misunderstood.
Thank you, David, for speaking up 💚

[LeftOfToday]

"The brain is the only organ that named itself." I got a kick out of that... It probably messed up and meant to call itself "Brian" ;) I feel for you David, and I'm so glad you've found something that has helped, and that you are clearly surrounded by so much love. It is horrible how the brain can become its own worst enemy... I wish that never happened to anyone.

[terrininian]

David is showing how brave he is, sharing his story & raising awareness. A true warrior 👍 much love and respect 🥰

[lisathatcher]

The best SBSK interview in my opinion. Yes they all are great but there's just so much in this one. They describe PANS/PANDAS very well and it's something I did want to understand. I've heard the words but had no idea it was a brain illness. Having compassion for ppl with PANS/PANDAS is paramount along with a persistent drive to get proper treatment. Thank you big time to this family for educating us!!

[valentinacardona]

The brain is such a complex organ that neurological, mental and psychological diseases are fully unknown still . Being sick is hard enough, but struggling with a rare condition makes it harder both for the one who suffer from it and for the loved ones .
I have never heard about PANDAS before and seeing this man and his family makes me feel, think, imagine and asume how hard it must be. Thank you for sharing, it is important for the world to know

[sadlystuckinreality]

As someone who's had OCD since early childhood, this was so interesting. I'd never heard of this before. I know how debilitating OCD can be and it's made it so I couldn't even leave the house at times. Or once I had to be under parental supervision at all times because of it. It can destroy you. I couldn't tell my parents about my OCD because I thought they'd send me away to be locked up. I thought my doctor would do the same until he explained to me that I was having violent intrusive thoughts. I can't even imagine it happening so suddenly like this.