Living with Sudden Onset OCD (PANS/PANDAS)
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- Опубліковано 28 лис 2022
- 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.
Connect with David at / davidslife99
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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.
Thank you for sharing your story. Also David. Until yesterday I wasn't even aware such a thing existed. And it sounds terrifying. Both of you are very strong and true survivers. Thank you for that. You help others to survive. I hope the symptoms are manageable and that you are able to live a happy and fulfilling life. Love
WOW!!!
Watching this video/David's story,
then reading your comment ....
I am in immeasurable AWE
of you (both!!)
for so very many reasons. ❤️
I TRULY believe that many lives
will be positively affected/
SAVED with this video,
AND
your deeply palpable,
incredibly written words.❤️
Sending you BOTH so very much love and hope for the future!!!!
❤️💕❤️💕❤️💕❤️
Thank you for sharing. Our child has very similar traits, but anywhere where we try to get help do not acknowledge such state existing.
Thank you for sharing. My daughter had PANS while we lived with black mold. It was also triggered by a common childhood v, but the mold must have been an underlying factor. It was years of darkness until I discovered the cause. I pleaded to see a neurologist, but ultimately ended up just asking for the course of prophylactic abx that I found in parent forums for PANS. This horrible nightmare paved pathways in my daughter’s brain that still make life difficult for her, but she is soooo much better. I still live in fear it will come back. There is so adequate or accurate way to describe to someone what it’s like to see your child go through this-and my daughter has never been able to describe what it was like for her. Thank you for your insight and I wish the best for you.
You’re strong. Keep going. Life is good.
My dad is a physician in Dominican Republic and, at least up to the point I left the island, he was one of the few doctors in the whole country that was accepting of this condition and willing to treat patients. I’m sending him this video; he will love it!
Muchos saludos!!
🇩🇴🇩🇴🇩🇴❤
Thank you to your Dad for being open minded and willing to treat a condition that affects so many in such a profound way.
@@EyeKnow1111 I’ll send him your message. Thank you! ❤️
❤️❤️❤️❤️❤️
I really liked David’s parents, they seem like amazing people, and they’re very helpful and supportive.
❤❤❤❤
I concur wholeheartedly!! ❤️
Absolutely!!❤♥️😘
His parents are highly intelligent!
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 🙏🙏🙏
Im sorry to hear about your son, I have a son with PANS and it has been horrible not knowing his future. It is heartbreaking.
Hi, please watch Dr.Datis Kharazian's podcast about PANDAS and PANS mechanisms and strategies, it might help you a lot.
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.
They end up in jail
Yeah exactly. I got PANS at age 22 but my family hasn't been able to try to understand or help me and that meant literally becoming homeless. And I really think that everyone you see online for both PANS and also Lyme disease, Bartonella, mold toxicity, etc are just the tiny tip of the iceberg percentage of people who are savvy enough to self-educate and figure it out. It's so sad the state things are in (although it seems like awareness has started to pick up a little bit in the last couple years now) and I think we'll look back at this era of chronic illness as an extremely tragic time
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.
exactly. i have PANDAS too, i’m nearly 20 now. while the severity of the initial onset has long subsided, the OCD and the tics never left
i feel so good there are so many people with these issues, i feel understood
I Believe have pandas at 35 I spend a lot of time hating myself trying to stop it
I have only heard of a few people with PANDAS/PANS. It's so lonely. How rare is this illness?
@@i-am-very-real I think one out of 200 people have it
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
I had the same thought. I've got OCPD with reoccurring depression & anciety followed by fatigue and the most infuriating part is not being able to push through and having to wait it out because I can't make my brain/body do what I expect it to.
@@charamia9402 I know it sounds and feels impossible to change. You can find comfort in proper distractions. But it helps tremendously if you have someone to help you. I remember people saying, "just relax". My problem was always....I couldn't! Especially not my brain. But gradually I have found distractions that help switch my brain. Oddly a "painful" very deep tissue massage helps. Obviously someone helping is preferred. But it doesn't require paying $ to go get a professional massage. I even stand on rocks, just to confuse my brain. Whether pain or pleasure your brain will release chemicals. As for me, I don't want to take medicine for my mental issues so I am willing to try anything someone recommends. I hope you find something that helps. Sry for my lengthy msg. Take care.
What do you mean move past it?
@@asherrogers2687 No worries, tips are always welcome. Thing is, I know that every rough patch/flare up will pass, I just get impatient to get through it and move on. It's much better today than a few years ago though, with less severe and shorter flare ups. Just need to work on preventative self care when I'm feeling well in order to build resilience.
Without question, I have borderline personality disorder and a good example is today I was asked to do something and I got so extremely defensive and severely aggressive it put me into a spin for hours. But there was ME - a small quiet little voice far back in the corner of the room - telling myself it's just a BPD episode over nothing, to calm down and that my emotions weren't valid or real.
But I can't control it, my body takes over and goes into this fit of uncontrollable emotion - it's so bad I want to throw myself in front of a car or smash my head into a wall (I don't, obviously), but it takes what little tether of "normal" cognitive function I have to control this body from completely demolishing itself.
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!!!
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.
I would like to wish you peace of mind and spirit tonight.
It is incredible how little we know as human beings about our own minds.
May even be more like trying to understand the universe
as science has discovered similar structures in our brains that exist out there in outer space.
We certainly have our work cut out for us but I believe we can accomplish it.
Hugs ❤
I wish all the pain goes as quickly as it started… wishing all the best to David n hoping to see you again with much much better health n all❤
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.
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 UA-cam 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
@SpecialBooksbySpecialKids
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.
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.
Hope you are part of a support group. Prayers for your son
Is he still nonverbal how do u communicate with him ? Thanks and hope any more fears of his go away!! ❤
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.
Oh jeez. I have severe OCD.. and these things are very real.. like the thought and feelings are there 24/7, and the posessed feeling. You really feel like that your brain is on FIRE. Those clips in the video is soo accurate and are too triggering for me.. I can’t even watch them
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 💚
For almost my entire life, I have suffered from PANDAS. At one point, it took over my life. I ended up skipping school for 2 years because of how severe it got. I was literally hallucinating. I had a voice in my head that told me what to do. I don't think I will ever fully recover from those 2 mentally damaging years. I was only 11. Right now, I am 17. I still struggle with this condition, but I have learned how to manage it better. There is so much I want to share about my experience, so please feel free to ask me questions!
Can you further describe that voice in your head? What did it ask you to do? Thanks for being so open!
@@lucasgrosso4795 Thanks for the response. The voice told me to do harmful things to myself, or else I would never see my real family again. I did horrible impulsive things such as biting into glass and punching myself in the face until my nose bled. I spent two years of my life truly convinced that my family was replaced by imposters. I was also convinced that I was living in a fake reality, where nothing was real. I truly had no one to talk to, except for that voice.
Do you do IVIG?
@@ChronicallyCassidy I used to, but it never really helped me that much.
Bravo for putting it out to the Universe 🌟
David is showing how brave he is, sharing his story & raising awareness. A true warrior 👍 much love and respect 🥰
David's relationship with his parents is beautiful 🥰
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!!
Exactly!
Personally, seeing them in their worst is extremely useful too. Having this guys permission to see him in an episode is extremely helpful, I see how damaging it is - and honestly, can relate to it in a different way. I suffer with BPD, and when you see me in casual life I appear as this man in the interview. Calm, collected and objective about the situation.
But that's not how I live at all. The cutaway shots of him suffering in fear and dysfunction is how people with varying conditions really live - our lives are mostly this, and people just don't see it.
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.
you've never heard of it before because it is a hypothetical diagnosis associated with pseudoscience. there's no testing or evidence to suggest it existsm or that it is any different from OCD or tic disorders. It is not recognised by most medical professionals and parents will often seek out doctors who specifically believe in PANDAS as they would rather blame their child's symptoms on a physical issue (strep, brain inflammation, immune problems), rather than accept that their child is simply neurodivergent. I am surprised Chris hosted this controversial diagnosis on his channel.
ocd can come from many things. gluten foods can cause this as well and many other harmful foods.
Ocd is so debilitating. I get flare ups where it’s unbearable and I just withdraw from reality in my head. Every fear becomes a very real possibility and it’s hard to act normal.
"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.
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
What a likable person, he is. Thanks for sharing your story with us, my friend. The word brave gets thrown around a lot these days, but sharing your story with us and the world is. Thank you again and happy holidays
I can't imagine watching my child go through this, let alone going through the absolute torture of it myself. Thank you so much for sharing your story David and family.
A friend of mine got this from Lyme disease. It took years before they finally discovered what it was. During that time she was written off as a malingerer, attention seeker, even accused of using illicit drugs! Yet all along there was an underlying systemic cause. She’s much better now, but the years of not being believed by the medical profession has really taken a toll on her mental health 😢
Yep. When I was in highschool my teacher's though I was on drugs. Well actually im autistic and was having daily meltdowns in serious distress. Messes you up.
Hey, I've had OCD for years and related to what you said, about feeling like the intrusive thoughts are trying to get darker and make you feel more and more evil. Mine were/are so twisted I couldn't believe someone could have felt the same. You're not alone.
Same me too
I commend David for discussing this with the SBSK community. I can't imagine dealing with what he's had to through his young years. I really hope the medical world takes people like him seriously and doesn't dismiss them as "normal teenagers" or there's going to be a lot of lives ruined/taken way before their time is up. Here's wishing David and his family nothing but the best ✌️
I would be his friend, he seems like he's a very good person and very cool.
I was sat last night, explaining to my partner what my flares are like, what he needs to do, and what I need from him. 14 years since my onset, and 12 years since my diagnosis. Today this pops up on my homepage.
Thank you Chris, David and family for this.
These parents... they’re just amazing. Everything they say is out of pure love and care for him, they just don’t want him to hurt.
Thank you SO MUCH for sharing this story. As a physician, seeing this kind of description of a patient’s experience with a horrible disease is so powerful, because our profession lives and breathes on the ability to make an accurate and rapid diagnosis. No accurate diagnosis = shooting in the dark with treatments. If I ever see someone present like this, I’ll definitely have PANDAS on the top of my list differential diagnoses, and I’ll have a good idea of what to do next.
Thanks for making me a better doctor!
Have a close friend whose son like this was cured with long term antibiotics. Was a nightmare for them. Kid now healthy 24 year old. 🙏
@Diana Siltanen My niece has PANDAS and is being treated with I.V I.G and it has helped her immensely
Thank you for actually researching these diseases and not fobbing patients off. I’m only being diagnosed with a heart condition after 8 years of complaining about it as all doctors put it down to anxiety, it wasn’t. I’m not also being sent to neurologist, rheumatologist,gastroenterologist, cardiologist.
I’m now 21, all of a sudden I’m being listened to, I now may have a genetic disorder hypermobile EDS and gastrointestinal issues, and POTS (other heart issues being investigated), and MS.
This guy is absolutely brave. His willingness to share a video with his flare up is so an honest way to educate people about this illness. Kudos David.
My friend's daughter developed PANDAS after she had strep throat. Yes, she did have the antibiotic treatment, but it didn't help. Her brain was affected as a result and she had extreme anxiety and constant fear that she would throw up.
Thats terrifying
My cousin developed PANDAS at age 7 after having strep throat, he stopped eating for months because he was afraid he would choke to death.
Yep, more common than people think.
@@a.j.marcantonio153 hmmm the same thing happened to me but i dont remember having a strep throat or any sickness. It took more than a year to get over that fear
@@shadowsinmymind9 My cousin is 19 now, and eats normally. He lost a lot of weight from not eating for so long.
THANK YOU! Watching this broke my heart - my daughter is 20 - she was just diagnosed with PANS. She is YOU. This felt like watching my own family. No one understands how hard this is to go through. Please don’t feel guilty about having a disorder/illness that is not your fault and never asked for. Also please know that your parents love you with or without PANS. I promise you that as a parent I want nothing more but help, love and support my daughter and I know your parents feel that way too. It’s just so hard to watch your child in so much pain and you can’t do anything about it.
Thank god David has caring, supporting parents. I couldn’t imagine having my kid flip over night and not knowing how to help them while going through these intense changes. Let alone how stressful and terrifying that must be to go through
This breaks my heart. The pain he went through, his parents having to watch him suffer. They are such a beautiful strong unit, I hope they're able to get access to better and better medical knowledge and help.
I wanted to edit to clarify that I know he's still dealing with his illness. I meant more along the lines of he no longer has to suffer in silence.
I am so happy to have discovered this piece! My teenage niece has been diagnosed with PANS/PANDAS..and she is suffering. A pediatrician in my area did a lot of research and study on PANDAS a number of years ago - actually one of the first to name it and classify it, and wrote a book on it as well..But the good doctor retired (after many many years of practicing). We are working with some medial professionals that the doctor trained to recognize and treat PANDAS. One thing we learned: LYME can be the underlying cause for many of today's illnesses...really nasty! I thank David and his parents for sharing, and enlightening the public to this illness. I pray they, and the many other suffering, are healed. God bless them ! !
SO TRUE.
Lyme from ticks or something else ?
Lyme disease caused my daughter’s PANDAS. She had a tick attachment at age 7 and afterwards started getting strep infections every six weeks. Lyme suppressed her immune system which led to GI issues, heightened pain response, ankle problems, and more. Lyme is the great imitator of the 21st century.
I've been watching this channel for a few years now. My younger sister was diagnosed with this 6 years ago, at the time the children's hospital didn't know much about PANS/PANDAS. I've been trying to bring more awareness to it - in fact I just did my psychology presentation on this. I can't believe it's being covered on this channel now. THANK YOU SO MUCH ❤️🙏
I have OCD from PANDAS and I never have seen anyone else with it. I really needed to see this years ago but I am glad I am seeing this video now.
What a story. This Family is amazing. How resilient David is. His Parents are amazing.
I don’t have any OCD family diagnosis but a lot of the things mentioned resonate with me. Thanks for sharing your story.
I think there is some overlap with some symptoms across many disorders.
I have ocd
I’ve battled PANS for 17 years, and I’m so so sorry you have to be on this battlefield too. Thank you, thank you, thank you for sharing this.
Thank you Chris for bringing us this unique and challenging disorder. David is suffering and has to go through so many different elements to this painful disease. Wow, he has amazing parents. And, David is a delightful guy, reaching out to SBSK, to go on camera and tell his story to bring awareness to such a complicated condition. What a brave and courageous young man. I suffer from OCD but, mine is like counting and back and forth “did I turn off the coffee pot?!” “Yes, I turned it off” and halfway to my car my brain say’s “no, I didn’t, go back.” This can go on for a good while. Anxiety is a big part of the OCD too. Thank you Chris, Alyssa and Noodle. Also, thank you to David and his parents. P.S. I’m so happy comments are back. I know it’s been back for a good while now, but, I am really grateful to be able for our community to have these conversations. Take care guys!
What a cool guy, thanks for introducing him to us here.
I was only somewhat aware of PANDAS as a childhood disease; so happy to have been introduced to David and his story as a teenage PANS patient. It's brave to put yourself out there to spread awareness 🥰
this sounds downright exhausting. 😔 You are incredibly strong David! ❤🙏
Haven’t watched the video yet but omg!! Finally this is being talked about more! I got PANDAS when i was 13 after getting strep throat and developed Tourette’s from it. Back then so many doctors didn’t even believe PANDAS/PANS was real, it was only because my psychiatrist’s doctor also experienced it that I got diagnosed. Just so so happy to see this so the word can be spread! 💜
I read this same thing about ME - also such a misunderstood and judged upon diagnosis - "normal", active, happy, young people suddenly overnight (often after being sick with the flu) becoming sick, tired, depressed, overly sensitive of sound and light, and so on.. It's so scary, we need more research in this field of brain damage for sure! And videos like this, educating people. Spreading knowledge leads to understanding, tolerance and compassion. ❤️
I have CFS/ME as well. It has gotten worse as I’ve gotten older. I can’t even stand myself sometimes. I just want to sit in a room alone with quiet and darkness all the time because everything is so overstimulating. Add on so much pain, inflammation, crippling exhaustion, etc. 😢 (gentle calm hugs to you)
@@alisonbufarale3406 I don't have ME myself. I feel for you. I heard about patients with ME that got better with the use of cancer medicine, hoping more people can get treatment soon if statistics show it works.
What is ME?
@@emilybach chronic fatigue syndrome
i got pans/Pandas aswell but my doctors dont know about it (German doctors)
They see my Depression And my Tics and wont give me a diagnosis but it is so clear that it is Pandas for myself... So i am currently untreated and i feel not understood...
It is thanks to you that the awareness of Pans/Pandas might reach out even in to other countries.
So Hopefully People like us dont need to suffer as much as we do in the Future.
So thanks a lot
Look up Miroslav Kovacevic, MD in Illinois, USA. He was one of the first treating doctors for PANS/PANDAS. You might find him on youtube presenting. I know he consults with people all over Europe, Asia, etc. He will guide your local doctor on treatment. IVIG seems to be the best chance of remission. He said our teen has a 75% chance of getting better if we do IVIG. I'm cautiously optimistic. Best to you
David is clearly and smart and sensitive person, I was surprised to find out he flares up everyday because he carries himself very well throughout the video. Best of luck man, go and enjoy your life
Wow. This interview brought a lot of emotions out. I relate to this all so much as a 28 year old woman whose never been diagnosed or really given it much thought. I dealt with so many uncontrollable intrusive thoughts as a child, also intertwined with ocd tendencies, that made me feel like a truly evil human. Thankfully my ocd tendencies mellowed out with age, so I was never diagnosed. Such hard things to experience, especially when you don’t have a name for it or any info…. Very educational video. I applaud you for such honesty David!! 😊
It's very encouraging to see more and more of these stories becoming public as we, the original PANDAS kids, become adults. Way to go, David! Thanks for sharing your story 🙌
Thank you for talking about this. I have OCD too (mine developed most likely as a result of many traumatic experiences during my childhood) and it is absolute torture. "Rocking back and forth and just crying and pleading for mercy" really resonated with me because it sums it up quite well. Thankfully, I'm a bit better now thanks to medication and therapy, but the disease is still here and I still have to actively fight against it all the time, which is very exhausting. I wish you the best, may you find some peace of mind.
Loving this Family. I don’t want to assume how somone is living, The whole family looks so supportive, understanding, and carrying.
What a phenomenal young man. Such courage to do this and spread awareness I had not heard of this so thanks for educating me! You seem like a really awesome down to earth person. You are in no way evil, it seems you care more than the majority of humans. Your parents are inspiring and amazing for raising such an intelligent and thoughtful person. The world needs more people like you, not less of you. Thank you for sharing your story to us all. 💜
An OCD therapist mentioned what PANDAS is too! Glad it’s gaining recognition bc their experiences are valid
What an incredible gift this interview is to our community. David's story is like a hand reaching out in the darkness to let others know they are not alone. As a pandas/pans parent all I have to offer is gratitude to David and his family for sharing so openly. Thank you.
what a wonderful video. i’ve never seen a video about PANDAS/PANS that talks about the true horrors you go through as a child living with such an awful disease. living with PANDAS made me feel humiliated, embarrassed and hurt and knowing that there are other people who have gone through the same things i have gone through makes me feel seen. i’ve struggled with PANDAS for over a decade, im now in highschool and still deal with the intrusive thoughts and ocd. the feeling of knowing you’re in a flare and not being able to do anything is an awful feeling that i relate to so much. the feeling of utter shame is a feeling that i have felt for as long as i can remember. i’ve lost friends and family due to my behaviors regarding rage and OCD and intrusive thoughts leading me to do actions i would never do if i wasn’t in a flare. it’s important to know that in reality we are sick. we can’t help the things we do or think and it’s awful. thank you for having the courage to go on SBSK and talk about your experiences.
My father got a flu when he was 40, then had a breakdown - extreme tension and anxiety and then also depression - and he never recovered.
I remember me and my sister - we were little - and crying bitterly feeling our life had collapsed.
A creator named Thistrippyhippie also has PANDAS! I never thought I’d see that title here!
Yess!! I watched evie meg aka thistrippyhippy as well. And am glad to learn from both of them about this situation
As someone with PANS, thank you so much for doing this and thanks to David and his parents!! I'm always looking for videos and articles to send to family members and friends and I think this has to be the best spotlight of the condition we've had yet. These types of interviews are so needed and I'm planning on making some videos like this too about the condition when I heal. 🙏 I'm biased with having PANS but I think this condition and the chronic illnesses that cause it like Lyme disease, Bartonella, and mold toxicity are the most under-recognized health conditions there are right now.
I got PANS in 2019 (as an adult onset of PANS at age 22) caused by Bartonella, on a day I did a session in an infrared sauna, which must have really brought out the infection all at once to the point that it overwhelmed my immune system and triggered the PANS autoimmunity. When it first happened I thought how strange and altered I felt all of a sudden must just be some temporary side effect of doing the sauna and I just needed to get some sleep and I would feel normal again the next day, but it didn't go away the next day, or the day after that, or the day after that, and 3 and a half years later now I'm still stuck in this state and total living nightmare. It took a year and a half just learn about PANS and find that this was what happened to me, then another 8 months to find that Bartonella was the root cause, and now I've been treating it for over a year. But it's a long and difficult and expensive process. Anyway, the last 3 and half years have been an absolutely surreal and insane journey to say the least and I literally became homeless and had to stay in homeless shelters for a year and a half until just a couple months ago because my family hasn't been willing to try to learn about the condition and help me, and because the level of disability has meant I haven't been able to work. To share some of what this condition can become for adults, who aren't as rare as they say unfortunately.
There's no way to describe or overstate what this condition is, but my short way of saying it is that PANS is what would happen if it was possible for your soul to literally be ripped out of your body. And it's just one of the worst things that can physically happen to a human being. It turns all of life into a minefield where doing anything- making some food, brushing your teeth, just walking around, can become traumatizing. I can't imagine anything more extreme than this condition, the way it can just completely wreck your life out of the blue and take from you all of what's the most basic and fundamental- your mind, your personality, your self-awareness… It's just such an absurd and surreal condition in every way and the most trapped, isolating, complete living nightmare experience possible - It's just so completely terrible and it's surreal that a condition like this is able to exist let alone that there's also still so little mainstream awareness and coverage for treatment for it.
Also one other thing I want to share while I'm writing this that I haven't seen get as much discussion as I think it deserves - it seems like the obvious question at the end of the day for PANS should be - Why is a condition this extreme also on the rise so much right now? (Which plenty of PANS doctors say and the infectious causes clearly are.) And one way of thinking about it that's been helpful for me is that PANS and the conditions that cause it like Lyme disease, Bartonella, and mold toxicity are like the chronic illnesses of climate change in a way with the parallel between the way we've polluted the environment with the way we've polluted our own bodies through all of the modern forms of toxicity we're exposed to that human beings and our immune systems never encountered before the last few decades. We've been living with infections like Lyme and Bartonella since the beginning of time but the difference now is the world is all of a sudden exponentially more toxic from the thousands of untested chemicals in pretty much everything and pesticides in foods, EMFs, and mold toxicity, which I've heard explained as being on the rise because of cheap mass produced building materials becoming more susceptible to mold. For me, before I got PANS I've had severe chemical sensitivities for most of my life, and since I got PANS when I have reactions to chemicals it also flares up my PANS symptoms. So anyway, maybe that is all basically obvious information, but there don't seem to be many people talking about the big picture of these conditions that way. That a condition as extreme as PANS seems to be on the rise so much right now should be like a giant indicator and alarm bell going off telling us that a lot of things are very broken and showing us exactly how toxic the world is right now.
And also that PANDAS/PANS are pediatric conditions and affect kids' immune systems that are still developing - to me that's like we've reached the breaking point of where young people and new generations just can't grow up in and tolerate the level of toxicity in the world anymore. It's at a point where it's too much now to grow up in because it's just at a point that's unnatural for human beings. PANS and PANDAS unless I really misunderstand it are like the immune system becoming overwhelmed and overloaded to the point of breaking down and losing track of what are the infections or toxins and what's the body.
So anyway, just want to say that too because I think that's the most important part of these conditions. These conditions are a much bigger problem than just needing to prescribe people antibiotics or just awareness about the names PANS/PANDAS (which are also really not very good names but that's another essay) and I think are going to take a lot more bigger picture thinking to actually reverse the trend of and solve long-term.
I've been trying to have my child diagnosed with this for years. I remember the exact day she became another person. This gives me hope to keep searching for help.
Cunningham pannel
Look up Miroslav Kovacevic, MD in Illinois, USA. He was one of the first treating doctors for PANS/PANDAS. You might find him on youtube presenting. I know he consults with people all over the US, Canada, Europe, Asia, etc. He will guide your local doctor on treatment. We are not in Illinois but did a video consult. IVIG seems to give the best chance of remission. He said our PANDAS teen has a 75% chance of getting better if we do IVIG. I'm cautiously optimistic. Best to you.
It’s hard to watch you suffer like that, but even harder to imagine having a friend or relative or yourself going through that and not knowing what’s wrong. Thank you SO MUCH for educating the public on this type of illness, which I’m sure is often taken to be literal demonic possession, and hence not treated properly.
I hope that you feel confident in yourself for making an impact, more than most people will make in their lives!
Thank you for bringing this to light. A little girl in our extended community developed this and her mom didn't know what happened. Her daughter had strep and then was never the same. We watched her heartbreaking journey to the diagnosis and she was SO relieved once it had a name. But that didn't change the damage. God bless all the kids and parents dealing with this and hoping more and more doctors are aware. The kids are not crazy, they are sick. Thank you again for this interview.
I have PANDAS due to strep in my childhood. I had multiple cases of strep growing up. PANDAS caused the onset of my severe OCD. I agree with him on so many levels. I get him and hope the best for him.
I recognize that it took courage for David to reach out to share his story. It reminds me about the woman that wrote the book “brain on fire, my month of madness” by Sahannah Cahalan. I saw her and her father on a talk show discussing an experience similar. I haven’t read the book yet, but now I’m motivated to do so.
Thank you to David and his parents for taking the time to explain their experience.
Yeah, the condition she went through is also a type of Autoimmune Encephalitis, PANS and PANDAS are Basal Ganglia Encephalitis where dopamine receptors are affected, and that condition is NMDA receptor Encephalitis
Thank you brave soul for bringing awareness to this disorder.
I CANNOT THANK YOU ENOUGH! i have pandas and developed sudden onset ocd aswell and i suffer endlessly so seeing this be represented makes me cry.
Thank you for interviewing this wonderful young man and his amazing parents. I wasn't even aware that a form of OCD could be caused from an autoimmune disease. I believe that you're helping countless people who suffer from this by sharing David's story
Thank you for sharing your experience. I read a book about a young man with PANS/PANDAS that was written by his Mom. The things you go through were heart wrenching. Thank you for sharing your experiences. (I too had lyme)
Thanks for bringing awareness to this syndrome. Many doctors don't know about it or deny it's existence. They'd rather put children on antipsychotic drugs like risperidone. My son is autistic and I learned about PANS/PANDAS from Mary Barbera, a BCBA I follow. Her adult autistic son suffers from it. She has seen many others in her line of work. She would be called in to deal with aggressive behaviors and as soon as she walked in she could see the student would have TICS and other common signs. Usually within the last couple weeks they or someone in the family had strep. I wonder how many people over the years have been heavily medicated and/or institutionalized due to this when a long course of antibiotics or IVIg could have relieved their symptoms. So sad.
What a difficult thing, having to fight your own mind and body. Sending a lot of light to the whole family
I want people to know not all forms of Lyme are tested for. There are multiple kinds of Lyme bacteria and co-infections that cause similar symptoms but insurance doesn’t cover and doctors don’t test for them. Find a doctor who listens! I am so happy this family is whole and able to help others. Bless You! I hope you can find peace. ❤
Microdosing psilocybin is something they should look into if they haven't already.
The only thing that helped me feel "normal" again after having brain damage is psilocybin. People have been using it to heal from brain damage due to covid as well
His parents seem so very sweet and kind and helpful.
This.
@@HellLady7869 microdosing is not tripping balls. Microdosing you're not even "tripping" at all.
I descovered this in 1975. I would eat a half a 3" diameter cubensis mushroom daily. Never tripped. But i would breeze through the day calm confident and clear headed. The first time in my life i could and did get straight A's in school and wasn't bored depressed and angry at the world. I have been trying to tell people about this all my life and i also have been telling everyone that psilocybin grows brain cells and makes you smarter. Now the scientific world is proving what I have always believed to be the actual truth.
@@michaelshultz2540 love that :)
100% 👍
Oof. So rough on this one. I deal with multiple mental health conditions, but one of them is OCD, and I completely understand the depth of darkness that can flood your mind with intrusive thoughts. It doesn't even have to be the same level... it's just how dark your mind can possibly take it. I've recently started *neurofeedback therapy* as a way to "re-wire" my brain to be able to work through these things on my own. I highly recommend looking into it, to see if that's something that could help. It has shown positive effects for people with anxiety, depression, ADHD, PTSD, brain injuries, people who need help with pain management, other mental disorders, etc.
I was in awe hearing that, on top of PANS/PANDAS, he also has chronic lyme disease... I really feel for David, his mom, his dad, his whole family. It is comforting to know that David has a family who stepped up for him and became advocates for his health. It's a full time job to manage it himself, as it is for his parents, I'm sure. While I've heard of PANDAS, this is the most I've learned about it; even how to recognize it. Thank you, David, for sharing your story with us!
Thanks for sharing. My heart goes out to David and his family As a Mom I can't begin to imagine. He is such a nice and handsome young man. Prayers for his treatment and improvement 🙏 💛
Poor guy, it saddens me to see this. Hang in there David! You got amazing people on your side it seems. Much love. :)
wow that rly must've been so traumatic to experience such a quick switch in behavior... thank u sm for spreading awareness abt this!! I'm happy that they found treatment instead of dismissing things because David is still the same person at the end of the day, just with more struggles than before. i rly hope more research comes out regarding PANS/PANDAS because this was really profound
Hi Chris, I had a friend at summer camp in 2010 who had PANDAS-induced OCD. Thanks for sharing this.
My son, also named David, experienced sudden onset OCD at 14, too. It was a nightmare! As in this family, I couldn’t find proper care for my son. He was prescribed a couple of meds to help take the edge off. No one in our area did therapy to help him overcome his obsession (the worst one was a fear of his younger sister). So I bought a book and became his therapist. His father thought he was just “naughty” and was not helpful or supportive. It was a long haul, but he is (about 20 years later) doing pretty well, with only manageable symptoms. He has a great relationship with his younger sister now. I don’t know if it was PANDAS or what. The doctors never said.
Best wishes to David and his wonderful parents!
@@KimberlyCotterdoes he still has OCD
This interview is of the highest importance in spreading awarenes,not 9nly of the suffering but also,intense research must be instituted immediately to develope treatment and of course a cure
David, thank you so so much for sharing your story. It’s truly more influential than you may think.
As someone who has a bachelors in both psychology and neuroscience, and who works at a neuropsychiatric clinic now, I’m pretty shocked I have never heard of this variation of OCD. I hope this will change in the psychology world in the future.
Please know that people who share their story like you are here is immense in helping others know that they are not alone in their experiences. You’re awesome!
Can't imagine the stress this family has gone through. Thank God they are so close and supportive of David and each other.
Thank you David for spreading awareness about PANS/PANDAS. I have heard about PANDAS before but I wasn’t aware that it could cause all these symptoms and that it was so serious. Also, thank you for allowing us to see the videos of your flare ups. That is so personal and I can’t imagine what you are thinking or feeling while going through that. There definitely needs to be a lot more awareness and education about PANS/PANDAS because I’m sure a lot of people don’t know about this disease. If more people did then maybe it wouldn’t get misdiagnosed as much. Take care.
Thank you for doing this, David and your parents! You seem like amazing people and for the first time in these interviews I was like “I would really like to meet you, you are an amazing family”. I hope that you all know how much work you are doing, how amazing you are for dealing with this and still be honest, friendly, humble people who show so much love. May the shame and trauma be lightened for you in the future and may you find pride in yourself for enduring hardship and being great humans. All the best!
Wow. Incredible interview with an incredible man. Shook me to the core seeing the mental pain he endures.
Having never heard of PANS/PANDAS before, I am intrigued to do more research to understand it better. I hope that along the line more research can be done and a treatment can be found. ❤
We feel your pain !!! We have quick onset PANDAS/PANS ( both my boys now 23 & 25) I'm 55 and we still have a lot of problems ... hallucinations when sick ( bugs crawling on us, incoming missiles, people running after us with guns, driving while hallucination, walking for miles not knowing where we are, walking into neighbors houses in the middle of the night ) major OCD ( germs, food, bathing too much or not at all, horrible intrusive thoughts, bed wetting...the list goes on...it's horrible and insurance won't cover the IVIG treatment we need.
I remember when both boys would get sick...I'd have to lock myself in a bedroom with both of them for hours...we felt so alone...I felt so alone.
It doesn't have to just be strep....our brains are affected by any illness.
David, watching the films of your initial flare-ups was so hard for me because it reminded me of my first OCD flare. I know this feeling. I just wanted to let you know you're not alone and I'm so glad you've got good family support. ❤️
I can't ignore how cute this guy is 🥰
He is, I'm an old gal, but he is handsome 😉
He kinda looks like Harry Styles
That feeling described at 13:14 is too real. I have OCD and the front part of my brain feels so numb but at the same time it feels like there's a lot of pressure on it, like someone is pushing on it. The brain fog that comes with that makes concentration and feeling emotions difficult :(
Thank you for sharing your story David and for helping spread awareness on PANS/PANDAS and OCD.
Thanks so much David for providing your perspective. PANDAS is most often presented through extremely dramatic news programs and not really in terms of what the first person experience is, so thank you!!! I’ve had a mental health crisis due to anxiety and depression but I cannot imagine how much anguish there would be in not being able to “fix it” with the diagnosis and an SSRI.
Such lovely parents! More power to him & his family.
The Brain & Mind are truly complex.
I'm once again so grateful that you let people tell their own stories with their own words. In a lot of mental health spaces, there seems to be an invisible script for the "right" way to talk about things that ends up being alienating or dampen the severity of how issues can actually affect you.
This video really reminded me of the experience of having a family member that struggled with severe OCD that appeared in his teens and I really feel for David and his family. Their words really resonated with my experience. Hoping the best for the family in the video 💖
as someone with OCD, the whole part where he says “With my brain at least, it always tries to… at least the intrusive thoughts, they always try to get darker. You know, it’s like this, ‘What can we do to make you feel like more of a bad person?’”
god… i feel that all too well. my brain always tries to figure out new things to make me feel worse about myself. i get that man
Allison Raskin from Just Between Us (UA-cam and podcast) has been really open about her OCD from PANS/PANDAS and has talked to her Mom about it. Her onset was at like 3yrs old so hearing the difference between her and someone who had the onset later in childhood is very interesting bc she doesn’t remember the onset fully herself.
Thank you so, so much David for telling your story. I had no idea PANDAS was a thing-and such a painful thing at that. My heart goes out to you and your family. To put it lightly, you are a trooper.
I had a sudden onset of psychosis and other neuropsychiatric symptoms at 15. At that time, I was also diagnosed with OCD. Was fine one week, the next not so much. No one knew about PANS/PANDAS, but it is suspected that I could have it. His story really resonates with me. I can relate a lot. Thank you so much for talking about this condition.
I have ocd (not pandas or pans related) and i found ERP therapy extremely helpful in my recovery journey. You may want to look into it, it can help you with managing long term.
Yes yes yes. He need to look into it. Very very helpful for him. Yes.
So glad to see this here. As a mother of a child with this diagnosis it is devastating to watch your child break and regress overnight. There is hope... Your child can get better. 🙏🙏
God bless him. I had never heard of Pans/Pandas. Thank you for this interview. His parents are amazing.